Ren has been in kindergarten for a month and loves every minute of it. I was so nervous about her pulling her I-am-not-going-to-talk gig, about her receiving the help she needs yet also not wanting her to be overly helped where she is being enabled and not working toward her potential and challenged. However, after some interactions with her great teachers, it seems she has adjusted very well. She is doing some talking in the classroom, playing with friends, moving all over the place at recess, walking like crazy in her walker, and as happy as can be. Conferences are in a couple of weeks, so I will learn even more details then, but so far everything is going well!
We traveled to a Children’s Hospital on Monday for an annual urodynamics study, which is a test that measures the amount of pressure in her bladder, detects any bladder spasms, and determines about how much her bladder can hold. For a child with spina bifida, her test results were excellent, according to the doctor. A “regular” kid her size can hold around 150-200 mL in the bladder, and Ren can hold at least 200 mL. However, since she seemed to be having some wetness after school each day, we are increasing her oxybutynin (medicine that relaxes the bladder and reduces/prevents bladder spasms, which cause leakage) to three times a day.
We also discussed possible future surgeries. The mitrofanoff surgery would involve providing a different route for her cathing. There would be a hole right in the belly button, allowing her to cath directly into the bladder rather than the other normal route. This could make cathing easier for us and nurses, and her – at least while she is young. However, since many girls do learn to cath themselves the normal route unless other complications including obesity occur, we are leaving it open to try to teach her to cath herself sometime in the near future, to see if she may not need this surgery. Ultimately, it is up to us as her parents to decide.
The other possible surgery, called the MACE surgery, also involves a hole in the abdomen area, providing a different route for her enemas. As I have explained in earlier posts, Ren (and many other individuals with spina bifida) has a neurogenic bladder AND bowel system. We are pretty sure she cannot feel when she has to poop, nor does she have the ability to push it out well. For the last year, I have been administering her a cone enema once every day or two in the evenings. She has to sit on the toilet, lean forward, while I…well….give her an enema from “down there.” She has to sit approximately 30 or more minutes to get things cleaned out. The MACE surgery would provide an easier route for the enema. We – and eventually she – can flush out her bowels through the abdomen, instead of from….down there. She might still need to sit for 30 minutes, but it will clean her entire colon from top to bottom, rather than just maybe half of it, and there is a chance she may have to do it a little less often, maybe once every 2-3 days. The MACE surgery is pretty popular, and I have read lots of positive comments about its results. She would have to be in the hospital a week, or longer if she has both surgeries done, but the end results should be worth it.
We do not have to decide anytime soon about the surgeries, but we have started the discussion on it now. My thoughts are we will definitely do the MACE surgery, but will wait to see how the self-cathing goes (whenever it is we start that) to decide about the mitrofanoff surgery. Maybe in a year for whichever one/s we do?
Then, on Tuesday, Ren had two more appointments at our local clinics – one with the new pediatric orthopedic surgeon, and then one with the neurosurgeon. Mainly, she has a very high arch that may be helped with a surgery involving transferring a leg tendon down there, and eventually, maybe one day, we might need to take out the rod that is in her thigh from one of her last fractures. Our biggest worry for that one would be causing another fracture, and thus the fracture cycle, so the doctor was very understanding of this and emphasized he was not pushing it and it was not a rush to decide. Other minor stuff: She needs her AFO braces padded up because she is getting some calluses and potential pressure sores on her ankles heels, and they are supposed to check on the progress of her new wheelchair, because it’s been like 3 months since we first started the process for it.
The appointment with the neurosurgeon was mainly our request, to see if she needed to be getting annual MRI scans on her brain/shunt area. He felt that it should be fine to do that once every three years, so she should not need that one yet. However, he wants to do an MRI of her entire spinal cord to: 1) have a baseline for future reference and 2) to check for any beginning problems of the spine that usually accompanies spina bifida, such as tethered cord, and an expanding of her spinal “tube” (I forget the name of that term) that can cause potential problems. We will be deciding sometime as to when to do that. She will need to be put under for that procedure, and I really hate that. But, he is hoping for us to do that sometime in the next 6 months.
Sooo…..mainly good news. School is going well. Her appointments went well. No bad news, just thinking about some possible procedures that will either benefit her or give further information on her body. No more seizures since her last one in July — We are even weaning her off of one of her “extra/backup” medications she has been on for quite some time. She will still be on another seizure medication, though. She is staying busy with school, Miracle League baseball and music therapy, and swimming will start again soon. Oh – and she was even on a float at our Homecoming parade today!
Our one main area of concern is still her speech. She is receiving speech therapy at school almost daily now, so hoping that will help. Again, she can say lots of words, especially with prompting, but she is not getting the phrases and sentences. Please pray her brain will figure out how to do all of that….soon!
She has such determination and desire to be independent and like everyone else. Below is a photo of her “mini-golfing”, where she of course insisted on doing it all herself.
We constantly are awed by the joy this little girl gives to us, and others. She is our good and perfect gift.
“Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.” James 1:17