From Silence to Song

My Future Canadian

2012-01-19T22:28:00.000-06:00

CJ is doing amazingly well with his hearing and being mainstreamed and adjusting to life and...well, you get the idea. The list goes on. On occasion, no matter how well we have him hearing, funny things will happen. The following is a conversation that we had on Monday that highlights some of the funny situations that happen when your hearing is just a little off.

CJ: Mom! I know what I wanna' be when I grow up.
Me: Really? What is that?
CJ: A Canadian!
Me: (a little confused) Why?
CJ: Because I'm funny and I like to make people laugh. (The kid literally memorizes entire joke books.)
Me: Oh. You mean a comedian?
CJ: Yes. A Canadian. That's what I just said.

I Took Down the List of Liam's Words

2012-01-19T22:26:00.000-06:00

It was time to take down my sidebar that listed all of the words Liam can say or sign or both. The fact is that he's moving along at such a rapid pace that I can't possibly fit all of his wonderful words into one sidebar. That's surely nothing to complain about, right?

I think my favorite words he says now are Aiden, Amen, Bus, and All Done. He says them so well that pretty much anyone can understand what he's saying when he says them. He doesn't have a ton of words that everyone can really understand, but that will come. What words he can't say he can sign well...or he just makes up a sign.

Right after Thanksgiving, I was walking with him through Target with some friends visiting from TX and we had Liam with us. Target has all of their finest lingerie on an end cap right on the main strip of the store. It would just figure that the bras and thongs are all in crazy bright day glow colors, which inevitably catch the attention of adorable little boys. Nice. Anyway, we haven't taught Liam the signs for bra and underwear yet. As we walked by the bras, his face lit up as he loudly said "Oooooh!" while pointing to his own breast area with both pointer fingers. HUGE grin on his face. Just four or five feet down were the above mentioned thongs. Again he got that same grin and loudly said "Ooooooh!" while pointing to his groin area. Nice, Liam. Very nice.

Explantation and Re-implantation For Liam

2012-01-19T09:15:00.001-06:00

Liam went in for his re-implantation surgery and I'm pleased to say it went MUCH better. I know it's been a while since we've updated and there is a LOT to share, so let's just do bullet points to be sure I don't miss too much.

Surgery should have taken 2 1/2 hours, but actually took 5.
The doctor thought he was only able to get 8 electrodes in (and he had to use a different device, but that's okay), but at activation, we found that he has TEN! Wahooo!
Recovery went quickly, and Liam did awesome. He had some trouble with his oxygen levels when he was waking up, but was fine by the end of the second day.
Liam is WILLINGLY wearing his hearing aid and processor for several hours at a time every day.
At the end of December, he turned three so the school district took over his education. He now goes to school full time four days a week and a half day on the fifth day so he can go to physical therapy in the afternoon.
He's starting to have a couple of words here and there that people can actually understand.

I think those are the major highlights. There is more to share and I'll get to them. Now that Liam is in school more and I don't have to take him (thank you school bus driver lady!), I can devote more time to blogging. I'm pretty excited about that because I'm dying dying dying to start writing a book. More to come SOON!

You Never Know Until You Walk in Another's Moccassins

2011-12-01T10:02:00.000-06:00

I received a comment on my blog recently from another mom asking me to contact her about our Baby Ears blog. I e-mailed her and received the following response:

Thank you for the reply Aimee!

The reason I have reached out to you is because of your blog! I myself am a mother to a quirky little 6 year old, Lily. She is my only child, and my whole world (I’m sure you know the feeling!)

The very beginning of Lily’s life was a little more turbulent than I would have hoped for. When Lily was just 31/2 months old, I was diagnosed with Mesothelioma; a type of cancer that kills 90-95% of those who have it. As I’m sure you can imagine, the first thing that came to mind when I was diagnosed was my baby girl and how I wasn’t going to be able to watch her grow up.

After all that, I’m still here 6 years later and cancer free! I'd like to turn my pain into purpose and become someone that other parents can look to for guidance, inspiration, and hope in situations like my own. I contacted you because I feel that your website would be an excellent place for me to share my story. Your visitors are the exact type of people I'm trying to reach out to; these are all the types of people who could gain something from my story.

Would you consider putting link to my blog on your site as a resource for your readers? Or, if there are other ideas you have about ways we could work together, I’d love to hear them! I hope you are interested. :)

If you'd like, check out my blog: http://www.mesothelioma.com/blog/authors/heather/

It details the struggles I went through as a new mom diagnosed with cancer.

Thanks so much for your time. I look forward to hearing from you soon!

Best,
Heather

I will be inviting Heather to be a guest poster here at Baby Ears to share her story. While her child's challenges are entirely different from the ones we address here, she is yet another mom who can relate so deeply to what it feels like to have a child with a big fat scary diagnosis. I hope you'll consider searching out her blog and perhaps sharing it with others that you feel could also benefit from it.

Well, Hmmm....Here are the Updates...For What They're Worth

2011-11-30T15:36:00.001-06:00

I can't believe how long it's been since I've posted. I'm ashamed really. Things have been crazy busy, and the holiday season just means they're going to get crazier. On top of that, we learned that my husband's company is dissolving his department and there will be no openings elsewhere. Anyone have use for a good chemical engineer with emphasis on metrology, quality assurance, and statistics? Let me know.

Okay, so what you really want to know about. The boys have had their cochlear implants. There is good news, and as always a little bit of bad news. Let's start with the good news. CJ's implant is working very well. It will require some more tweaking, but it does work and he will hear okay with it. He tolerated the surgery well, healed well, and is eager to get back to his routine again. I'm eager to get him back to routine, too.

And then there's Liam. His surgery went well and he recovered quickly...too quickly in my opinion. We took him Monday to activate it and that's where the bad news came in. He can hear with it, but he can't control his head or body when it's on. An X-ray was performed followed by a CT scan today and both confirmed what the doctor feared had happened.

Liam's internal anatomy is very unusual. Highly unusual. Extremely unusual. (Are you getting the idea?) There is no bone between the bottom of his cochleas and his auditory canal, and a portion of the implant has landed in the auditory canal. CJ has the same anatomy, but by some miracle, he hasn't had this same problem.

The doctor is going to have to remove the implant and try to re-insert it so that it goes into the cochlea rather than the auditory canal. With the spinal fluid gusher that Liam has (caused because there is no bone to control the fluid), there is no way to see what is happening in there. There is also no way to know for sure that the implant has gone in the intended direction. It's possible that the doctor will have to push it in as far as he knows for sure that he can and leave the rest out. That leads to other issues like not having enough electrodes in the cochlea, but we can work around those issues.

The whole situation is very complicated, and admittedly a little bit scary, but it WILL be resolved. This is a very rare (never really seen) situation, so I guess I can be excited that Liam gets to be some sort of pioneer. I swear I should just call TLC and get my own tv show.

Anyway, those are the major updates for now. Liam's IEP is coming up, so I'll also have lots of information about that. Oh! And I promise to be MUCH better about posting more regularly.

The Dates Are Set!!

2011-10-21T13:21:00.000-05:00

I know it's been a while since I've posted. I've been busy, busy, busy and a little under the weather (more on that in the next post). Anyway, I would be remiss if I failed to update on CJ and Liam's cochlear implant schedules.

CJ will be going this coming Tuesday morning to get his left ear implanted. He is beyond thrilled and can't wait to get on with the show. I think he'll initially be a little frustrated because it's not going to sound like the other ear right away. In time, though, he'll finally be hearing well with both ears.

Liam's implant is scheduled for just two weeks after CJ. That should keep me good and busy, right? We wanted to do both ears at once, but there is a glitch in his anatomy (the same glitch CJ has actually) that puts him at a really high risk for meningitis and other difficult complications. We all agreed that it's in his best interest to only do one ear at a time.

So, that's our biggest update. Just a few days away for CJ, and just a couple of weeks for Liam. I'm pretty calm right now, but I think it just hasn't all really sunk in yet.

You Mean There's More Like Me? Who Knew???

2011-09-06T10:10:00.000-05:00

We all want to feel a part of something, like we're "normal" or at least not complete aliens. While we all love to be individuals, I think we also often try hard to "blend in" or feel like there are other people like us. I think that's what being human is. I remember in junior high just praying that no one would find one single thing about me that was different because a day of blending in meant a day of flying under the bully radar. In high school, I started to come into my own a little bit and was more comfortable in my skin. Instead of trying to blend in with everyone, I tried to find people who shared similar interests as me and become friends with them. I guess that's where the concept of school clubs comes into play.

Not much has changed I guess because I still find myself wanting to find other people "like me". They don't have to have a large family or cute curly brown hair or freckles or always see the world through rose colored glasses. They don't have to share my faith or my love of the color blue. They don't even have to be the kind of people who get all swoony when they watch shows like Glee or The Bachelor or go to a Blake Shelton concert. The people I'm looking for to be "like me" are other hearing parents who are working their rears off to make the right choices for their Deaf/hard of hearing children. With technology and the ability to detect hearing loss so much earlier, it seems to be a growing club. The trick is finding the parents who are willing to speak out about it, to share their joys and woes, their triumphs, and their steps back.

When I started this blog the day we learned about Liam's hearing loss, I thought it was to help other people in my shoes. I thought I would be some sort of "inspiration" and source of hope to them. I'd already walked the path with CJ, so I thought I might have some good insights to offer. I also thought only maybe one or two people would read it because, really, who cares about what some strange woman behind a computer screen has to say??

What I didn't realize at the time was that my blog would bring people who are like me to me. Every time I'd get a new follower, I'd click on them to learn whatever I could about them from their info. page. If they had a blog, I'd find it and add it to my read list. Eventually I started getting the occasional comment here and there. If it wasn't someone I knew, I'd do the same thing I do with my followers list. Slowly, gradually, little by little, I noticed something. The people posting here or following here are like me. There are more people like me than I knew. I'm not some island somewhere with thousands of ships floating by. I'm one of many.

I think one of the greatest points in which I realized this was a few months ago at the Walk For Hearing in our area. Another mom came up to me and asked, "Do you blog?" I said yes and she proudly said, "I follow your blog". For just a minute, I felt like I was not only the only one like me, but I might even be some sort of celebrity among people like me. Don't worry. It didn't go to my head. I quickly came back to earth and realized that the only people I'm really a celebrity to are my kids, and they are pretty sure I'm usually a celebrity failure. Recently that same mom who came up to me has been feeling attacked for her choice to implant her child as well as give her ASL. Here she is. She and her sweet husband are parents just like Byron and me just trying to do what's best for her child in a world where there is no "right" answer for children like her daughter. They make a decision, one that was anything but easy. They follow their hearts. They share their experiences. They get attacked for it for one reason or another by people who have never met them nor their child nor truly walked in their shoes. And, once again, those parents are left feeling alone like there are no others like them. Interestingly, though, more and more parents are stepping up and sharing who they are and that they, too, have felt alone on their path and is if no one out there was "like them" and that they are just looking for others with whom they could share.

Allow my to introduce myself. My name is Aimee. If you are a parent of a child with special needs, especially a special need that doesn't necessarily have any right answer, I'm like you. If you have children with hearing loss and have taught them sign language despite oralists insisting it was the wrong choice, I'm like you. If you have implanted your hearing impaired child despite the Deaf community begging you not to because it will ruin your child and break his spirit, I'm like you. If you have held your child tightly and cried because you feel at a loss for how to reach them and make the right choices for them, I'm like you. If you've mourned the loss of your child's hearing, I'm like you. If you have ever found yourself angry and frustrated and heartbroken and hopeful and ready to take on the world all at the same time, I'm like you. If you've ever sat through your child's IFSP or IEP meeting and cried because you're just sure there's more that can be done, but you don't know what it is, I'm like you. If you sat in that same IFSP or IEP meeting and felt more full of pride at hearing your child's accomplishment than ever before, I'm like you. If you've ever rejoiced because your child uttered a word, any word, I'm like you. If you have ever lost sleep at night just wondering what more you can do and questioning every single choice you've ever made on behalf of your child, I'm like you. I'm like you. I'm like you, and I'm not afraid to stand with you.

In the end, it makes no difference which path we choose for our children. The specific choices we make for our kids may be the only thing about us that is really all the different anyway. In so many ways, we are alike. Short, tall, hearing, Deaf, sighted, blind, autistic, "typical"...none of that matters. We are all human. And in that sense, we are all like each other. And we need each other.

When You Find Out Who Your Friends Are

2011-08-29T16:30:00.001-05:00

I've mentioned lots of times about the fact that CJ has always struggled with making friends his own age. He does great with adults, probably because they speak slowly and clearly for him and are patient when he needs them to repeat what they say. Adults also tend to accept his quirkiness better than peers his own age.

Given the fact that he has to work so hard to make friends, it was a really big deal when he was invited to a birthday party for a little girl at church. Regan is just a few months older than him, and your typical happy-go-lucky always smiling little girl. She's about as cute as any kiddo could ever be, and she treats CJ like a regular kid.

CJ put a LOT of thought into what he wanted to get her for her birthday. First he wanted to get her a talking parrot to sit on her shoulder, and then he wanted to get her some fish. With a little encouragement in another direction, he finally settled on some lovely hairbands and a necklace with five rings in it. He was SO PROUD of his gift! Byron and I were out of town on the day of the party, so we didn't get to hear how it went. He just told us he had a good day and didn't go too far into details.

On Saturday, I learned that CJ truly has a great friend in Regan. We were at a mutual pool party to sort of bid the summer farewell, and she came running up to me and we had the following conversation:
Regan: Sister SuperMom, my mom said if it's okay with you, I can learn.
Me: Learn what?
Regan: Well, at my party CJ couldn't hear me because he had to take his ears off. I tried to tell him it was time for cake and presents, but I guess he didn't understand what I said. Then, he came over later and said, "What? You started without me?". I think he was sad because he missed it. Does he always have to take off his ears to swim?
Me: Well, he'll be able to get his new implant a little bit wet, but he'll usually have to take it all off for swimming.
Regan: Well, that's why I need to learn.
Me: Learn what?
R: Sign language! If I learn sign language, CJ will be able to understand me when we're at the pool and we can play together.
Me: Regan, if you want to learn sign language, I will teach you ANYTHING you want to know!
Regan: Yay! THANK YOU, Sister SuperMom!!!

This may seem like a simple conversation to some, but it was a really important conversation in terms of CJ's life. He has a real friend. She noticed a need, and didn't just make fun of him for it. Instead, she took it upon herself to do something to make it better.

It is truly a blessing when you find out who your friends are!

Our Big Announcement

2011-08-19T13:54:00.001-05:00

So, Byron and I have been back and forth on this for a while. Sometimes we were fence sitting and other times we were both on the same page with one decision or another. We thought it was going to happen back in January, but things fell through and the doctor said it was just bad timing and to think about what we wanted to do and get back to him.

We decided to start trying to make it happen again so that we could time it around the kids' (especially Liam and CJ's) school schedules, but we just couldn't ever get it right. The timing would be off, or someone got hit with a fly ball which put us behind or...well, you get the idea. And, we weren't putting the effort into it that we probably needed to in order to make it happen. Finally, shortly before our trip to CT, we decided to really work hard on it every single day. I kept track of dates and times and recorded all conversations and everything and just really even put a lot of prayer into it asking Heavenly Father to please let it happen if it was His plan for our family.

Finally I got the most amazing phone call from the doctor today. The test results were in and all the documentation was double checked, and it seems that there is going to be a new set of ears born into our family!!! We don't know the exact date yet, but BOTH Liam and CJ have been approved for cochlear implants!!! This will be CJ's second, making him bilaterally implanted and it will be Liam's first. It's possible that we'll do both of Liam's ears at the same time. The dr. needs to look at the MRI and CT scans from his hospital stay back in June.

Anyway, there you go. That's my little announcement. It's kind of a big deal. My boys are going to hear!!!!

The Ultimate Boy Scout

2011-08-06T12:40:00.000-05:00

Two sometimes humorous things about having Deaf children are that they are are often loud and that they can be very literal. Sometimes this leads to frustration and confusion in conversations, but now and then, it leads to a really good laugh. Yesterday, it was a pretty good chuckle...at least on my end of the conversation.

I took the kids with me to look for a backpack with wheels for CJ's to take to school. He always drags his backpacks, which then leads to big holes in the bottom and the need to purchase a new one. One of the stores we looked into was Target. Due to the fact that it's tax free weekend for shopping for school supplies, the school was crowded as expected.

We managed to survive the whole shopping trip and made it to the check out line with no scars or battle wounds, which was a pretty impressive feat in itself. Just as we were leaving, CJ noticed an elderly woman which must have led to a rapid series of thought processes that, in turn, led him to loudly blurt out "Mom, when I become a boy scout, I can help old ladies like her cross the street!". I probably should have been embarrassed and corrected him by suggesting that we not call people old in public and loudly, but the seriousness on his face just made me smile with a little giggle inside and say simply "Yep. You sure can." His response to that: "I'm going to be a GREAT boy scout, Mom!" Actually, I think he's right. He will be an amazing boy scout.

Liam's Exciting Pulmonology Update

2011-08-05T08:26:00.002-05:00

Liam went to a routine pulmonology appointment yesterday, and I'll admit that I had high hopes going into it. Can I just say that every single thing I'd hoped for AND MORE was met at this appointment?!? It was amazing. Brief, but wonderful all the same.

First of all, the biggest news. Liam has been declared free of his NEHI symptoms!!!! He may develop asthma later on down the line as is common with NEHI kids, but I can deal with that. I'm a pro at asthma by now. He also still has a little trouble coming out of anesthesia, but he goes inpatient for surgeries, so that will be fine as well. The doctor and I had fully expected him to make many, many visits to doctors and hospitals throughout the winter, but he only went three times all year. One of those times was a follow-up to his sleep study. I can totally handle that. We are now down to just once a year to say hello unless something happens and he gets really sick.

I decided to take a risk and talk to the pulmonologist about Liam's cochlear implant surgery. It's been a royal pain getting it all set up, but it looks like we're finally almost there. The ENT wanted to do one ear now and go back in later for the other ear because each surgery is three hours and he was afraid to have him under for a full six. The recovery is easier with just doing both at once, and it's what I really wanted so I asked the pulmonologist what he thought. He said that the ENT gets the final say because he has to feel comfortable doing it. BUT, he also said he'd call the ENT and recommend doing both ears at once. This means Liam gets to be free of O2, free of constant doctor appointments, AND has a fighting chance at finding his voice and succeeding in the hearing world.

A Fun New Skill

2011-07-22T11:20:00.000-05:00

Liam really is making progress by leaps and bounds and we couldn't be happier. Last night, I realized that he's finally mastered an exciting new skill. He can play. I mean, it's not like he didn't play before, but he didn't know how to really play with toys appropriately like a typical two year old would do.

Rachel's birthday party was last night, and we had it at the pool. I keep a little bag of the McDonald's Live dolls in my pool bag for the kids to play with. Liam pulled all of the dolls out and had them pretending to walk and talk with each other. We've worked on this with farm animals, but not as much with people. While we've introduced the concept, there hasn't been a ton of work on it. I'm so pleased to see him generalizing concepts. Way to go, Liam!

Fantasy Baseball Camp

2011-07-21T00:33:00.003-05:00

I was so excited on the day that CJ finished baseball camp because I'd gotten some pretty good pictures and wanted to blog them. Then Liam got hit with a baseball on closing night, and well, it just didn't get blogged. I hope you all can understand that I often find myself busier than a one-legged man in a butt-kicking contest and my blogging goes by the wayside.

With all of that said, this camp meant the world to CJ so I'm coming back to blog it right now. It's not so much that he gained a new skill in the game of baseball. On the contrary, I imagine he's still about as clumsy with a ball as he ever was, and that's fine. What mattered most about this camp is how "normal" CJ felt. His team leader was Deaf, his coaches were Deaf, his FRIENDS were Deaf. Some spoke with sign, some were oral, and some were like CJ using a little bit of both. Some had hearing aids. Others had cochlear implants. In the grand scheme of things, though, none of that mattered. At this camp, they were all just kids looking to have a good time.

I noticed that with each passing day, CJ's confidence grew a little bit more. Don't get me wrong. He's certainly not shy, and the kid has more charisma and spunk in his pinky finger than some people have in their entire bodies. CJ has always used his outgoing bubbly personality to distract people from the things he's not good at like socializing with kids his own age, gross motor activities, and really anything requiring him to step out of his comfort zone. Little by little, I noticed that he was realizing that he could do anything he put his mind to at camp.

It goes without saying that his favorite part of the camp was lunch and snack. He was pretty impressed that there were watering stations at each field, too. Each day he came home and told me in great detail about each and every snack or lunch he'd eaten. I know the majority of the food was donations from local restaurants and those sponsors are to be commended for a job well-done. If CJ liked it, it had to be good.

There were some pro ball players that came now and then to meet with the kids and sign autographs. I asked CJ if any famous people came to the camp to visit. His response? "Yep. Some firemen came to show us their truck. I got to sit in it, but it's not okay to honk the horn or turn on the siren. I'll remember that for next time." So, I don't know if any true celebrities came to the camp, but in CJ's mind they did. That's what really counts, right?

On the last day, CJ got to be part of an awards ceremony. He was pretty sure he was the camp MVP. We'll let him keep living in that little dream world. He did get a medal for having the furthest hit. I think the camp directors were being generous in granting him that honor, but he sure was proud.

That evening, we got to march into the minor league ball field (where Liam had his little incident) with the Energizer Bunny as a family. CJ was pretty sure he'd met a true celebrity with that silly pink rabbit. He was just as proud as any kid could ever be.

He's already talking about going back to camp next year. While I'm a little nervous about someone getting clocked in the head with a fly ball, wild horses couldn't keep me from letting him go anyway. For CJ, this truly was a Fantasy Baseball Camp.

Nothing is more thrilling than having a giant bird pitch you the ball.

Could he be any prouder? I think not.

CJ wanted a picture with his new friends from his team. Drezden decided he needed to be in the picture as well.

He was on a little team of just little guys. They'll grow, though.

He's pretty sure that trophy is going to be worth big bucks some day.

Team picture with coaches and team managers. He LOVED that little group.

It took me forever to realize that Energizer was a major sponsor because Deaf kiddos need hearing aid batteries. I'd like to thank Energizer for the one dozen batteries they gave CJ. Yay!

CJ proudly wore his ears as he marched onto the field with a giant pink bunny.

He couldn't control his excitement. Check out that look of triumph.

Rachel was also proud to march in with her giant pink ears.

"Mom"

2011-07-20T23:09:00.000-05:00

It's been an incredibly long and I dare say draining summer with Liam. It's not that he's been naughty or failing to make progress or anything like that (though he has made a sincere effort at redesigning virtually every wall in the house). It's just the amount of time and effort that has gone into getting him to and from school.

For the past two months, he's gone to school 4 mornings a week. The only days he's missed were when he was in the hospital after his baseball incident. Normally that wouldn't be too big a deal, but we spend the three hours that he's at school just "killing time". It's too much of a drive to come back home, so we're stuck down there. The air conditioning in the van is broken, so we've all been crammed into Byron's little car. To say the least, it's taken its toll.

Then there's all the work and therapy going on at home with him. Kassidi has been so loyal to Liam and comes twice a week every week to work with him. Sara comes twice a week as well to do therapy with him. As grueling as it feels to me sometimes, I can only imagine how it must feel to Liam. I know he loves the attention and that work is really play to him, but we do ask so much of him. At times, I've wondered if it's worth it.

