Monday, July 27, 2009

These days...

These days we are spending our time waiting and playing. Waiting for doctor appointments, evaluation appointments, and any number of appointments. We are playing alot and enjoying every minute of it. Hannah is quite the entertainer. She wakes up in the morning talking with Koolio. We get dressed and I take her and him out for as long as they can tolerate it. We come in, eat breakfast and play school. She watches videos off and on and immitates the characters. Hannah likes to be held alot. She comes to wherever I'm at and says, "hold you". Translated that is "will you hold me?" I'll sit and bear hug her for a few minutes and we do that all through the day. She has decided my dishes in the sink need bubble baths. Water is splashed from can to can't but she's having so much fun it's hard for me to stop her. Yeah, my boys give me the same look you are probably giving as you read that. LOL! My shoes are always disappearing. Hannah LOVES shoes. She puts my flipflops on and wears them sideways. It's the cutest thing. She immitates all of us. We have to be so careful what we say or do because she does not forget and she will immitate whatever she sees and hears. Needless to say our days are very full and we are trying to enjoy all the good moments we have in betweeen the bad.

School is right around the corner. I'm exciting for Hannah yet nervous. She will be at the same school she was last year and the administrative staff and teachers there are amazing. They take really good care of Hannah. She will have a new teacher and with budget cuts there will be one less aide but I am confident that the administration will make any changes and additions should they be needed. They are just that great at making things work. I hope to get to meet with the new teacher soon. Hannah's rescue med has changed and she will now have to take one of her meds in the middle of the school day. She is having complex partials that are very unnerving and I just want to educate everyone so they can be prepared for the "worst" should it happen. At any rate Hannah is so ready for school to start back up. She's that much like her momma I guess. The kid LOVES school.

We are no closer really to having any answers about what is going on with Hannah and why she is having such severe seizures. I guess we are a little closer in that we've had genetic tests done and both came back normal so we're pretty sure it's not something genetic. Actually in reality her seizures are likely from her prematurity and all the things they had to use to keep her alive. We're having metabolic testing done on Oct. 1st and see the epileptologist again August 18th. As always I'm praying we do not experience anymore status seizures. I hate to say that I can handle the other seizures because I'd love not to have to handle any, but I can handle seizures, just not status seizures that can ultimately take our girls life.

I recently had Hannah put on the CLASS medicaid waiver list. It is a waiver that helps families like ours. However, that list is 8 to 12 years long. Can you imagine? Hannah could be 20 before she ever got the waiver and for sure 16 at the earliest. David says...."God is able"! I'm so thankful for his unwavering faith. Mine wavers so. Something I'm working on in my time with God. In addition to the medicaid waiver we have an evaluation with MHMR soon. I'm not sure what services they can offer Hannah but was told respite care is one and that I get to hire the respite worker. It'll be interesting to get the details. It's not alot of tiem but anything is better than what we have now. And I do feel bad about thinking about respite care but there are times when I need it severely.

I'll have to close here as I need to take Koolio to the vet. Thanks and please keep praying.

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