Appointments

Maggie had several appointments this week. Each appointment went pretty well. On Tuesday, she saw her GI doctor, Dr. Mezoff. Her weight, according to that scale, was 12.9 kg (roughly 28.4 lbs.). Though her weight was a little down, he was very happy with how she looked. He thought that while Maggie was on her NG tube feeds, they were beefing her up more than what her body really needed. Now he thinks her body is settling into her actual weight, between 28-29 lbs. According to her weight vs. height, she is in the 50th percentile. The plan from GI's standpoint is to do another upper GI when Maggie's ready to get her port removed. They want to only put her through one anesthesia by doing all of procedures at once (included in this is also a CT scan of her lungs). This will take place when Maggie's immune system is back to normal. That will be our last visit with GI as Dr. Mezoff thinks that Maggie is good enough to be on her own now. We are happy to be able to take one specialist off our list.

Maggie also had her physical therapy yesterday with Nancy at our house. Since our vacation to the beach, Maggie walks around the house all the time. Rarely do we see her crawling anymore, which is so wonderful! She is able to stand up without pulling herself up with another object, which was one of our goals. Another goal was for her to be able to stand for a given amount of time and take 20 steps consistently, both which were achieved. We are getting close to being done with physical therapy because much of what needs to be done now is strength building. One thing we are going to do is get Maggie some inserts for her feet, as her ankles/legs turn in. It will give her heels some support to help the rest of her legs.

Finally, though we are off the medicine that caused highly sensitive skin, Maggie still continues to have some rashing. She also was bit by a mosquito on her hand and had the same response as her previous bite, a blister. We wonder if she is allergic to mosquitoes, her immune system is causing crazy side effects, or her anti-fungal medicine is causing similar responses.

Maggie also has been losing hair for about a week now. I was very nervous and upset about this because with any new change, I ultimately think the "R" word. After some research from Andy and then getting confirmation from Dr. Mezoff, we believe Maggie is losing her hair due to her traumatic illness 6 months ago. The literature says that she won't lose it all, but after going through chemotherapy, I worry that she will end up bald again. Though it is superficial, I just don't want her to lose her pretty auburn hair again.

We have our monthly clinic appointment on Monday. Of course, with this comes a bucket of nerves again. We don't expect to see bad counts, but in the back of our head, we can't help but worry just a little bit. Please pray with us that Maggie continues to show that she is healed.