Thursday, April 23, 2009

Kylie, the oldest one.


Kylie is 5 years old (well in a week she will be 5!). She is the brightest, most loving child I have ever met.
Until she was 3 1/2, everything about her was perfect & above average. Then in November of 2007 she was diagnosed with Type 1 diabetes. We were devastated for her, but now we would be thankful if that was the only medical problem she had. In April of 2008, just days before her 4th birthday she had a seizure and was put on Depakote which made her violent. We were told she had a behavioral problem not a medical problem and they took her off her medication. Within a few weeks Kylie developed a facial tick, then a month after her first seizure she had 9 more in a 24 hour period. Nobody seemed to think she had a problem, one doctor told us kids just have seizures.
We took her to an ear-nose-throat doctor who sent us to Stanford, and spent much of June-August going back and forth between home & Stanford. We spent August-October in California at Stanford without returning home. The doctors at Stanford put Kylie on plasmapheresis, steroids & an ivig treatment but instead of making her better she got worse.
They released us earlier than planned and we returned home to be admitted to the local hospital a few weeks later. Kylie had dropped from 33 pounds in June to 25 pounds in October. They installed a feeding tube directly into her stomach. She is about 35 pounds finally, but that is still below average for a 5 year old so the g-tube has to stay in for now.

1 comment:

  1. SHe looks like she had fun at the playground.

    ReplyDelete