Wednesday, May 5, 2010

It Gets Better Right? - Living with Spinal Muscular Atrophy


Its been a crazy last few weeks.  We went to CCK and as usual Lizzy loved it!! We got through the stomach flu . Never had dealt with that before with Lizzy but I got her through it.  Lizzy was denied the new Trilogy bipap/vent from Apria but approved by her insurance. Strange huh? How can you be approved by your insurance to get a vital piece of equipment and then your home care equipment provider deny it. Hmmm... How can that be?

We got back on track with Lizzy. Then, today she threw a plug. I knew something was up all night last night but she kept giving me excuses why she why her o2 was sating lower than normal. Not bad but not her norm. So, I upped her treatments today.  I will be going with my intuition next time, the little stinker.  She is learning to manipulate me I think.... but I think that is changing like NOW.

Saturday, Elizabeth was all excited the carnival was here and she got to go with her Mom and Dad.
Paul had come home from Dawn's house after doing some yard work not feeling well. Christen and I both asked him if he needed something to eat. He said "No, he was sick to his stomach, his fingers were numb and needed to lay down. He said" he feels like he has the flu." Which I thought was strange because the flu had been out of the house after we totally disinfected it and the incubation period is 48 hours.  Well. Christen and I checked on him and fine the first few times. Then, I went in his room checked on him and was non responsive.  I called Christen back home. She ran home. Brandon had Lizzy and then took her next door.  Lizzy saw the ambulance and was  worried . Christen called 911. With out adding all the drama of the day I will add the man was near death or a diabetic coma. His blood sugar was 19 . I had given him sugar on my finger under his tongue before that. I aged about 10 years that night.  He refused to go to the hospital . I will not go into all the details but tonight his sugar went to 39..... I am calling the doctor in the morning and when he gets home from school he will be going to the doctor. If I have to hire some big ol bikers to carry his ass!   Something is just not right. I just woke him up a few minutes ago and made him eat a peanut butter sandwich. This is really scaring me. He is such a stubborn man and he did not have the flu.
I am not up to all this. What is going on and why now? Is it just a adjustment or is it something worse?

Trying to raise funds for Stanford visit in June for the travel. Thought we had something in the works but not sure now.

Hopefully things will resolve soon!!!

Many prayers for Madison, Stella , Drew and all the kids needing extra prayers

Extra Prayers for my Husband Paul and me too.... (so I can stop stressing so much!! )

"We believe in miracles because we live with one"
www.our-sma-angels.com/elizabeth


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