Thursday, April 25, 2013

The little things become oh so BIG!

Dear Jayce Wyatt,

Well, it's been some time since my last letter. We've just been so busy and I've been neglecting my blog, but I've vowed to you and Wil (and to myself because, let's face it, this here blog is my therapy) that I'll get back into the swing of things.
When I say "we've been busy" I really mean YOU, my little boy. Let's begin back in February...

You were fit for your first pair of orthotics back in early February. They are called Sure Steps and are no bigger than a napkin. See! 
These little puppies will give you some support when you stand and cruise and eventually *walk*. They come as high as your ankle bone and are considerably shorter than a regular child's Ankle-Foot-Orthotic. They are short because we don't want you to feel hindered in your movements (crawling) while wearing them, but we still want to give you a little support when you're standing up.
As you grow, your orthotics will too. Once you begin spending more time standing and walking than crawling, your ankles and legs may need orthotics that reach your mid-calve to offer you more support, but we'll cross that bridge when we get to it! You spend about 75% of your day with your AFO's on along with your Pumas (stylish shoes thanks to Uncle Nino)! You don't seem to mind these plastic inserts in your shoes, but I have noticed that you're a little slower with them on. Perhaps it's because your AFO's, paired with a shoe that's about a size too big, is a bit cumbersome. But, per usual, you never fuss.

You've been working hard at physical therapy and had your first round of Botox treatments to your inner hamstrings. 3 shots in each leg and it HURT! However... Botox IS amazing and apparently it's not just for the Real Housewives of Orange County. The spasticity you have in your hamstrings doesn't seem to effect your overall movement, but it does effect your sitting, which you will notice in the picture to the right. Obviously, this pic is old and you've improved your posture quite a bit in the last few months (thanks to a lot of core work outs during PT), but this depicts your overall sitting ability quite well.

The muscles in your legs are so tight and this forces you to lean forward while you sit (not the most comfortable position while you play), but since the Botox, we've noticed a huge difference. Your back is straighter, you are able to put your legs out in front of you, rather than have them at a 90 degree angle, and you're able to balance a whole lot better. However, you've learned quickly that this is your least favorite position to be in and since the crawling began, I can't keep you sitting for long. Your next goal is to get into the sitting position on your own. Believe it or not, you never learned how to do that because it was too hard to get those legs in the right position. Now that those hammies are loosey-goosey, we're trying to teach you that your body is under YOUR control! Hopefully relieving some of that tension in your legs will allow you to get around a little easier in general and give your other leg muscles the opportunity to work too. While your hamstrings were tight, your other muscles had to fight against them just to get some time in too. It's all so confusing!

Here is something else you've been working on... I've been trying to "bring your world up" to encourage more cruising from place to place as opposed to crawling. You've been doing a little better each day. Slow and steady you are, my friend. I'm trying not to put too much pressure on you to walk (your brother didn't walk until almost 15 months, after all). I'm trying to remind myself that you've got some catching up to do: you were basically 2 months early, you can't hear, which can effect your overall balance and coordination, and you've been battling your own self when it comes to making your legs work properly. I know you will walk some day, little mister. Until then, you'll be faced with this from time to time!

And last, but certainly not least, you've been working hard on  HEARING! Your surgery for your Cochlear Implant was on February 28. They told us children as young as 12 months are allowed to be implanted and so we did... 5 days after your first birthday. Here you are waiting in your hospital gown to be carried (by your Mommy, thank GOD) to the operating room. (Notice the legs... this is PRE-Botox).
The surgery took longer than your doctor had planned, which made us a little nervous, but it was a 100% success. The doctor had to remove one of your inner ear bones just to reach your cochlea because you are so tiny, which took a little longer than usual. However, you don't need any inner ear bones, really, because the sound never touches the inside of your ear anyways. It's complicated! Does that make sense? I'll try to explain more in a bit, but here are some fun pics from your big day...

Just a few minutes post recovery. You did not "come out" of anesthesia all that well. You were fussy and seemed to be in pain (NOT typical for you) so it was hard to see you like this. I immediately questioned whether or not we had made the right decision to implant, which people warned me would happen. Also... take a look at that face... Swollen! This was hard too! I stayed with you in the hospital overnight and was nervous that it was going to be long, but you went to sleep around 9:00 and I didn't hear a peep out of you until 6:00 the next morning. You slept through every check of your vitals AND every time you were given medicine (orally), which was astonishing!

Here you are the next day... everything was back to normal!

We were packed up and ready to leave quite early the next day because you were doing so well AND because they needed your room for another patient. Ok, we were literally kicked out, which made me real mad, but that's a story for another day. You are such a trooper. You and I did this all by ourselves. No one helped us or escorted us from the hospital. I was simply handed a wagon and we were sent home. With our turtle balloon we went... Can I mention again how sweet you are?!? You never fussed, even while we waited for a prescription at the pharmacy for 20 minutes. I cried, though. I did.
Just a pic of the jock strap you wore 24 hours a day for exactly 4 days after your surgery.
Such a trooper. I tell ya.

Your first bath post surgery. I had to wait almost a full week before I could get your head wet. It was very hard for me. We love bath time around here! Notice your little incision and your shaved hair? Well, nearly 2 months later, your hair is finally growing back. You have hair you know!


And, the final product.
A metal device embedded in your skull attached to 22 electrodes that are weaved throughout your cochlea!
The strangest, most amazing invention ever!