This past week, I got confirmation. It's worth it. Every moment of hard work, literal sweat, tears, frustration, wondering if he'd ever catch on, all of it. It's all been worth it. Ladies and gentlemen, Liam can say "Mom". There have been flashcards made with my picture on it (and the rest of the family, too). There have been play toys and role playing. You name it, it's been done with him. And, finally, after all this time my baby knows who I am. I have a word. It's not always perfectly clear, but it's there. I have a sign, too. That one he does beautifully. For all those hours of hard work, one simple word has made it 100% worth it. "Mom". That's me. And now Liam knows it.

"Mom"

2011-07-20T23:07:00.000-05:00

He Didn't Even Know What Hit Him...Literally

2011-07-03T16:45:00.000-05:00

I haven't posted in a while because I've been in the hospital with Liam. He's home now, and well on his way to a complete recovery but it was pretty touch and go for a while there. So, here's what happened:

CJ got to attend a local baseball camp for the Deaf and Hard of Hearing (another blog post soon to come with LOTS of pics), and the last event the camp offered was for the campers and their families to attend a minor league baseball game. We looked around, but had no luck in finding a babysitter for the three littlest ones so we opted to just bring them with us. Besides, what could possibly go wrong, right? Ha! These are SuperMom kids. Something will ALWAYS go wrong because that's just how we roll.

The kids were doing okay, but were certainly nothing short of wiggly worms. They were all over the place. One of the things they were most interested in were the promotions going on at the platform above the first baseline. Byron and I decided to go ahead and let Liam out of the stroller and put his backpack leash on him so he'd still be safely by my side. We went up to the platform where there were performing dogs and a few other booths that he could look at. When we got up there, we were talking to some of the other parents from the baseball camp when we noticed in a split second that people around us were ducking. Instinctively, we both ducked and covered our own heads. Neither of us covered Liam's head. That's a split-second choice we will both regret for a very long time.

The ball bounced off of something and hit Byron in the knee. He was really sore and rubbing it for a fraction of a second before we realized people were running at us at full speed with looks of horror in their eyes. That's when we noticed Liam laying on the ground by me. It took no time to understand that, in that split-second, the ball had hit him head-on in the forehead before bouncing off of him and into Byron's knee.

One of the team's management staff saw the whole thing happen and rushed us off into the backroom for ice and to be sure Liam was okay. I carried him and he whimpered a tiny bit, but really didn't cry much. I filled out an injury report while they got him some ice and someone else brought him the ball that had hit him. Apparently another spectator caught it, but felt that Liam had earned it more. In the time it took me to fill out the form, Liam acted fine. That didn't last long, though.

Within about ten minutes of being hit, I noticed he couldn't pick up his ice pack and he was staggering. He wasn't able to stand up straight at all. I quickly picked him up and noticed that his eyes were going back and forth. It looked like they were having seizures or something. I went back to the management guy we first met and said something was very wrong. He called 911 and his wife, who was at the game and a nurse. At this point, I was starting to panic a little bit.

The nurse was the first one to help him, and she could also tell something was wrong. He was responsive at that point, but was in need of medical help. Luckily, the ambulance was there within five minutes of being called. The paramedics put him in a neck and body brace and then strapped him to a backboard before loading him onto the ambulance. I went on the ambulance with Liam while Byron made arrangements with some friends who just happened to be there to help get the other kids home and taken care of so he could meet me at the hospital.

That ambulance ride was the scariest parenting moment I've ever had. He began to quickly deteriorate in his status. He lost conscienceness and his respiration rate went down to 6 breaths per minute. The paramedics couldn't wake him, so they bagged him to help him breathe as the ambulance screamed down the road. His blood pressure went sky high and then dropped very low. At that point, there was some debate about whether we'd make it to the trauma center in time. We opted to keep driving with the plan to go to a closer hospital if he got any worse to stabilize him and then get him to the trauma center possibly via life flight.

When we got to the Children's hospital, Liam was immediately rushed to a trauma room full of about 20 waiting care providers and I was taken to another area with a social worker to give information (and keep me out of the doctors' way while they assessed him.) Liam was then taken for X-Rays and probably some other tests while I waited for him. He still wasn't really with us at that point, and couldn't be wakened but he did respond to pain by pulling away.

Byron finally made it to the hospital and joined me while Liam sat in the hospital and he was taken from the trauma room to his own ER room with monitors all over the place. He was on an IV, but I don't remember all the details about why. I think they were providing fluids since he wasn't able to wake up and eat or drink himself. Over the course of the several hours we were in that room, his heart rate kept dipping for a few seconds at a time.

Around three in the morning Saturday morning, he was finally given his own room on a highly monitored unit and we just had to wait and see what would happen. Liam continued to sleep until late Saturday morning when he finally woke up.

Almost immediately upon waking up the vomiting started in full force. For the full day, doctors opted to take all food and drink away from him until the next morning. Sunday morning, teams of neurologists came to see him and ordered another CT scan of his brain. That CT showed what looked like a stroke. In addition, we noted that Liam wasn't able to stand at all and sitting always resulted in falling far to the right.

Because of the CT results, and MRI was ordered for him the next morning (Monday). Because of the way he was acting (unable to hold his head up very well, vomiting, etc.), there was legitimate concern that he'd had a stroke. Some priesthood holders from church came and gave him a blessing on Sunday night and we just sort of held on to faith that the blessing would at the very least bring him comfort and keep him free of fear. The MRI results came soon enough and showed no damage at all. We were very blessed.

From that point, ENTs were brought in, an audiogram was done to be sure he didn't lose anymore hearing with the hit (he didn't, by the way), and we just watched and waited. Each day, he got better and better. Doctors kept looking for clues as to what was causing so much trouble with walking, but at least we knew he was continually improving.

Finally on Wednesday morning, I was talking to an ENT and told him just what I had been seeing in him. He ran a quick test at the bedside and finally saw the nystagmus in his eyes. That was all we needed to confirm what was wrong. A neurologist followed shortly behind and ran the same test with the same results. Basically, the otoliths in his ears were not in the right position and were throwing off his balance. It's expected that they will eventually fall back into place.

He still is a little "spacey" and doesn't always seem to be totally with us, but he is walking and running on his own. His wild and crazy disposition is returning, and I'd see he's doing great. He just can't seem to walk with shoes on. The pediatrician saw him Thursday morning and thinks he's grinding his toes into the ground to help him find a center of balance.

He also got a visit from the baseball team's mascot and president who brought him a team autographed bat from the game, signed his ball, and gave him a team bobble head toy (how ironic, right?). They also invited him to throw out the first pitch at a home game WITH a helmet and seats safely behind some nets.

All in all, we are feeling very blessed that he's still with us. We were lucky to have so many people help with the other four kids and bring in meals, etc. I had no idea how blessed we truly are with amazing friends who care about us and our crazy children.

As for Liam, it's safe to say that he didn't even know what hit him. Thank goodness!

The Perfect Teacher Appreciation Gift

2011-06-18T23:58:00.000-05:00

This post comes a few weeks late, especially if you consider that school has been out for nearly three weeks now. No matter. It's impressive that I got it out at all (especially when you consider how far behind I am in my blogging).

Liam has a lot of teachers and helpers at his school who work with him, but only one who does the actual one-on-one therapy with him daily. Each day, she goes and pulls him from his class and spends a full hour trying to wrangle him, get him to sit still, engage him, motivate him to find his voice, encourage him to learn, and ultimately to SPEAK. Miss Terry is her name and she's wonderful.

You know how you just get the occasional teacher who you can tell just by looking at her how much she loves what she does? This is one of those teachers. She has that classic eye sparkle that every amazing teacher has, and she is ALWAYS smiling. Always. I'm sure she has bad days, but she never lets it show. I guess she must hang her woes on a hook when she comes through the door and perhaps just picks them back up when she leaves. Whatever she does, it's clear that she doesn't let them interfere with the amazingly important work she does with little people like Liam every day.

It's important to me to actually do something for teacher appreciation for my kids' teachers. They work hard and aren't paid nearly enough. Because of the number of kids I have and the fact that several have multiple teachers, I counted 15 teachers to do something for this year. FIFTEEN! That can get a little spendy if a person isn't careful. For the teachers' aids, I was able to get something small and simple that would represent Liam, but I wanted to do something special for Terry.

I thought and thought about it. I could do a gift card, but that felt impersonal. I could get her a lovely matted print with some inspirational saying on it, but that didn't seem like something that represented what she and Liam do each day. Nothing quite fit, so I decided to stop a minute and really think about what Liam would get her. If I could take him to the store and let him choose her anything he wanted, what would he choose? That's when it hit me. I had the most perfect gift that perhaps I have ever given.

It was bright and cheery in color, but had a unique shape all its own. If you tipped it just right, it even looked like a smile. It had a thick outer skin that led to something sweet and delightful on the inside. It was the one thing Liam would bend over backwards for and work had to achieve. It was the first beautiful word Terry had ever gotten him to say. It was perfect.

So, off I went to Hobby Lobby where they carried special fancy plastic fruits and in I walked to ask for this one special item. "Excuse me, do you know where I can find a plastic banana?" The guy working there pointed me in the right direction and off I went to find the most beautiful and perfect plastic banana I ever could find. From there, I went to the ribbon counter where I handed them my banana. "I'd like enough of that bright green ribbon to make a beautiful bow to go around this banana, please". The lady at the counter cocked her head a little and raised a brow as I explained what it was for. Then she smiled and said she'd wished she could be there when I gave it to Liam's teacher. I got another glance at the checkout counter, so I explained why a plastic banana would need a huge bow and a fancy gift bag one more time. Again, the lady mentioned wishing she could be there to see Liam give it to Terry.

I finally made it back to the school with my gift in hand and a note explaining why I'd chosen such an unusual gift for teacher appreciation. After all, it wasn't something Terry could really use. It mostly would just stand as a reminder of the hard work she'd put into one squirrely little kid.

Before she got the card or opened the gift, she looked at me and said "What do we have here? Is it a banana?". In that moment, I knew I'd gotten the perfect teacher appreciation gift.

Walk 4 Hearing

2011-06-18T17:29:00.000-05:00

For the past couple of months, I've been working to help raise funds for the Walk 4 Hearing to sponsor the Hearing Loss Association of America. Liam's school had its own team, but I didn't find out about it until after we'd already created our own family team. It didn't really matter how we did it as long as we were doing it as a family. I was so excited to work on raising funds, get matching shirts for us all, and enjoy some time as a family working toward a common goal. In the end, we raised $270 to benefit the cause and had an AMAZING time. The pictures tell the story much better than I ever could.

Liam didn't drink very much of his juice, but he was really good at dumping it.

CJ really wanted to become friends with this huge flock of Canadian geese, but they weren't as excited about it. This goose kept sticking his tongue out and hissing at CJ.

Liam's entire snowcone ended up on the grass.

Liam also decided to take the play-dough he got out of the container and put his lemonade in it. Then he spilled it. Again. Anyone else seeing a trend here?

It took him a whole 20 minutes to destroy his pinwheel!

It was SO NICE to see all five kids being so good to each other.

After snow cones, free toys, and lots of food, they were all smiles.

I really did try to get nice pictures of the kids, but CJ is too silly to let me do it.

Drezden insisted on walking instead of going in the wagon. He was lapped repeatedly by everyone...including blind people in wheel chairs.

At the start of the walk, it all looked pretty easy.

Even our princess found things she enjoyed.

Rachel couldn't resist Jewel the Clown. She is pretty sure they're best friends now. Jewel the Clown came to find me later and tell me how delightful Rachel is. Who knew??

Fun family photo!

Byron and the kids getting ready to walk 4 hearing!!!

Right before we left, we made sure we got a family picture taken. I love this one!!!

Overall, it was an amazing and completely wonderful day. We helped raise money for a cause we believe in whole-heartedly, spent time as a family, made friends who also have hearing loss, and built lasting memories. Sometimes being a mom to children with hearing loss really has its perks.

Trying Something New

2011-05-24T21:43:00.000-05:00

I don't talk a whole lot about CJ's issues outside of his hearing loss. He does so incredibly well that I often just sort of push the other "stuff" aside to focus on the positive. He has so many amazing things going for him, and has come significantly further than anyone ever imagined he would.

He's preparing to get his left ear implanted, and part of that is getting some shots to prevent meningitis. His CT scan shows a lack of bone around the cochlea, which will cause a gusher of spinal fluid when the doctor goes in for the cochlear implant. The doctor is prepared for it, but the exposed fluid dramatically increases his risk of contracting the disease. In order to get the vaccine, he needed a well visit since it's been nearly two years since he last saw a doctor (which demonstrates just how healthy that kid is!!).

I really like our new doctor, and I felt like it was time to bring up some issues with her that we've seen in CJ. The issues I brought up were:
-unable to sleep through the night if he sleeps at all
-still wets the bed
-can't stay on task. Even sitting at the table to complete a meal is hard for him. Completing assignments at school is very trying for him.
-incredibly impulsive, sometimes putting himself in danger
-still sleeps in his closet frequently
-can't tie his shoes, zip his pants, or button his trousers
-can't ride a bike with training wheels
-unable to correctly form his letters when writing
-relates very well to adults, but struggles a bit in playing with his peers
-lots of avoidant behavior, especially with assignments or things that are hard

Many of these issues are things that an OT has been working on with him all year long. The behavioral issues are things that the schools and we have been working on literally since he was three years old. They're holding him back from feeling successful and making friends at school.

For the first time in his life, I finally agreed to allow him to try out some medication. I won't pretend to not be nervous about it because I am really unsure of what to expect. It's not something I have wanted to do, but I felt like it was time to put my own preferences aside for what we think (and so desperately hope) is best for CJ. We're trying it out, revisiting the doctor in a week, and going from there. It's not a standard ADD/ADHD medication because neither the doctor nor I think that's quite what he has. We're hoping it'll help him sleep more regularly, control his impulses a little bit, and focus on tasks better. For the bed wetting, we got another medicine for him.

The doctor has mentioned the same for Liam a few times, but I'm pretty adamantly against it for him right now. He's just so young, hasn't gotten a real communication method yet, and well...it just doesn't feel right. The truth is that so much of what I do in parenting is based on what "feels right". Some call it Mother's intuition. I like to think of it as allowing myself to allow God to guide me in the right choices.

So, that's the latest CJ update. We're one step closer to getting that ear implanted, and hopefully one step closer to helping him feel more successful and happy about school.

Some Silly CJ Sayings

2011-05-08T22:33:00.000-05:00

It goes without saying that CJ is completely nuts. I'd go so far as to say I think the kid is just a little bit off his rocker. Then again, so was Einstein. I can't complain much if I can compare my kid to Einstein, right? He may be Deaf, but I have reason to believe it's entirely possible that he's also a genius...or something. At any rate, he's had some crazy things to say lately. Some of them stem from his Deafness and the fact that he mishears things. A lot of it, though...well, that comes from the fact that he's off his rocker.

He's been taking dance classes with Kassidi's mom since January. I was completely shocked that he even wanted to do it. In fact, I'd only originally signed up Rachel but he begged to try, so I let him. He's been working hard and has practiced and practiced and practiced. After I put him to bed at night I hear the frequent "thunk!" coming from the ceiling above me that is also the floor of his room. That's where he practices all his moves including flips and head stands. After each thunk, I hear something to the affect of "Good job, CJ. Remember to keep your shoulders back" or "Way to go CJ. Class, did you all see how great CJ just did?" Yes, he is completely alone in his room, but apparently there is a very important dance practice happening in his mind. In the mornings over breakfast, he proudly tells me how hard he's been practicing (in case I didn't know already) and reminds me that his "recycle" is coming up soon. I try to convince him that it's actually called a recital and he happily nods his head and says "Yep. That's what I just said."

CJ has also taken quite a bit of interest in the piano keyboard Byron got for his birthday. He's just itching to learn to play it and any instrument he can get his hands on. I have a friend at church who has agreed to take him on as a student and teach him, which I happen to know he will LOVE. His school principal is also in a rock band that played at a school event Friday night. CJ was in awe of her and her band and was thrilled when it was over and the band members let him touch the instruments. He chattered away with them explaining that he is going to be a "musikan" when he grows up. We tried to correct him on the word and told him it's actually called a musician. His reply? You guessed it. "Yep. That's what I just said." Silly kid.

The Good, The Bad, and The Downright Naughty

2011-05-05T15:52:00.000-05:00

Liam has been making some really good progress lately. Overall, we’re pleased with him. Well, we’re mostly proud. I find myself having to overlook his poop art, constant need to be in the dishwasher, recurring urge to empty the dog dish all over the kitchen, and his questionable kitchen reorganizing skills. Oh! And I also have to ignore the fact that he insists on removing every stitch of clothing and roaming the house in the nude. Other than those few things, he’s doing pretty great.

Being the resident genius that I am, I have made a few interesting observations. First, I’ve noticed that he is definitely getting some benefit from his hearing aids. It’s clear that he is detecting sound and voice inflections. When he tries to imitate, though, his speech is muffled. I think he’s hearing things in a muffled way even with his hearing aids.

He has picked up the ability to sign really well. I usually only have to show him a sign for something one time and then he’s got it mastered. He also is always trying to vocalize when he speaks. The fact that he’s so dedicated, but still so muffled in his speech is what leads me to believe he’s hearing things funny. That may be all that will be needed to get him going on his cochlear implant. We shall see.

Liam is also developing a cute little sense of humor. Well, kind of cute but also kind of naughty. Mostly it’s just naughty. Let’s be honest here. He delights in walking up to Drezden casually and then taking the glasses right off his face while running and laughing maniacally. He also does this with CJ’s processor, tv remotes, sippy cups, and the occasional hotdog. He also thinks it’s completely hilarious to walk through the house and systematically dump things. Actually, the more I write this all out, the more I think he just has a lovely little naughty streak running through him rather than a sense of humor. And, since we’re talking about streaking, have I mentioned that he loves to be naked AND in the dishwasher at the same time? Oh. I did? Well, I’m mentioning it again, because it’s true. The little bugger is going to be the Grand Puba of some Deaf nudist colony someday.

So, those are my observations for today. Overall, things are going well. As we can all see, though, there is still plenty of room to make improvements.

Reality Bites

2011-04-15T15:39:00.000-05:00

Most of the time I really am just fine with the fact that my children have special needs. In fact, I usually embrace it. Every now and then, though, something will happen that forces me to look at the reality of the situation. It's in those times that I feel like I take a little baby step back. While I certainly don't find myself wallowing in self pity or sobbing into my pillow, I do find myself sighing a little more heavily.

After Rachel's visit with Dr. C. on Wednesday, I spoke to Sara (deaf ed. teacher) and gave her the updates. We didn't really learn anything new other than the fact that she has very thin ear drums and that the plan is to hope her ears stay the way they are rather than to get worse. I let her know that Dr. C. didn't seem overly concerned by the amount she was missing and that maybe we didn't have to do very much in the way of an IEP or interventions for her. Her response was my first reality check for the week. She reminded me that Val (audiologist) is a little concerned about the level of Rachel's loss, and that Rachel will really struggle in Kindergarten if we don't do something to help her. It's not like she's going to need a ton, but the teacher will be wearing an FM and a sound field speaker will be placed in the classroom.

Rachel is so well-adjusted and "normal" that it's been easy to pretend that she really doesn't have a hearing loss. She plays like other kids her age, has friends her own age, didn't have any developmental delays, and has pretty good speech. Plus, she's my girl. We had always thought the CJ and Liam had a genetic thing that only applied to boys. Now we know that can't really be true. It's a little bit of a blow.

Then there's Liam. He's so happy. I mean, he's naughty, mischievous, into everything, and busier than a one legged man in a butt kicking contest, but he is just so happy. And smart. He is so very smart. Yes, he's behind his peers, but I guess sometimes I allow myself to pretend that that's just Liam and he's really fine. And the truth is that he is fine. But, he's also Deaf. And he has some health issues.

After parent ed. today, Betsy handed me his most recent audiograms. I've looked at them before, but today they really struck me. I compared them to the banana audiogram and really saw just how much he doesn't hear. It's a lot. He barely hears the lawn mower, doesn't hear the piano being played, and is nowhere near hearing any parts of speech. I mean, he can hear those things we believe with his hearing aids in, but...well, he's just very Deaf.

So, this week I was given a little bit of a reality check. It wasn't anything I didn't already know on paper. Still, today reality bites. Thank goodness there is always tomorrow.

Decisions, Decisions, Decisions

2011-04-15T11:55:00.000-05:00

Liam and Rachel visited with Dr. C. on Wednesday. Overall, it was a really good visit, and I have no complaints. In fact, I'm really pleased with the plans we've made...I think.

Rachel: From the looks of things, she has unusually thin ear drums. This would normally be rather surprising to me, but I've learned to stop be surprised by anything. Unusually thin ear drums you say? Ok, let me just add that to the list of unusually unusual things about my children. Really, there isn't anything that can be done about it, so he's wanting us to just sit tight and monitor her hearing closely.

I spoke with Sara (deaf ed.teacher for the school district), and she wants to go ahead and order Rachel an FM system with a sound field speaker for Kindergarten. Basically, it'll just turn things up a bit for her and help the teacher sound louder than all the other noise that happens in a Kindergarten classroom.

She just finished her testing with the school district, so now we just have to wait for results. I'm pretty sure they tested her for speech and cognition. I don't have a whole lot of concerns about her cognition, but she does have some interesting speech sometimes.

Liam: This little dude is doing GREAT! Dr. C. asked about his progress, and I was really excited to be able to report that he's finally imitating tons of sounds and words. I'm pretty sure the kid would be a millionaire if money could be earned for making farm animal sounds.

As much as he's making strides, we know it's almost time to move forward with his cochlear implant. It sounds like the plan is to put it in his left ear. All we have to do is wait for Val (audiologist at Liam's school) to say go. My understanding is that she just needs to test one more ear, and then the ball will be rolling on that.

CJ: CJ wasn't with us, but Dr. C. and I discussed him. CJ has decided that he absolutely wants to implant his left ear. I think he's finally old enough to recognize the difference between his aided ear and his implanted ear. I've told him it's going to hurt, and he is undeterred. He insists that he'll give up anything and everything to get that ear implanted. How can I say no to that?

Deciding to implant CJ's aided ear was a really hard choice for us. What if it doesn't work as well as the first? What if he's unhappy with it? What if? What if? What if? In the end, it comes down to the fact my fears can't be the driving force behind my decision making. It needs to be about what's best for my children. He wants this. He can articulate that he wants this. His whole heart and soul wants this. So, this is what he'll get.

*Sigh*. I just hope it's the right decision...

The Perfect Gift

2011-04-06T10:55:00.000-05:00

CJ and Liam share a Deaf Ed. teacher, Ms. Sarah. She sees CJ in school and then sees Liam at home. CJ also has an interpretor that works with him twice a week to teach him sign language which he LOVES. She has even helped form a "class club" to help CJ teach his peers to sign with him. It has done wonders for him, and he's so delighted with it.

Yesterday, Sarah came to see Liam but had a form with her for CJ. She handed it to me and said "CJ's interpretor is sponsoring CJ to go to this camp. It's a fantasy baseball camp for Deaf and Hard of Hearing kids." I was stunned! I looked over the paper and realized it meant he'd be learning a sport, getting to play with a variety of famous ball players, and spending a full week surrounded by kids just like him. He even gets a full uniform to wear each day!

I filled out the paperwork and went ahead and signed him up for the extended days that will allow him to stay and swim or learn to play hockey. With the help of the interpretor sponsoring him, we could afford the extra time.

CJ is beside himself with excitement. The camp is, of course, a few months away and he is already counting the days and planning what to wear and what he is going to do and who he thinks he'll meet. Rumor has it his interpretor will be there and his now famous friend, David. For CJ, it truly is the perfect gift!

For all the struggles we've had, the blessings have been easily ten times as prevalent. Every single time I start to feel like we're missing out on something or some completely unfortunate situation arises, God reminds me that He is there, that He knows who I am, and that He is caring for and loving my children through it all.

