Journal Entry for March 14, 2008
March 14, 2008 3:20pm
WELL THE DOCOTRS JUST FOUND OUT WHICH DISAESE MY DAUGHTER HAS. THEY WASN'T SURE FOR AWHILE. CHEYENNE HAS {- …
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cindyhat’s Profile
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About Me
i'm 22 years old. i have a daugther she is a year old today.i'm a stay at home mom. my daugther has has health issues. she has a carnitine deficiecny,muscle disases, and also had surgery for her refulx, she also has a mic-button tube in her stomach. my daugther is only 15 lbs. but the tube will help until she is able to eat by mouth again, when she is able to pick up her weight. we have alot of appointment at Morgantown for her. we are having a party this weekend for her.
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Journal
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Journal Entry for January 9, 2008
January 9, 2008 8:51pm
we are going to be sent home is weekend thank god!! cheyenne, and i have been in morgantown hospital since christmas eve. im …
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Journal Entry for December 14, 2007
December 14, 2007 2:38pm
we are down here in morgantown again , been here almost a week now don't know when we are geting out yet. i'll let everyone know …
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Journal Entry for November 25, 2007
November 25, 2007 12:08am
been bussy lately, haven't been able to stop by here to check everything out. im still going crazy about everything …
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Journal Entry for October 6, 2007
October 6, 2007 12:07am
we got cheyenne muscle biopsy back and the news is not good at all. i can't tell you at this time what it is im sorry, but im to …
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Support Groups
Close Muscular Dystrophies
my daugther was born on sept.6 2006.she was ok until she turn 4 months old. then everything started to go down hill from there. all at once she stop gaining weight, and we didn't know why.so we went to the doctors in Morgantown and they did test on her. my and my daugther stayed in the hospital for 29 day until they found out what was going on.she has a carnitine deficiecny,rare muscle dieases, milk allergies,had surgery for refulx, mic-button in her stomach.we are going to Morgantown again.
Close Lupus
hi i would like to join this because my aunt dee dee has lupus,and she has asked me if maybe i could find out what all happens when someone has lupus.im upset because i know this is a ever bad thing to have.the doctors say that she will only get worse.i hope i can find some answers at this site. cynthia
Open Financial Challenges
it had been hard on us because my daughter been in and out of the hospital because of her health issues. we have been back and forth to Morgantown and the moeny is geting very hard to come up with all that we need sometimes.we have been trying our best to only ues what we need and nothing else. cynthia
Open Primary Carnitine Deficiency
my daughter has carnitine deficiency and she takes meds for it. we didn't find out she had it until she was 7 months old. but she stoped gaining weight around 4 months old. the doctors didn't find out until later because they would only tell us that everything is ok and some kids does that from time to time. so we though everything was ok until we went to Morgantown and then they told us about what they found.
Treatments
- Carnitine Somewhat Helpful
- it has been crazy
Open Food Allergies
Type of allergy: Other Foodsmy daughter has milk allergies. she was born with it.
Open Premature Birth
the reason my daughter was premature was because i had preeclampsia and risk was to high for me to go the whole term. they said that i could have died and my baby too. i was lucky that i was going for a checking the same time they find that. but my gaughter has health issuse and i don't know if that was the reason why? cynthia
Open Mitochondrial Diseases
we just found out that my daughter has this diseases.we didn't know she was born with it until they done a muscle biopsy. they are still trying to find out what kind of muscle diseases she has, they said it is very rare. cynthia
Open Lipid storage disorders
we just found out our daughter has this after her muscle biopsy.
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