Monday, August 20, 2007

New Diagnoses

I finally got professional pics taken of the boys in June.
This is the only one that made the cut. LOL


Hello world, yes we still exist and we are doing well. :P It has been some time and we have been staying busy with all of Collin's therapy (Cyrus has some too, but not nearly as much as Collin). There is so much to say and I don't want to bog you all down with stuff (but I will, LOL) so I will start off with the most important news we have received about Collin.

We went to the Neurologist last week and got a number of official diagnoses for Collin. Some were to be expected and one was more preemptive than I had thought. Firstly, Collin has been diagnosed with Ataxic and Spastic Cerebral Palsy (CP). The gist of that means that Collin has low muscle tone and poor coordination, tight muscles resulting in stiff movements that makes both gross and fine motor skills more challenging. We have been waiting to get this diagnosis since I have been fairly sure he had CP for months now. This gives us the benefit of now allowing our insurance to provide ALL the therapy he needs, not just 20 visits a year. This also qualifies him for Medicaid for life. He will be able to walk but he will be slower and more awkward than most and may be in ankle braces for an indeterminate amount of time. He is very close to walking now, regularly taking 4-5 steps at a time. He may not be able to write very well, but that remains to be seen, since Collin is so stubborn, um, I mean determined. He works really hard!!

The next thing he was diagnosed with that we knew was coming was Sensory Integration Disorder (SID). Everyone, including therapists have been working on this for a long time, but apparently you have to be a certain age before you can be officially diagnosed. This essentially means that Collin's brain doesn't properly register input from his senses (touch, taste, smell, etc., pain, as well as balancing the body). This either causes over stimulation (aversion to many unusual textures or tastes) or under stimulation (high pain tolerance, can get antsy if not stimulated enough). So nothing new there.

The new one that surprised me, not because I didn't think it was possible but mostly because he is so young, is Aphasia, specifically Broca's Aphasia. This is considered an Expressive Language Disorder where he has difficulty expressing himself verbally. In Collin's case, his Aphasia is severe enough that they do not believe he will ever be able to communicate verbally. The Neurologist says this is a result, a side effect if you will, of the CP. He has said a few words before like "mama," "more," "up," but they are very hard to understand and you have to really be listening to hear them and speaking only a two or three words in an entire week. Collin mostly communicates by pointing, nodding, and using his favorite sign for "all done" which in Collin's case also means: no, stop, I want down, I don't want to eat that, leave me be, I don't want my diaper changed, and the like.

So what are we going to do about this? Well, first he will start using Picture Exchange Communication System (PECS). This will consist of laminated cards that will be velcroed on a board that he will bring to us in order to get his needs met. Once he has that down we move on to Speech Generating Devices (SGDs), like the MiniMo, that are computers that will actually speak for him. He will push the buttons on the screen that represent what he wants to say and it will say it. For example, if he was hungry, he might push the button with an apple on it, and it would say "I'm hungry." This will be great for Collin but we have to train him how to use the symbols to communicate using the PECS before we qualify to get the SGD. Whew! What a mouthful, eh?

Ok, so what else? Well, our nutritionist has proclaimed the boys to be at healthy weights and heights so we have weaned them off of the Benecalorie food supplement, and are slowly decreasing their Pediasure. My hope is that this will encourage them to eat more solid food. Cyrus' favorite solid is bacon, saying "Bacons Please!!!" Collin loves eggs, and of course everyone loves french fries and tater tots. But we are still having to puree most of their food, and still feed them baby food and things like yogurt, and yes, we still have to feed them. Its getting better but it is hard to get them to feed themselves anything that isn't dry, like crackers or cereal (or bacon, hehe).

With the rest of our time (when we aren't doing medical stuff) we go swimming in Nana & Grandpa's pool. Cyrus LOVES to swim and will leap into the water, not caring that he risks his life by doing so. LOL He likes to get dunked under water and be tossed into the air. He asks me all the time, "Mommy, swim! Swim Shorts on, mommy. Please! Swim, swim!!" Collin is much more reserved and prefers to be held and just lounge around in the water. They love to color (and eat the crayons!!) and enjoy going for walks in the wagon, when its not too muggy outside. Oh and they LOVE to play in the bean bin. We got this Rubbermaid bin and filled it with beans to help with Collin's SID, and it has been great! Cyrus gets so excited and tosses beans up in the air, screaming "Its raining beans!" Yeah, there are beans all over the house. They play with each other a lot more now, really rough housing and wrestling while they laugh. It worries me how rough they are, and how other kids wont find that sort of play fun when they start school. Well let us hope that they learn before then, I swear I am working on it! :P

So that is what has been going on here. Oh and Collin's eye surgery has been postponed until October. Grrr, so its back to fighting him with the eye patch again. We are hanging in there and doing the best with what we have been given. Its easy to feel appreciative instead of resentful that Collin has all these issues, Cyrus with his shunt problems, when you think about how lucky they are to be alive in the first place!! It's hard to have hoped for better, since it could have been so much worse.

More great pics to come!

5 comments:

Kelli in the Mirror said...

Wow, it sounds like never a dull moment with you!

Are they starting school any time soon? Or are you just thinking ahead?

Come by and play with us sometime! :)

Billie said...

Wow, that sounds like a lot to digest... I'm wondering exactly how they diagnosed the aphasia??? It seems really early to me. Does it have to do with the MRI and the area of the brain that is affected? Or is it based solely on the quality of his current speech?

I think your plan of action sounds great. I took a class in PECS and it seems really fun and a great way to facilitate language development as well as helping to reduce frustration when language development is slow. I'm really interested to follow along and see how it goes for Collin.

Come join our CP moms yahoo group if you are interested. I'd love to have you.

And by the way, that picture is cracking me up! It is SO hard to get good pictures of my girls together now:) They are as adorable as ever, of course.

Beanie said...

Hello, my name is Beanie and I’m 21 year old with the same CP diagnoses as your son. I found your blog today. I just wanted to let you know that things are really good for me. Some things were of course hard for me but its not bad and many people doctors included seem to think.

http://beanieatcollege.blogspot.com/

Jennifer said...

Hello, I am new to the blooging thing and a mom of a 25 weeker. I saw your link on Lincoln's blog. You'll find ours there too under "Gavin". I had to write you a little note to say that it was so nice to hear someone speak a familiar language. My son also has SID and a severe speech impairment. He has no words and almost no consonants and he's 3. We were told that it is from his brain bleed (IVH) and his brain being underdeveloped at birth. This all came from Tennessee School for the Blind, as Gavin is totally blind in both eyes from R.O.P. We have him in a Special Ed. Preschool class and they cannot use PECS because he can't see the pictures, so we use small objects instead. So far this has proved to be difficult because the objects still don't have meaning to him, but we are trying to be optimistic. Your boys are so amazing and incredibly cute. Let me know if you's mind me adding your blog to my list. God bless.

Anonymous said...

You mention that you knew the CP diagnosis was coming. May I ask what your first signs were and when you first noticed them? (at one post-term age?)