Monday, April 29, 2013

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!

Monday, April 22, 2013

Three years and some change...

 I've done it again... I started looking back at old pictures and videos and felt my heart slowly move up into my throat and I felt the tears well up in my eyes. How can it be that you are three? Three years old? That seems completely impossible! I remember when we brought you home. I remember everything about that day. I remember how scared I was that I wasn't doing everything right (that has yet to go away, by the way) and I remember how much I loved sitting you on my lap and talking to you. You quickly became my most favorite thing in the world. My most cherished little person. The person that made me... Me.
Now I look at you and see so much more. I see your father, first of all. It's taken me three years, but I'm beginning to believe and recognize what everyone says... you look just like him. I'm also beginning to see me. You're so much like me. You are friendly and outgoing. You love to be "doing" something. You love to read books and chat and sing songs and dance and be silly. You've also acquired some of my not-so-fabulous attributes as well and this makes me NERVOUS. You're emotional and dramatic and stubborn and quite sensitive. Now, these traits I'm usually able to keep in check (I am in my (eek!) thirties, after all), but these fabulous personalities are quite tricky for you to manage, which is putting a damper on our relationship these days. You see, we have a tendency to "butt heads". We fight a lot and this is killing me! I miss us... And, I blame myself for it all...
I try to remind myself that you ARE 3 years old, after all. And everyone tells us that 3 is tricky. The hardest, really. You seem to be having some sort of identity crisis, which makes sense. You're stuck in between baby and big boy.

But, you've had a lot happen in your little life this past year... And, I blame myself for it all...

Before we had Jayce, you were my everything. My whole world. When Jayce was born, you were 23 months old. I look back at pictures and you looked like a baby. All siblings struggle with a new baby, of course, but your situation was different. In the beginning of Jayce's life, it wasn't just getting use to a new brother. No. It was so much more.
Our new baby was sick and too small to come home. You were passed between grandparents just so that we could juggle NICU visits. You never experienced meeting your brother for the first time while sitting on your Mommy's lap like most big brothers do. You met him when he was two weeks old, through a plastic incubator.

When he came home, it wasn't a joyous occasion filled with presents and smiles and snuggle time... we tried, but it just wasn't that. Jayce had appointments and follow-ups, which meant more time with grandparents for you (not like you weren't completely spoiled, but it was not what we had planned). And I blame myself for it all...

Those first few months as a family of four were not what we had expected. OK, not what I expected for us. For you. And with everything that we went through, I have to remind myself that you were here too. Will I ever forgive myself for that?

On top of all of Jayce's medical issues and therapies, Jayce had colic. Real. Life. Colic. I never knew what it was, or if it was real... IT IS. Every night from 4:00-8:00 he cried. For 5 straight months. Jayce had colic and I had post-partum depression. Real. Life. Post-Partum Depression. I never knew what it was, or if it was real... IT IS. So every night from 4:00-8:00 I would cry too (and usually WAY more than that). I tried to shield this all from you, but after weeks and weeks, it was impossible. You would come in the bedroom while Jayce screamed and tears rolled down my face and put your sweet hand on my leg. I would touch your face and tell you to find a book and tell you that I loved you. You never threw a tantrum or wanted attention. You would just kiss Jayce's face and leave.

Will I ever forgive myself for that?

I will spare you the details of the rest of that because I hope that you will never remember all that occurred in our home those first few months because I'm trying to forgive myself, but it was bad. It was hard. It was like I was walking around with my eyes closed, just trying to keep going. I did this for YOU and for you alone. You were the glue that kept me together. You were the reason I fought for each day. I would not let YOU down.

The months went by... Colic became a horrible word of the past and the depression, well, it became something that I owned and managed and controlled. And you helped me!

Your brother got older and stronger and more determined. You and he formed a bond almost instantly that became the inspiration for me to get it together. You loved him from day one. You never saw a disability or a problem. You never feared the unknown or the inevitable. You loved him and he annoyed you and he made you proud and he got you mad from time to time. You encouraged me to live.

With everything that our family went through during Jayce's beginning, you were here and I have to remember that. I didn't see any regression in the beginning, but I'm afraid I'm seeing it now. This may be typical too. After all, you didn't have any time to regress back then. Did you know I wouldn't be able to live through it? Possibly.

So, when things are rough between the two of us, I try to remind myself all that you've been through. I try to recognize that maybe now is your time. To feel frustrated. To feel overwhelmed. To feel sad. To feel like you don't have the words to express how you're feeling. To get mad when everyone comes over to play with Jayce and not you (a therapist is really just a super fun grown-up to you).

So... I'm working on it. I'm trying to be patient and understanding (not easy). I'm trying to give you clear boundaries and expectations. I'm trying to let the little things slide... I'm trying to let the potty-training-techniques that I research into the wee hours of the morning go. You don't have control over much right now, but I promise you, I will not tell you when and where you can poop. I will let you have the power over that. Go on with your bad self, kid. Own it! If I tell you to go on the potty, you can tell me to stick it. (I'm just really hoping that this method may work on you, like perhaps you'll be inspired to do it on your own, like sometime soon. Soon? Please.)
I guess this letter was an apology. A confession. To let you know that I haven't forgotten you. That you are still my everything and to remind you that I'm still scared that I'm doing everything that I possibly could, wrong. Being a Mommy is tough, but I will keep working on it!


Well, I feel like I should've written about your third birthday, but your birthday was a bit different this year (again, I feel horrible about this).

We planned your birthday party for Saturday, March 23. We were all set ~ it would be Monster Truck themed, of course. We had our Monster Truck cupcake tier, napkins and plates, streamers & balloon color schemes picked out and cupcake sprinkles bought (you couldn't choose a favorite, so we decided to buy EVERY colored sprinkle that was ever made!). The invites were sent...

However, your party was cancelled when we heard that your Big Bumpa (Great Grandpa Fontana ~ your namesake) had passed away...

I felt terrible that the day after your birthday was spent at a funeral, but you were a champ and didn't seem to realize what your were missing. You DID have an entire birthday WEEK of fun prior to his passing, so I don't think you really missed out on much in the long run. Your Birthday Week began at school! It was your "All About Me!" week. We brought in a huge poster all about you, cupcakes to share with your friends, and I even got to read two books to your class!

You loved having me come for a visit and we read your favorite book, Down by the Station. You were also given a birthday crown, which you wore for two days straight and your friends sang Happy Birthday to you, which made you feel like the coolest kid in town! We also met some of your neighbor friends at Bouncy Town on your actual birthday to celebrate! You loved spending time with Levi, Clara, Bryn, Hunter, Beckett and your little brother.

Because your party was cancelled, it felt like your birthday lasted forever because your family kept bringing you presents as we saw them all in the following weeks. You are one spoiled and lucky little man!

I love you to the moon and back Wilbur Anthony Geurts. More than you will ever know. And I will always, Always ALWAYS be your Mommy (so remember that when you tell me you will never, Never, NEVER be my kid again!:)