Monday, Jan. 14, 2008

Another day at clinic today, a little good and a little bad news. Hannah's counts have finally begun to raise, thank goodness!! They are still not within normal ranges, but at least they are now moving in the right direction.

This was also the first week in a month that Hannah has not lost weight. Her weight was exactly the same as last week, at 20.8. This week we have begun to see moments of break through in eating, times when she would actually eat one whole piece of pizza or french fries. But those were often followed by setbacks of no eating or one of two bites of something. The new medicine seems to be working better for her, although she still does have daily stomach pain and nausea.

One of her levels, Albumin, which measures nutrition came back very low from her complete blood work up last week. She is undernourished, especially not getting enough protein in her diet. The doctors seem worried about her now in terms of her general health status. They told her again today that if she doesn't start eating more, and better, that they will have to use the nose tube to feed her. She went through one whole year of surgery and radiation and chemotherapy and avoided the feeding tube that most medullo kids get, and to have to use it now would be devastating. None of us want that, especially not Hannah so she really has to try hard to eat, and eat good food. Up until now, the doctors have been pushing for her to eat whatever, as long as it provided her with calories. Now the focus has switched a bit to get more protein and good food into her body. Tonight for dinner she had chicken, wild rice with butter and edamame. All good food, and she did a great job at eating nearly everything. It took over 2 hours, and we heated up her food about 5 times, but she kept at it, and made it through. In the past she would have just completely refused and I would have accepted that. Things are changing. It's still so much of a struggle each and every day, many times a day with food! We'll just keep working on it. No wonder she is so tired.

Today was not a great day, she woke up feeling badly, asking for her medicine. By early afternoon she needed more medicine, which knocked her out for 3 hours. She was still complaining that her stomach hurt when she woke up, but rallied enough to eat. I know she is being motivated by the threat of the NG tube.

Tomorrow we're meeting with yet another doctor. I'm taking her to a naturopathic doctor to see what their analysis is, and what we can do to help her. Our friend Alec's mom recently met with this doctor and was very impressed with how well her son has done with the supplements they recommended. I'm hoping they can provide us with some nutritional assistance to get Hannah where she needs to be.


Here are a couple pictures of Hannah working out at home on her trampoline and big ball. She tires quickly, but we're working daily, when we're home to get her going. xoxo Kim