Glo's wish
Mouseketeer
- Joined
- Aug 25, 2010
- Messages
- 173


Let me start my introducing everyone.

Let me give you a little background on Glo. She was born full term with VACTERL Association. This is an acronym for an association (hence the name) of multiple birth deffects that can be seen together. Often kids will only have 2-3 of the birth deffects, but Glo has all 7. V= vertebrae Glo is missing the lower part of her spine, has had a tethered spinal cord, and has a cyst in her spinal column. A= she had an imperferated anus which has resulted in more bowel surgeries and toileting issues than I care to count. C= Cardiac. Glo had open heart surgery just before turning 1, and will have another in a few years. TE= Tracheal/Esophogeal fistula. Glo's trachea and esophogus were connected at birth so anything we would have tried feeding her would have gone directly to her lungs. Nothing was hooked up to her stomach. R=renal. Glo has one functioning kidney and one that is non-functioning. She has very frequent kidney infections. L=limb differences. Glo has had several hip surgeries for hip dysplasia, and surgery on both hands. Gloria also has very severe asthma.
Sorry to be writing a novel here, but I have a lot of questions about meds, feeding equipment, wheelchairs, ect.. I have not traveled much with Gloria in the past 4 yrs since her care has been more involved. I have no idea what to expect!


Oh, by the way Glo's wish was to go to WDW!


Well I better wake Glo up and get to work!!! I look forward to any advice you can send my way!!!!!