As many people know, my dd was diagnosed three years ago with MD (muscular dystrophy). Ever since then it has been an out set of dr. after dr. never ending. Recently her neurologist requested a visit to a pulmonologist... makes since seeing as that her lungs are a muscle! She has had weak muscles for what seems like ever and her lungs have been bad for long time... she has had pneumonia 12 times in her 5 years here.
The pulmonologist said there is a decrease in her strength even after the medication. So they are sending her in to do a sleep study and a pft. Seems normal enough, asthma people do it all the time...
What the difference is, oh man its so scary... they want the sleep study because they are worried that with her weakening lungs, that as her body and muscles slow at night as every-one's do, hers may stop all together. I never thought of that I guess. The reality of a dr. saying that to you is sickening. To know that the possibility of that is realistic.... ohhhhh my heart sinks. The fear sets in.
They also want her to do a PFT because they know that she does not suffer from obstruction rather restrictive problems... my fear is growing every call I get from a doctor now... I didn't think I would get here this fast. I thought Cai had many many years because her form wasn't that bad... how did we get here? I am devastated with the news of the need for these procedures and the purpose... oh Dear Lord please give us the strength to get through this. We have 4 of these scheduled right up to Xmas.... Im crushed...
Cai has her own website with information about her condition, I update it regularly! Thanks for listening and please say a prayer for my sweet baby... She doesn't deserve this. If you have any words of advice please share them with me... I am slowly losing my mind with this disease
My daughter has limb girdle muscular dystrophy. She may waddle, she may fall, but she is not ignorant. She sees you stare. She hears you snicker. Her heart aches like mine and yours when people laugh at her. Be polite and ask about her condition rather than be rude and make fun of her. Please educate yourself, as I can only educate her so much about ignorance and stupidity. I can only tell her so much about just how cruel the world can be.
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young mom with 1 yo son
- Shauna71904
on Nov. 18, 2009 at 11:44 AM