Lizzy has for her first Spinraza injection on Tuesday. We are excited, we are worried, and we are in new a new phase in Lizzy's life. Anticipation, is the worst. for all of us!
Lizzy is a great kid and knows so much about life it scares me. We let her make her own decisions and basically she has since she had her spinal-fusion when she was 9 years old.
We have a terrible ride with the school system here. She can NOT attend with out a nurse ( I am her caregiver) . No one in this area has ever dealt with SMA Type 1 like Lizzy has. The past few years w the school years here have been full of illnesses. Not just one season anymore. We have has three great teachers but, they are limited on the time they can spend with Lizzy. Not even 2 hours a day. Sad, but Thank God Lizzy has picked up things easy from her last few teachers. No Skype, NO robot allowed here. Privacy issues. Really?
Its been pretty low key around here. We do not go many places anymore. Its hard because, Lizzy's brother has visitation 3 days a week and his dad does not like to compromise unless its him that is asking. Lizzy's brother is going to the Madison with us for the injections and to stay at The Ronald McDonald house. They both love staying there. This is the first time we are going since the reconstruction is done.
Wish us luck and send us prayers on our new journey for Lizzy. Any procedure is scary for Lizzy.
Lizzy is a great kid and knows so much about life it scares me. We let her make her own decisions and basically she has since she had her spinal-fusion when she was 9 years old.
We have a terrible ride with the school system here. She can NOT attend with out a nurse ( I am her caregiver) . No one in this area has ever dealt with SMA Type 1 like Lizzy has. The past few years w the school years here have been full of illnesses. Not just one season anymore. We have has three great teachers but, they are limited on the time they can spend with Lizzy. Not even 2 hours a day. Sad, but Thank God Lizzy has picked up things easy from her last few teachers. No Skype, NO robot allowed here. Privacy issues. Really?
Its been pretty low key around here. We do not go many places anymore. Its hard because, Lizzy's brother has visitation 3 days a week and his dad does not like to compromise unless its him that is asking. Lizzy's brother is going to the Madison with us for the injections and to stay at The Ronald McDonald house. They both love staying there. This is the first time we are going since the reconstruction is done.
Wish us luck and send us prayers on our new journey for Lizzy. Any procedure is scary for Lizzy.
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