Through the first 4 weeks of the year Jameson has seen nephrology, endocrinology, neurology and neurosurgery. He will be seeing orthopedics and ENT in a couple weeks! It sure is busy but we're so used to it by now that we wouldn't know any different. :-) Little man had a bunch of lab work done to check his kidney function and hormones. His kidney levels came back slightly elevated from a few months ago, but his nephrologist was still very happy with his progress and overall health. His kidney disease will always be there but its something we can always work on managing. It is by no means a reason to be depressed or down, its only another example of how incredibly resilient he is.
Along with the kidney levels, we also found that Jameson has an underactive thyroid that we are now treating with medicine. Since we started this new thyroid medicine, his sleep has gotten much better than it was a couple months ago. It must be his body telling us he's happy about the new treatments!
Last but not least, we had quite a roller coaster of a trip to Minnesota last week. We were able to check many things off of little man's bucket list; riding a carousel, petting a stingray and visiting an aquarium! We also got news from his neurosurgeon that he thinks Jameson needs to have surgery on his spine this year. At first I was really taken aback. I wasn't prepared to hear that and I didn't know how to feel about it. But after taking a few days to let it settle in and talking to his doctors, it became apparent that surgery was the right thing to do.
The surgery they want to do is called a tethered spinal cord release. They believe that part of Jameson's spinal cord is attached to tissue at the bottom on the canal and therefore being pulled tight and causing nerve damage. Typically, an MRI will show this and that's how they diagnose the problem and decide on surgery. But in Jameson's case, his MRI doesn't show a tethered spinal cord. Instead he has all the classic symptoms, like weakness in his legs, issues with his bladder, constipation and scoliosis. The doctor wants to do the surgery to prevent any future damage that could happen and possibly cause chronic back and leg pain. If given the choice between a surgery and hospital stay versus irreversible damage that causes chronic pain, I don't think you have any other decision. When it comes to your child you will do everything you can to make them comfortable and give them the best quality of life possible.
So as always, we have a busy few months ahead of us! Jameson has been doing so well the last 6 months, its pretty amazing to see him learning new things every day. If I can be thankful to God for one thing above all, its for giving little man his sense of comfort in almost everything. He is pleased every single day with just being around his family and playing with his toys. It makes everything worth it when you see happiness in his eyes because he knows how loved he is. :-)
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