The whole family went to Children's today for a multitude of appointments.
The first item on the agenda was for Xander to get a bone density test to make sure he is growing at the required rate, for his age. It started by cramming the two staff, Xander & Mom into a small room. Dad & his brother had to go to the waiting room and watch cartoons. The procedure was very interesting. They laid Xander out on a table and then ran a moveable scanner arm down his left side, up the middle and then down his right to get a whole skeletal scan. They then measured the bone densities in different areas and determined his current rate of growth. A boy of Xander's age should be between an index of 20-24 and Xander measured in at 22, right in the middle. So we know for a fact he his growing normally and should have no endocrine problems.
Next was another awake M.R.I., which was a little challenging since you have to keep absolutely still for 20 minutes. It takes a little longer since they needed to put in an I.V. line, which did not go over very well and they need to retrace any areas where they saw movement. But in the end Xander made it though another awake M.R.I. We had asked him before if he wanted to go through the M.R.I. awake, or asleep and he chose awake and followed through.
We then headed off to get a quick breakfast (if you can call doughnuts breakfast), and then headed up to Oncology with a bunch of items Mom prepared for the kids who are going through cancer treatment. Every year she makes nice colourful pillow covers out of different material: Cartoon characters, cow pattern, psychedelic, etc. , some candy canes decorated as reindeer and some funky hats perfect for a little balding head.
Then off to Neurology to meet with the Neurologist to discuss Xander's medication. We had a few issues. One was a few months ago Xander started clearing his throat for no apparent reason. This presented itself as a precursor to seizure activity again, so we were somewhat alarmed. We stopped his reduction of Trileptol to make sure we were not introducing the symptoms because of the reduction. Then in a few weeks, he had a sore throat, cough, cold, another cold, and so on so we were unable to determine if everything was still alright. He has been stable for the past week and a half so we decided today to go down another notch and see what happens.
The second was the pharmacy only gave us enough Lamictal to last a few days indicating the prescription had run out, which had just been refilled. So, the Neurologist took a look and resubmitted the prescription so that we will be able to get the rest of what Xander needs. We are also trying to work on getting the medication insurance company to cough up the 3 day emergency medication the school district needs to keep without paying for the whole shot.
While we were meeting with neurology, Neurosurgery showed up and it was standing room only. We reviewed Xander's M.R.I., which was stable from the last time, and went over his progress over the last while, neurologically. With that we were able to get out of our appointments early!
All-in-all, everything is great. Xander's M.R.I. was clear, he is growing well and doing well at school. With additional medication reductions we hope he can do even better, but has indciated already he feels a lot less 'fuzzy' than last year.
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