"Flower"

2011-04-04T22:19:00.000-05:00

Every Monday night, we have Family Night in our house. It's usually completely chaotic and ends in something being spilled, someone needing a band-aid, and everyone giggling...at least a little bit. We try to make sure everyone has a role to play in the night, whether it be saying an opening prayer, sharing acts of kindness they'd seen over the week, being in charge of snack or the activity, or writing down all of the week's events. Usually, I'd say it goes over Liam's head, but he seems really pleased with the fact that we're all together working on something.

On Saturday, Aiden went with his friend to an outdoor event teaching about nature preservation and the wetlands. In addition to a tick he brought home in his hair (gotta' love a free souvenir, right?), he also brought home a tree seedling. He can tell you all about the thing, but I can't remember for the life of me. With my luck, it's a sequoia tree and will take over the yard in just a few months or something. We decided that we would plant the tree tonight as a family.

We collected the tools we'd need, reigned everyone in to circle around the chosen spot, and started digging. Everyone got a turn to dig. CJ spent most of his time throwing things at people or turning hoses on, but everyone else stayed pretty much on task. Liam stood by and watched patiently and then was delighted when it was his turn to throw a few shovel's full of soil into the hole with the seedling. Aiden was pretty pleased that he got to throw some dog poop in as fertilizer. It was Molly's poop, so we figured that was her little way of contributing to our tree.

On the way back in, Liam took particular interest in the tulips and daffodils which are in full bloom along the front walkway. He'd touch each one, and then jump back a little at the way it felt on his little hands. Then, he'd reach over and touch it again with a bit more confidence. Each time, he'd look to me to tell him what it was. Since he pulled the tubing out of both earmolds, he was stuck depending on sign language. I showed him the sign for flower, and he was so proud. Within seconds he'd figured it out. He would carefully stroke each flower and then look up at me with a huge grin while he signed "flower".

It's funny how such a simple thing can have such a profound impact, isn't it? As happy as he was to touch and feel the flowers, I think he got more joy from the fact that he could communicate it to me. The pride in his eyes as he "told" me what each one was was certainly worth the time we'd spent stopping to smell...er, I mean touch, the flowers.

I Love Reporting Leaps and Bounds Progress!!

2011-03-31T21:13:00.000-05:00

Liam's light bulb is officially turning on!!! His school had a two week spring break during which he went just a couple of times for just an hour of one-on-one at a time. This week he's back in school, and I can't tell you how pleased we are with him. In the past two weeks, Liam has learned:
*Too many new words to count
*How to put a peg puzzle together
*How to put wooden beads on a string using the Melissa and Doug shish kabob set
*How to SAY AND SIGN block.
*How to follow instructions and line blocks up to form a "train".
*To attempt to color inside the lines
*How to correctly hold a crayon
*To attempt to duplicate shapes on a paper on his own. It's still a scribble really, but he almost has the circle down.

He has a few other new tricks, too. These are slightly less desirable, but I guess we get the good with the bad. Less than stellar tricks he's learned are:
*How to open the dishwasher
*How to climb into the dishwasher
*How to pull every item out of the dishwasher and break my favorite plates
*How to say and sign uh oh when he breaks something
*How to take items that are of value to his siblings (Drezden's glasses right off his face!!) and run with them to make the person chase him while he laughs maniacally.
*How to dump entire drawers full of silverware all over the kitchen.
*How to flood the bathroom.

So there you have it. Leaps and bounds progress has really been made. Now if we could just rein him in a little and tame his wild side we'd have a perfect angel on our hands.

CJ's Hearing Test Update...and a New Surprise!

2011-03-22T14:13:00.000-05:00

I realize CJ had his hearing appointment on Friday and I haven't had a chance to update since then. Suffice it to say I'm glad Spring Break is D.O.N.E.

I'm pleased to report that his hearing appointment went VERY well. It appears that the internal part of his device is working just fine, so that's really great. He did need to have his volume turned waaaaaaay up. When we were done with the appointment, the aud. asked him how he liked the changes and he said "I'm delighted! When can I get a processor for my other ear?" I'll take that as a really great sign that things are better. The hearing aid ear is so/so. I don't think that there's a big change in that ear since we last had it tested, but I think he's really starting to discover what the implant can do for him and preferring it. We are still really on the fence about whether or not it's best to implant the other ear. I know what he wants. I just don't know if it's also what we want for him.

One thing we're working on with him is teaching him when to set his processor for the FM and when to turn it off so he can get better quality when he's not using the FM. He is a little bit confused about how and when to do that, so we'll keep working with him. Sara has done an AMAZING job of teaching him to say "I'm sorry. I didn't hear you. Can you please repeat that?". He's really great about that during conversation, so that's a great start. I'm working with him on saying "Can you please check to see if my FM is working? I can't hear you." He mentioned that he thinks sometimes his music and PE teachers don't use it, though he did say Mrs. Lackey is good about remembering it. Since she's his key teacher, that's probably most important. I think we do need to work with her just a little to help remember to check his processor to see if he's set for the FM or not. The way he talks about it, that really does help him with the background noise.

Anyway, that's the updates for now. I'm excited to report that they're good updates. In other news, (here's the surprise referred to in the title) Rachel had her hearing tested today with Betsy and Valerie, and they did find a bit of a conductive hearing loss in the lower frequencies. Her audiogram looks a bit like Liam and CJ's, but with measurably better hearing than them. She can clearly hear those higher frequencies better than the lower. They checked thoroughly and found nothing to indicate an ear infection or blockage of any kind. When they did the bone hearing test (I know that's not the right term for it), she did great. We have an appointment for her with the ENT in a few weeks. We'll be watching to see what needs to be done next. We've already contacted Sara to let her know what is going on, and will speak with the school district tomorrow to decide how to proceed.

She was tested at birth, given an ABR as a baby, and then tested again at around 2 1/2 years old. There was no indication at that point that anything was wrong. Does that indicate that she might be like the boys with a progressive loss? It would definitely explain why she talks so loudly. I always just figured it was because she's a SuperMom kid and in this house you have to be loud if you want anyone to hear anything you say. Even the cat is loud here. I think the plan right now is to follow her hearing closely, consult with the ENT, and work on qualifying her for speech with the school district. She's always qualified for speech even as a 2 year old, but I opted not to pursue it here because I figured she could catch up in Kindergarten. Way to go, Mom. I'll be collecting my Mother of the Year Award soon.

Okay, so there you go. I'm sure that's all far more information than you all ever wanted.

By Popular Demand-A Repost

2011-03-21T15:24:00.001-05:00

I actually posted this entry back in October of 2009. In the past two weeks, I've gotten three separate e-mails from people telling me that they often refer back to it when they're feeling down. I had no idea!!! I also find myself coming back to it frequently when I start to feel down, and I love it. I don't know that I can really claim the thoughts behind it because I really feel like it came to me as inspiration from a higher power. In any case, I'm posting it again in hopes that someone else can glean something from it.

Why ME? Why Not?

With the current poor economy and the outbreak of so many illnesses and the increase in autism and whatever else one can think of, I've noticed a new sort of disease. Why Me Syndrome. I have some thoughts on this that are mine and mine alone. I'm going to share them and you're welcome to read on with the understanding that I'm in no way trying to be unsympathetic to the plight of those who suffer. On the contrary, my thoughts and prayers are continually with those who weep, suffer, and are heavy burdened.

I think it needs to be put out there that no person is ever going to be exempt from pain and suffering at some point in life. Why, then, do we often find people crying "why me?" when bad things happen? Sometimes I feel like the only answer I can give is "Why not you? What have you done to exempt you from ever having undesirable things happen to you?"

Let me explain myself. It's my firm belief that muscle can only be built through hard work and endurance. The same goes for emotional and spiritual muscle. If we don't have opportunities to endure, we don't have the chance to build our emotional and spiritual muscle. While times of trial and tribulation can often seem like a dark tunnel with no light in sight while we're in the midst of them, it's undeniable that we come out stronger because of them. We may not see it right away, or maybe not ever in this life, but the painful hardships we endure today are providing the framework for the stronger, more capable people we have the potential to become tomorrow.

I get asked the same question all the time. It's not always phrased the same way, but the jist is the same. "How do you do it, Aimee? How do you handle five very young children, three of whom have special needs? Do you ever wonder why you are the one with these children and these difficulties?" I'll tell you how.

It's very simple really. I was taught from a very young age that the trials we face in this life are God's way of complimenting us. We are told that God won't ever give us more than we can handle with His help. If He honestly believes that I can handle all that He's given me, He must think very highly of me. And that is a compliment.

Another thing that leaves me feeling okay about mothering these particular children is greed. Plain and simple. I'm greedy. I know beyond a shadow of a doubt that enduring to the end will result in guaranteed blessings, and I will do anything to earn more. I know that these blessings come because I've experienced it first hand. I won't go into the details, but suffice it to say that my family and I have had far more goodness in our lives than we've had hardships. It's not even always so much in a spiritual sense. Sometimes it's just plain and simple happiness. Before we had children with special needs, we were unable to see the amazing details of day to day life. We didn't realize how amazing it is to see your child walk for the first time, or to hear him utter his first real word. We took good general health for granted. The task of breathing in and out while still keeping our hearts pumping was mundane and never thought of. Now, I relish the time I spend just watching Little Guy breathe in and out and in and out. And I'm happy for those things.

I think there are many people who live by the misguided notion that living a life that is good and faithful to whatever religion they embrace should exempt them from pain. The truth is that there is really no "vaccine" for hardship. No one can prevent it from spreading to themselves. Living a good and faithful life is simply one way to find the tools to face pain head-on when it comes. When we live by the principles of some gospel and have a belief in some sort of God, we give our lives a sense of purpose and meaning. We give ourselves an outlet through which we can seek out peace and comfort. All of these things can ease the pains we suffer, though they can't prevent them from coming in the first place.

Setting aside the spiritual aspects of it all, I have to ask why NOT me? Were I to sit down and cry and pout and beg someone to explain why me, I would hope someone would point out that I am no different than any other person on this planet. I don't come with some special ticket that allows me to go directly to the front of the happiness line. Last I checked, there was no "get out of jail" card for pain and suffering. Why and how could I for one minute think to myself "why me?".

If not me, then who? Who would I see fit to suffer my pains and frustrations and disappointments? What makes me so much better than anyone else that I should think I don't "deserve" this to happen to me? Really, who does deserve to suffer? Is there one person more deserving of afflictions like cancer than another? Does one set of parents "deserve" a perfectly healthy baby more than another set of parents? Does one baby deserve to come into the world and become part of a healthy well-functioning family more than another baby? Were we really able to decide who to give pain to, how would we decide that? How, as a society, would we decide why one person over another?

I'm not going to lie. It's not easy. I've had frustrations time and time again. I've had times where it just seemed like one bad situation after another was piling on me. There have been times that I've felt that I just needed to sit down and cry, and that's precisely what I've done. Just cry. I get tired, so very tired sometimes. Sometimes I want to run and hide because I feel woefully inadequate for the responsibilities placed before me. On occasion, I have to acknowledge that it hurts to know that so many people look at my children with pity. Who wants perfect strangers to feel sorry for their children? No, it's not easy. It never has been.

To those who ask me how I do it, I want to say that I really can't imagine not doing it. Mothering these children is what I was born to do. They are my purpose. I don't know that I had the tools to provide all that they needed from day one, but I know I've worked hard to gain those tools, and in so doing I've become a better person. Facing my hardships head on has made me a stronger person in so many aspects of my life. I've looked the fear of failure in the eye and beaten it. I'm by no means the perfect mom. I never will be. But I, with all of my shortcomings, am the perfect mom for them. That I know for sure.

I don't know that my ramblings have made any sense in terms of the Why Me Syndrome I see so often. My point is simple, though. When we sit down and cry, why me, we miss out on seeing the opportunities for growth right in front of us. Whether it be growth for our caregivers in our times of physical weakness, or our own opportunities to gain knowledge, or simply the opportunity to come to really appreciate life for all it is, the opportunities are there.

My plate is full. All our plates are really overflowing with stress, worry, pain, frustration, and whatever else is weighing on us. I can't ask why me because I honestly can't think of one reason why NOT me.

Pity? Really???

2011-03-15T18:53:00.000-05:00

I'm not a huge fan of the show "Celebrity Apprentice" with Donald Trump, but I have been tuning in to watch this season because I really love Marlee Matlin. I love that Deafness is a part of her, but it doesn't define her. She's a great role model for Deaf children.

Anyway, I was watching this week's episode during which the teams were tasked with writing a children's book and performing it. This seems easy enough, right? While her team was brainstorming, Marlee suggested that it would be great to have a character in the book who had a hearing loss. The reaction of her peers was shocking to me.

It was decided, mostly by Dionne Warwick, that having a Deaf character would lead to "pity" and sadness on the part of the children reading the book. As a team, the majority decided that the four and five year olds were too young to be told that someone has a hearing loss and would feel sad about it, and instead went with another storyline that completely bypassed the Deaf idea all together.

Pity???? Really??? The last thing I think of when I see CJ and Liam is pity. I think of silliness, sign language, big messes, lots of giggles, ice cream parties, , hearing aid batteries, cochlear implant testing, etc. I think of a LOT of things, but pity and sadness are not on that list.

In case there be any question out there, allow me to clarify a few things in The Gospel According to Aimee. Children are NEVER too young to be taught anything. Even the youngest child can be given bits and pieces of concepts and come to accept it. To suggest that three and four year olds are incapable of understanding that a peer has hearing loss is ludicrous! CJ was four years old once. He stayed that way for a whole year, too. And, in that year, HE HAD PEER FRIENDS!!

The other children didn't fully understand what Deafness entails, but they knew they like CJ. They knew his ears "were broken, so he wears hearing aids and talks with his hands" sometimes. They knew he liked to collect rocks and organize them by size and color. They knew that he loved to tell knock-knock jokes, even though he didn't really understand why the jokes were funny. They knew he loved a good whoopee cushion and would laugh at every fart and bathroom joke. They knew he LOVED books and often hid them in his backpack so he could read them later. What they didn't know was pity for him. Never once did I see any of his peers feel sad or sorry because they knew CJ and that his ears don't work right.

Kindergarten went fine for CJ as well as first grade. He has his challenges and sometimes has to work harder to really play like the other kids because he misses some of what they say, but that doesn't get him down. On the contrary, I would assert that other children are better off for having been around CJ, Liam, or really any other child with a disability. Learning to coexist and enjoy peers with differing abilities as young children is what breeds acceptance and understanding. To suggest anything otherwise is narrow-minded.

If I feel pity for anyone, it's for those who are unable to see the beauty of diversity right in front of their own noses. I feel pity for the people who suffer with ignorance so badly that they are unable to see the amazing joy that Deaf children have within them. I pity the individual who clearly has not had the pleasure of meeting my boys and embracing them for who they are.

Let me be perfectly clear. It's absolutely acceptable to feel empathy and cry for the parent who is mourning the loss of a child's ability in one way or another. It's normal to feel frustration when trying desperately to communicate with a child who is unable to tell you why he's crying. It's human nature to have questions about how hearing aids, cochlear implants, sign language, and hearing testing works. To feel pity for a Deaf child, however, is just wasted energy. For anyone who was wondering, my children need your love and acceptance. They don't need your pity. At all.

Well, It's Safe to Say Chocolate Is NOT One of His Oral Aversions

2011-03-11T21:17:00.000-06:00

We've been making steady progress with Liam's eating, and I'm pleased to report that he has an array of new foods he's willing to tolerate. Chocolate is not one of those foods. It's not that he won't tolerate it. It's just that tolerate may not be the word we're looking for here.

I'm thinking "falls madly in love with" is a more accurate description of how he feels about chocolate. The other night for Family Home Evening, we planted little seeds in cups to watch them grow (They've already sprouted, by the way!). For our snack that night, we made little dirt cakes. Each person got to dump their pudding in the cup, mush up an oreo, throw in a few gummy words, add some flower sprinkles, and enjoy their treat. As you can see here, chocolate pudding and Liam got along very well. I'm still cleaning it out of his ears.

More On CJ's Cochlear Implant

2011-03-11T17:43:00.000-06:00

As you may recall, I posted a week or so ago about the fact that there is some possibility that his internal device is failing him. It could be that I'm in denial, but I'm somehow not overly concerned. Yet. I am admittedly scratching my head trying to determine how he can possibly be functioning so well, and have only two electrodes correctly working for him. Could it be simply that he a true genius? Probably. That's usually the best explanation.

There are certainly some questions that need to be answered. Only time and testing can answer a lot of them. I have some frustrations with the fact that his hearing aid ear is still not being attended to because his audiologist is so concerned about the implant. While I understand that the implant is most important, I also think the aid should be set to perfection if we really do believe the implant is no longer serving him correctly. The audiologist at Liam's school is MUCH more equipped and readily available to do the testing and make things better for him, but he has to be a student or an alumni there to be able to take advantage of those audiology services. We may have found a loophole to make that happen, and I'll respond to that shortly.

If he is NOT having failure issues with his implant, why are we starting to see changes in his hearing capacity across the board? What could be happening to change what was once working so well for him? After attending a one hour workshop with the director of Liam's school, I implemented some of her ideas and started running some little at-home tests of my own. Because of that, I was able to send an e-mail to his whole team and get the ball rolling with open communication between the Dallas team, the new team, and Liam's school. It's so pivotal in my opinion that every one of the players involved in a child's education have open and free communication with one another. Sometimes something as simple as an e-mail sent to everyone can be all it takes to get that happening. Once the communication starts working and team members compare notes, it's easier to decide what to do next.

I've copied and pasted the e-mail into this post. The people involved are Kristi (CJ's teacher from TX), Betsy (director at Liam's school), Sara (CJ's current teacher of the Deaf), and Linda (CJ's former AVT). Here is the context of each e-mail:

After all the other kids were in bed, I went in and "played a game with just him and me". With him in bed less than five feet away from me, I turned my back to him so he couldn't read any body language or lips at all. He did have his DSi on very low, so that would be the only noise to speak of. I asked him to repeat some words for me with just his processor, and then just his aid on. The results were lower with the processor, but surprisingly not by much at all. Here's what I noticed:

1. When I had him repeat a string of NUMBERS after me, he got them right every single time without fail.

2. When I had him repeat unrelated mono-syllabic words after me, he got less than 30% correct. We're talking words like dog, bed, cow, sit, frog, shoe, house, car, etc. All were very simple words that I know for sure he uses as part of his daily vocabulary.

This leads me to believe that he got the numbers right because he was using the context clues (knowing it had to be a number) with whatever parts of the word he heard. When he was given totally unrelated material, he really could not get it. He never did get one full set of three correct using words.

When I talked to Katie, the aud. at Dr. Clary's office, she said that her experience was that the NRT test is only incorrect about 3% of the time and that she does feel about 97% sure that we need to explant and then re-implant. Until I played with him tonight, I was a little bit iffy on how accurate that would be. What we don't know is how long this has been going on.

Kristy-Did you ever run any kind of testing like this on him when you had him, and if so, did you notice anything similar to this? I actually expected better responses at least with the hearing aid than I got.

Sara-Have you run anything similar to this, and what results did you get?

Betsy-The rest of the questions are for everyone, but especially for you. Given all this information, I am most curious as to where you would go with this information. The Dallas team doesn't seem to put much stock in the NRT test. The St. Louis team feels that the NRT should be heavily considered. The one thing both teams completely agree on is that the integrity test is the deciding factor, and that's where we're going from there.

The Dallas team does say that the only NRT they did was at implantation and at that time, they found 6 working electrodes, but weren't worried at that point because apparently it's common to get lower results at the initial test. If he really was only getting 6 electrodes to begin with, does this point to him possibly not being a great candidate for implantation like with thought he was? I feel like he's done GREAT with whatever he does have, so I'm inclined to be willing to try it again for him.

What should we expect in terms of auditory training if we do have to start over for him? If he's only ever had 6 electrodes, it would seem to me that it's going to be very overwhelming to suddenly have them all working. I do recall very clearly that everyone was always shocked at how much he could be turned up without ever a complaint. Could it be that he never complained because they weren't really working to begin with? Just how far back do you feel that this would put us? Sara feels like she would be able to implement the needed auditory training, and I completely trust that she could. She's not let us down yet. I'm just wondering if you would do the same, which is to keep him mainstreamed and just intensify the pull-out time for training. If you wouldn't do that, what would you do for him?

I think that's it for now. The integrity test hasn't been scheduled yet, but Katie is working on getting the first possible appointment for him. Really, until that's done, I don't know that there's much else we can do. I'm not worrying until I am sure there's reason...although playing with CJ tonight definitely raised a few red flags.

Thanks, ladies!! You are all amazing!!!

-Aimee

Reply from Kristi:

Just the facts. I'm trying really hard not to get emotional here (it's not really working, though).

We talked about this a little bit at the time but there was just SO much going on in your life and all I really had was just a "feeling" so I felt a bit silly and didn't push it.

I noticed around the end of Jan. into Feb. (the semester before you moved) that I didn't think CJ was hearing very well. No big deal, I thought. Everybody was sniffly and stuffy, CJ included, around that time. So, I thought maybe his hearing-aid ear might just be stuffy or full of fluid.

However, I never saw any improvement. So, yes I did sort of do some informal "testing" games with him. I can't give you specific percentages but we played with noise-makers of different pitches (somewhat like with Liam) and with my voice and with trying to find the location of sounds.

Here's what I noticed:

1. CJ was not hearing as well as I thought he did before.

2. He seemed to be relying on his hearing aid more than his processor.

3. Then there was a period of time when he didn't have his hearing aid and he seemed to have the most trouble during that time. This just confirmed to me that he was depending on his hearing aid much more than I would have thought.

4. He was relying heavily on visual cues, facial cues, and lip-reading. If he had his head down looking at his paper when I said something, I almost always had to repeat it when he looked up.

Things I noticed with his processor were that it didn't seem to matter to him whether it was on or off or if he was in the "wired" room or not. I don't mean that he didn't care if it was off his ear/head. He always wanted to be wearing it. I mean that it didn't seem to make any difference in his hearing/understanding.
As far as his hearing aid, he didn't seem as attached to it or overly-concerned that it wasn't working but he did seem more lost and was not hearing as well without it.

That last semester CJ just didn't seem his usual outgoing, curious self. He misunderstood more single words and asked "what?" more frequently. He seemed just a bit less confident, more tired, a little less excited about everything.

Keep in mind this was all during the time when things were very chaotic and confusing in his whole little world. All his things were packed in boxes, the house was in the middle of selling, you were gone some (to see the house and I think Liam was hospitalized then, too), he was staying with different people, AND he had been very traumatized by the tornado drill at school and was freaking out at every storm we had and we had alot of them that Spring. So....it was kinda understandable that he wasn't really his usual charming self and appeared a bit more tired and not as "with it".

I just feel awful to think that maybe his processor wasn't really working that whole time!

As far as having more than six electrodes being overwhelming to him - I don't see that as a problem at all. Can't they control how much it's turned on and do it slowly so that he isn't overwhelmed? They turn it up/on as he can tolerate it. Is that right?

PLEASE let me know everyone else's input and keep me updated!

Love to all,
Kristi

Reply from Sara:

Aimee,

I waited to respond to you until I got to work this morning and could give you percentages. I worked on following directions with CJ using a visual lat Friday (3/4) and Monday (3/7). On Friday he asked me to repeat 30% of the time. He says, "I did not hear you. Could you please repeat that again?" On Monday, he asked me to repeat 50% of the time. I will work with him tomorrow on following directions not using a visual and let you know how he does.

As Kristi said and as you and I have discussed, we are getting the answers to many of our questions.

