Thursday, July 11, 2013

Patience is a virtue...

and not my strongest virtue, I might admit. Give me a classroom full of 6 year olds and I'm golden. Totally under control. No worries. However, give me a sixteen month old who's yet to walk and I'm a wreck!
You're nervous in this picture. You don't know how to make it go.
It's that time again, Mr. Jayce. Time for another letter and update. Per usual I had to go back to read where we left off and per usual we've been busy! Golly gee that was a looooong post back in late April, I'll TRY not to get too long-winded this time (Bahahaha!:).

As I've already mentioned, I've got "walking" on my mind, so let's just cut to the chase. You do NOT have walking on your mind, which is why you are not... walking, that is. So, case closed. The story is over. Yeah, well not exactly. You've got me for a mother!

Let us back up a bit. We visited the Waisman Center for a "follow-up" appointment back in April. I didn't speak much about this in my last letter because I really just needed some time to process all of it.  So, I did. I talked about it. I worried about it. I felt sorry about it for you (and possibly a little bit more for myself). And then, when I was done with all of that, I remembered what I always tell myself when we have a poopy appointment: you are still you. You are happy & healthy, friendly, determined, and so smart! And besides (and this is THE MOST IMPORTANT PART for me to remember) I will never walk out of an appointment, ever, and have you magically cured. It just won't happen, as much as I will it to! There is no medicine or treatment options. There is only time and therapy, and I suppose we have plenty of both.
Here's what we learned about you during the appointment:
(1) You have an AMAZING personality (duh)! Everyone spoke about how engaging you are and how down right splendid you are to interact with.

(2) You tested "normal" cognitively. This is good because their was always a huge risk for cognitive delay or even mental retardation due to your congenital CMV diagnosis. I felt confident while the psychologist was doing the "testing", but there's always that "WHAT IF" looming in the back of my mind. The psychologist also stated that she doesn't anticipate any cognitive delay for the future. Sure, you may have trouble with reading or math, but you are not at any higher risk for these issues compared to other kids your age (we think-ish, but there is no crystal ball, so we've been told).

(3) You met with the Nutritionist because you were so small at birth. You're just fine. On that good ol' Growth Chart, after all. In the 30th percentile to be exact! PS ~ You didn't even make the chart until your 6 month birthday. Apparently you've been making up for lost time.

(4) You have some increased muscle tone in your thumbs, which forces you to hold your thumbs in. This is not interfering with your daily activities, but it is something we should "work on". So the Occupational Therapist thought it would be good for you to wear these:
Splints. For your thumbs. (Daddy thinks it's ridiculous).
We wear them, when we remember, which isn't very much. Is it helping? Not really. Do we care? Not really. The OT told us that you shouldn't have any issues with your hands as you grow. You may just have really bad handwriting. Like we give a s*#t about that! Moving on...

(5) Your "hearing age" is that of about a 2-4 month old. So, you've got some work to do, BUT we just had speech therapy today and you're beginning to say a few words! WORDS I SAY!!! Not, just sounds (which you do ALL THE TIME) but words ~ "Bubba" for brother, "Bu" for ball, "Hi", "Bye" and an occasional Mamama and Dadada! It's been tricky for me to say that you actually have words because I just can't believe it! You don't say them much and NEVER on command, but you say them. The other day you were looking for your brother who was up in his room. You crawled up the stairs and said, "Bubba, Bubba" the entire way. When you found him, you pointed to him, and squealed, "Bubba!" and then you stopped! Keep up the good work, little man! We're continuing to work on vowel sounds (eee and ooo are hard for you) and patterns of speech. We've also been working on distinguishing between 2 and 3 syllable words. I swear you'll be a better listener and talker than all of us one day.
You and your favorite person (most of the time). Wait, who are we kidding?

Here you are wearing your Cochlear Implant processor in the car. You have never wore it before because (a) you hate it and throw it when you get frustrated, which makes me nervous and (b) every time you turned your head, you'd knock the magnet off of your head, which resulted in reason (a) quite regularly. So, I bought you this neck thingy to provide you with some space between your head and your car seat. It works, but it's mighty uncomfortable. On this day, I watched you listen to music in the car for the first time. You looked all around for a bit, trying to figure out where the sound was coming from. Then you gave up and looked out the window.
And then you really gave up.
See. Not very comfortable. Sorry, buddy. But your 'ear' is still on!

