Well my son requested that his dad take him to the Pediatric Urologist. Not because he doesn't love me but because we got the bad news together last time and he can never have both of us with him at any doctor's office because it just stresses him out to have both of us asking questions and he would rather just deal with one of us plus the doctor. Evidently, according to what my two guys tell me, sonshine was about to go on the transplant list and begin dialysis. But the new blood test numbers were half of what they were a month ago and the doc was pleased. He wasn't the only one! There are so many things that you could say made an impact. Of course there is the fact that there were many people praying for him. We have seen it make a difference when nothing else could. The fact that he has been catheterizing every 3 hours, (mostly) has made a huge impact. We could tell by the absence of any urine leakage that we were on to something.
At the end of the day, I don't really care what it's attributed to. All I care about is celebrating today and each day that my boy is able to terrorize me with his snarky teenage attitude. I love him and I know that under that crusty little teenaged boy beats a wonderful, loving heart. He loves his dogs and is going to miss his sister terribly now that the time for her to leave for college is here. On this night, while the family is sleeping for the last time all together under the same roof, I am grateful, so incredibly grateful for the days that have been celebrated here together in this house with these children who think they are grown already and my husband whom I love.
Tuesday, August 23, 2011
Monday, July 25, 2011
Today I Need To Know I'm Not Alone
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.
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.
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