Sara

From Linda:

Aimee,

You know his hearing better than anyone...do you think his hearing had decreased significantly? It seems everyone thinks so. There are hard failures and soft failures. Unless I'm mistaken, hard failures are easy to diagnose...it's like the CI is broken and doesn't deliver sound. A soft failure allows a person to hear, but like they're hearing blurred, indistinct. I am NO expert on this, but that's what it appears. Has the Cochlear rep been called in to do an integrity test? That will be the real test.

Let me know what goes on and if you're going to possibly replace the CI there or here

-Linda

Betsy opted to wait and meet with me today during Liam's parent ed. time, which was much easier. Because of the open lines of communication, though, she was able to instruct Sara on some testing to do with CJ so we can begin to really gather quantitative information regarding where he is now versus where he was when we first moved here. Back in July, CJ went to Liam's school to have some placement and skills testing done, so that offers us some sort of baseline to work from. I'm not sure it helps a ton because I think his troubles started early in 2010, but it's better than starting from scratch and working our way up.

As far as resolving our troubles with wanting him to have better audiology care, there may be a loop hole. If he needs to be explanted and re-implanted, he will need intensive rehabilitation therapy. In that case, it would be fairly easy to argue with the school district that spending the summer at Liam's school is better than just the standard summer school a lot of kids with hearing loss receive. If the integrity test shows that his internal device is fine, then it is fair to reason that he is having trouble knowing how to use the hearing he does have. In that case, we can still try to say he should spend his summer at that school learning to use his hearing more affectively so that he will be prepared to learn using his hearing instead of learning through observation when he starts second grade.

Any way you slice and dice it, there are questions to be asked. I don't think we have many worries or fears yet. Just questions, and that's okay. After all, if things were to be status quo all the time, I imagine I'd be just a little bored.

If I Didn't Know Better, I'd Say Liam's Light Bulb Has Come On

2011-03-11T17:21:00.000-06:00

Wow! What great progress Mr. Liam is making!!! He is finally really interested in signing words, and I find him imitating almost every sign I demonstrate for him. On top of that, he's vocalizing some sounds as well. We can't ask for better progress.

One example happened just last night. I'd put him to bed, but could still hear him sitting in his bed talking to himself as he played with his toys. I peeked through his door and waved to him as if to tell him goodnight. He looked straight at me, blew me a kiss (which is totally new!) and said "buh buh" for bye-bye. Suffice it to say I slept well tonight.

Wednesday, as I was walking him into school, he saw one of his friend's mom. He looked right at her and said "Hi!" just as clear as day. I've NEVER heard him say that one, and he used it in an appropriate context!! Go Liam Go!!

Last Friday as he was working with his way-too-cute-for-words teacher, Ms. Terry, she showed him some toy fish. He watched her as she picked up each fish and put it near her face and made it pretend to swim. After she was done playing with him, she turned around to get another activity ready, and he picked up the fish, put them by his face, and pretended to do just what he did.

All of these are steps in the right direction!! I'm so excited to see him trying to be an active player in family activities and finally getting something out of being at school. Yesterday, he helped bake cookies from scratch with us and seemed to actually understand what he was doing. He was of course most interested in getting his ten (Okay, closer to fifteen because I snuck him a few extras when the other kids weren't looking) chocolate chips.

Even today, as he sat at the table for lunch, I showed him the sign for cheese. He signed it after me perfectly, so I then gave him a reminder prompt for "please". The little genius looked me straight in the eye and signed "cheese please". It's always such a delight working with him and seeing the progress he makes each day. I love that his Deafness makes these little babysit that much more spectacular for us. Liam, you are truly a gift!

The Great Thing About Parenting Children With Special Needs

2011-03-06T14:13:00.000-06:00

Parenting kiddos who have special needs always has its ups and downs. I think it goes without saying that we all, as parents of even the most "typical" children, have had our share of heartache and frustration. I don't want to talk about any of that today. I want to talk about one of the really great parts of parenting my children.

It's the little things. Because every single little thing doesn't always come easy to my kids, I get to really enjoy and relish in the things that we would probably otherwise take for granted. Liam hasn't had to wear oxygen during the day in almost a year. A year!! This is a kid who is supposed to be on continuous oxygen until he's at least three years old, and probably until he turns seven. We still have to monitor him at night, but that's it. CJ has such great speech that, in Texas, they'd kicked him out of all the speech classes available. He wasn't supposed to really be able to speak clearly at all. Ever. We won't even talk about his reading skills. He reads beautifully and is self-taught. When he was a baby, his teacher told us to be prepared for him to possibly not even read at a fourth grade level by the time he graduates high school.

So, today I want to update on the little things my children have given me in the past week to be grateful for. To some, they'll seem small and simple. To me, they're perfect examples of my children moving mountains.

Aiden: (Soon to be 11 years old and considered "typical") He has mastered the art of acting like a monkey for his school play. It is safe to say there is no one who can take on the role of Aladdin's monkey and perform it with half the accuracy that he does. That's got to count for something.

CJ: (7 years old, Deaf). We just found out that there is a distinct possibility that his cochlear implant isn't working correctly, and yet he still functions in a mainstream classroom as if nothing major were going on. AND, he is loving his time in his dance class with Rachel. His teacher happens to be a friend of mine, who reports, that he is learning a variety of balance activities that he couldn't have dreamed of doing a few months ago. The skill he's most proud of? He can finally do a roll-over.

Rachel: (4 years old, and considered "typical") Rachel is finally learning to form some of the letters in her name. She is VERY proud of this!

Drezden: (3 years old, has some global delays) Drezden is finally starting to recognize some of his letters. He can identify his name in writing and HE HAS GONE 3 DAYS WITH NO BINKY!! He no longer cries for no reason, and his hitting has decreased significantly. Instead, he has found his voice. Today, he was able to tell me in a way that I understood "My cup is stuck and broken." That was enough for me to figure out that the pulp in his orange juice had filled his sippy cup holes.

Liam: (2 years old, Deaf, suffers NEHI syndrome) Liam can sign "milk", "fish", "more", "please", "banana", "shoe", and "eat". He is trying to vocalize some of those words, especially fish. Friday at school, he was able to differentiate between shoe, banana, and shoe. Also, after his teacher imitated a fish swimming with a fish toy, she got up and left the table for a second. Liam picked up the same fish toys and tried to copy just what he'd seen her do.

It really is the little things, isn't it? These are all such small things in the grand scheme of life. But, thanks to the fact that I've been gifted with children possessing special needs, I've been granted the ability to stop and really notice and acknowledge them for what they are. That fact alone makes it all worth it.

If CJ Were a Dog

2011-03-03T23:03:00.001-06:00

I've been saying for years that CJ is "different", and not just Deaf different. He's different in another way that I just can't put my finger on. While all of my children are special, there is something about CJ that is almost tangibly obvious that he is meant to be something. I can't explain it, and I certainly don't think he's more special than any of his siblings. Just "different".

CJ has always had an uncanny knack for knowing when a person needs him. I don't mean they need him to help do chores or anything like that. I mean they need him and his kind of love in their life. There have been people who I think only CJ could really ever touch, and bonds made that I wouldn't have seen coming in a million years. His friend, Jim, is one of those examples. Jim has a big heart, so it isn't like he is one of those that no one else could ever get through to, but it's the bond that CJ and he have that is so impressive. Here is a child who, at five years old, started to form an attachment to a gentleman and his wife at church who could be his grandparents. He laughs with them, plays with them, and even writes songs with Jim. They are truly best friends. I hear CJ let out a sigh of loneliness every time he bites into a magic shell ice cream cone at Dairy Queen. DQ magic shell ice cream is something he and Jim did together on a regular basis before we moved.

In addition to his knack for friendshipping, CJ is what I like to call a way way way way way...well you get the idea...outside the box thinker. He prefers his shoes to be on the wrong feet and his pants to be on backwards. No amount of encouraging will change his mind about that. Art assignments with specifications always come home with lower marks because he has much grander ideas for the tools he'd been given. He would much rather sleep in his closet or under the bed than in it. Every meal must be made into a "salad" before being eaten, and he must pretend he's doing his own Food Network show while preparing his salad. Every room, every book, every written letter, and every shirt must be decorated in some way. He has his own special and very precise interior design ideas. He even makes sure Rachel's doll house is set up to his specifications.

Why do I tell you all this? Well, today his former Gifted and Talented teacher posted the video in this link on Facebook and it got me thinking. It is about a service dog who doesn't quite do things the way her trainer hoped that she would. The dog knew her own strengths were elsewhere. Rather than forcing the dog to live within her own specifications, she allowed the dog to become what she was truly destined to become and miracles began to happen.

I pray every single day that there will be people in CJ's life that "get" him. He's different. He marches to a totally different beat. His imagination is endless. His love and enthusiasm and zest for life is contagious. His ravenous hunger for learning can not be quenched by merely throwing him a bone. He needs a feast. Indeed, if he were a dog, he'd be the dog in the video.

To those of you who are parenting your own "outside the box" kid, don't be ashamed or afraid. Don't worry about what others want him or her to become. Embrace that sweet spirit. Give that child wings and let him fly. Just like Ricochet the dog, amazing miracles will happen. I know because I've seen it with my own two eyes in my precious children, every single one of them.

Apparently I Need Votes. Can You Help??

2011-03-03T20:24:00.001-06:00

I just found out last night that I'd been nominated as a blogger who happens to have something good to say. Who knew?!?! I figured it was all said and done and then I just found out a few minutes ago that nominations are done, but voting is going on. If you like this blog, and you feel like it has something to offer to others, I'd love your vote.

Thanks!
-AimeeTheSuperMom

You Can Vote By Clicking Here

Who Need Tonsils and Adenoids Anyway?

2011-03-02T19:54:00.000-06:00

Liam finally got his tonsils and adenoids out last week as well as getting new tubes in his ears. He ended up having to stay for two nights because he kept struggling to keep his oxygen levels up, and that kind of thing totally freaks doctors and nurses out. They come running and shove oxygen up your nose right away if you drop below 88% oxygen level at any point. So jumpy, aren't they? Lol!

So far, I'd say he's doing okay. He has been VERY irritable and tired, and spent a couple of days refusing to eat or drink. I was worried that he'd have to go back for IV fluids, but apparently I did a pretty good job keeping him hydrated. Shocking! We appear to finally be over that hump now, and look forward to seeing what having clear ears and no longer having them blocked by tonsils and adenoids does for hearing. The doctor suspects that we may have bought him 20-30 db of hearing. I'm a little skeptical of it being quite that high, but anything is possible, right?

Anyway, I will be sure to continue to update as we get further hearing results in and complete our follow-up visit with the doctor. For now, I'm just enjoying the fact that he is super cuddly because he doesn't feel that hot. He's usually running non-stop, so having him slow down just the tiniest bit is a little bit of a treat. I know. Delighting in my child's discomfort makes me some sort of Mean Mother of the Year. I'm okay with that. Snuggle time is worth it! And besides, who needs tonsils and adenoids anyway?

Two Steps Forward, One Step Back

2011-03-02T19:43:00.000-06:00

I'm pleased to announce that CJ's hearing aid is back and seems to be helping him tremendously. Actually, we got it right after the New Year, but I haven't been so great about blogging. (Look at me doing a great job at catching up, though!) He was so very excited to get it just in time for snow because he could wear it sledding and not have to worry about his cochlear implant flying off as he whisked through the air at speeds upwards of at least 2 miles per hour.

His teacher and Deaf ed. instructor as well as his speech teacher all report that he is much more accurate in his hearing with his aid on. This is GREAT news, and I'm so delighted to hear that he's finally doing better and has hearing on both sides. Well, we think he has hearing on both sides now. So, having the hearing aid in and functioning represents the two steps forward. We're always grateful for two steps forward, right?

It wouldn't be life if there weren't a little opposition, though, so we must prepare ourselves for one step back. We took CJ today to his audiologist to make sure his aid was programmed to the best possibility capabilities and to check on the status of his processor. While he was very compliant, they never did get to test the aid. The audiologist ran a test called NRT (Neural Response Telemetry), which checks each electrode in the implant to be sure it is functioning correctly. Here is a better explanation of how it all works.

We have done a few tests before and it appeared that some of the electrodes might not have been working, but attributed it to the fact that not all 22 electrodes fit into his damaged cochlea. This time, though, it became very clear that only TWO of his 18 possible electrodes are working. TWO!?!? This is definitely a big fat UH OH! The audiologist was going to be meeting with our doctor today to determine what to do next. The plan is more than likely to do a CT Scan of his cochlea to see exactly what is going on. That's the only 100% accurate way to be sure what is happening, but the suspicion is that tissue has grown over some of them or perhaps nerve endings have died...or something like that. If that's the case (which we have a sneaky feeling it is), our only option is to remove the current implant and re-implant him.

The baffling thing is that he passed his hearing test as if it was all working. We think there is a chance the other 16 electrodes haven't been working for a LOOOOONG time, and he has learned to compensate for that. I remember him telling me over and over that it didn't work, and I would adjust his processor for him and he would tell me thank you and walk away. Apparently that wasn't quite enough.

So, we've taken one step back...maybe. I hate that he may have to endure this surgery AGAIN and be retrained to use an implant, but I'm grateful that technology is there to help him in the first place. And, even with one step back, two steps forward is still positive progress. We always love positive progress, right?

CJ Met a "Celebrity"

2011-03-02T19:15:00.005-06:00

About a year ago, I got an e-mail from a complete stranger asking me if her friend could use my blog as a link for a project he was doing for an Eagle Scout project. I tend to go with the flow, and certainly didn't mind him using it. Shortly after that, I got an e-mail from the scout himself asking me more questions about myself and my family. He figured out that, like him, our family is Mormon. He told me more about himself, too.

David is a Deaf teen who used his Eagle Scout project to create a place where Deaf teens and families could come together to share stories, make friends, and support one another. The name of his site is deafteens.org, and it has really taken off.

Over the course of time, CJ was lucky enough to be able to visit with David via Skype and really enjoyed talking the poor guy's ear off. David, being the patient guy that he is, always listens intently to all that CJ has to say. In CJ's mind, David is something of a celebrity. After all, he is in his computer. That automatically makes him a celebrity, right?

Another interesting thing that has happened over the year is that we ended up moving to about 45 minutes from where David is. Byron and I met him last April when we came looking for homes, but the children weren't with us. CJ was very disappointed to hear that we'd "hung out with the dude that has a cochlear implant and lives in the computer".

Sunday night, CJ finally got his wish to meet David. We had the pleasure of being invited to his Court of Honor, and took all five kids with us. CJ walked in and was a little confused trying to put David's face to where he'd met him before. Then, all of a sudden, his whole face lit up as he announced "Hey! That's David C! He's my friend in the computer!! Do you think he has missed me and is excited to meet me?". Yes, CJ. I do think David was pleased to meet you. More importantly, we're so grateful to have David as a mentor and example for our children.

Congratulations on a job well-done, David! You are truly an inspiration to us all!!

Awww! I Feel So Loved!!

2011-03-02T18:59:00.000-06:00

I've been so busy with the kidlets that I've been woefully neglectful to blogging. I'm back on the bandwagon now, though, and have LOTS and LOTS to say! Anyway, I came and logged in tonight only to discover that I'd been nominated as a good blogger. Who knew? At first I thought it was spam, but then I click on the link right here. I have no idea how it happened, but want to THANK YOU all for following and reading this blog. I hope it has been as helpful and HOPEful to my readers as it has been to me. I feel very loved and lucky today!

Building Trust with Liam's School.

2011-02-04T14:38:00.000-06:00

Today was a different kind of day than I've had almost since we got here. While this new place has so many more resources than Texas ever had, I've still always felt somehow insignificant or less than capable here. In this place, everyone who comes in contact with Liam or CJ is a pro and I'm "just the mom". I've felt like Liam's teachers in particular thought of me as overwhelmed, unable to really meet his needs, or ignorant to how to work with him. Every time I would come away from a parent education meeting with him, I felt like I was doing something wrong and was failing him.

Things were starting to get a little better as I talked to the director of his school more and more, and she got a chance to know me a little better. I felt like I was kind of breaking through her walls and earning little bits of her respect. That was all well and good, but she wasn't the one who worked directly with Liam. I wanted his teachers to understand that I am a skilled, caring, well-educated and informed mom rather than that one mom who is running late all the time, has her kid in mismatched socks, and just doesn't appear to ever have it all togehter.

Today all that changed. I didn't work with the center director and instead worked with his one-on-one Deaf ed. teacher. What a difference!! We worked together with Liam and she instructed me on what to do with him. To my pleasant surprised, she felt like I was "a natural". I did confess to her that what she was asking me to do was very similar to what I did as an autism therapist, so it took no time to pick up right where I left off.

Working with Liam and sharing a little about my background opened up a dialog that I think we both needed. She needed to know more about Liam and his family; what life is really like here. She finally caught on that I had been feeling a little bit judged and I feel like she genuinely knows now that I really am working with him. She seemed to understand so much more once I laid it all out on the table and was clear about the changes in our lives here vs. Texas. Suddenly it was like her light bulb came on and she really understood me.

It's just one small step, but it was huge for me. I feel like I can trust Liam's team a little bit more now that I know they trust me a little bit more. It's amazing how far a little bit of honest communication can really go!

More Adventures in Liam Land

2011-01-16T22:36:00.000-06:00

The great thing about raising kids is that each day is a new adventure. Lately it seems that most of my adventures have to do with poop. Poop under his fingernails, poop ground into my carpets, poop in his hair, poop smeared on the bottom of the bathtub, and occasionally even some poop in a diaper or two.

Luckily there has been more to our adventures than just poop. We got a snow day this past week, and all the kids got to try out sleds for the first time in their cute little lives. Other than the part where Liam fell face down into the snow and was too bundled up to be able to stand again, I think he really enjoyed it. He squealed with delight each time we'd go down the hill together.

Liam is also doing better and better (though not completely better) about wearing his hearing aids, too. I'm not sure what benefit he's getting from them right now, but I do know he's doing better. That alone is something to be excited about.

In other news, we finally have a date for him to get his tonsils and adenoids out and new tubes put into his ears. February 8th he's scheduled to get it all done, and then we can move on to monitoring his hearing so we can decide when and if we're going to get him a cochlear implant. It feels like time has sort of stood still for him the last few months, and at the same time it seems to have just flown by. It's crazy how life does that sometimes.

So there you have it. Poop, snow, and tubes are about all the adventures we've been having around here. It's not much to some, but it's life in general for us.

Liam Has His Person

2011-01-06T23:58:00.002-06:00

When we first moved here, one of my major concerns was whether or not my children would fit in and feel loved and close to people like they did in Texas. Each of my kids had their own special "person" who loved them in a special way that was different from their peers. I don't think it's even so much that each one had someone who favored them, but maybe that's just what it was. More than anything, it was that they each had someone who loved and understood them unconditionally.

Aiden had Angela. CJ had quite a few people, but I think his heart really belonged to Jim. It still does for that matter. Rachel has Gabriella. They've been bonded since Rachel was about 6 days old. Drezden had Linda. He loves his Linda. He also had his Ms. Buffy or Buppy as he preferred to call her. All four of my oldest children had someone who was there for them when it mattered most and who I knew would be a lifelong friend for them. There was some comfort in knowing that they each had an adult mentor in their lives who loved and cherished them.

Liam had people who adored him, most especially Linda (Jim's wife), but she couldn't come with him and hold his hand and guide him through the difficult transition from TX where everyone in the ward knew and loved him to this new place with a big new ward and no one who really knew and understood him. Liam was the one who weighed most heavily on my heart when it came to really needing "his person" and not really having one here. While he does have his Kassidi, he still needed something a little more. I worried that that person wouldn't come or that they'd come too late.

His first few weeks of nursery at church were awful. He had a sweet and dedicated teacher, but she was extremely pregnant and the classroom was simply too small for the number of children in there. When Liam came in, he was all over the place. He was like a little tornado on two feet. There was nothing even remotely successful about those first weeks in nursery and I would come home and just cry every Sunday after church. I dreaded going. I knew we needed to be there, but I hated knowing that he was "that one kid" that every teacher dreads having show up. His teacher never showed any dislike for him and never said one unkind thing, but I know he was more than a little challenging for her.

About five weeks after moving here, the nursery was split and Liam was moved to the younger nursery along with about six other kids. His class had been cut more than in half AND they had their own space. That alone was a huge blessing. Still, there was something more profound that happened that week. Sister Meier was called to be one of his two nursery leaders.

I remember vividly my first impression of Debra. She seemed so poised and put together. And she smiled a lot. Really, a lot, but not the cheesy kind of smile that hurts your face at the end of the day. She has the kind of smile that shows a sort of contentment with life and a genuine joy in being where she happens to be in that moment. If you've ever seen that kind of smile, you know what I'm talking about. I had spoken a little bit with her in weeks previous to her being called to Liam's nursery because she was a substitute one Sunday. I'd been asked to be in there whenever he was there so that he could only terrorize half the children rather than all of them. She shared a little about her life and her family. She talked about how she loved being with the little ones since her youngest was twelve now. She'd home schooled all of her children and really loved being with them. I remember taking a huge sigh of relief when her name was read off as his new teacher because I knew she'd at least be able to tolerate him and maybe even enjoy him a little.

When I dropped him off in the new nursery that first Sunday, I went to climb over the gate so that I could stay with him like I'd been asked all the previous weeks. She stopped me and said she could handle it and would let me know if she needed me. I sat through all of Sunday School and Relief Society jerking my head to look toward the door every time it opened fully expecting her to bring him to me and ask him not to come back unless it was in hand cuffs. She never came. I went to pick him up and she smiled and said something to the affect of "Well, he sure is active and eager to experience what's going on around him. We have some work to do, but I think he's going to do great." That was the first Sunday in many that I didn't come home and bury my head in my pillow and just cry.

It's been a few months now, and Liam is thriving with her. She smiles every single Sunday and greets him happily. She's "learned him". She has mastered the art of predicting what he's going to do and being one step ahead of him at all times. She knows he's going to rifle through anything at his level, so she makes sure the only toys and papers at his level are safe for Liam to play with. She puts the trash can up high where he can't reach it. She figured out that he eats all the crayons laying idol on the table, so each kid gets one crayon only making it much more challenging for him to get to eat one. She and Sister Lidell (the other teacher, who is equally as wonderful) have even taught him how to use a crayon to scribble. He's so proud of this accomplishment! She recognized that he wants to eat but has some oral sensory issues, so she keeps bananas and cold cuts (his two favorite treats of all time) on hand for him.

With her help and tremendous patience, Liam is even sitting a little bit during lesson time. She asked about his hearing aids, so I taught her how to use them. He gets to hear in class now!! Granted, it's short lived most of the time, but it's a start.

We happened to be at another friend's birthday celebration at a restaurant and Sister Meier got the luck of sitting next to Liam at the table. Anyone who has ever had the honor of dining with him knows this kid will have lots of first dates, but second dates will come once in a blue moon unless he improves his table manners. I could be wrong, but it seemed that she genuinely enjoyed his company. They had a bond. He is eager to please her and get her attention. She knew and noted things about him and his personality that I thought I only had noticed. She laughed at the funny things he did rather than being frustrated with it all.

As much as she has done for Liam, she has also done so much for me. There is no greater comfort than knowing your child isn't just being tolerated, but that he's being loved. I know she must go home exhausted every single Sunday. I know she must crave grown-up conversation. Instead, she gets Liam. In exchange for her sacrifice each week, I get the little break I need. I get to enjoy some much needed spiritual feeding while at the same time feeling pride in the fact that I know someone else can see that my child is lovable. I don't have to feel ashamed by how wildly active he is, or by the fact that he doesn't pay much attention to the lesson, or that he prefers to eat the play-doh rather than sculpt with it. I know she is delighting in his little accomplishments as much as I am, and I am so grateful for that.

