My son is back from Disneyland where he visited for a few days with his sister, father, and 2 family friends. Every time he comes back from being away for even a day, I'm always struck by how much older he seems to me. While he was gone he managed to take his morning and afternoon medication without me reminding him and to self-catheterize every three hours without his bladder exploding.
Tomorrow we take in the weekly urine sample to be evaluated for infection and the day after that we have the big appointment with the pediatric nephrologist. Last month we were told that his numbers indicating kidney health and renal function, specifically the BUN and Creatinin were much higher than they should be and that they indicated a renal function of about 30%. We have been working so hard to keep him on a three hour cathing schedule hoping that it would take pressure off his kidneys and that the numbers would return to a more normal range. We are also working on taking weight off and hoping that it will relieve some of the load on the kidneys as well. It is always such a struggle for children that are in a wheelchair. Weight is an issue for everyone these days but especially when your physical activity is limited. Now that he is 15, it is not as easy to simply take him to the physical therapist, he has to want to go or he just simply refuses to participate once he is there. Working out at the gym is something that he enjoys doing with his dad. Hopefully, we can get him on the bus for doing a little more of that.
I'm starting this blog because I would like to know that there are other moms of spina bifida teens out there going through some of the same challenges that I am. Ideally, it would be great to be a support group of sorts to one another. I guess today I just need to know that I'm not alone.
