So where to begin? I would say there were three major issues we hoped to get some answers to during our trip to the University of Iowa. All of those concerns were addressed and we're working on finding solutions or at least some forms of treatment. The easiest one to explain first is that little man's light sensitivity issues were discussed with Opthamology and we're moving forward with specialized glasses that will help block out certain UVA/UVB rays and hopefully get us closer to be able to take him out into the natural light. Since he lacks complete head control, we'll be putting him in glasses that look sort of like swimmer goggles. Might be funny to look at but to be able to take him outside and just hang out in the sunshine would be something he's never experienced before. Can you imagine your whole life being stuck inside four walls...and then all of a sudden the world opens up? I'm beyond excited to see if this can work for him and what new things he can discover.
Our next major issue that we're working on is with Neurology. Jameson will be going back to U of I at the end of October for an EEG. This test measures electrical activity in the brain and tests for seizures. We've noticed for quite a long time that little man has occasional twitching episodes. Sometimes they happen in clusters and sometimes they're only very brief eye twitches. So subtle that most people don't even notice he's doing it. Since his MRI this summer showed some issues with his brain, we're now more aware that these problems could be causing the twitches. The way our neurologist explained it is that the brain likes to be very uniform and perfect. When there is any sort of problem in its development, it likes to do things like cause problems with how your body moves and works. It also makes it so that you have problems with controlling the way your body moves (seizures or movement disorders) and how it rests. (sleep problems ) As we continue to learn more about this and work with our neuro team, we'll get more and more answers that can hopefully help little man.
The last major thing we discussed with our doctors was Jameson's bladder and kidney issues. We had an ultrasound done that showed grade 2 hydronephrosis and inflammation of the kidneys. What our Urologist believes is that Jameson has something called a neurogenic bladder. I'm sure WebMD can give much better information than me, but the basics of it are that the bladder is controlled by many nerves and muscles that are in turn controlled by the brain. When the brain is somehow damaged or not working correctly, it causes the bladder to not understand when it needs to empty based on how full it is. So when the bladder gets very full but the brain doesnt know that it should be emptying it, that causes excess pressure to back up into the kidneys and cause them to become inflamed and possibly damaged if that continues for a long period of time. As of now, Jameson is swelling only mildly into his kidneys but without treatment it will get worse. Our doctors still need to run more tests to determine the exact causes but it is something we're actively working on trying to help him with. Whether that means more surgery....or whether he needs to be catheterized....or whether he can simply go on daily antibiotics, we don't have the answer to that yet. But his doctors are amazing and always trying to give him the best of what's out there for treatments.
I know this was just a ton of information, but I'm happy to keep everyone updated on how awesome our little man is. He continues to amaze doctors and researchers with how much strength he possesses. If anyone ever has questions, thoughts, prayers...feel free to pass them on to us as we continue to love all the support and share Jameson's journey!
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