So, Liam has found his person at least for now. And me? I have found peace of mind and joy in worshiping at Sunday services. Thank you, Sister Meier. You will never truly know what a blessing you have been to our family.

We Have a Plan!

2011-01-01T10:14:00.002-06:00

Liam has been doing really well in school. I'm so delighted with the progress he's made in terms of learning to sit down and focus on what he's being asked to do and even with learning to play with toys the right way rather than simply throwing them. Even with that progress, though, it sort of felt like Liam had hit a plateau. He had one or two words and wasn't at all consistent with them. And then there's wearing his hearing aids. I'm pretty sure he'd rather be strung upside down in a closet by his pinky toes rather than wear his hearing aids like he's supposed to. It's a constant battle. His cap that Kadee made has helped a lot, but he's a smart kid and he's learning to get past it. Little stinker.

I sat down and visited with the school's director who has been working with Liam and keeping detailed notes on his progress. She and I both agreed that it's time to increase his time spent at school, so we're adding a third day of school for him. I think that's going to make a big difference. Even more importantly, she came to work with him here at home during the holiday break. While she was here, I was able to really learn what it is she needs us to be doing wit him. We finally have a plan and it's working!!!

We have a special "Kassidi box" that is full of specific toys that are only to be used while Liam is working on his language and wearing his hearing aids. We will take him to the front room of the house, which has its own door to help quiet things and only one piece of furniture (see? It pays to have no furniture!). When he's in there, he will be required to wear his hearing aids the whole time and to use the toys in a very controlled way. We have vocabulary we expect him to wait for before using the toys, and hopefully he'll even repeat the language we give him. Right now, we're focusing heavily on requiring him to look directly at us before we speak and allow him to use the toy. As we make more progress, I'll be sure to video tape little bits of what we're doing to demonstrate how we're doing this all.

The exciting news is that, just in the time we've worked over Christmas break, he's really getting it. He has repeated one word (bang bang bang), and has come to understand that he needs to look to us for direction. I'm really excited to see what kind of progress he starts to make now that he's being pushed at school, spending more time at school, and being pushed at home.

Updates, Updates, Updates!

2010-12-30T14:24:00.002-06:00

It has been way too long since I've taken the time to really focus on blogging and keeping a record of CJ and Liam's progress. Since the new year is just days away, I've recommitted to focusing on documenting our adventures. Who knows? Maybe someday they'll be famous and we'll have all this to look back on. Maybe all this stuff will be compiled into a biography and I'll make millions of dollars. Hey! It could happen. More than likely, though, it'll just be something for us to look back on and learn from. That would really be enough to satisfy me. The plan, or at least my goal, is to post updates at least 2-3 times weekly.

Fun updates you can look forward to reading about in the immediate future:
Liam's increase in time spent at school.
Liam's "Kassidi box".
CJ's new friends and play dates.
CJ's school progress.
Liam's language acquisition.
Pictures, pictures, pictures.
As always, all the silly stuff that happens on a day to day basis will be here, too.

We Have a Word!!!!!

2010-11-01T22:49:00.005-05:00

I am at a loss for words (which is rare...trust me) tonight. We have spent endless hours working on keeping Liam's hearing aids in. A friend of mine, Kadee, managed to make him a cap that officially works at keeping the aids where they belong. In keeping the aids in, we have succeeded at giving him auditory input. Finally, it's all paying off. I was recording a video of him demonstrating his cap and after I finished, he managed to say the one word he's allegedly been saying at school for a couple weeks now. This was our first time hearing him say it correctly at home. He's so proud of himself that he walked around for quite a while after the video with his toys in the air saying "uh uh uh".

Here he is saying his first word!! Go Liam!!!
Here he is demonstrating his awesome cap. This video also shows another big step for him as it demonstrates him finally copying what we do. This is a great step toward sign and spoken language acquistion. It really is a great day for him.

Liam's Special Helper

2010-10-24T23:33:00.002-05:00

Liam is a particularly busy little bee. Keeping his hearing aids in his ears requires one on one attention to keep his hands busy and at the very least make sure he's not eating his aids. Knowing that I wouldn't be able to give him that attention on my own, I made it a point to find someone to come a couple times a week and spend time with him and help him keep those hearing aids in his ears.

Kassidi is in our ward at church and happens to live just down the street. She showed interest in the job, so I went ahead and hired her. That was one of the best things I've ever done. She's dependable, willing to learn whatever it takes to work with him, and (most importantly) happy to be with him. She's always smiling and gets right down on the floor and plays with him.

When she first started, he was pulling his aids out about every 30seconds-5 minutes. Now that he's had some time at school and with her, he's leaving them in upwards of 15-30 minutes at a time. It's working!! He's learning that he has to keep his ears in when Kassidi is here, and he doesn't mind. He loves her. The minute she comes in and gets his hearing aids, he scurries over to her and plops himself in her lap to wait for her to put his aids in and then waits excitedly to see which toy she's going to pull out and play with him.

She comes with us places when it's just me and the kids (I don't try to keep his aids in when we're out and about yet. I don't want them lost), babysits for all the kids now and then, and has just been a ray of sunshine and a blessing in our lives. She even comes over to help out now and then at church when the kids are feeling a little too rascally.

So there you go. Those of you who have hearing impaired children and are feeling a sense of guilt over the lack of time you have to help your child wear those all-important hearing aids can consider finding an eager young person to help keep them in. Someone like Kassidi who has a real desire to learn about hearing loss, has a lot of energy to spare, and is fun-loving can often be key to the success of our sweet little people. While it can seem like a crazy idea to hire someone so young to do something so vital, I can attest to the fact that even crazy things can work. And work it has in our home. Thanks, Kassidi, for all your hard work!! Liam loves you!!

Today I'm Frustrated

2010-10-04T14:43:00.006-05:00

One of the responsibilities that comes with parenting children with any special needs is that of constantly advocating for your child. If I make the mistake of letting my guard down and thinking that everything is okay for a little while, something will go wrong. I let my guard down. Something went wrong.

Before the school year ever started this year, I had a loooooong chat with CJ's teacher and talked about how he needs her to be clear and consistant in her expectation from day one. While I understand that it may sound mean or tough to do this, CJ doesn't understand boundaries that are simply spoken to him. He needs them shown to him, and he needs them to be the same every single time.

I explained about the fact that he needed an immediate related consequence the first time a bad behavior happened and a positive clear consequence every time he did something good. While I don't need to know every last thing that happens at school, I do need to know about issues that require intervention. I can only support the teacher from home if the teacher keeps me informed of what is happening. I made clear that a bad report from school won't hurt my feelings. I want to help CJ succeed, so I need to know the good, the bad, and the ugly.

We are one fourth of the way through the school year and CJ has gotten a stamp in his calendar every day but three this year. Knowing that I'd been so clear about what works for CJ, I assumed that things were just going better for him. See? I let my guard down.

On Friday, he got a note home saying he'd been throwing pencils in the classroom when things didn't go his way, so he didn't get a stamp in his book. Okay. So, he lost his friend and computer privileges right then and there. He knew why he'd lost them, and took the consequence. I figured things would be better.

Then I got a call from the principal today. Apparently CJ had been sent to see her on Friday because the pencil throwing had been going on over the series of a few days. What?!!? He got a stamp all but Friday. In his mind, that meant what he'd been doing was okay. She went on to tell me that the teacher also had moved his desk because he was constantly disruptive. WHAT?!?! I NEVER got a message letting me know this was a problem, but only found stamps in his book each day. The very first time he was disruptive was when he needed to lose the privilege of sitting by his friends, at least for the remainder of that day. Now his desk is moved away from the preferential seating he really needs for best learning.

I asked when this was all happening and was told that it was mostly during all last week. At the start of the week, the audiologist had changed his map on his processor to a program that works better, but CJ hates. I let the speech teacher know and asked her to let me know if there was a problem in his behavior since that's how he usually lets me know he is frustrated with something. I assumed this information would be passed on, but hadn't heard anything about his behavior going downhill. See a correlation here? I do.

It gets even better. As a result of the continued bad behavior, he was going to be losing his recess today and tomorrow. Okay, great. So, now he's being punished three days later for something he did. At first I said okay, but then really thought about it and was very bothered by this plan.

I called the principal back and explained my position on this. I asked how his behavior had been all day and she said it was good. I let her know that taking today and tomorrow's recess privilege away tells him that on the days he was poorly behaved, he could still get what he wanted. But, on the day that he made good choices, he was still punished. She said she'd told him why he was losing recess and that he seemed to remember the choices he made that got him here in the first place. That's nice. You can still expect an explosion of bad behavior because now his boundaries are very blurred.

I let her know she could still have taken his recess, but in a way that correlated with the bad choice. "CJ, since you threw your pencil, that tells me you aren't ready to be allowed to have it so I'm taking it from you now. That means you can't do your work right now. Instead, you'll have to do it during recess when I can be with you to be sure you don't throw your pencil." See how that works? You can still take recess from him, but have some distinct meaning behind it. He NEEDS that.

CJ has a great teacher who is so sweet and kind with him. I know she's just trying to be patient with him and give him the benefit of the doubt. She wants him to succeed and to be happy at school. Luckily, that's my goal for him too. Now we just have to come to a place where we are both working in the same way to get him to that goal.

In the start of the year, I suggested we put a behavior plan in place for him. The school didn't think he'd need it. That was the place where I made my biggest mistake. In that moment, I chose to agree with them instead of advocating for CJ to be successful by having a plan to present clear boundaries for him.

So, now I know what he needs. I've called a meeting and will ask for the following:

1. The very first time he does something unacceptable, he needs to be told that it's a bad choice in no uncertain terms AND what to expect if it happens again.

2. If the behavior happens again (and it will), the described consequence MUST happen with no discussion of warnings or extra tries.

3. If he does something great, it needs to be acknowledged as well. CJ thrives on "earning" points.

4. If CJ hasn't really earned a stamp, he shouldn't be given one. If the teacher wants to continue giving stamps for overall good behavior despite the occasional bad choice, there needs to be some other sort of point system that he can earn throughout the day to help him know when he did well and when he didn't.

So, I'm off to advocate once again. I'm not sure when this meeting will be, but I will be sure to return and report when all is said and done.

The Bus Bully

2010-10-03T22:28:00.004-05:00

We're really proud of our CJ. He's come far over the years. I was sitting back today remembering the day he was given his name and blessing as a baby. I remember praying that he'd be blessed with his hearing, and how I just sat in the back row of the church sobbing as I listened to his loving father bless him with the gift of Deafness. In that moment, I knew that he was the child we were meant to have. I didn't have any idea in the world how we'd rise to the occasion of raising this precious, quiet child. I wondered how his Deafness would ever be a gift of any kind. If I'd only known then what I know now, my heart would have been rejoicing over the opportunities I'd been granted to parent this amazing spirit.

CJ's hearing loss has forced him to be strong-willed and determined if he wanted to find his own voice. And find it he has. He has impeccable speech, an amazing thought process, and is in most senses a typical child. (If there is any such thing as a "typical child" in the first place).

With all the wonderful things CJ has going for him, there is still some opposition in his life. Let's be honest, though. There is opposition in all things, right? For CJ, the greatest trial right now is learning to relate to peers his own age. CJ doesn't always understand what other kids are trying to convey to him. He especially struggles to understand sarcasm. Additionally, he seeks out the good in everyone and is sometimes overly trusting. This has gotten him into some trouble recently with a bully on the bus.

The thing is that he didn't know he was being bullied by the other child until the other kid came right out and threatened him. He knew he didn't like that the other kid kept stealing his books from him. He knew the other dude made mean faces at him, but he didn't really understand what it meant. Luckily, he has some friends on the bus who did understand what was happening. Being that they are girls and in kindergarten, these little friends made sure they told me all about it. My radar was already on alert when CJ came home and told me that the kid said he'd "punch his eyes out" if he accidentally bumped into the the other kids' backpack when the bus went over a bump again. At that point, CJ understood what was going on.

He told me what happened and that he was scared to go on the bus again since he was assigned to share a seat with the other kid. He was able to let me know that he didn't like it that the other boy was taking his books, and that he wanted him to stop.

What CJ didn't understand is that he can stand up for himself. I contacted the school and the situation has been rectified. Apparently the other child is having a lot of issues at home that are spilling over into his schooling, so we're hoping things get better for him in general. More importantly, CJ has learned that he can say something to the bus driver, his teacher, or even to a person who is bullying him to help make it stop.

This is obviously something that CJ will need to work on over time, and his speech teacher at school is going to work with him to help him learn more about what messages others are sending with their words. She'll help him learn some coping mechanisms and what to say in these situations. Hopefully this is the last we'll hear from this particular bus bully, and the start to a lifelong skill of self-advocacy for CJ.

Liam and His Hat

2010-09-25T21:32:00.002-05:00

I have only wonderful updates on my sweet Liam, and I'm so delighted to share them. The combination of him having his pilot cap and attending his new school has made for leaps and bounds progress for him.

The biggest, most important, thing I need to say is a huge THANK YOU to my friend, Kadee. She worked tirelessly to create this cap for Liam. She, another friend, and I are working on tweeking it a little bit to make it adjustable for each individual child's needs. For Liam, having this cap is an important key to keeping his hearing aids in. In addition to the cap, the time he's spending at school being required to keep his hearing aids in is leading to great things.

1. Liam has learned to try to engage others in seeking their attention. When he is in his high chair, he has discovered that he can make a silly face to cause us to laugh. He's so proud of himself!

2. He has begun to experiment with sound. I have a stainless steel mixing bowl that he has basically adopted as his own. Initially, he just liked it because I showed him how to spin a ball in it. He noticed that he could hear the ball spinning (it was a hard plastic ball with tiny beads inside it that rattle) in the bowl and began going out of his way to clang it against the bowl. While he was wearing his hearing aids because he had his cap on, he noticed that different items make varying sounds against the edge of his bowl. He goes out of his way to find other items to clang against the edges. So far he's tried a wooden hammer from our block set, a Thomas the Tank Engine toy, a chocolate bar wrapper (which he was less than impressed with), a shoe, and some silverware.

3. Liam has noticed that sound comes out of the television. The other day he was having speech services here at the house and Rachel turned on Dora the Explorer behind him. He was so distracted by the sudden sound he was hearing that he just couldn't focus any further on his speech lesson. I never thought I'd be so delighted to see my child distracted by the television.

4. He has clearly been practicing in the sound booth at school. Part of the conditioning for hearing tests is to have a child hold a piece of a ring stacker to his ear and wait for the sound. When he hears the sound, he puts the ring on the stacker. This, of course, leads to great applause. Liam now walks around the house holding toys to his ear apparently waiting for the sound to happen.

So, we're making progress. It's not even slow progress, but sudden and rapid. We love this child more than life itself and are so thrilled to see wonderful things happening for him. It's as though he's suddenly woken up to the world around him.

Fun Liam Updates

2010-09-17T22:29:00.004-05:00

Liam started his new school last week. In addition to that, he's been working a bit with his speech therapist provided by early intervention. I'm excited to report the following fun updates on him:

1. The speech therapist noticed that Liam is occasionally moving his mouth without making sounds. I know this sounds silly, but this is a good thing. It shows that he knows communication has something to do with the mouth.

2. When a toy is taken away from him or someone walks away before he's done playing with them, he will cry. This is a totally new behavior for him. He has never used crying as a means of communication before.

3. Liam is learning to be conditioned for hearing tests in a sound booth. Good conditioning has resulted in a really good hearing test for him. We know now that we do have the right hearing aids for him. His next sound booth hearing test will be aided, so we'll start to determine if he's gaining benefit from his aids.

4. Liam has repeatedly turned his head when someone called his name while he was wearing his hearing aids. This is a fantastic sign that he's gaining benefit from the aids.

Overall, I'm pleased. We still have a very long road ahead of us to help him catch up, but that road is getting shorter and shorter with each day that passes. Way to go, Liam!

CJ Has a Friend!!

2010-09-17T22:08:00.004-05:00

This is a really big deal for us, although it seems like just a typical day for any other parent of a seven year old little boy. Other parents aren't raising my seven year old little boy, so I don't expect them to fully understand.

CJ has always played very well with children younger than him. He loves playing with Rachel's friends best. He also really enjoys older people and adults. It's impossible to forget that his very favorite person on the planet is a cowboy who could be his grandpa. For whatever reason, his comfort zone has always been with people who aren't his age.

Part of CJ's biggest problem is that he struggles with relating to peers his age. Socially, he has always been just a little bit behind other kids his age. He doesn't tend to understand how to play with them or make-believe like they do. His interests are just different. Partly, it's because he isn't as confident in his gross motor skills. Playing running or jumping games is hard for him. Bike riding is next to impossible. This all goes back to his issues with a damaged vestibular system making it difficult for him to know where he is in space. Some of it is because he can't hear their voices or understand their speech as well as he understands adult speech. Adults recognize his hearing loss and are able slow down and articulate better for him.

It's been a long road for CJ when it comes to friendshipping. Finally, I'm really excited to report that we're making enormous progress. Our new neighborhood is full of children, some from church and some his own age. There are two little boys in particular. G is the younger brother of T, a friend of Aiden's. G is a year younger than CJ and likes to play with Rachel, but also is learning to get along well with CJ. Then there is L. L is the same age as CJ and in the same grade. He has twin sisters that are in kindergarten and love to play with Rachel. L comes over frequently to play Toy Story 3 or jump in the bounce house with CJ. He cries when his mom tells him it's time to go home.

Did I make that clear? Another child the same age as CJ wants to play with him and cries when it's time to go home. This is no small miracle for us. We are so delighted to see him laughing, playing, learning, and enjoying being around other children the same age as him. He finally knows what it feels like to have a friend that wants to play with him. That's a gift no child should ever live without.

One Small Step!! Yay!!!!

2010-09-10T22:12:00.003-05:00

CLICK HERE TO SEE THE VIDEO

Liam had his first day of school this past Wednesday. He only goes Mondays and Wednesdays, but will eventually be bumped up to Fridays as well. I'm a little anxious to add the Fridays because I think he really needs the extra help. The more we can give him now, the better.

One thing they really worked on with him is keeping his hearing aids in. This is not a new problem. I've shared it lots of times in the past, but it has gotten much worse. He will not leave the blasted things alone for more than thirty seconds. When I went to pick him up, his audiologist mentioned that they'd had some success using a bonnet to keep the aids in his ears. (Apparently he wore the teachers out refusing to keep them in. Ummm...I guess I won't say I told you so.)

The bonnet reminded me that we have the hannah andersson pilot cap from last year. I knew right where it was, so I pulled it out for him. Voila! A good twenty minutes with the aids in. The really exciting part?! FOR THE FIRST TIME IN HIS LITTLE LIFE, HE TURNED WHEN I SAID HIS NAME!!! I didn't have to yell it, stomp on the floor, flash the lights, wave my hands, or stand on my head while sending him morse code smoke signals. He just turned.

The hat isn't quite the right size. He is able to get his naughty little fingers up in there and take out the aids, but some of my amazing friends are working on a cap that does the same thing, but is bigger to prevent him from attacking the aids. (Little stinker!)

Anyway, I made a video so the girls who are working on this project could see just what I meant. As you can see, he's doing great! He's so happy, and is finally trying to interact a little bit with us. You can also see that he's learned to clap for himself. This is a very new thing, and it's wonderful for him. He does something he thinks is good and then claps while looking to us for validation. If he made a good choice, we clap back. If not, he gets the "grumpy" look and a big NO. He hasn't quite figured out that it's negative feedback sometimes, but the fact that he wants any feedback from other humans at all is huge.

Liam's IFSP

2010-09-05T13:53:00.002-05:00

Liam had his IFSP this past week. He had one right before we moved from TX, but a new one needed to be done since we've moved to a new state. We were prepared for that before we moved, so it didn't bother me to make the time to do. We also had an IFSP for Drezden, but there isn't a whole lot to say on that one. I will say that setting up services for two children on the same day really does make for a marathon meeting.

It's hard for me to acknowledge that I like this state better than TX because my heart will always belong to our team back there. The services offered here are more vast and more easily accessible in my opinion. That said, the bonds we had with our workers in TX can never be replaced, and there is something to be said about having close bonds with the people serving your children.

As far as what Liam will be receiving, I am very pleased with what is being offered. He'll be getting the following services:
OT 1 x week ( Therapist to be determined)
Nutrition 2 x month
Special Instruction - 1 x month home with Betsy and 1 x month 30 min at the center
Preschool class 2 days per week
Audiology
Speech Therapy every other week ( therapist to be determined)

The OT will be for his eating issues and to help him overcome his sensory issues, particularly with foods.
His nutritionist will be coming to make sure he's getting the right kinds of foods and nutrients he needs since he still doesn't do so hot with solids.
The special instruction will be given with an educator of the Deaf from the Moog school location in our area. This was actually an area of contention because the Deaf school wanted us to come to them once a week for the instruction, but first steps wanted everything done at home. They compromised for now, but I think it won't last long. I'm pretty sure the school is going to win, and I'll have to go to them once a week. It makes my schedule really sketchy, but is better for Liam. I have some mixed feelings in that area.
The preschool class twice a week is also at the Deaf school. I'm concerned that it's not enough, so the plan is to revisit his needs in a couple of months after they've had time to teach him how to get the most out of his class. I'm hoping we move to three days sooner than later.
Audiology will include all hearing testing, repairing his aids, earmolds, maintanance, etc. This is a HUGE help to us financially. Knowing we don't need to worry about his audiology makes it okay for us to take a huge sigh of relief in other areas.
I'm not fully understanding what the speech therapy will be for. He gets speech at the Deaf school, so I'm hoping the two go hand in hand. I do know he'll be getting his sign language skills from the speech teacher.

So, there you go. Nothing fancy, and no deep thoughts today. It's all just pretty black and white. We'll see how things go. I am pretty sure we'll be making changes as we go along, but overall I'm pleased with the efforts being made in Liam's behalf.

I've Died and Gone to IEP Heaven

2010-08-27T17:52:00.002-05:00

I had CJ's IEP yesterday. He's a transfer student, so it had to happen pretty early in the school year. I went in ready for a huge fight and gearing up to come away black and blue from beating my head into a brick wall. I even had Kristi, CJ's old DeafEd. teacher with me on speaker phone.

They listened intently to Kristi's input. They took interest in my concerns. They took lots of notes. Then it happened. They came to the part of the meeting where they tell me everything they were prepared to offer him. You have to remember that he was dismissed from all speech services because his articulation was too good. He was offered only 45 minutes a week of services with Kristi because "we know he hears us". OT services were continually denied because "we know he has sensory integration needs, but it's not academically necessary for us to address them". With all that in mind, I was prepared to hear a whole lot of hot air and be frustrated. In the past, I've even had Kristi telling the district what CJ needed and it still was shot down.

"We never dismiss our Deaf students from speech. He'll be working on everything from articulation to auditory training on a regular basis. He will have regular access to our speech teacher, who's office is right across the hall from his classroom. We will provide him with a new FM system, and will replace it every three years for him. We will provide his teacher with training and tools to better prepare her to teach CJ. We will be teaching him 25 new signs per quarter, and we will work to have them be signs that go with new vocabulary he's learning in class. We will be getting all classroom vocabulary in advance and work with him on processing their meanings. We will be offering him extended school year, during which time he will receive further auditory training, extra vocabulary, and anything else he'll need to prepare him for the following school year. Lastly, we will be evaluating him and prepared to provide him with the OT services needed to help him with his sensory processing issues".
Yep. All of that. I didn't have to beg, plea, cry, throw things, threaten, or stand on the table screaming. They just offered it. In the words of Kristi, I've died and gone to IEP Heaven.

