Merry Christmas and Happy New Year!!!

Merry Christmas and Happy Holidays to you all!

We hope you enjoyed (and are still enjoying) this season! We sure are. Sharon is still too young to care about Christmas (which is nice!) but we are just enjoying having a vacation and having RJ around :) Grandma Baer came from Florida to visit and my family was in town so the weekend was nice. We Christmas caroled last week and have just been enjoying the season with parties and lots of food.

I wanted to give a brief overview of where we are with Sharon... a lot of people ask "how is Sharon" and i never know how to answer that...she's fantastic! she's a riot! But, i also have people who have asked specifics about her development, etc. so i thought i would give a re-cap and update on how she is doing in that area.

Sharon has cerebral palsy, specifically right hemiplegia/hemiparesis. She suffered strokes and subsequent brain injury at birth and the cerebral palsy is a result of that. The most obvious affect is that her right side is weakened. Her right arm is the most affected, with very "high tone" which means that the muscles are very tight, making it very difficult for her to move her right arm or hand. Her right hip and leg are also affected and will affect the way she walks. The right side of her face has nerve damage, which at this point is manifesting itself by a rash and redness that occurs on her ride cheek when it is hot or cold. We'll know more as she gets older. Her speech is delayed probably because of the nerve damage in her face and also because the area of brain injury definitely hit the speech part of her brain.

So, those are the "medical" pieces of the summary. On a daily basis, Sharon is doing great, just not as quickly as children her age. She seems to be on target cognitively and understands everything going on and everything that is said (sometimes eerily so...because she isn't speaking, we tend to forget that she is totally understanding everything!). People have seen her in recent months and say "oh, she's doing great because she is walking". Well, yes, she is able to walk with someone holding her hand (which is a wonderful feat in itself!), but that doesn't mean that she is walking. Sharon's biggest delays have been because she is unable to transition. She was able to sit up for a year before she was able to actually get into the sitting position. The same is going to be true of her walking/standing. It is going to take a very long time for her to be able to get into and out of the standing position on her own. She has also never learned to crawl so is not able to move more than a couple of feet while sitting. All of this means that she is still totally dependent on us for mobility.

Now, with all of that said, hopefully a lot of questions are answered...but i also have to say that she is really doing well. Many many children with her diagnosis are never able to walk independently or talk. Sharon will do both and is well on her way. We are so grateful for all that she can do and for the very positive prognosis that she has. We think that this year of "the terrible 2's" is going to be especially difficult because of the added frustration she has of not being able to communicate or move to get what she wants. So, we'll continue to work to give her the tools she needs so that we all make it through the next couple of years without losing our hair :)

Thank you for continuing to check on our girl. She is the light of our lives. She has a fantastic sense of humor already and her strength and determination are inspiring!!! When we might thing we're having a hard day, it just takes looking at her to put that in perspective since she has to work at least doubly hard to accomplish things that we take for granted every minute of the day...

God bless you and Happy New year!

Love

Jaye, RJ, and Sharon I.

Hello!
I know we missed a week in there, but this time of year does tend to get even busier than usual...
Sharon is doing well and enjoying the season. We took her to a Christmas party over the weekend for children with special needs and that was a very nice event. She really enjoyed herself (but didn't really enjoy Santa...but why should she? I've never quite understood why kids are supposed to autmotically be willing to sit on some brightly colored, hairy guy's lap...)
Last night Aunt Jax babysat and RJ and I went to a grown-up party...a rare treat! It was very nice! And today we were able to rock climb again so that's been very nice (we went last weekend as well!).
Sharon has been gradually moving more...it's nothing drastic, just that she is able to get farther than she has before. We're not even always sure how she does it since she does her best "work" when she is not being watched...The words are still scarce, but i know that part of that is because she knows we want it. And we know that some of it is deliberate since the person she absolutely won't make a sound for is the speech therapist!!!
THanks for checking in!