Thursday, December 1, 2011

You Never Know Until You Walk in Another's Moccassins

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.

Wednesday, November 30, 2011

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

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.

Friday, October 21, 2011

The Dates Are Set!!

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.

Tuesday, September 6, 2011

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

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.  

Monday, August 29, 2011

When You Find Out Who Your Friends Are

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!

Friday, August 19, 2011

Our Big Announcement

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!!!!

Saturday, August 6, 2011

The Ultimate Boy Scout

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.

Friday, August 5, 2011

Liam's Exciting Pulmonology Update

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.

Friday, July 22, 2011

A Fun New Skill





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!

Thursday, July 21, 2011

Fantasy Baseball Camp





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.


Wednesday, July 20, 2011

"Mom"

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"

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

Sunday, July 3, 2011

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

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!

Saturday, June 18, 2011

The Perfect Teacher Appreciation Gift

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

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.

Tuesday, May 24, 2011

Trying Something New

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.

Sunday, May 8, 2011

Some Silly CJ Sayings

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.

Thursday, May 5, 2011

The Good, The Bad, and The Downright Naughty

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.

Friday, April 15, 2011

Reality Bites

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

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...

Wednesday, April 6, 2011

The Perfect Gift

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.

Monday, April 4, 2011

"Flower"

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.

Thursday, March 31, 2011

I Love Reporting Leaps and Bounds Progress!!

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.

Tuesday, March 22, 2011

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

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.

Monday, March 21, 2011

By Popular Demand-A Repost

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.

Tuesday, March 15, 2011

Pity? Really???

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.

Friday, March 11, 2011

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

 

 

 
Posted by Picasa

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

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.