Liam's New School

2010-08-22T16:39:00.003-05:00

Liam and me at the local zoo this past weekend. He was more interested in the animals than looking at the camera.

We haven't had Liam's IFSP yet, but all of his testing is done. Before we moved here, we learned about a school in our area. I did a little research into our options and agreed that the site closest to us would be a good place to send him to, but wanted to be sure we checked it out first. It's the same place CJ went to get his testing and educational recommendations, which our school district will be honoring and implementing.

When we visited, we spoke with the director and asked lots of questions. There are some things about it I'm not 100% sure about, but nothing that counts as a deal breaker for us. The school is oral only, and I believe in signing with all my children. They assured me that we could still sign with him, but not at school. That seems fair enough.

Liam will be receiving a lot of amazing services at the school. They are:

*all audiology services until three years of age including aids, testing, ear molds, critter clips, etc.

*seeing his own audiologist at the center 90 minutes a month

*one on one instruction with an educator of the Deaf

*a teacher to follow him around making sure his hearing aids stay in (a HUGE problem for us)

*speech services

*auditory training

*possible continuing services at the same school when he turns three paid for by our school district if it's deemed necessary for him (which it more than likely will be)

We'll be starting out with him going just two mornings a week and then move up to three mornings a week as soon as he's ready and shows compliance. I'm hoping that's before Christmas. I really believe this will be the best thing for him.

It's so vastly different from the way we did ECI in Texas. We were so happy there, and I was pleased with the progress he was making in most areas. Making the decision to do things this way once we got here was a hard one, but I think will have the most positive outcome. He'll still be having some services at home through the state early intervention program. He'll have an OT that comes to work on his oral sensory issues, a speech teacher, a teacher of the Deaf to teach him sign language, and a dietician to follow his eating habits. All in all, a very good plan for him...I think.

School Has Started!

2010-08-20T17:28:00.004-05:00

First day of school pictures. He's so proud of his Toy Story clothes, backpack, and lunchbox.

One of the scariest parts of moving when you have a kid under the special ed. umbrella is the fact that you always have to wonder if the new school district will be able to meet your child's needs as well as the old one did. Then there's the part of you that hopes that the new district will be even better than the old district was.

It seems that we may have hit the jackpot and managed to get CJ into a system that is more equipped and prepared for children like him. What luck!!! After a conversation I had today with his soon-to-be Deaf Ed. teacher, I am really breathing easy.

I walked in to drop him off on the first day of school and mentioned to his teacher that he hadn't been ARDed yet, so there was no FM system ordered for him. "Not a problem. They're coming today to bring him an FM." Wow!! Many of you may remember the battle we had when CJ started Head Start and the FM was nowhere to be found...for weeks!

In addition to that, his teacher made a point to call me ahead of time and seek out my input regarding what he'd need in the classroom. She admits that she's never taught a Deaf student before. I let her know that was fine. I've never parented a Deaf child before CJ, either, but we seem to be doing okay so far. She seems very opened to learning how to work with CJ and insure success for him.

As we were talking, I described some of his wacky sensory issues. "Why hasn't he had an OT working with him?". "Well, our last school said it wasn't academically necessary". "Okay, we'll have the OT and the PT come observe him and decide what they think." Really?? Services being offered (even suggested!) without a fight?? Someone pinch me.

Today I got a call from his Deaf Ed. teacher. She is already on the job with him. She went and visited with him today, provided his teacher with lots of valuable information, set him up with his FM, ordered his IEP meeting, and made contact with me to inquire about what we'd be needing for him. Again, WOW!!!

We took CJ to the oral Deaf school in the area right when we moved here so he could be tested. They found a few issues with him.

*He is developing a lispy sound when he tries to say [s]

*His expressive skills outweigh his receptive, so he easily fools you into believing he understands everything you say.

*When he doesn't really hear something the right way, he just chooses another word that sounds similar and assumes that's the word you meant.

*He needs some work on his auditory processing.

While I appreciated the testing and the suggestions, I knew I was in for an uphill battle getting the school to implement those suggestions. When his teacher called today, she said "I've also looked over his testing from (the school), and have contacted the speech department to implement their suggestions. I'll be conducting the rest of the needed work for him". I was shocked, almost speechless. (Almost, people. Don't get all shocked that I was at a loss for words.)

So, there you have it. We are three days into first grade, and things are going well. I think we are in a place that is fully prepared to work with him and help him succeed. What luck!

Finally Moved and Ready to Blog Again

2010-08-20T16:36:00.002-05:00

There are so many updates to post about, but I'm a little bit limited on time. I will be posting at least once a day for the next little while as I try to get caught up. Hopefully that will start a new habit, and I'll be more consistant like I used to be. While you wait on those fun updates, here are a few exciting points to note.

*Our new school district is on top of things that CJ already has been given his own FM system even though we haven't done his ARD.
*CJ was tested by the oral school for the Deaf, and our district is going to honor all of their recommendations. He'll be getting speech (finally!), itinerant services, sign language instruction, and more.
*Liam will be going two to three mornings a week to the oral school paid for by the state.
*CJ's sensory integration issues are finally going to be addressed.
*There are a few other Deaf children at church, and CJ has become friends with one of them.

I'll be back very soon to address all of those things little by little. There are so many happy updates to report that I don't want to miss a thing.

Bittersweet Blessings

2010-07-08T23:30:00.002-05:00

Moving has proven to be more heart wrenching for me than I expected it to be. There are just so many things here that I am very attached to, and leaving those things behind is traumatic. I am very bonded and completely trust our ECI team. They are AMAZING people and have been the glue that's held me together more times than I can count.

We sat down today as a team to work on Liam and Drezden's plans for when we move. The new state has already said Liam will be able to attend an excellent program for kids 18 months and up who are hearing impaired three mornings a week. It's a HUGE blessing, but my heart doesn't even want it. I don't want someone else to take charge of teaching him, even though I know it's what is best for him. And, more than anything else, I don't want someone else in charge of my kids' services. We've had the same service coordinator since CJ was about seven weeks old. That's nearly seven years now. While building friendships with clients is very frowned on, seven years of being someone's rock has led to a great friendship with her. I can't even breathe when I talk about leaving and not taking Jo with us.

As we were working through Liam and Drezden's plans and acknowledging that all this hard work and planning will probably be put on the backburner anyway, I just sort of lost it. I'm so not ready to trust anyone else with these precious children. I know we're going to be so blessed for moving, especially in this aspect. I just had that the blessings have to be so bittersweet.

Don't Touch That!! (Again!)

2010-07-06T08:55:00.002-05:00

I'm pretty sure Liam is going to be my dare devil child. CJ was always very curious, too, and could get out of just about anything. This is a different kind of daring that I see in Liam, though. His is the kind that ends him up in the ER frequently. Isn't there some sort of speedpass parents can get for when they have children like mine who consider ER doctors and nurses to be like some sort of extended family?

We had a lovely 4th of July dinner of hamburgers cooked on the grill. Since we're in a tiny little apartment, we just have a tiny little grill. It's one of those $20 ones you can get at Wal Mart. Not even a little bit fancy. It stands about a foot and a half tall, cooks about 6 burgers at a time, and just does its job and nothing more.

After finishing eating, CJ decided he wanted to eat his cupcake on the patio. No big deal, right? Well, it shouldn't have been, but he forgot to close the door behind him and Liam toddled right on out the door. Because he's the most inquisitive and accident prone child ever to walk the earth, Liam had to make a bee line to the still hot grill.

Byron and I saw it happening, and it was one of those Twilight Zone moments where everything happens in slow motion. I dropped everything and flew out to him, but it still wasn't fast enough. Both hands and one fore arm had already touched the grill.

I quickly took him to the Acute Kids Urgent Care that was down the street and they sent him on to the Children's ER in Plano. The ER at Children's decided he needed to go to the ER in Dallas. ARE YOU KIDDING ME?!?! We all know how I feel about Children's of Dallas.

I fought and argued and disagreed with them. These burns aren't nearly as bad as the one he got a few months back. I knew he was fine, but they were adament that he needed to go. They wanted to send him via ambulance, but I put my foot down. No. Way. Is. He. Going. On. Your. Ambulance. He wasn't crying in pain, the burns were not above second degree, the swelling had slowed down significantly, and there was no reason to justify such insane measures. The doctor in Plano insisted that the swelling could get worse and he could lose his fingers. ARE YOU KIDDING ME?!?! Really, this wasn't half the burn he'd gotten last time. Really.

I finally relented and agreed to take him myself to Children's of Dallas so the burn people could look at it and tell me he was fine and just needed silvadene and treatment with the pediatrician. I also said they'd have less than 30 minutes to get him into a room of his own away from other sick children before I'd take him and leave. In my mind, the risks of being there far outweigh the benefits when you consider his health. They did do well. I'll give them that. He had his own room within ten minutes of arriving. That's all they did well in, but at least he was in his own space.

It took an hour or so for the burn specialists to come in. They took a few minutes to look at him and the conversation went something like this:

"How did this happen?" I told them the story.
"How many kids do you have?"
"Five"
"And, what do you think needs to be done here?"
"I think he needs silvadene, gauze, and to be seen by the pediatrician every other day or so for the next 7-10 days where the pedi will change the dressing and debride any blisters that have opened".
"You clearly know what you're doing, and don't need to be here. Let's get him ready to go home".

Finally!! Someone who was reasonable enough to realize that I can parent my child AND that he didn't need to be in that nasty ER. That's where it ended, though. Apparently a child can't be sent home until a regular doctor sees him. Really?!?!? He's there for a burn so shouldn't it suffice that the burn doctor saw him and said he could go home?

Well, it was the 4th of July. It was getting late. Accidents started happening and the ER was filling up (which is why I didn't want to go there in the first place, but what do I know? I'm just the mom). Anyway, we waited and waited and waited. Finally a "doctor" came in who had psychology on her pretty white jacket. Great. They sent my kid a shrink because that's all that was available?? Really, I was ready to go home. Couldn't they just dress it and send us on his way? This is how the conversation with her went:

"Can you tell me what happened?" I told the story.
"I need a medical history. Does he have any history of illness?"
"He has a pre-disposition for C-Diff."
"What's that?"
SERIOUSLY? ARE YOU KIDDING ME?!?!?! At this point, I knew expaining NEHI would be more than a challenge, so I just dumbed it down for her so she'd understand.
"Does he need bloodwork do you think?"
"No, he's here for a burn."
"Any fever?"
"No, he's here for a burn."
"Any fever or coughing?"
"No, he's here for a burn."
"What do you think needs to be done here?"
"I think he needs silvadene, gauze, and to be seen by the pediatrician every other day or so for the next 7-10 days where the pedi will change the dressing and debride any blisters that have opened".
"Hmmm...let me go ask someone what we need to do".
"Ok, but can you make it quick? The specialist said he's good to go, but we need you to sign it off."
"Any sign of ear ache or anything?"
"No, he's here for a burn."

Yeah. It went that well. I'm not even exaggerating. I HATE that ER. (I think I've mentioned that before, though).

Anyway, we finally got to leave around 3am. I got home around 3:30 and had a total of three hours' sleep before having to get up and take him to the pediatrician who was only opened half a day that day.

Our doctor took one look and said, "They wanted to ambulance him for THAT?" He laughed. What did he do? He applied silvadene, dressed the wound, and asked us to come back tomorrow so he can treat the wound, debride the blisters that are open, and watch for signs of infection. Hmmmm...what a gret idea. Wish I'd thought of that.

Ding-A-Ling

2010-06-26T12:18:00.003-05:00

CJ finally had his ARD last week. I'd been asking for it for a while, but there was a glitch in the system, and the school thought it'd already been done.

There isn't really much to be said about it (which is a good thing really!), but I had yet another embarrassing moment that (as usual) needed to be blogged. I thought I was really smart because I had a friend watch my four oldest kids for the ARD. I kept Liam with me. As usual, Liam felt the need to completely disassemble the meeting room. There was literally nothing he didn't touch, so I assumed he was the reason I couldn't find my phone when the meeting was done.

I had heard my text message alert go off once during the meeting, but ignored it to focus on the discussion. I KNEW because of that moment that the phone was in the meeting room. It wasn't in the diaper bag and I had no pockets. Everyone was flipping things over, looking under and inside of everything they could find. The phone was nowhere to be found.

Finally, I asked our Deaf Ed. teacher to just dial my phone so we could find it when it rang. Still, everyone kept looking while we waited for it to ring. Finally, after about 30 seconds (and just when MR. TRAW THE PRINCIPLE was standing right next to me), my bra began ringing. Nice.

Our Kindergarten Graduate!

2010-06-03T13:27:00.003-05:00

Our Graduate
CJ and Jim, his bestest buddy EVER

CJ and Mrs. Cowart, who might very well be a saint.

CJ with Mom and Dad

Showing off his cowboy boots, which he wears every day on the wrong feet with his pants on backwards...or shorts in this case.

By some miracle, CJ survived a full year of Kindergarten. He knows more about reading, more about counting, more about sharing, more about practicing self-control, more about teamwork, and a lot more about how to drive a teacher completely bonkers.

Yesterday was his Kindergarten graduation, and he was so proud of himself. His buddy, Jim, came just in time to see him march in with his class. Being the CJ that he is, he did a goofy little dance when he saw us, and then held up the line long enough to ask what was for lunch. Figures. Silly kid.

He proudly sang the three songs they've been practicing. I felt like I already knew those songs because he's been singing them around the house for a few weeks now. When his name was called, he shook his teacher's hand and then Mr. Traw (the principal) and Ms. Dowell (assistant principal) with great pride.

After the ceremony, we followed him to his classroom for pictures. He was so excited to show Jim his stylin' cowboy boots. He wears those boots every single day. Usually on the wrong feet, but who is counting?

So, now we move on to our new school. I don't know that we'll ever find another teacher as amazing as Mrs. Cowart was. She was always fair and firm and loving with CJ. It takes a special person to make as much of a difference in his life as she has.

It's Time Someone Says Something

2010-05-24T17:52:00.004-05:00

I don't usually ask that anyone promote my blog. I'm not asking for that today, either. BUT, I would ask that you post a link to this particular post to anyone you know. Post it on Facebook, Twitter, your favorite local news link, or whatever. It's time for someone to speak up, and make things right.

As you know, Liam has spent a lot of time in and out of hospitals. Thankfully, his most recent stays have been very brief. Through it all, we've had our fair share of incidents with one hospital in particular. You may recall THIS INCIDENT or some of the many things that went wrong over the summer while he was in the care of this particular hospital. We had a doctor tell us we can't choose our child's color when we expressed concern over him being blue, nurses fail to come despite alarms going off and us begging them to come in only to discover that he truly was in distress, and had his oxygen turned off by a cleaning lady who told us the O2 was really just optional. I let all of those things go, although I did blog them for my own therapeutic benefit.

Well, they've screwed up again. DALLAS CHILDREN'S HOSPITAL, IT'S TIME YOUR NAME BE PUT OUT THERE FOR EVERYONE TO KNOW ABOUT! I am typically a very reasonable person, but things have got to improve there before someone is seriously injured or billed unreasonable prices due to stupid mistakes.

Back in October, Liam had some trouble and spent a little time in the hospital under observation. He had chest X-rays, and a test for pulmonary hypertension. We were there just under 24 hours, and were billed just over $7,000.00. Of that, we had to pay $50.00. Our insurance covered the rest. I blogged that stay HERE. Overall, I was pleased with the whole experience.

Then, in February, he got RSV and had some trouble wanting to drink. His sats and disposition were fine, but Dr. Sanchez wasn't pleased with the amount of fluids he was taking. Since she couldn't see him in her office, she felt like she wanted him admitted for observation just to be sure he was okay.

This stay was so minimal that I didn't even blog it. We arrived and he was admitted to the unit around 8pm on the 18th of February. He got a bag of rehydrating fluids, had some chest x-rays, and some breathing treatments. The respiratory people gave him the meds, but I administered the treatments. Other than that, the stay was identical to the stay in October. He was on the same unit with the same nurses and the same doctor overseeing his care. We left at around 5pm on the 19th.

The price tag for that stay? $27,778.00. Yep. You read that right. I called to figure out where the error was and they said he was inpatient so everything costs more. I said that, no he was there for observation. They argued. I fought. They argued.

I called back again today and begged them to compare the two stays and see that he received essentially the same treatment both times. They relented and said that he was inpatient because it was 25 hours that he was there in February. This is the exact conversation we had:

"What? 8pm one day to 5pm the next day is 25 hours?"

"Yes, ma'am. It is."

"No, it's not. Are you crazy?"

Customer service rep. starts asking another billing specialist to help her count, and they both agree that it's 25 hours.

"Seriously? Can I talk to someone else?"

"Who?"

"Someone who can count would be great!"

"Ma'am, count it. It's 25 hours."

"No, it's not. 8pm today to 5pm tomorrow does not equal 25 hours."

"Yes, it does."

"Fine. Let's count each hour. Let me get a piece of paper."

"That's a great idea, ma'am."

We count. I get to 5pm the next day.

"21 hours! Ding, ding ding! It's 21 hours."

"Can you please hold?"

"Um, yeah. Sure."

She comes back to the phone and concedes that it is indeed less than 25 hours. (Yeah. Duh!) Then she says she's looking over the itemized bill and there are the two $10,000.00 IV injections he received. Um, WHAT?!?! He got IV fluids for hydration in case he was truly dehydrated.

I ask her to please tell me what the drugs were for. She says she's never seen this drug listed before, and has to ask a nurse. She'll call me back in a few minutes. I figure I'll be waiting about 25 hours.

So, one of two things has happened. Either A). He was billed twice for a drug he never got. OR B). My child was negligently given a very expensive drug he was never meant to have. Which do you think it was?

On so many levels, there are things seriously wrong here.

1. If he really was an inpatient, the hospital justifies charging a three times as much for the stay even though he got exactly the same treatment as when he was there for observation. That's like saying two people could show up to the grocery store for a gallon of milk. One could come in a rolls royce and the other on a motorcycle. One would be charged $200.00 for his gallon of milk while the other pays only $4.00. And we wonder why medical bills are so out of control in America? Good hard working Americans are paying high premiums for insurance only to be charged huge fees for care they never received. I even called the insurance to report the problem, and the insurance felt that these were reasonable. I told them that Liam hadn't received some of these things (2 IV's at $10,000/each). They did nothing. Just paid it out, and charged me a high premium for it. NOT OKAY!

2. The people in billing at Dallas Children's Hospital not even able to tell time let alone recognize how many hours a child was in their care. These are the billing specialists! These are the people who take my credit card number and apply charges to it. THEY CAN'T COUNT TO 21!!! This is a serious problem. (I genuinely hope that call was recorded.)

3. A child was either given a drug he shouldn't have had, or he was billed for very expensive drugs he should never have had. Either way, it's a problem that needs to be resolved.

I'm still waiting to hear back from the girl in billing who is looking into the IV charges. She said she'd call back in a few minutes. That was at 2pm and it's now 6:31pm. So, about 25 hours later and I'm still waiting. ;)

I want the record to show that the doctors and nurses involved in this situation did their jobs well. They paid attention to my child's needs. They listened to my concerns. As always, the direct care staff did there jobs precisely right while the executives and white collar workers screwed things up. Again.

I'm hoping you'll share this story with anyone who will listen. Forget health care reform. Simply fixing billing and fact checking processes for medical care could potentially save us all more money than we can count.

I may be just one voice, but my voice matters. When it's combined with other voices, it is heard. For the safety and best interest of our wallets and more importantly our children, feel free to share this post.

In all fairness to the hospital, I will be updating as changes occur. I'm sure this situation is bound to be corrected in quick time.

Baby Steps

2010-05-23T21:45:00.002-05:00

Liam is finally taking some baby steps! I mean that literally. He isn't really walking all the way yet, but he is taking a couple of steps here and there. I'll take that. He kind of looks like Frankenstein when he does it, except he doesn't have funny scars and screws coming out of his neck. He also doesn't have a flat head, but other than those few things, I'd say he's got a lot in common with Frankenstein.

His hand is also just about completely healed! I'll have to take and post some more pictures of it so you can see the progress. I'm so relieved that it's healed so nicely and with what appears to be the minimal amount of pain. No pain for Liam takes away a lot of the Mommy guilt for me.

He also seems to be really interested in learning some new signs. This past week my friend, Kelly, watched him for me while we moved. I went to pick him up and he looked like he was doing something from I Dream of Jeannie. You know how she crosses her arms one at a time and then blinks her eyes while bobbing her head forward? That's what he was doing. It was exactly the same. I asked Kelly what it was, and she said "Oh. We taught him to pray". He is still doing it, and I think it's so cute. While it's not a correct sign, it does serve as a reminder that he's really ready to communicate.

Liam is really enjoying this temporary little apartment we're staying in. It has a glass fireplace that he seems to think is the greatest play area ever. The only down side is the trail of soot that he leaves throughout the house when he's done. He also loves the mini blinds mini blinds that are all over the apartment. I have quickly learned that I can't walk around the house half dressed because I have to keep the blinds up high enough that he can't reach them. He is a real pro at bending them all out of shape.

So, there you have it. Liam's most recent baby steps. Pictures of the Frankenstein walk, the healing hand, and the Jeannie prayer coming up soon...

Mom, Do NOT Feed Me Baby Food Mush!

2010-05-10T21:32:00.004-05:00

We are still working on Liam's feeding. We have made progress in terms of bananas and yogurt. I can put almost anything in yogurt, and he'll eat it. But, we haven't gotten to where he'll eat other things of similar consistancies to yogurt. I decided it was time to at least try. Here's how it went.

Strawberry Mango Yogurt-Check!

Fresh Banana-Check! (actually he ate two bananas)

Baby Food Oatmeal With Pears and Cinnamon-Um, no thanks. Not so much.

Baby Food Turkey Dinner With Potatoes, Peas, and Carrots-Not a Chance in Hell.

As you can see from the photos, though, he was satisfied by the time he was done. He loved that banana best of all. The only downside was that I then had to redress his burn because of all the banana guts in the dressing.

(By the way, we saw the dr. today, and his burn seems to be healing according to what should happen. So far, no complications. We will take that!)

At Least it Hasn't Slowed Him Down Much

2010-05-09T13:03:00.003-05:00

Liam's hand has been a constant focus of our attention as we've worked to be sure it heals okay, and doesn't allow infection to get in. He has been to the doctor everyday since it happened, except for today. The doctor yesterday said we could go one more day before going back in again tomorrow.

Some of his blisters have started to burst, which really stresses me out a little bit. Still, the doctors say we're good to go for now. The great news is that he doesn't act like he's in even the slightest bit of pain. He's still crawling, laughing, bouncing, squeaking, burping, and everything else just like the Liam he's always been. It surely hasn't slowed him down much.

Feeling Hot, Hot, Hot!

2010-05-05T23:19:00.002-05:00

Well, it has finally happened. I've had five kids and have never once had to go to an ER over major injuries. There were two times Aiden fell head first and we had to take him in to be sure he was okay, but both times turned out to be fine. Liam is bound and determined to be the child who turns my hair completely gray.

I was getting ready to take him to speech this morning, and he was crawling around. I never let him out of his crib until I'm ready for the day, but he had taken off his diaper and peed all over the bed. Anyway, I turned on my hair straightener and went to get a shirt from the closet.

Apparently, Drezden went into the bathroom and Liam followed him. Liam pulled the hot iron down off the counter and held it with his hand. HE SCREAMED!!! I got to him as fast as I could, but it felt like an eternity. He didn't know to put the hot iron down, so it was actually directly on his skin for a few seconds.

I ran his hand under hot water, but the blisters just kept coming. He has a burn in the perfect shape of my flat iron. I feel awful. My power, sweet, accident prone baby!

