Gesina is coming to the end of her first "year" in school. It was really a half year but close enough. She has done really well! She handles the sounds and chaos of kids at school and daycare like a champ. She doesn't really startle as much as she used to and she smiles at the kids voices. I think she likes school. Right now, the other kids seem to love her and some even take the role of helper or even friend. As you may expect with 3 year olds, her best friends rotate in and out every few weeks but absolutely no one has been negative towards her. I love that! I wish they would stay that way forever.
We are weaning Gesina off of her last seizure medication, zonisamide. It is going to take 3 months because I want to take it slow but so far, she's been very sleepy, a little grouchy, and nauseated. She's not eating as much and vomits a little. She seems to be getting better after the first few weeks of the weaning process but it could be a long 3 months if this continues. Much like me and my mom, Gesina seems to be "receptive" to medication. It doesn't take much to have a reaction but every time we wean her of a drug, she has withdrawal symptoms. I'm nervous, but hopeful. I don't want to dream of how nice it would be to not have to wake her for her life saving meds every day and night at 9 o'clock since she was born.
Gesina is also getting a new bed. I am having someone make her one because I don't want to spend a few thousand dollars on an ugly metal, medical bed. They look horrible (imagine a jail cell) and she is a kid and should have a good kids bed! The first design would have cost $3900 just for the bed... the second design is under a $1000. I'll post pics when its done :-) I think I'm pretty cool because it's going to have shiplap on it... like I'm Joanna from Fixer Upper!
Team Gesina may grow by 1 as I meet with a functional neurologist next week. He does more chiropractic, out of the box therapy. I got the recommendation from a CP moms group on Facebook. I'm cautiously optimistic because this will cost money BUT I have to try. If it doesn't help her in any noticeable way, we can discontinue and say we tried. If it helps, then yay! In the meantime, I'm going to schedule her next stem cell treatment for August. I will probably have to do some fundraising on that again :-( I hate fundraising. I waited to have a child when I was financially stable. The theory was no matter what, I would be able to support my baby. But I didn't count on Gesina. I need to find a way to make more money to support my "Team Gesina" habit :-p until then, I'm glad I have my village to support us. A big THANK YOU to everyone who supported us last year!
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