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Rachel's story is a bit different from any I had heard so
far.
She was born healthy (or so we thought) at 6 lb. 1 oz and 19 in. long.
When she was 6 days old I went to change her diaper and it was saturated
with blood.
We immediately took her to the local hospital and from there she went to
Riley Children's hospital, still not having any idea of her condition or
the severity of it. After about 6 hours of waiting we were told she had
Malrotation with Volvulus.
In other words her intestine grew the wrong way, had formed a kink and
were twisted and dying.
After surgery she wore a colostomy and was fed by TPN, nothing by mouth.
We were able to do the reconnection 1 month later and she was able to eat
small amounts of Pregestimil. Although the surgeons were excellent, it was
the love of family and the persistence of loved ones that were
instrumental in her healing. Because of our "nagging" and our research
with other parents in the Hospital, our estimated 1 year stay in the
Hospital was cut to 2 months. She was still on TPN through a central line
8 hours a day but no feeding tubes, no bags and we were home! At 2 years
old we got rid of the line and the infections that went with them.
She is now a happy and mostly healthy 10 year old. She still has to take
B12 for the rest of her life, however for those of you that would be
interested, she takes her B12 in a nasal spray....no shots.
A real life saver for the nerves of a child who faces the needle every
month. The product is called Nascobal made by Nasonex. I just want to
thank you for this site and the opportunity to educate others.
Maybe the miracle of science will catch up with the miracle of the spirit
that I see in my daughters' eyes. |

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