Where has the past year gone? It has been almost a year since our last post. Many of you follow us on Face Book, so you may already feel caught up. But just in case, here goes a quick account of last 11 months.
After another illness in April 2010, Neavey bounced back as usual but concerns about her weight became an issue in May during a Neurological check up. After scrutinizing her calorie intake, her dad, Keith and I went on a calorie push for a few months. In late May 2010 she weighed 49 lbs. As of last week, (January 2011) she is up to 60 lbs. Most of that weight gain occurred before November.
Seizures on the rise.
By mid July Neavey had gained 5 lbs during the big calorie push. Yay! BUT, with that came a jump in seizures that caused her doctor to increase her Keppra. And as luck would have it, she couldn't tolerate the increase. WIthin 3 days she was screaming uncontrollably from the "anxiety" side effect caused by overly high levels of Keppra. We decreased the dose and waited a few says for her to normal out again. As any one with a screaming baby knows, this can drive a sane person over the edge. By early August my nerves were shot.
Back at School
By late August Neavey's seizure activity was on the decline and school started. Luckily Neavey was granted an extra year at Memorial Elementary where the teacher and aides have perfected their "Neavey care" skills. Things were going great until the second week of school when she came home with an ear infection. She missed a couple of days of school and then was right back home again with a throat infection in September. Seizure spikes in October kept her home for a day or two. By November she had yet another ear infection. Then a really bad cold got the best of her in December, this one she shared with me.
The New Year - 2011
Concerns over blood chemistry had us a little concerned in January, but luckily her weight gain has caused her Zonegran levels to fall enough so that we are not as worried about her Bicarbonate level. We are in the middle of figuring out how and where she will transition into a middle school setting next fall. These kinds of things must be dealt with now and in the early spring.
On the horizon
Next up, more dentist visits. Oops forgot to mention the visits to the dentist to extract "shell" teeth. Neavey doesn't like to give up her baby teeth easily. Thy have to be extracted, which she is not usually too happy about. Luckily she has the best dentist EVER (Dr. Bruce Friedman)! She only cries for a few seconds. He and his staff are top notch!
A check-up with the bone doc is due as well. We're a little afraid of how all this growth will have affected her hip dysplacia and scoliosis. And it is time for new wrist orthotics. The cool pink Beniks must be replaced. I think we'll stick pink!