And the (6th) and final thing we learned at the Waisman Center is that you "clearly display characteristics of Cerebral Palsy because of hyper tone in the lower extremities that hinder overall movement". So, you have Cerebral Palsy, but not technically. You see, it wasn't actually written down. Like, in your FILE. You know, like officially. And here is why: If you have a diagnosis of CP, our insurance company will DROP all therapy coverage for you. CP is forever and they don't want to pay 'forever'. You will not receive any physical therapy, or occupational therapy (if you need it in the future for those darn thumbs), or speech therapy un-related to verbal communication, such as feeding issues or sensory issues or oral motor issues that result from CP, which can be fairly common. So, your doctor decided to not give you an official CP diagnosis at this time. Instead, your diagnosis is "hypertonic, spastic muscles, treatable by Botox".

Oh dear, Botox. You've had it twice. The first time, back in March, wasn't too bad. Three pokes in one muscle on each leg. This time was awful. Like, so bad that I NEVER want to put you through it again... so please, please walk soon. It was even worse than watching them place multiple IVs in your skull during your NICU stay. Last week, you endured 16 injections. Eight shots in three different muscles in each leg. You cried and clung to me and shook your head "no!" the entire 5-10 minutes it took. Awful. That's all I can say about that. *Tears*

So, we're going to see how far you can get by October, which is your next scheduled Waisman appointment. I hope, hope, hope you'll be walking by then because maybe that'll mean no more Botox. Also, if you are walking I'll feel more confident in our Physical Therapy being dropped when your CP diagnosis is given. Obviously, we would appeal if insurance denied coverage, but that could take weeks if not months and right now I don't want you missing out on that special time with Jim (your PT).

Speaking of Jim and your Physical Therapy... you've been busy and you don't necessarily enjoy yourself while you're there. That Jim, he sure makes you work!

Here's a perfect example of one of Jim's brilliant ideas that you are totally not diggin'. He's trying to encourage you to balance and STAND on your own without holding onto anything. You refused. Completely.

However, Jim has introduced you to something you're quite fond of...

A big boy walker!
Notice what you're wearing in this picture...
A Cochlear Implant.
Thumb splints.
Braces on your feet.
Poor boy.
You're borrowing this sassy, gold number for the rest of the summer, or until you no longer need it, which could come sooner rather than later. Now, a year ago this picture would've terrified me. I didn't want this for you, ever. I wanted you to be able to walk like a regular, ol' kid. But, I found myself begging Jim to let us bring it home a few weeks back. You see, Jim really doesn't think you need it. He knows you will walk someday and this walker is really not going to be the deciding factor on 'when'. You've got the physical strength and overall movement necessary to walk, you just don't have the confidence yet. You're very, very uncoordinated as well. Like, really. You cannot balance to save your life and you will not even stand independently, let alone walk. However, you can walk anywhere as long as you have a finger to hold onto or something in front of or behind you. One day at a time, my friend. I will keep reminding myself of how far you've come rather than how much more work you have to do. I will. I will. I will. It's hard for me.
It's hard to watch other kids your age (and let's face it, kids that are months younger than you) do things that you can't. You still feel like a baby to me, which really isn't too bad because you're probably my last one. And a 16 month old who can't walk or talk, but sleeps through the night and takes only one 3 hour nap a day and loves to be going and doing is MUCH better than a baby-baby, ya know. You will get there. I know you will get there. I just have to be patient!
Other than ALL of that (oh, and a brief month or so of obsessively worrying about seizures because you are at a high risk for seizure activity and your speech therapist saw you roll your eyes twice) things have been good. We just keep moving, as your brother would say. That's all we can do. You do it well, you really do.
In fun news! Here you are with your brother. He loves giving you rides in his buggy and his monster truck. I love the wave at the end!

Until next time, little boy!



  1. Thanks so much for sharing....I think about you all the time...always in y thoughts and prayers...what a amazing little man and mother you are...keep your chin up

  2. He is an awesome little boy!! Thanks for the update. -:)

  3. Your boys are so blessed. With you both fighting for them they both will excel. So I have to say the neck pillow, g grandpa fontana would be jealous yours is so cool and the walker lets just say G Grandpa Fontana just smaller.... Keep on trucking!!!!
    Love Auntie Donna and Uncle Timmy