Weight...and waiting

Well, we don't really have an animal scale, but I liked how this one looked. Gwenn has moved, in animal terms, from mouse to moose. Well, maybe not a moose yet - more like a mid-sized dog. Definately not a pig, but doing better. Gwenn now weighs 58 pounds! Since the hospital 2 months ago she has gained 14 pounds, and gone from the 1st percentile to the 24th percentile in weight for her height/age.

So the waiting game starts. We'll keep the ng-tube since she still doesn't eat enough orally to maintain or gain weight. The Periactin is helping - I think that is what has made the difference. Two weeks ago she was at 52 pounds - and the last 6 pounds were in the past 2 weeks since starting the Periactin. It's also helping give healthier skin, but no relief to the itching.

The doctor is open to some of the other areas to investigate - we are waiting for a GI consult at Children's, will follow up again on her EEG/VEEG to ensure that there are not "silent" seizures that are occuring, and they are willing to consider researching mito. Now, the chances are low, but since a good friends daughter has been diagnosed, it is worthwhile to consider since Gwenn does fit in the high level definition for mito.

So, we are setting out for vacation - not only from work, but from therapies and doctor appointments. The craziness will start again when we return, but I will enjoy it while we are gone!