We went to see Bailynn’s pediatrician today. They had ran the blood level tests on the wrong drug, but thank goodness had enough left to redo them correctly without sticking her again. Her liver and kidney functions appear to be “normal” for her and her overall blood counts are good. I was able to get a tiny urine sample to take to the lab today and we should have some results by tomorrow. I got to talk to Bailynn’s pediatrician about all of our current concerns, one still being weight. Bailynn has gained no weight. She has lost none either, but I am feeding her tons of calories per day with little results. I feel defeated. We then discussed Bailynn’s rods and she took a picture of them to send to the orthopedic surgeon. Bailynn is just so skinny. She just is. Now we wait to see what he thinks about the pictures. Her orthopedic surgeon wasn’t in today, so tomorrow (again) we should know something.
Then, I learned something new. Saturday our MagicBands for our upcoming disney world visit arrived. The girls were ecstatic to get them and decorate them with some decals I had bought off of Fantasy Bands website. They are really cute. As we got done decorating them I pulled out the paper work inside the box. The front half was nothing I hadn’t already read. I am incredibly impressed by Disney’s attempt to truly streamline your experience with these bands. I am looking forward to using them. Then, I flipped the paper. Oh my……medical device interference. Are you kidding me!!!?!?!?!?! No lie, these silly things work on a Radio Frequency, just like most all medical devices. It give a disclaimer to not get them within so many inches of your Pacemaker, ICDs, Insulin pump, Neurostimulator, hearing aid and more. So, I spent some time on the phone with Cyberonics (the manufacturers of the VNS implanted in Bailynn) and was advised to keep it away from it. The phone technician was helpful and honest. There is little data on the interference. They don’t know what will/can happen. I was so taken with this that I was motivated for the first time in a long time to hit my parenting column on Examiner and write and article about it. How many other families does this effect? The main point the technician made to me is that they need data. They need families to report interference and concerns for them to have some kind of reference for others. We will have to have a diagnostic ran on Bailynn’s VNS after we return to retrieve the data. This will be helpful to cyberonics, Disney, and peace of mind for us to make sure it is still functioning properly. Who knew! Something that was going to make Disney a little easier, just became very complicated for us. Here is a link to my article Disney MagicBands medical equipment interference. Nothing is simple. Nothing is easy. Bailynn wins again. I’ll update with the reports on all the tests in the next few day. For Her. Bobbi