A week ago, Brandt got a bad stomach virus. I took him to the pediatrician, and they put him on the BRATS diet to help bind him up. Unfortunately, he had nonstop diarrhea, sometimes as much as six episodes an hour. By Sunday evening I took him to the ER for dehydration. In the past week, I have probably changed around 200 diapers. And, of course, that means one heck of a diaper rash. We tried 3 types of cremes before the doctor finally gave him a prescription for an infection. And, along with that, we are giving him a sitz bath three times a day and giving him time to go around diaperless to let his little boodie air out. But, it has just been miserable for him.
But, just life goes on and our busy schedule does not leave room for down time. Brandt's life doesn't stop for a little belly bug.
Tuesday he had therapy. He did a little knee crawling and walking with a push toy. He worked on getting up from and sitting down in a chair--which was not the most successful thing.
When Brandt started receiving services 5 months ago, the goal was for him to be walking by 15 months. Two months into it, Brandt got transferred from working with an Infant and Toddler Developmental Specialist to working with a physical therapist. The physical therapist set the goal for walking at 17 months. He is 14 months now and we are at the halfway point for the goal, so I asked the PT if she thought we were on track for that goal. Her answer was this apprehensive dance around the question. She went on to explain that the longterm goal was not so important, that completing a goal was not as important as showing a concrete mastery of the lesser goals that will get him there, that she'd rather see him crawl with agility, strength and coordination... She could've just said a simple "no" and been done with it. This lady is so used to working with special-needs children that I think there is a bit of personal disconnect for her with the feelings, emotions, and hopes involved in goals.
But, that was only the beginning of the week. Wednesday meant a follow-up with the geneticist. Previously, we had some labs done that showed Brandt had Isovaleric Acidemia, a genetic condition where the body can not break down proteins into the amino acids needed for muscle development. Because it was not found on his newborn screening, a second test was ran. Thankfully, the second test was normal. But, that meant back to the drawing board. The geneticist ordered more bloodwork, this time testing for Pradar-Willi Syndrome and a Mitochondrial Disorder. She is also ordering an ultrasound of the stomach with special attention to the liver, but she was speaking so fast, I am not sure where she was going with that. But, she gave me the paperwork to see if St. Marys can do the blood draw and imaging next week when he has his MRIs, so hopefully they can save him that agony.
Today, I took Brandt to the pediatrician again for his belly bug. Because his tummy troubles are showing no signs of letting up, they sent off a stool sample to be tested. Hopefully his belly will clear on it's own in the next day or two, but at least they will know how to treat it next week if it doesn't clear up.
And, so life goes on. Tomorrow we are heading back down to Miami Children's Hospital. This will be the first time we have attempted to see two doctors in one day, so it should be extremely long and miserable. The follow-up with the ENT should be fast, but the EKG and consult with the cardiologist will be the part where I will be ready to throw in the towel.
But, life doesn't stop for Brandt...
Sent from my BlackBerry® by Boost Mobile
No comments:
Post a Comment