We waited for about 4 weeks and on March 26, 2013 at the American Family Children's Hospital (our home-away-from-home)
you were turned on...
We found out you had profound hearing loss on April 17, 2012.
From that day on, I could not wait to step foot into this room.
Your amazing Ear, Nose & Throat doctor joined us for a quick picture before it all went down.
Jayce & Dr. Diane Heatley (She loves you and we love her!!!)

First, your audiologist let you play while she began programming your processor (the device you wear on your ear).

 And then it began...
I'll try to explain, but please remember that, although I've researched and listened to doctors and audiologist talk about this procedure, it is STILL so hard to understand and even harder to explain. Your first appointment took nearly 3 hours. Your processor is hooked up to a computer where Wendy (the audiologist) is able to program each individual electrode that has been so carefully woven throughout your cochlea by Dr. Heatley.
You wear a device on your ear (similar to a hearing aid, but bigger). On that device is a microphone that picks up the sounds around you and sends them to the processor (think computer, I guess). The processor sorts the sound and sends it to that magnet that's attached to your head. You see that?!? Yep. A magnet. (PS- No more MRI's for you and if you ever travel on an airplane, you've got a little card that you have to carry with you that reads, "I have an implanted metal device in my head!" Cool, huh!?!) So...The magnet sends the processed sound through your skull to the implant and the implant sends it to the electrodes, which are in your cochlea. Your brain figures out what it's hearing via the cochlea. I think. In a nutshell. Huh... Is this right? Now I'm not really sure. All I know is that your ear is completely useless, obviously. Other than attaching that giant processor to it, it has no function. The implant does all the work. Wow, is right!  
We were also sent home with this:
Yes. A Suitcase!
A suitcase full of "accessories" (and not the fun kind you get a NY & Company). Well, maybe I'll think they're fun when we actually have time to practice using all of it. You have numerous adaptors and batteries and battery chargers and a dry box to keep your processor in at night and a cool cover known as a "skin" to put over that ugly gray processor and an adaptor to use on an I-Pad or other wireless device and a microphone you can attach to your processor so you can better understand speech and a light-wear system because you're small and the device is heavy and extra wires and magnets and more, more, more! I think I know how to use all of it, but we really haven't had much time to practice because all we've been working on is encouraging you to listen for sound.
Your speech therapist reminds me often that a cochlea is developed at about 23 weeks gestation and well, your cochlea never had any input. So, she's trying to remind me that 4 weeks post activation is really comparable to an infant hearing for the first time out of the womb. You obviously don't know what Jayce means, not to mention some of the 'basics' that most kids your age can understand: "come here!" No, No, No!" "More?" etc... You've been taking a liking to sound toys as of late though. You're loving rattles and hammers and basically anything that makes noise because you never really experienced them before!
You're also quite vocal! I never knew a deaf baby babbled, but some do! However, those that do babble will stop if they're not encouraged to keep it up. So, that's what we do. Your Dad says you're like a puppy or a lab rat. You want a drink, I wait until you vocalize. You want to have a toy, I wait until you vocalize. Well, not always, sometimes I give you a break and let you point, which you do... constantly!
Your speech therapist has been really pleased with your progress. So far, you are making 6 different consonant sounds and almost all of the vowel sounds. You were also given a test last week to test your receptive (what you understand) and expressive (what you express to others) language. You tested at age level. No delay! No communication delay! This is huge for a profoundly deaf baby. Some how, you have functioned in this world while living in silence, but you have no language delay because of it. My deaf baby interacts with others like a REGULAR, HEARING 14 month old.
Amaze Balls!
The most exciting thing to happen since your activation began had to be when you were placed in the sound booth. Let me back up. It will take months for your cochlear implant to be completely turned on. We go about every other week until mid-May and then will continue to go from time to time throughout the summer. It takes the audiologist quite some time to program the implant and because you're so young and unable to give her feedback about certain sounds being too loud, etc. She has to rely on the computer. Your cochlear implant/hearing was tested last week in a sound-proof booth. While here, your audiologist tested different sounds and frequencies. You've been in the sound booth before and we've received your Audiogram (basically your hearing ability in graph form) before. It's bad! Your right ear, the one in which you have PROFOUND hearing loss does not pick up sounds that are produced upwards of 100 decibels (Really, really LOUD). Think jet engine. Literally. You could not hear an airplane if it was running right next to you. Now, only 3 weeks post activation, you are hearing sounds between 30-35 decibels! This includes ALL of the speech sounds. It's hard to understand and the picture is hard to see, but basically your right ear functions as normally as possible. The implant works, in other words!

I'm sorry I can't rotate this picture, but hopefully you can see...
The purple marker on the top shows what you could hear before the implant.
(The blue marker represents the left ear without a hearing aid).
The purple marker on the bottom audiogram shows what you can hear 3 weeks post activation.
So, that's that. I told you you've been busy!
A year ago today, I never imagined you'd be doing as well as you are. You are truly amazing and such an inspiration. You've literally defied all of the odds that were stacked against you. We hoped and prayed for a baby who could walk and talk and see and hear... And you're doing it! It was hard at times to keep the hope alive. It was hard to not get pulled down into the depths of despair. After all, many, many kids with congenital CMV don't have the outcome that you do, so we know we are so very lucky and blessed. It's all you, little man. You have this quiet determination. This peaceful, strong will about you that is like nothing I've ever seen. Your speech therapist (who I LOVE) reminded me after your language test how special you are and she tried to tell me it was because of all that we do. I guess I can give myself and your Daddy and your brother a little credit. Anything you need, we provide for you! But, I really just think it's you. You choose to fight and you have from the very beginning. Thank you for that.
I'm not scared anymore.
I'm really not.
This is because of you.
You can do anything!

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