|Campbell - my angel.|
Rett Syndrome hasn't taken the joy out of Campbell's life. She's a beautiful 5 year old who can get almost anybody to do what she wants with a smile.
PreschoolI dreaded this day. Her first day of school. I was scared of how the other children would treat her. I was scared of how the teachers would treat her. It's bad enough that a lot of doctors didn't know much, if anything, about Rett Syndrome, and I knew the teachers didn't know what to expect.
|Campbell on her first day of school. She seemed to be telling me she'd be fine.|
She was right. She's got suck a wonderful smile, the other kids would wind up giving her all of the toys there, one at a time, over the day, just to see who got the biggest smile. This continued. Apparently, children have to be taught to treat other kids differently; none of them thought of her as any less than themselves.
For quite a while, I was happy that Campbell didn't show any signs of seizures, which is a huge concert with Rett Syndrome. She started having seizures, though, and seemed to have them in spurts. It's absolutely maddening to have to watch your child go through that.
She's been in the hospital a few times, as they have gotten too frequent on several occasions. She is completely exhausted, and sometimes couldn't rest more than 30 seconds between seizures. They would give her medicine, which was quite sedating(though I couldn't imagine her not needed the rest), and eventually stabilized her.
|One of her hospital visits.|
As of yet, she's still non-ambulatory, but makes strides in therapy. Doctors have said there's no reason for her not to walk eventually, and it's the best for her prognosis, and fending of scoliosis, another common complication with Rett girls.
Medical news is very positive. Despite the relative rarity of Rett, more and more potential treatments are being developed. I can't stress this enough:
Treatment of Rett Syndrome can lead to effective treatment of Epilepsy, Parkinson's, Autism, Alzheimer's and many more. It is considered the "Rosetta Stone of neurological conditions".
For all the fear I've had, and still have, that Rett will keep Campbell from enjoying life, she's amazingly positive. She's still almost always outwardly happy right up until the point she needs something, and needs it quite a bit.
She's also still a fan of daddy making faces, and tickle-time.