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, August 24, 2009
Update (Spinal Muscular Atrophy)
Pics above are Reed Michael and a picture his Mom Dana(My oldest daughter)
Few things to update about. Reed's birthday party was last night. Sad, he loses his license for 4 months as of today!!!!!! He forgot his court date and they revoked his license. Happy Birthday Reed Michael from the Sec of State of IL.
My son in law( Reed's Step-father) seemed to be very distant towards me at the party. Not sure what is going on there. My daughter Dana seems to be doing well these days and much more happier which is a great thing.
Now the kicker.... we will not be going to the MDA Telethon in Peoria this year. First, time in three years. After figuring bills and looking at what is due we just do not have the money for two motels rooms at this time. Its sad... Lizzy is let down but we are facing bad times right now and we just can not do it. we were gone a lot this summer also. Lizzy said she will miss the WMBD guys like Bob and Chuck. I will not miss doing the live interview though( I get all shaky doing that) I will miss all the WMBD guys though as Lizzy. They are so great to her. So, Lizzy is going get to see the Thresherman's reunion parade here on Sunday for the first time in three years and possibly be in it. We are usually getting ready and driving to Peoria to the Paradice Motel for the telethon when the parade is going on. She was asked recently to ride in it.
I have been very emotional lately according to my family. Not knowing what is going on with me but these crazy allergies and not been able to hear in my left ear for three weeks now. I have had sinus crude since we went to CA. Its been a month ago you would think I would get this over with!! Then all the craziness of coming home uppacking, then packing again, not sleeping, everyone leaving me and Lizzy home alone or no way to leave. The fall in CA didnt help over Lizzy's power chair because I went through a lot of pain over that. Then, the fact my oldest grand-son is 18 and now a man.... well that is enough to make any woman emotional. Then, Paul with no job and we have no insurance hmmmm maybe just a lot going on wouldn't you think? I believe the change went on a few years back. My hot flashes are gone so.... so much for blaming the change of life people!!
The good thing is Lizzy is doing great!!
Prayers to all that need them.
"We believe in miracles because we live with one!!!"
www.our-sma-angels.com/elizabeth
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