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kaitly...
kaitly...

Waiting for something and not sure what it is.

So Christopher saw a new neurologist that we haven't seen before and she was impressive. She was very nice, helpful and reassuring. I really liked her. I was thinking about having Kaitlyn see her but I am worried that she might not be qualified to care for Kaitlyn and Epilepsy. We are onto our 4th medicine in 4 months. A friend of mine said that once they have been on 3 medicines it's time to see an E Specialist and to cut out the regular neurologist. I am starting to think that's the case with Kaitlyn. I finally got the book that I had been recommending to other parents and it really helped me to understand everything. I feel like I am waiting for something to happen and I don't know what. I just feel like something is going to happen, I don't know. Kaitlyn isn't on any medicine right now since the neurologist still hasn't gotten back to me, she's been in an OK mood but I think she isn't sleeping well due to the night time seizures. She is sort of grouchy and edgy lately. I worry about her. We still haven't found out Christopher's EEG results, the new neurologist was going to track them down for me. Not sure if it worked or not. Christopher gets a MRI on the 17th, his head is so much larger than it should be. It doesn't look large to me, but it's kind of weird because Kaitlyn's is so much smaller than normal since she was born without a soft spot. Not sure what we are going to find on the MRI. I really want all of our tests to come back normal or negative but at the same time we need answers on both of the kids.

Christopher had to go under general anaesthia on Friday and get a colonoscopy and endoscopy. He did better than I thought he would, it was just hard to see him all doped up before they took him away. They did a bunch of bioposies so we should find out the results of that. He was diagnosed as failure to thrive. He doesn't look like it but I knew it would come to that since he doesn't eat. The school district is sending in some different people to evaluate him to see if he does indeed have Autism. He has some tyical signs of it and then some not so typical behaviors. I think what people read about Autism or know about it, makes it harder to get a diagnosis because some people are certain that children with Autism can't have any social skills when in reality it can vary so much from child to child whose to say that one can't have some social skills. My mother and father are so against even the idea that they are certain that he doesn't have it because they are comparing him to other people they have seen with it, not realizing that it's not that easy. We have had 3 doctors say Autism to us and wanting us to have him looked at... 3 doctors...

I am sitting here watching Kaitlyn and Christopher. I try to remember everyday that we are blessed. We have two beautiful children who our world revolves around. We are lucky. We are just have to get used to everything that we are being dealt and figure out how to make sure that they live a normal life without restrictions (other than those that are normal for children). I don't want to be overly protective and make it that they don't get to live a normal life. We will just be more cautious while letting them explore the world around them.

By kaitly... at Mon, 09/10/2007 - 7:51am | 157 views | 1 comments
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emily, i dont think his head looks big for his body in the picture you have here. they both look heathly and happy though i know looks can be diseving. i pray for your family daily, your adoradorable children regardless what medical problems they are going thru are being watched over by God's Angels.

sylvia

banffgirl