Botox – What does THAT mean? Well, some new issues regarding the bladder have come up recently for Ren. A couple of weeks ago, she had a urodynamics study, which is a test that measures the amount of pressure in her bladder. It is usually done once a year and has always been at a decent level, but not this time. This time it showed she is leaning on having too much pressure in there. Too much pressure can eventually lead to urine going up into the kidneys, which is not good. To help remedy this pressure problem, we are doing two new things:
1) We have started to have to leave a catheter in her overnight. After a few nights of trial and error, we are doing it the simple way by putting a catheter in with a bag attached and then tape the tube to her belly. It seems to be working ok so far. A new inconvenience, but an inconvenience is better than a new big health problem, and it too will become just another routine.
2) The urologist wants her to have Botox injected into her bladder. Yes, Botox. It relaxes the bladder, allowing it to hold more urine safely. She had been on medicine to alleviate this problem in the past, but it appears it is no longer enough. She is scheduled to go in for this on Monday. She will be put under general anesthesia, but it will be an inpatient procedure with no incisions. It sounds like it works very well for many adults with this issue, and recently has been used on children with mixed results: either it works wonderfully, or does not work. However, it does not sound like there are any adverse effects from it; it just does or does not work. If it does work, she would just need to have the procedure done every 6-8 months. If it does not work, then she would need to have surgery – a bladder augmentation, which is NOT a simple surgery by any means. Here’s to hoping it works for Ren!
Therapy – The topic of Therapy involves our decision to have Ren take part in a 2-week inpatient therapy program to help her bounce back from her leg surgery faster. She will be staying overnight in the hospital for about 12 days. Each day she will get 3 hours of therapy, including physical therapy and occupational therapy, and possibly some speech therapy as well. They will provide a school tutor to work on academics while there. The staff compares it to camp, as the kids are kept busy all day long, with therapy, school, socializing, and playing. One of us will try to go there each evening to spend time with her and stay over too if possible, though I will most likely only be able to do that on the weekend. Grandma will be staying with her a few nights as well (thanks, Grandma!). Though a little nervous about the length of the stay, we think it will be a very good thing for her. This will occur in a couple of weeks.
All of this was discussed at her appointment with physical medicine yesterday. Afterwards, we went to the orthotist, whom molded her for a new AFO for her right foot. They are going to attempt having her just wear AFOs (shorter braces) on both legs, now that her right leg is straightened out. The hope with therapy is that it will strengthen her leg up enough to make it possible to for her to be able to need just this AFO on her right leg. It has always been quite a bit weaker than her left leg, but wearing an AFO is much lighter, and our greatest hope is for her to be able to walk with arm crutches some day, and all of these things are steps in that direction. If it seems that her left leg just isn’t going to be able to gain enough strength for just the AFO, then they will just have her go back to the KAFO (longer brace) to provide the support she needs. I don’t think this takes away the possibility to walk with crutches.
Seizure Free – Here is the most awesome news of all. Ren has been off of her seizure medications for about a month now….with NO seizures. I sometimes take it for granted how wonderful this reality is, as it has been 3 years now since her last seizure. But, then I think back to those awful memories of when she had those first four grand mal seizures, each lasting 30-90 minutes each….it really is quite an awesome thing where she is right now.
Thanks to those who show her (and us) so much support, and to those who pray for her. We appreciate it!
- That her Botox procedure goes smoothly AND that it is SUCCESSFUL!
- For her to continue to be seizure free
- For her physical therapy to strengthen her up well and that she will soon show ability to start working with walking with crutches
- For her speech will just have a big breakthrough, so she can show everyone how much I know is up in her working mind
- For continued good health