Greetings from a wet NC. Warm and nice, but wet.
Sharon did some more travelling with us this past weekend to PA. We visited with Uncle Fred and his family (Fred talked with Sharon about the difficulties of PT and agreed with her that OT is easier to take...) and also went to my ten year college reunion (how has it been that long??).
Yesterday we saw the neurologist at Brenners Childrens Hospital. He is the same one we went to for a second opinion back in March. We have since decided to use him exclusively since the bedside manner of the other neurologist is...lacking, to say the least.
Anyway, he was very pleased with how Sharon is doing. He reviewed the MRI from two weeks ago. There is nothing new (that is good). He said that looking at the MRI, he is actually very impressed with how much Sharon is doing and how well she is interacting. The MRI definitely shows damage (the miracle/dream scenario would have have shown significantly less damage than the first one, since the first MRI had the potential to show a lot of swelling and bleeding that would have looked like brain damage). We asked him if he can guess what results the damage will have on her abilities and of course he can't really answer that. He said that he can definitely read that there is weakness on her right side, and speech/vocabulary may well be another area where she is going to struggle, but we can't be sure.
What he said to us a couple of times is this: SHE is going to be the one to show us what she can do, not an MRI.
We feel like we've closed a chapter on this book of Sharon. No more MRIs, CT scans, etc. In fact, we won't even go back to the neurologist for another year. There are no more answers to be had, just time to watch her grow and develop the way she is going to develop. Actually, we will do one more test on her in the next few months, but that doesn't have to do with her development. We'll be doing an extensive blood test to rule out any kind of blood disorder that could have caused the strokes (we know there isn't one, but it will be good to just rule it out completely and take her out of that "stroke risk" group).
I think the big challenge that awaits us is just the questions of friends and strangers. We are so thankful that to the casual observer Sharon looks typical so that we don't have to hear "what is wrong with her?" (yes, people are that inconsiderate). But, well meaning people are constantly making small talk with "does she sit up? Is she crawling?" etc etc. and i fear that those questions will become more difficult as she gets older and the delays are more apparent. We are just praying for the best ways to deal with these questions becuase we know that our example is where Sharon will learn her own defenses and acceptance of her situation....
Yet again I thank you for continuing to read this blog and support us. It means more than you can know!
love and bless
Jaye, RJ, and Sharon I.
