All about Lizzy's life and my life as Lizzy's caregiver. Lizzy has Spinal Muscular Atrophy Type 1 and is a miracle! She has NEVER been able to stand, walk or sit(with out assistance). She is such an amazing child with the determination to over come many of her battles with this terrible disease. She is a happy child and is always smiling.
Monday, January 12, 2009
Bizzard coming our way (Spinal Muscular Atrophy)
The weather man says we have a blizzard coming our way. Elizabeth was excited to hear that one. She said " I can go outside in my sled and go sledding in lots of snow" The precious mind if a 5 year old. I would love to think like that. I get a bit of anxiety worrying about if the power will go out etc.
We got our appointment for March for our trip to see DR. Wang. Do not know if we will get help through Mercy Medical airlift or not. They told us last year they would help us with flights in March. I have a message into them so I hope we hear soon. DR.Wang is working on his article and his findings so I hope he finally will reveal how the heating procedure is done on the trial med Lizzy is on.
Lizzy is good these days. She is very opinionated and her vocabulary is amazing. She says "Actually.... all the time or "Heeeeeello" if she wants something. She tells on Christen for everything .
She loves HGTV "House Hunters" and "sell that house" Two of her favorite show she says besides Sid the Science kid . She says she loves watching what house people will buy and how they fix houses. I try to keep her busy and not watching TV. At night I have them on before she goes to bed so I guess that is how she learned to like them.
Today she was doing her computer with only the easy cat mouse and no other switch. She is so smart to have figured that out. She did numbers, and colors learning programs on the computer today alone. I mean she does stuff ALONE but I did not have to help her at all!!
Sophia Doeebert is very sick right now. She is Lizzy friend She had a negative culture for RSV but her symptoms sound like she has it. So many sick kids right now. Many Prayers for them.
Well, so far Papa is still working. He went back to work last Monday. They do not know what is going on. The workers are so much living in fear. At anytime they could come in and shut the doors, rehire the next day and cut wages significantly, cut the insurance etc . and the future is UNKNOWN. We know that the current company filed Bankruptcy last Monday and motions were granted last Wed.
No one has mentioned the proposals tne union denied. The mayor is all happy saying they are not closing and have been bought and the workers will not lose their jobs. Well they will be bought at auction and that has not happened yet.
So, please keep your prayers with us. We so need them right now.
www.our-sma-angels.com/elizabeth
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