So, Eve has had a couple more Dr. appointments. Two weeks ago, we went back to the pediatric surgeon to followup on the VCUG. Unfortunately, she totally got sick in the car. It was a mess. We thought it might have been car sickness, but I think it was a stomach bug. Which I have to say is a relief. I was not looking forward to another issue that we had to deal with. Especially since 90% of her dr. appts are at least 1.5 hours away. Anyhow, the pediatric surgeon said she does NOT have kidney reflux. He did say that if she gets another UTI and they determine it is caused by e.coli, there is a blood test he wants her to have. Something about some people having a predisposition for UTI's caused by e.coli. It would require a prophylactic dose of antibiotics. So, that's good. We don't need to follow up with him.
Then on this past Thursday, we drove back out to Springfield to go to the Shriner's Hospital for Children for an orthopedic evaluation. Her pediatrician referred us after we saw her about Eve's legs cramping up. What a nice hospital. Very chill. It was amazing to see all the other children in wheelchairs. Eve fit right in for once. It made me a little misty. Anyhow, they talked to us and moved her legs around. They also took xrays of her pelvis. I forget the terminology, but her hips are partially out of their sockets. They said they don't think her muscle cramps are related to the hips, and that this is to be expected of a child who is in a wheelchair and doesn't stand, etc. They said it may also be why she isn't tolerating her stander. She doesn't really seem to be in pain because of her hips otherwise (e.g., diaper changes don't seem to cause discomfort). One option would be to fix it with surgery, but there is no guarantee they wouldn't pop out again. We discussed our philosophy that Eve's happiness is most important. We are not interested in forcing a kid to have surgery if there is no hope she will ever walk or move independently. The doctor agreed and said we should just monitor it for now. We don't need to follow up with them (yay!) unless there is a problem. And if it turns out that she is in pain from her hips we can always manage it with medication.
Speaking of medication, about a week ago, Eve started waking up again in the middle of the night. I called the neurologist on Thursday and he increased her dosage of the Baclofen. Eve woke up just once that night, but about 6 times last night. It's very hard to be patient in the middle of the night when you need to get out of bed so many times. She is clearly uncomfortable, and her legs are almost locked, making it too hard for her to shift position. I don't know what to do. I guess we see how it goes for another week and then call the neuro back. We do have an appointment with a physiatrist in Boston in June.
All else is well. I'm feeling great and the baby is kicking up a storm. Jim is doing well and Josie is, well, Josie. A lovable pain in the butt.
