Merry Christmas! Happy Hanukkah and Happy Holidays! Today the family is out for about an hour and I wanted to update the blog. My New Year's Resolution is to find time in the days and weeks to come to more frequently update this blog. I want to be a way for other moms to reach out and I want to welcome those relationships into my life.
Sonshine and his sister are both home together while high school and college are both on break. It is music to my ears to hear them laughing and even to hear them arguing. At least the house feels alive. When they all start to leave the nest no one tells you that it is the noise that you miss the most.
Sonshine visited the urologist and was told that right now he is holding his own. The numbers from the blood work are still not "normal" but that might be too much to ask for these days. He is catheterizing every three hours during the night (because I set my alarm and wake him up) but during the days my concern is that he is distracted and that too much time is passing in between catheterizations. Unfortunately, at 16 he has to be an active part of the process when it comes to keeping his body healthy. Sometimes I do think that he gets discouraged and wonders what the point is. I hope that is not the case. The big news is that sonshine has a girlfriend and he likes her very much. Getting to know her and trust their relationship is a big step for me as mom. As long as he is happy and she treats him well, I will do my best to include her in the things that we do as a family. The trouble right now seems to be finding a balance between respecting their need to spend as much time together as possible and our family needing to carve out time to come together as family during the times that my daughter is home from college. If anyone has a playbook for that please let me know.
For now it is one day at a time. Anyone who tries to plan further ahead than that has a better grasp on life than I do. Update on the girlfriend: She has definitely grown on all of us and they have been dating for almost a year. I am thankful that they both have each other and that she is such a sweet, loving, girl.
Sunday, December 25, 2011
Tuesday, August 23, 2011
Celebrate Each Day!
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.
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.
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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