Today was hard!
By Quetta
@Quetta (13)
United States
July 2, 2009 11:38am CST
I have a 4 year old with Monosomy 21. This has just been a hard day. I went in to check on her this morning and found that over night her escema had flared up. She was in pain. I bathed her and oiled her and gave her pain meds. She is back to sleep. I just feel so bad for her. She can't talk or walk so she can't explain what hurts. I just don't know what to do anymore. I need support if you know anyone with this type of issue please help!
1 response
@Quetta (13)
• United States
7 Jul 09
Because my daughters' condition is so rare the doctors are unsure in what to do. She has a PCP, 3 specialists, and a genealogist. She is on and off of oral steroids. Also oral steroids cause diabetes and we are trying to avoid any medical conditions we can prevent. That is why I am hoping to find a person with this condition or a parent of someone with this condition. Trust that I do consult her doctors with any concerns that I have. I'm just looking for someone who knows what I'm going thru.
