How We're Doing Now

Hanging in there. That's how we're doing. Seven is not quite the little boy he used to be. When I lay him down in bed at night, or on the floor to change his diaper, he arches and flexes his whole body. He gets all tight and turns his little hands into fists. Not only does it make changing him very difficult, its upsetting to see because it doesn't seem natural.

We've had several follow up doctor appointments and have several more planned in the next few weeks. There is a urological rearrangement surgery we have been planning for a year or more. We were waiting for the right time, and as he keeps having so many bladder infections, it seems now is the time. In September we are going to take care of that, get another MRI, and get a CT scan of his kidney. We had an ultrasound a few days ago and it appears his left kidney is collecting stones like they are discontinued beanie babies. A CT scan will give us a better idea of what they are made of. If its calcium, then we might be able to shock them to break them up. We have no idea why his kidney is acting up. It has no good reason to. We're trying to find a kidney interpreter but to no avail.

In feeding therapy, Jenn noticed Seven isn't swallowing anymore. This is most likely because of the brain injury Seven sustained. One thing we learned while in the hospital is that Seven has a new diagnosis of Central Pontine Myelinolysis because of the hypernatremia. Since leaving the hospital I've learned that there isn't a lot of information on this disease. It occurs most often in alcoholics. It is almost never seen in someone as young as Seven, and therefore, I will likely not find any literature on a case like his. A rapid sodium shift in the brain is another way one would acquire this diagnosis, as the case is with Seven. When researching this diagnosis I've found swallowing problems often occur. Other things presented are confusion and delirium, double vision, muscle spasms, speech difficulties, and weakness. There is a high mortality rate with CPM. We are trying to stay positive but there is a lot we don't know. A lot of problems might crop up over time because of Seven's latest incident.

We started growth hormone. We had planned on doing this for a long time now. Results really wouldn't be shown for another 3 months at the earliest. I am glad we are on the path, though. At our last office visit we found Seven is 74cm now. That's two more cm than the last time we were there. Maybe his body has decided to grow a little on his own. That, or the nurse didn't do an accurate measurement. Both possible. Seven tends to do what he wants, when he wants. Funny... Ocean and Jarrad are like that, too.

Thanks again to all of the emotional support we have received over this difficult time. We really appreciate it.