We got him to the ER as fast as we could, and the dr. said we got pretty lucky. Just second degree and no need for surgery right now. Lucky? Well, I guess so. He screamed for two hours straight, and then they gave him some motrin for the pain. That took enough edge off that he fell asleep.

He is all bandaged up and will see his pediatrician in the morning. The blisters have literally tripled in size and are freaking me out a little, but they're still intact. Everyone tells me it's all good as long as the blisters don't rupture. I hope they're right.

Anyway, there you go. One more piece of proof that Liam is trying to make sure I go gray a lot faster than anticipated.

I See a Lot of First Dates in His Future

2010-05-04T16:21:00.003-05:00

Liam is working hard on learning to eat. It's been a challenge, but he's making leaps and bounds. I finally decided it was time to take the next step with him, and see how he'd do with self-feeding. Jan (his SLP with ECI) says I need to get over my sensory issues with sticky messes and really let him get into. So, I did.

Here you can see the results of that. As you can see, he needs to be fed naked pretty much every time. He also holds his spoon upside down, or in the opposite hand that he's feeding himself with. Lastly, it seems he gets a big on his face. And arms. And tummy. And in his hair.

Yeah. I see him getting a lot of first dates. I'm not so sure about second dates, though.

Only the Happiest Updates to Share

2010-04-30T15:07:00.002-05:00

I know it's been way too long since I've updated. Things have been nutty with selling our house, buying a new one, and all the craziness that comes with just living in our house. I promise things are bound to slow down soon, and I'll be better about posting more often.

I did want to be sure to stop by and leave some AMAZING NEWS on Liam. HE IS TOTALLY OFF OXYGEN!!! Don't adjust your screen or check to make sure no one dropped something in your drink. You read that correctly. Liam is free of his tether. And he is doing amazingly well!!!!! He does still have one more test to take at home to check his sleeping oxygen levels, but that's about it. We are so excited for him.

He's also learning to leave his hearing aids alone for longer and longer stretches of time. He has found his voice, and loves to use it. Hopefully he'll eventually get to a point where he can use his voice to actually form words. One can hope, right?

Moderating Comments

2010-04-10T07:26:00.003-05:00

Some of you may have noticed that I have a regular commenter on my blog who uses Chinese writing every time. I have set the blog up to require comment verification, and that hasn't filter this particular poster out. Clicking on his/her writing will lead you to a pornographic website. To prevent this from happening, I've had to set it up to moderate comments.

PLEASE continue to post your amazing comments. It helps me feel like I'm not talking to the wall when I write. I will approve them all as quickly as they come in. Well, not all. The porn site will no longer be a problem.

An Exciting Accomplishment for Liam

2010-04-08T22:26:00.002-05:00

I've mentioned several times about Liam's oral sensory issues and his difficulty learning to eat. It has been a very slow process with continual progress. He has gone from only taking formula to accepting yogurt to accepting most anything in his yogurt to pediasure. Progress, progress, progress. It's so great to see him making leaps and bounds in something so very important.

So what is the big exciting accomplishment? Banana. Yep. That's it, and it is truly an amazing thing for him. It's not just that he's eating mushed up bananas. Tonight, I took his spoon and just used it to break off pieces of banana.

He took the food off the spoon, moved it to the side of his mouth and CHEWED. HE CHEWED!!! And then, the biggest thing of all...HE SWALLOWED IT!! Go Liam! Since he did so well, I handed him 1/4 of the whole banana just to see what he'd do. He ate it!!! He self-fed, bit pieces off, chewed, swallowed, and went back for more. That kid ate the whole dang banana!!

He is also signing up a blue streak. He isn't quite to where CJ was at his age with signing, but he is catching up. I'm so excited for him and for the amazing steps he's taking in progressing toward becoming the amazing person he's destined to be. I couldn't ask for more.

The Decision Was Easier Than We Thought

2010-04-02T07:59:00.002-05:00

We are going to move to the area closest to Byron's work. After lots of research, we have discovered that the ward area we love so much doesn't have one single house in our price range that would meet our needs. That made it a pretty simple decision. I think we will benefit from amazing friendships in the other ward even if we don't live directly in their boundaries.

Our Hearing Loss Blog Has Brought Us Blessings...and Hard Choices

2010-04-01T16:45:00.001-05:00

Decisions, Decisions

I may have made mention of the fact that we are being relocated. Things have really fallen into place and the Lord has made clear that it is absolutely His intention for us to go to this new place. While we hate to leave behind those that we dearly love here, we know there are blessings to be found there. Hopefully we will also be able to bring blessings to those we meet.

We have a big decision to make right now, though. Where should we live? The decision was going to be quite simple until last week when everything changed for us.

A few weeks ago (maybe even a couple of months), I got a message on my hearing loss blog about a boy who was working on his Eagle Scout project. He was creating a blog and a website for deaf and hard of hearing kids like himself to get to know each other and share stories. The poster asked me to put a link on my blog to his and then to write up a story for his website. No problem. I posted the link, and then went over to his site and told him he could use any stories or experiences from my blog he wanted.

Last week, he e-mailed me and said he’d noticed that I had “I am a Child of God” and “Teach Me to Walk in the Light” playing on my blog. He asked if I happened to be LDS. I told him that I was, and he then asked to friend me on facebook. I agreed.
About a day later, I got a PM from him saying that he’d noticed that I mentioned moving to the place we're going to. This shocked him because he lives there. His dad is the bishop of his ward. He was so excited about this. To be honest, I was stunned. My blog has been up for over a year now, and this was the first time I’d made contact with him. It just seemed like things were falling into place.

We exchanged questions and answers, and I learned that his ward has him and TWO OTHER FAMILIES WITH DEAF CHILDREN. There are 3 year old twins and a 9 year old girl who all have hearing loss in his ward. This is totally unusual for a hearing ward. Plus, all their youth know ASL because this young man has taught it to his peers. Built-in babysitters.

I spoke with the young man’s mom the other day, and she describes the ward as if it’s like the amazing one we’re already in. It’s small, but not minute. There are other parents who have already juggled the school district and told us which schools are great vs. which ones are not. Their ward is having a dinner and silent auction fund raiser for the youth on one of the nights we’ll be there looking for houses, and we were invited to join them that evening. We will be there.

Then, my bishop from when I was a youth contacted me to give me the names of some of the people he felt could help us find a good ward. He had lived in this place, and found some good people. That sister called me today and went on and on about how great this young man’s ward is and how happy we’d be there.

It’s very close to the oral Deaf schools, the children’s hospital, and really anything we’d need. The catch? It is about a 30-45 minute commute for Byron. We really didn’t want to consider an area with more than a 20 minute commute. It really feels like we’re being led to this particular ward in some ways. So, what would you do?

Confusing Hearing Test No Longer So Confusing

2010-03-03T21:09:00.003-06:00

Liam got to visit Dr. Peters today. (CJ did, too, but there isn't really any news there. Honestly, no news is many times good news, right?) We discussed his hearing test from Monday that left us a little baffled about the results.

Monday's bone conduction test showed that Liam might only have a mild/moderate hearing loss rather than a severe/profound loss. We weren't sure what to make of that then, but I feel better about it all now. Dr. Peters reminded me that children with Mondini issues (damage to the formation of the cochlea) may sometimes have hearing that ebbs and flows. In his opinion, it's not a question of if Liam will need a cochlear implant, but when. He is far more inclined to believe the three ABR's Liam has already had.

To be honest, I feel MUCH better about this than I thought I would. I think my heart already knew that Liam is Deaf, and my heart loves that. I love that he is precisely who a loving Father in Heaven meant for him to be. Rather than mourn Liam's and CJ's hearing loss, we'd already reframed so much of it in our minds and learned to embrace and build upon it.

So, we are waiting two weeks to see if his ear infection in his left ear will clear up and then we'll see Dr. Peters again. At that point, we can discuss where we go from here. So, I don't really have any big news. Like I said before though, sometimes no news is good news.

Practically Perfect Pulmonology Appointment Today

2010-03-02T20:45:00.003-06:00

Liam saw the amazing Dr. Rivera-Sanchez today for his scheduled appointment. You have to understand that we LOVE this doctor for him, and really respect her opinion. I give her a hard time, I think, because I am comfortable taking care of him at home when she would sometimes prefer me to let him be admitted for a night to be sure he's doing okay. As much trouble as I give her, I do love what she does for Liam and Drezden. I love that she listens and really seems interested our needs as a family. As much as we love her, we wouldn't mind it if our sweet boys got to a point where they got to see her for things like Christmas get-togethers or in passing at the grocery store.

Today, we got one step closer to that wish. She was SO IMPRESSED with Liam's progress. His retractions are minimal. His room air sats are normal!!! His cough is almost non-existent. His stamina has increased. By all counts, he appears to be a typical 14 month old baby. We still have a few small things we need to work on, but it's all managable. We are so delighted with his progress as is she. (Now we just need to get her happy with Drezden's progress..and we WILL make that happen).

Byron was asking me last week why it is that we have so many of these challenges in our lives. I think it's because the Lord is blessing us with the opportunity to show Him we can and will endure to the end making our best effort and with high hopes and hopefully minimal complaining. Now, we are being blessed with miracles for our efforts. Liam is pretty ahead of the game for NEHI children. Most of them are around 2 years old before they start considering weening from the oxygen. Did I mention that he's 14 months old and only occasionally uses daytime oxygen?

Yeah. It was a practically perfect pulmonology appointment today.

Baffling, Yet Hopeful (We Think), Hearing Test

2010-03-01T22:35:00.002-06:00

Liam had his first soundbooth hearing test today. Trying to do the ABR test, which requires sedation, is really challenging because of his NEHI problems. The goal is to condition him to be responsive in a soundfield situation and bypass the need for sedated ABR testing.

Linda Daniel met us there to work in the booth with him on his testing. Without any hesitation, we got started on his test. As the testing went on, it was very obvious that Liam wasn't hearing much of anything at all. I knew that going in, and it really didn't get me down. Then we moved to the part of the test where we start all over, but with him wearing his hearing aids. With the kind of aids he has, we would expect to see immediate results.

Even with the hearing aids in, we were only seeing about a 60-80db threshold. Not a good thing. On a hunch, Linda suggested that we do the bone hearing test. (I know that's not the correct term for it, but my brain is friend and I can't remember the right word.) They put what looked like a headphone without the foam coverings on him behind the ears.

The idea was that this would put the sound directly into his cochlea, and effectively avoid his entire middle ear. The results? Only a 20-40db hearing loss!!! That's only mild to moderate losses!!!! It would still require him to wear hearing aids, but speech would be much easier for him later.

The truth is that we don't really know what all this means. There are a lot of possible reasons why he was so responsive that don't have a ton to do with his actual hearing, but it's a big question mark right now. We will see Dr. Peters on Wednesday afternoon to determine what we need to do next. It may very well be the bone ABR. (Again, not the right term. I will find the correct vocabulary and come back to replace it later.)

So, that's the the latest news. It's not really real news right now, I guess. But, it is a change in what we thought as recently as this morning, so it's worth reporting.

Great Blog I Hope You'll Look At

2010-02-28T15:38:00.002-06:00

I always try to follow the blogs of those who post on my blog entries. I like to learn what I can about my readers. Each one has something interesting inside them that most always teaches me something about me. As I followed the blog link to a recent poster, I found a link she had posted on her blog to another blog.

THIS BLOG was created by a young man named David who is bilaterally implanted and is working on his Eagle Scout Project. The site will ultimately be the project when he completes it. He is building a site where young D/HoH people can share stories and experiences. He is looking for other D/HoH people, parents, teachers, etc. to send him their stories so he can add it to your collection. I happen to know that the majority of my readers fit that description and have amazing things they can add. I hope you'll check it out, add a submission, and maybe create a link to your own blogs to help David out.

Proof That the Only Thing He Can't Do Is Hear

2010-02-26T21:58:00.003-06:00

I've always made it my personal mission to point out that the only thing my Deaf children can't do is hear. I guess it's not highly likely that they'll be air traffic controllers either, but who's really counting?

CJ has always surpassed the expectations of those around him. Byron and I learned early on never to assume we knew what he was going to do next. Thing only thing we can absolutely expect from him in the unexpected. He has a long history of wild and crazy antics. From drowning the fish (literally! Who knew that was even possible?!?!?) to finding ways to practically cut off his finger with a butcher knife to making friends with every single person he ever meets to demonstrating a drive to beat the odds like no one we've ever met, CJ has ALWAYS proven us unprepared for anything he has up his sleeve.

A couple of summers ago, he taught himself to read. When Kindergarten started this year, he told his teacher what the difference is between an octagon and a hexagon. The list just goes on and on and on. This week was the tip of the iceburg. Our little CJ, who they told us would likely never speak (Ha! Couldn't have been more wrong there.) got a letter in the mail welcoming him to the gifted and talented program. Once again, he has proven that the ONLY thing he can't do is hear.

My Favorite New Quote

2010-02-06T16:27:00.002-06:00

My friend, Liza, has a little boy with similar medical needs to Liam. It's nice having someone else who "gets it" when I freak out over every little runny nose. I keep in close contact with her on facebook, and she posted this quote. I feel like it portrays our family to a T.

"It doesn't take a special family to raise a special needs child. It takes a special needs child to make a special family."

I say all the time that I didn't come equipped with the tools to raise these special kids. They have taught me as I go, and God has given me the tools as I've needed them. One day at a time.

Mommy's Great. Givin' Me Chocolate Cake

2010-01-31T20:39:00.002-06:00

We all know Liam has some oral sensory integration issues. He is just not a fan of anything that is not baby yogurt. Solids are an absolute no go. I baked a cake tonight, and knew he wouldn't be a big fan. That said, I also remembered that Jan (our SLP with ECI) mentioned that it's important that we let him "fully experience" his food.

I decided to give him a slice of the cake and set him free. Other than a messy floor and even messier baby, I didn't feel like I had a whole lot to lose.

When I put the first little bit in his mouth, he gasped and sputtered and gagged just a little bit. I decided to just back off and let him do what he wanted to do with his piece of cake. An hour later, he decided he was done. I didn't find any cake left in the area around him, but that doesn't mean he ate it. We have a dog who sits vigilently by whoever is in the high chair making sure no crumbs ever make it to the ground.

At any rate, the pictures tell the story. I don't know what we did for him to help overcome his oral aversions or to learn about what to do with his mouth. But I do know he's going to be a master finger painter. And he had fun. What more could I ask for?

p.s. If you look closely, you can see the frosting and blue sprinkle in his left ear. That's the sure sign of a happy cake-playing baby.

Gotta' Love a Happy Update!

2010-01-29T11:54:00.004-06:00

Liam has had quite a week. I'm pleased to say it's been a much better week than last week, too!! First, we visited Dr. Sanchez. Liam is officially off all inhaled medicine except for PRN. Yay, Liam!!

I also discussed the fact that it is a NIGHTMARE keeping the O2 on him. It's like the little stinker stays up late at night thinking of creative ways to take it off or something. The other day, I checked his sats and noticed that he was at 97% on room air. That's very good, so I gave him a break. I did this about hourly throughout the day. He spent EIGHT HOURS off his oxygen, and maintained his sats at 97% or better. Good job, Liam!! As I said, we discussed this with Dr. Sanchez and came up with a compromise. Liam can be without his oxygen on as long as we're home and I'm checking his sats very regularly. They have to be at 94% or better, and he can stay off the canula. The second it dips, or if he's sleeping, the canula needs to be on. I think that's a fair compromise.

We also had a very productive appointment with Ms. Linda. She had Liam practice tracking sounds, and he did pretty great despite being tired. The problem he has is leaving his aids in at all. We get maybe thirty seconds at a time if we're very lucky. Otherwise, we have to put things on his arms to keep him from being able to reach the aids and pull them out. We're trying to work on a plan for dealing with it, but so far, Liam is winning the battle.

While we were with Ms. Linda, I mentioned his eating issues so we worked on some of those. We now have a plan to help him learn to work through having food in his mouth. He is very clearly a hungry little monkey, so this will be a great turn of events.

And, the final piece of great news? Dr. K called last night. His testing shows that he no longer has any C-Diff in his system!!!

Sometimes the Right Choice is the Hardest One to Make

2010-01-24T11:05:00.003-06:00

Having a child like Liam who has the needs that he has sometimes leaves me questioning my Mommy instincts. I know I'm a good mom for him, but I don't always know what is the best choice in certain circumstances. This week has been a long and trying week, and my instincts have been tested to the extreme. I am proud to say that I think I did all the right things.

For the past week (almost two weeks as I write this), Liam has had a little cold with a yucky cough. I've had a hard time trying to keep his sats up, particularly when he first woke up. I was already a little out of my comfort zone since we've switched pediatricians with the departure of our favorite Dr. M. I don't know Dr. K very well, but I do know that it's clear he's been doing his research on Liam's case. I'm grateful for that. During the week, we had seen Dr. K. about three times. He instructed me on how to deep suction Liam's nose when he's congested. He can't have decongestant meds, so that was really our only choice. When his nose is clear, he can breathe through his canula, which is really important. He also taught me how to do CPT for him to loosen all the mucus. I hated torturing Liam with the suction, but it was working to help keeps his sats up.

Wednesday when Liam woke up, nothing I did would keep his numbers high. He'd had a rough night Tuesday night waking up coughing until he vomited and then just collapsing asleep when his coughing fits were over. He was clearly exhausted from all the coughing. I knew something wasn't right and that I needed to get more help for him than what I could do at home. I called Dr. K's office, but 2:15 pm was the earliest Liam could be seen and I knew he was struggling. I also contacted our pulmonologist's office and consulted with the nurse. She suggested that Liam really needed help as soon as possible. I agreed, and we headed in the direction of the Children's ER. It's a little over an hour's drive, but would land him in the care of the best dr's for him. At least that's what I was told would happen.

I arrived just after noon, and went in. They saw that he had his O2 with him, so he went to the front of the line. The nurse checked his sats, and he was at 92%, which isn't quite high enough. She had us wait a little longer before taking him back because he needed to be in his own room away from other kids who could make him sicker. She explained that he had his own oxygen and other kids didn't so he could wait longer. Okay, but now he's waiting in a room full of really sick kids and not satting high enough. Whatever. I could see that the ER was packed and was willing to wait for him to have the private space.

Finally he got to his little ER room, they gave him one breathing treatment to bring up his sats and took his history. He was seeing a resident doctor, who I think might have just recently hit puberty, but was sure she knew all the right answers for Liam. This is the exact information I gave them:
-He has had a cough with his sats all over the place for the last week.
-The pediatrician has him taking breathing treatments every two hours with CPT about every four hours.
-His ear is draining huge amounts of green thick discharge. This is new and wasn't there the day before. He is Deaf, and his ears need to be protected.
-He is just recovering from C-Diff, and has missed the last two doses of the medicine for it because we've been so focused on the breathing issues. He needs the next dose asap because we're just now having normal poop after six weeks of not having that.
-His pulmonologist was going to call ahead to let you know he's here and what to do with him since his lung disease is rare and needs to be treated a little bit differently than others.

The response the "doctor" gave me was the following:
-Yep, his ear is draining. Interesting.
-We all have C-Diff in our intestines, and your pediatrician may have jumped the gun a little bit in giving you those meds.
-The pulmonologist wants him admitted, so he's on a list to get a bed.

After the dr. left, Liam was taken for a chest X-Ray and tested for a variety of viruses. I explained that Dr. K. had already done both of those things on Monday, and that all were clear. They wanted to check again anyway. Okay. Fine. Check again. When he returned from the X-Ray, he received one breathing treatment and 30 minutes of IV fluids. It was noted that, at that point, he was well hydrated, so I have no idea why the fluids. But, okay. I can just suck it up and deal with all of this until he gets to his own room where the pulmonologist can take charge of his care.

Liam went to sleep during the breathing treatment and stayed that way for a long time. In total, he slept about four and a half hours. During that time, his nurse informed me that he'd have to go to a "holding annex" to wait for a room. I picked up my sleeping baby, who didn't even bat an eye and slept through the whole move, and followed her to the annex. It was one big room full of children with confirmed illnesses all divided by little curtains. There was one sink in the room. It happened to be in Liam's little curtain area. Great. Now everyone is rinsing their puke buckets in my child's area.

I was starting to get really nervous about this situation because I know how easily Liam gets sick, and how much damage it does to him. I spoke with the nurse and explained the situation and that he really couldn't be with all these kids. Why take him from a private space to one full of very sick children??? She called in the same very young doctor we'd seen, and explained the situation. Since the doctor was there, I again mentioned the C-Diff issue and that he really really needed that med. "He has C-Diff? Well, he should be in isolation then". Great!! Whatever gets him isolated I am happy to go with. They STILL didn't get him the meds for his C-Diff, though, and it's a drug to be taken every six hours. By this point, he'd missed a good four doses and the clock was still ticking.

The very sweet nurse tried to get him into an isolation room, but none were available. No matter. I was told he'd be on the top of the list to get a bed when one came open. Okay. Fine. I will wait a little longer.

Strangely, all the kids around him got into rooms. Go figure. I was livid. One of them was sent to the pulmonology unit where Liam REALLY needed to be!!! I was hopping mad, and brought it to the new nurse's attention. (There had been a shift change during this whole time). She said, "You're right, but that child went to a two bed room." Okay, I get that, but then at least he was only sharing with ONE other child. Liam was in a space that was starting to fill up again with up to twelve other children. I was willing to take my chances.

By this point, I was just in tears and beside myself. I was questioning my decision to bring him, worrying sick about the C-Diff issues, and it felt like I wasn't even thinking straight anymore. The on-call pulmonologist came in to see him. We'd met him before during our long summer stay. He was kind, but doesn't know Liam's case. He wanted him to have inhaled steroids. Fine. Whatever. This guy always wants to give steroids.

I waited another couple of hours, still begging for him to get out of that situation. Nothing. Finally around ten, the charge nurse came in and said, " I think we have a plan for him until he gets a room." My response? "No. We're done here. We are going home. Please page the pulmonologist and tell him we're leaving. I don't want anything to do with the little resident. She is full of it, and won't listen to my concerns. We are leaving. Now. Please make arrangements."

I couldn't believe I'd just done it. I was so angry, though, and hurt that they'd acknowledged a need for my precious baby to get medical help, but then denied him what he needed. My head was spinning. I knew that, if anything happened to him that night, I'd live with a horrible guilt for life. But I also knew that staying any longer was like a death sentence in terms of what diseases he was picking up sitting there.

The nurse called the doctor and came back to ask me if they had gotten a chance to note his sats while he was sleeping. ARE YOU KIDDING ME?!?!?! The child slept for FOUR AND A HALF HOURS!!! How did you NOT know this?!? How did you not notice him so out of it that he slept through the entire transfer from ER bed to holding annex hell??? That was enough for me. I took him and left.

I sobbed all the way home. I was just beside myself with worry and anger and frustration and the whole thing. It was the worst feeling ever. I called Jo on my way home, and she talked to me the whole hour plus drive.

The next morning, we went directly to Dr. K's office. I told him the whole story through tears. He was so compassionate and understanding...and pretty sure I needed a nap. Really? The three restless hours of sleep I'd gotten wasn't enough? Hmmm...

I pointed out that, in the ELEVEN HOURS that I was there, Liam had received:
-One breathing treatment
-One 30 minute IV fluid treatment for nothing
-One inhalation of steroids through an aerochamber.

He validated my decision and said that, if Liam is ever in that much trouble again, I don't need an appointment. I can just bring him in. If he is there, he will see him and take care of him and not let him suffer anymore.

