Goodness, I'm just a blogging fool these days! Since Kendall has been feeling better (and now eating better) she has just let her little personality shine. I posted this video because, of course, I love her laugh, and also, I think she is seeing the pin wheel. Kamden worked with her this evening on tracking and I really think she's seeing. What do you think?
I cancelled Kendall's surgery next week and re-scheduled for May 20. Ft. Worth ISD is officially closed until May 11, and MayFest has been cancelled. (bummed about that, since that's something Kamden and I attend every year)all due to the Swine Flu. I dont usually get worked up about these things, but since any type of flu or high fevered illness can cause serious issues in Kendall, I'm a little more worried. Kamden's school hasn't been closed yet, but a lot of districts around us are. I think by the end of the evening they will as well. I just figured sitting in hospitals and waiting rooms next week would probably not be the best idea. I think it is definitely better to be safe than sorry.
Kendall's seizures were tough today. I called the Neuro and we are officially going to start on Vigabatrin as soon as it comes in. Hopefully this will work. It seems like she will be on a lot of medicine, but we have to do it. This is our last option before ACTH...so hopefully it will work.
We are going to move Kendall's crib into our room in hopes of beginning the transition into her own room. This is a big week for me! First weaning, and now moving her from our bed....I'm not holding my breath on this one though. She hasn't been sleeping very well at all lately. She sleeps soundly for about 2 hours and then to the minute is awake again. Wish us luck. We all need better sleep around here.
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4 comments:
I agree!!! She TOTALLY is seeing them! It looks like she looks away and when they start moving, she looks at them again (it looks like she did that when the blocks fell over also??)!! YEAH!! GO KENDALL GO!!!! You guys are def. in our hearts this week.....there is nothing like cuddling up at night. Be strong, Momma!!! Love you guys!!!
I hope the vigabatrine works.
She has more vision than Finnian ever did well done. I love her laugh. Would post some of Finny but havent figured out how yet.
The Cats in the Bronx
2 things ~ Have you thought of Depakote? As strong as Jude's seizures were I am wondering if it will work for Kendall. Also, I really wish you would call Dr Riela 972-769-9000...push push...lol.
I love the pinwheel idea, and she is looking at them!!!!
Hello...I've been reading your blog for some time now. You have a beautiful family and I absolutely love to hear Kendall laugh. Not only am I a mom with a child who has special needs, but I am also a teacher of students with physical and severe health impairments. Your doing a great job. She always looks so happy and that's the part that truly counts. Good luck with the meds change and keep up the great work with a couple of great kids.
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