As many people know, my dear daughter 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 a long time... she has had pneumonia 12 times in her 5 years here. God Bless her.
The pulmonologist said there is a decrease in her strength even after the medications that were meant to help. So they are sending her in to do a sleep study and a pft. Seems normal enough, asthma people do it all the time...However I need to remember that my sweet thing is never normal and nothing surrounding her is.
The difference is, oh man its so scary to me to state this... they want the sleep study done 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... I am hoping we can reschedlue some to give her a break to enjoy the holidays.
Cai's Website
hello my name is Mikhal Banas and I am 14 and have DMD I was diagnosed at the age of 4. at the age of 7 I was unable to walk to school then at the age of 9 I was only able to walk in my house then at the age of 12 I was in my w/c (wheelchair) full time except I was still able to transfur. A few months be for my 13th birthday I was in my wheelchair fulltime and unable to lift up my arms or get in to bed and now I am 14 turning 15 in June now I am unable to turn my self in bed my lungs are still very strong and so is my heart. I have never had pneumonia once in my life. and I think you have bin very blessed to have a daughter like this it will only make you stronger. the best advice is to for get about the really stupid diseas and have fun and live you life to the fullest. because getting all up set at it is only going to make your life harder. god bless you and your family.
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