We checked his sats and listened to him. He was doing better. The problem? He'd begun throwing up that morning and wasn't wanting to eat. My worst fear was rearing its ugly head. C-Diff was coming back in full force. Dr. K and I decided to watch it during the day with the understanding that I could bring him back at any time if I had concerns about the C-Diff. He also gave me some drops for his ears, BOTH of which were now infected and oozing.

Liam played well, took a long nap, but still refused to eat. Then the diarrhea started. I took him back to Dr. K's office where we determined that he needed to be admitted for IV fluids. Gaaaah! I was so angry. This whole part could have been avoided if they would have just listened to me at Children's in the first place.

The irony? Liam's pulmo called me and asked why he wasn't at the hospital when she went to see him. I told her what happened, the whole story, and that I'd gone down there trusting that he would be taken care of and fully prepared to stay through the weekend if I had to. She told me she'd called ahead and told them the following instructions for Liam:
-Regular breathing treatments with CPT
-Listen to the mother. She knows what she is talking about and will only bring him if something is really wrong.
-Keep him away from other sick children.
-Admit him to his own room.

I think we have a plan now. When Liam is really struggling, Dr. K will see him and consult with our pulmo. Depending on what he needs, we will decide if he needs to be admitted here or at Children's. If it's Children's, he will be directly admitted to his own bed. I feel better about that.

So, now that you've read through this loooooooong post, you see why Mommy instincts are sometimes so hard to read. It seemed to be against all logic for me to take him from the hospital that could help him, but I did it anyway because my gut told me it was the best choice. I'm so glad I did. I am proud to report that he seems to be on the road to recovery...now if we can just get him to leave his oxygen on....

Note to Self: Wear a Raincoat

2010-01-17T15:17:00.000-06:00

Liam has had some trouble with eating. He is gaining plenty of weight and takes a bottle like a champ, but solid foods aren't going so well. Anything with chunks or that doesn't have the same flavor as vanilla yogurt or bananas will usually result in heavy gagging, choking, and a general feeling of impending death. We're working with him on it, but he seems to be winning the battle.

On top of that, he is incredibly stubbourn about not wanting to wear his hearing aids. I know this comes as a shock to hear that one of my precious angels might be stubbourn about anything. Rest assured, though, it's true. I'm sure I have no idea where any of them might have gotten that trait from. The problem with him refusing to wear his hearing aids is that we aren't stimulating his auditory brainstem, and speech will be more difficult for him later.

We had his annual ECI IFSP meeting this past week, and I was instructed that it's time to stop telling him no with a smile when he pulls off his aids. I'm supposed to show him my grumpy face and firmly say no while also signing it. Have you met this kid??!? He is just adorable and sweet and happy and loving, and someone is telling me to tell him no??? (Actually, I'm fine with that. Just ask Aiden. I say no all the time. According to him, in fact, I am the "meanest mom in the world".) It's the part where I have to show grumpiness that I hate. Poor kid.

Plus, I'm supposed to start introducing more flavors. The best suggestion is to go ahead and dip his binky in a new flavor and offer it that way. Okay, I guess that seems reasonable enough, right?

Friday, I decided to get a babysitter so Byron could surprise me by taking me out on a date. (Yes, you read that right. Sometimes a girl has to take matters into her own hands if she wants to be taken out). Since Liam has some issues and there are five kids, we opted to bring him with us. I decided that this would be a great chance to work on requiring the aids and offering him new flavors.

We went to the Olive Garden so we could use Byron's gift card from Christmas. As soon as we sat at the table, Liam went for his hearing aids. He was determined NOT to wear those suckers no matter what. Three times in a row he did it, and three times in a row I showed him no with my very firm face and the sign while also taking his hand away from his ears. The result? A broken heart!!! Poor Liam's eyes just filled with tears and a big frown came over his face. It was like I'd just told him there is no Santa Clause. Finally, I just did him a favor and took the hearing aids out for hm so they could be put in a safe place.

Then the food came out. Byron loves to order extra alfredo dipping sauce for the bread sticks. Suddenly I had a really bright idea!!! I would dip Liam's binky in the alfredo sauce. What could go wrong there? I fed him a full container of his yogurt, and then dipped the binky in the sauce. I was just sure this was going to be my most genius idea yet...right up there with taking all five kids to Target by myself just for fun.

Almost as quickly as I put the binky in his mouth the gagging began, then some sputtering and then tears coming down his cheeks as he tried for all he was worth to hold his beloved yogurt with him. And then it happened. Picture a scene from The Exorcist. I had no idea that one little tongue full of alfredo sauce could elicit such a response, but I was wearing the proof that it was indeed possible.

The moral of the story? Next time I listen to and fullow through with instructions from ECI, I should be fully prepared to feel like an ogre...and I should at the very least wear a raincoat.

Another Year, Another Evaluation

2010-01-17T14:31:00.003-06:00

Each year, ECI has to do an annual evaluation and create a new service plan for each child in their services. I can't believe how time has flown. Liam (that's Little Guy's name) had his annual evaluation on Friday. I insisted that we do it at a restaurant because, quite honestly, I never get to get out of the house. I think most of his team thought I was completely off my rocker wanting to do it there, but I was just delighted to get out and do something a little bit different.

Really, there haven't been many changes. Unlike CJ (aka The Beast), Liam isn't far behind in motor skills at all. In fact, he's doing quite well. With as many obstacles as he's had to overcome, I find that shocking and a blessing all in one. He has proven in so many ways that there are no mountains too high to climb with a little will power.

One thing we really have to work hard on in the coming months is providing Liam with some means of communication. He genuinely hates his hearing aids, and wearing them is a constant battle. He is interested in sign language, though, so we will be pushing that more as a family. I've made it part of CJ and Aiden's chores to spend 15 minutes daily doing the sign of the day/week with him in a game. This week's sign is "Please". Liam has been so enjoying the attention from his big brothers, and it seems to be paying off. If nothing else, he is mimicking the signs nicely.

Additionally, Dr. Peters is pushing for us to spend time making regular visits to Linda Daniel for auditory verbal therapy. Linda will require us to work hard, though I think I'm up to the challenge. The idea of driving the hour or more to see her each time is a little bit daunting, but certainly not anything that can't be overcome. Jan, our SLP, has said she'd like to come with us to AVT sessions now and then so she can continue to maintain what we're doing with Linda.

All in all, I certainly can't complain. As much craziness as we have going on around here, and considering that it's the "sick season" (really when is NOT sick season for us, though?), and that we're in the process of starting a relocation with Byron's company (another post for another day), I'd say all is well. I'm not surprised by that fact, though. In the grand scheme of things, all is most always well.

New Tubes and an Updated ABR

2010-01-09T21:52:00.002-06:00

Getting an ABR hearing test on Little Guy is always a little bit challenging because he can't have the sedation medicine. His ears have been really infected and oozing quite a bit, though, so we knew it was time for new tubes. Since he was already going under general anesthesia, Dr. Peters opted to do the ABR at the same time. I think he was more than a little concerned with how Little Guy would do, but was well pleased in the end when Little Guy came through it with flying colors.

I'm pleased to report that the ABR reported no change in Little Guy's hearing. For some, that would be bad news because lots of people are hoping for improvement. Experience has taught me not to hope for better hearing on my boys, but instead to hope for a slow down in the progression of his hearing loss. This week, my hopes were met with good news. No change means we can keep doing just what we've been doing with him.

His ears still look pretty sore and oozy, but Dr. Peters said they were REALLY infected, so I'm not too surprised about that. I'm just proud of my Little Guy for going in and coming out with a smile. He's a real trooper!!!

He Officially Knows ME!!

2010-01-02T23:49:00.002-06:00

We've been really concerned about Little Guy learning to communicate because we haven't signed with him as well as we did with the Beast, and he is not at all good about wearing his hearing aids. It has really weighed on my mind.

The past few weeks, I've worked to teach him to sign Mama. He was mimicking me, and doing well. I was so excited about just that much. But, the past couple of days he has been signing Mama right on cue and without prompting when he sees me. He is soooooo proud of himself when he does it, and immediately claps for himself. Sometimes he gets so giddy about it that he even lets out a big belly laugh.

I'm so excited about it!!! He knows ME!!!!

Happy Birthday, Little Guy!!

2009-12-26T08:56:00.000-06:00

I can't believe it's already been a full year, but today is indeed Little Guy's first birthday. Every single day I find myself sitting back and thanking a loving Heavenly Father for sending him to us when we really didn't feel ready for another baby. He's the best gift we never knew we wanted.

Little Guy has been far and away our most challenging baby medically and financially. He has challenged us in ways we never could have imagined. As I've documented his progress on this blog over the past year, I've felt so blessed to realize just how resilient he really is. All I can think when it comes to him, is that God must have great plans for him to be having him build such big muscles at such an early age.

So, today will be Little Guy's day. We have a special present for him that will be wrapped in birthday paper, and not Christmas paper. We'll buy him a little cake and a container of banana pudding (his favorite treat) and we'll sing him a traditional birthday tune before letting him make a big mess. And before the day is done, we'll be sure to say a prayer of thanks for letting us have the honor of parenting such a choice spirit.

Happy birthday, Little Guy! We love you!!!!

Merry Christmas to ME!!

2009-12-17T08:42:00.002-06:00

Little Guy is really bad about wearing his hearing aids. In fact, I don't think they've even graced his adorable little ears in nearly two weeks because he has slobbered them to death, and they are back in the shop. Having to wear the canula in his nose has really taken a much higher priority than the hearing aids, and just the canula is a constant battle.

Because we just assumed Little Guy would be like the Beast, we haven't been very good about signing with him like we should. (I know. I can just hear the tomatoes flying at me now.) It's not that we didn't want him to sign. It's just that we got a little too confident in our skills as parents to Deaf children, and got lazy. We neglected the first rule of parenting:" No two kids are alike. No two outcomes will be the same."

We've both been feeling lately that it's time really rev up the sign language skills with him. He will be one the day after Christmas (*sniff*. I'm so not ready for him to grow up yet). By one, we feel like it's time to give him some form of communication. Even if he can't tell us what he wants, he deserves to be able to know what we are saying to him. So, we've started teaching him.

Why do I share all of this? Well, because our efforts are finally being rewarded. I know he really didn't know what he was signing and that he is really just mimicking what he was watching me do. Still, it's so rewarding the first time MY BABY SIGNED MAMA!!!

Thank you, Little Guy!! That was a great Christmas gift.

Santa's ECI Visit

2009-12-10T15:37:00.001-06:00

One of the perks to being part of ECI is that there are the occasional get-together's for ECI families. Truth be told, it only happens about once a year. This year, it was the Christmas party hosted by the local Children's Museum. The thing I love about going to an ECI party is that my kids don't look so "weird" there. They don't stick out like a sore thumb. Most other parents there don't tend to raise a brow at the adorable baby with the nasal canula who is constantly eating his hearing aids, or the very cute two year old with glasses who walks like he's been riding a horse for too long. They "get it" because they have children with similar special needs, too. It was so nice this morning to be able to take a deep breath, set my children free to play, and know they'd be safe and accepted.

Of course, I would be remiss if I didn't also mention a visit from the beloved man in red from the North Pole. Pretty sat and talked to him non-stop, which is ironic because she was in ECI services for speech delays. Apparently ECI worked...perhaps a little bit too well. Snort and Little Guy also enjoyed their visits with him, although I couldn't tell you what they asked him for. I guess that will forever be a secret between them and Santa. I am confident, though, that I will be pulling bits and pieces of Santa's beard out from Little Guy's fingers for the next week.

Well, It Could Always Be Worse

2009-11-25T10:09:00.003-06:00

Little Guy has had a rough week. He's been in and out and in and out of the local hospital. Turns out he had a case of C. Difficile, a bulging ear infection, a sore throat, some lung congestion, and...um....I can't even remember the other thing he had. It's been a long week, but we're home now.

I think the highlight of the week was the trail of very large cockroaches in our original room, which the hospital administration explained to me "must have been brought in by another patient". Ok. Whatever. It's gross.

Really, though. It could have been worse. We could have been in the hospital that we usually have to go to over an hour away. Little Guy's lungs could have been far more infected. We could have been stuck down there for another month. We could have eaten one of those cockroaches. (We'd have to be blind, though. Those suckers were HUGE!!).

We are home now just in time to prepare for and serve Thanksgiving dinner as a family. I'm feeling very blessed for that. I'm feeling blessed having my whole little family together to celebrate the holiday in which we give thanks. I'm thankful for Little Guy and the fact that he smiles and coos and finds joy even in his worst illnesses. I'm thankful for the challenges my children present me with daily. They are there to make me stronger. I'm thankful for my faith. I'm thankful for friends who are willing to help clean my gross house or sit in a hospital room for a few minutes to keep me company or let me shower. I'm thankful for my wonderful amazing husband. He truly is a blessing from a loving Heavenly Father. And, I'm thankful that no matter how bad things are, I always know it could be worse.

Live Speech Mapping

2009-11-14T10:26:00.005-06:00

Big brother, Snort, helping entertain Little Guy.
The computer read-out. The white box represents speech sounds. We want the peaks (showing what he hears) to land within the white box.

Little Guy hanging out during the test.

Chewing the camera cord kept his hands busy and out of the way.

Deanna helped hold the receptor in just the right place for the test. Little Guy looks a little skeptical.

Little Guy loves playing with all the noise toys. This cochlear cowboy hat was his favorite.

A better view of the probe in his ear.

Michele watching the computer so she can use the data to correct his hearing aid programming.

Can you see the tiny wire there? Totally painless, but it does make him giggle with the tickly feeling it gives him.

Holding the receptor in place.

Little Guy can't have another ABR as frequently as we'd like because it's a huge undertaking to work around his breathing issues for the sedation. So, Michele uses live speech mapping to get an idea of how well his hearing aids are helping him.

She inserts tiny wires into his ear behind his hearing aid and then simply begins speaking or making sounds around him. The wires are attached to a computer, which provides us with a read-out of what he is hearing with his aids. From there, we are able to adjust his hearing aids accordingly. It is completely painless as you can see from the pictures, and it's a good alternative to frequent ABR testing.

Free Stuff For YOU!

2009-11-12T20:58:00.002-06:00

My friend, Jami, is amazing at creating beautiful jewelry. I saved Little Guy's first pair of earmolds and had them sent to her. They were so tiny that I knew they'd be the perfect pendants for a necklace. Jami just finished making my necklace, and as soon as I pay for it and get it sent here, you can be sure I'll post pictures.

Why do I tell you this? Well, because Jami is sharing her talents with the rest of the world. She is giving away two pairs of her AMAZING earrings on her blog. Free. And you don't even have to do anything more than tell her what your favorite pair is.

Just go here. Good luck!!!!!

Beautiful Boy

2009-11-09T11:30:00.004-06:00

Little Guy took off his canula. So, before putting it back on, I grabbed the camera and enjoyed the photo opportunity. Hope you enjoy it as much as I did.

Yucky Adhesive

2009-11-08T22:28:00.003-06:00

I'm pleased to announce that Little Guy has been home for three full days now, and his sats have remained where they should be. I couldn't be happier about that.

One little problem we keep running into is the adhesive that holds his canula in place. If I use stuff that is really subtle, he pulls it right off and it tears up his skin horribly. The poor kid just bleeds and bleeds. You can see the sore spots on his face in the pictures. The stuff that is more gentle on his skin is just plain ugly. It's just big and clunky and yellowy-looking.

I've included pictures so you can see what I'm talking about. Without adhesive, he takes off his oxygen right away. Surely there is a solution out there somewhere. And, yes. I do realize his canula is a little bit low in these pics. That is yet another battle we fight daily.

Tomorrow, we will go with Ms. Kristi to conquor the challenge of setting his hearing aids to the maximum benefit. It's much easier to do with regular ABR testing. But, since he can't have the sedation for the test, we don't really know how far his hearing loss has progressed.

Such is life, I guess. Two steps forward and one step back. I can't complain. I think I'd be bored any other way.

Home Again

2009-11-06T14:23:00.002-06:00

We finally got home yesterday. Just four days in the hospital this time. I'm relieved. I think. Little Guy had some blood work done that was "moderately abnormal" and may indicate some pulmonary hypertension. But, the echocardiogram is okay for now.

We stayed a couple more days after that to try and observe and understand why his sats go lowers. We really have no answers. It does look like maybe he's developing some asthma. It wouldn't be a huge shock since two of his brothers have asthma. But it would be a big frustration. Poor kid.

Sooooo, we are home. And we're thrilled about that. We are cautiously optimistic that all is well. In other very exciting news, all of our kids except Number One got their h1n1 vax's yesterday. Number One has to resolve his egg allergy before he can get the shot, so we're waiting for his blood test to come back.

Ahhhh, the joys of parenthood.

And, We're Back at Children's

2009-11-03T10:04:00.002-06:00

Here are the latest updates on Little Guy. We are all in good spirits, and keeping fingers crossed that we can make this a brief stay.

Little Guy had an okay night. Sats remained okay, but he was working really hard to breathe by this morning. I was sort of glad that he did that because it showed the hospital staff what I was talking about. (Okay, so I'm just glad that it validated that I'm not crazy. Something really is wrong with him.) They did a deep suction thing on him by putting a tube down his nose and into his throat. He HATED it, but was breathing much better when it was done. He also is finally starting to cough up all this bright green stuff. (Hope you weren't eating when you read that.) And his lungs are super crackly. The dr. couldn't even hear his heart over all the crackles. That's the really good news because he was clear on Saturday. That means he's more than likely sick rather than it being a worsening of the quality of his lungs. In other words, this is probably not a permanent problem for him. YAY!!

His blood pressure readings are a little high. So, we're also working on understanding what that is all about. Lastly, we're watching for pulmonary hypertension. That is apparently a common side effect to kids with his kind of lung disease. Poor guy.

The original plan was to just be here last night and go home today. Now the goal is to be home at the end of the week. I think that's a great goal. I'd honestly rather stay here and find out what the deal is than be coming and going and never really knowing what is happening.

Another Weekend in the Hospital

2009-11-02T06:51:00.002-06:00

I went to pick up Little Guy the other day after he'd been playing on the floor. His face looked dirty, so I tried washing it. Nope. Not dirty. Just gray. Yikes! I had the King check all of his tubing to be sure everything was hooked up correctly, and then had him bring me the oximeter. 84%!!! Not so good. We increased his oxygen, and that didn't help so we increased it some more. Finally we got his sats into a normal range and waited for the oncall dr. to call us back.

The doctor who returned our call was a total jerk. No seriously. He was just mean. He told me he had no idea what NEHI was, but that I had to bring Little Guy to him to be seen. I asked him to please consult with a doctor who did know what it was. Nope. He refused. What!??! You have no idea what my kid has, refuse to consult someone who does, but you want me to bring him to you???? I think not, my friend.

I got a hold of our regular doctor the next day just as he was starting to look a little bit gray again. She insisted that we go in right away to the ER and had them ready and waiting for us. Really, she wanted him to come by ambulance, but I just wasn't having it. I knew we'd be sitting I had oxygen with me and that I could get there quickly, so I took him myself. I don't think she liked that I did it that way, but it was what I felt was best. Imagine that! A mom thinking for herself a little bit about what is best for her child. Novel idea, right?

Anyway, we got right in and they observed him for a while. Of course is sats looked great while we were there. That's what always happens, isn't it? They admitted him for observation which made me cry for some reason. I think I was just overwhelmed and thinking it would be like last time when we were there for a full month. Plus, the doctor I understood to be on call was the one I'd spoken with the night before who was a pompass jerk and too full of himself to ask for help. WHY would I leave my baby with him??!?

As it turned out, an hour before he was admitted the shifts changed and the partner to our regular doctor came on call. She spoke to me personally as I tearfully explained my objection to letting him be admitted. Swine Flu all over the hospital for starters, but she told me she'd put him on the pulmonology unit which was much safer. I also told her how I felt about him being with some doctor who might not know what to do. Remember the one who wanted to send him home with me knowing CPR and nothing else? Yeah. She was a gem. What if I got someone like her again. Again, the doctor promised me it would be she herself who would be treating him.

With those promises in place, I consented to let him stay. We only wound up staying about 24 hours, so I made it home in time to trick or treat with my kids. and Little Guy got to show off his Superman costume. Can't complain about that, right?

So, we are home now. He has a new nurse who comes daily to check his vitals and a nurse who will be coming twice a week for eight hours at a time. I think the goal is for him to be sort of homebound now. We'll see how it works, and how long we get to be home for.

We've increased his oxygen to a full liter, and it's still a little bit iffy. *sigh* We shall see...

Brotherly Love

2009-10-20T22:50:00.004-05:00

I never cease to be amazed to witness the dynamics that go on between siblings in our home. The most fascinating, I think, is Number One. He has very little tolerance or patience for The Beast most of the time. When he has those moments where he is willing to work with the Beast, though, it's like they're shining moments. He can be so loving and creative with his younger siblings.

The relationship he has with Little Guy is one of pure love. He speaks calmly to Little Guy, pays attention to the little details (like whether or not he's blue...okay, maybe that's a bigger detail), and is just generally protective of him. They have an unspoken love for each other.

Like with The Beast, when Number One decides to show his love, it's a shining moment. As you can see from the look on Little Guy's face, the feeling is deeply mutual.

Pumpkin Fun

2009-10-20T22:45:00.003-05:00

Who says people with special needs can't have a great time?! Each Monday night, we have family night. Sometimes we play a silly game, sometimes we go somewhere fun, sometimes we just hang around and sing songs. It just all depends on the night (and the mood of the children). This week, we decorated pumpkins. We don't usually carve them because pumpkin guts make Number One break out in hives.

I got a variety of crafting supplies, and we went to town. Little Guy's is the one with the canula (it's a real canula that he isn't using anymore. I made the hearing aids out of pipe cleaners). Snort's is the one next to Little Guy's. I thought they came out pretty darn cute myself. :)

Look Who's Standing!

2009-10-20T22:34:00.004-05:00

Well, okay. So, maybe he isn't standing totally by himself. But he is finally pulling himself up to a standing position on things. That is a big accomplishment. We're really excited to see that he is slowly building up more lung stamina. He used to be just too tired to work more than ten minutes or so without a good long nap. He worked the full hour with Ms. Kristi. It could be due to the fact that she completely adores him and he knows it. The fact is that he's got her wrapped around his adorable little finger. Just look at her in those pictures totally in love with him!! Ms. Kristi is his Deaf ed. teacher (and the Beast's, too!). We love when Ms. Kristi comes because she brings some great new toy every time. This week, it was some stuffed animals that sing and light up. I think Little Guy is totally in love with them...and perhaps with her. I don't know how I'll ever break it to him that she's taken.

We're hoping he can keep up the great work. He was diagnosed with RSV today, so we're watching him very carefully. So far, so good. And that's the way I hope to keep it.

You may have also noticed from the pictures that he has big tubing coming down. That's the corrugated tubing we bought and string his oxygen tubing through. It works great at preventing him from strangling himself, preventing siblings from twisting it, cats from chewing it, and well...let's just say it's been truly a life saver.

Hannah Andersson Pilot Cap Ordered

2009-10-16T08:33:00.003-05:00

So, I decided to finally give in and order Little Guy the Hannah Andersson pilot cap. With the Beast, bandanas worked great to keep him from taking out his hearing aids. For Little Guy, not so much. He can get those babies out of his ears and into his mouth in the blink of an eye.

I'm not horribly excited about the pilot caps, but at least it's fall. He won't look like too much of a weenie wearing a hat in the fall and winter. I tried to choose the least weenie-ish colors, too.

The reason it had to be this particular kind of hat is because the material is thin enough that the sounds can still get to the microphone on his hearing aids. Anyone else have any other fabulous ideas on keeping those aids out of his mouth? It doesn't help to provide him with constant oxygen if he's just going to choke to death on a hearing aid anyway.

And, of course, pictures will come as soon as he gets his new caps!