June 13, 2008: We are experiencing delays
Perhaps just coincidence, but the exact moment Haley was supposed to get prepped for her colonoscpy/endoscopy, she suddenly developed a one-time fever. Her rescheduled procedure is sadly on her birthday (june 26th), but if it’s going to help explain why she still isn’t eating much, then it will be a happy day.
To prep Haley for this procedure, which includes a biopsy, she had to fast since midenight the night before. And for a kid who barely eats, that’s an eternity. So no fun for her, even before they do anything invasive.
We’ll of course keep you all posted.
She’s as happy and wonderful as can be, and aside from the walking and eating, is developing quite quickly. She’s very knowledgeable about her shapes, especially heart balloons, which are her mother’s specialty. Like most younger siblings, she has taken up some of Anna’s likes, such as Barbies (good lord). And because she has advanced fine motor skills, loves to draw (and I don’t have to worry about her eating the crayons, since she still won’t put anything in her mouth), and loves anything with buttons. She’s oh so much more than these things, and it’s hard to describe her bubbly personality without experiencing it first hand. But the worry was always cognitive or social issues, and perhaps they will manifest later in life, but so far there is nothing we see as cognitively delayed in anyway. Quite the opposite, in fact. It’s not every almost two-year old that knows how to access my cellphone messages.
A quick shout out to Dave who left the hospital and doing wonderfully. We’re all still thinking of you. And to Josh in NZ– keep up the great work!
































I found your website while searching CAMT on Google. I was amazed to find another little girl who had this disease since it is so rare. My daughter also had CAMT. She will be 3 years post-transplant in September 2008. It’s so hard to believe it’s been that long. I would love to compare stories sometime. Our website is http://www.caringbridge.com/visit/erinbowers.
Glad your daughter is doing so good.
June 24th, 2008 | #