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.
Saturday, January 24, 2009
Life goes on as usual (Spinal Muscular Atrophy )
Lizzy saw DR. Hough yesterday and no sinus infection, No Psuedomonas , no nothing she is fine. The problem was the new nasal prongs Lizzy has been using. I had quit using the nasal prongs two days prior to her appointment and no blood at all yesterday. The nasal prongs were causing her too much pressure and that is what all that was about last week. I thought maybe but not sure. She can probably wear them while she is sick during the day (which might be great since she refuses to wear a bipap when she is sick during the day) but hopefully she does not get sick for a long while. She loves the nasal prongs though so that is a good thing. It upsetting she can not wear them all the time. Maybe we will try them a bit at a time.
She has gained over 2 pounds since September. I am shocked. I knew she gained though but not that much. She has gained so much muscle mass in the last few months and has grown like crazy.
We have been babysitting for my great niece. Its been kind of neat having a baby around plus the fact she can go home too. Lizzy says she is babysitting. She watches careful eye over her and asks all kinds of questions.
Interlake goes for auction in March now. So, we have a bit more time I hope. Not sure of the out come. It really sucks not knowing what the future will bring. We still need prayers.
Our DME forgot to order Lizzy's supplies this month. Grrrr so we will be VERY late getting them. I have some tubing and water traps coming from some great friends to help out. I hate this!!! Its crazy.
Lizzy, Christen and I made home made valentines this week also. Christen made most of them. Its more expensive making them than buying them!! They are cute though.
We are trying to stay Positive and hoping 2009 is good year for us.
Now we have to make sure we have a way to Stanford in March its getting close. I wish spring would get here fast
Sophia Doebbert went home today from the hospital. Many prayers for them and all the sick kids.
We believe in Miracles!!!
www.our-sma-angels.com/elizabeth
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