I see again that it has been almost 3 months since my last post. But, that’s good, because usually no news means good news. And, in this case, the updates are generally good news.
Ren had spina bifida clinic last week, and it was filled with lots of information. The orthopedic surgeon, physical therapist, and rehabilitative doctor were all happy with how Ren was walking. We had videotaped her walking using her walker (see video below) recently in her “floor reactive AFOs (ankle-feet-orthotics), in other words, her smaller braces, and they were commenting to each other as they watched the video about how she was doing such a nice job, without any leaning of arms or buckling of legs, and even able to take her hand off the walker. So, it was decided that she could start using her AFOs at school too – she had been only in her full length braces there, for precautionary purposes, as her legs strengthened back up after all of the fracture issues. A few minor concerns included her left knee does not straighten quite all of the way – something that we will watch, her legs are slightly different lengths – again something we will watch, and her muscles between her hips and thighs are a bit tight – something we can help by having her lie on her stomach and up on her elbows to stretch it out. The physical therapist found a hand cycle (called a whirl a wheel) that we might look into getting somehow…maybe with help from Children’s Miracle Network. Also, the school is ordering a mobile stander for her to use at school, and we would be able to borrow over the summer as well.
Also at the clinic we discussed her bowel movements with at least three different physicians. I know, exciting. But, there was concern that she does not have them easily – I have to “help” her often (won’t go into details). So, we are to give her a much bigger dose of Miralax and try glycerin suppositories as well. We have just started the Miralax, and already there is a difference. I apologize for writing about this stuff, but individuals with spina bifida often have bladder and bowel issues because of their weakened nervous system in that area. We are pretty sure she can’t even feel when she has to poop, or even when she does poop. On a similar topic, our visit with the urologist was fairly good. Her ultrasound of her bladder and kidneys looked good. He is setting up another urodynamics study to be done this summer at a larger hospital, to further check her urinary tract and bladder. We are still cathing her 3 times each day.
Ren is still greatly delayed in speech. We are trying out cranial sacral therapy at a chiropractic office, to see if any benefits can come from that, though we don’t notice anything yet after two sessions. It was worth a try. But, she is still very active and making progress. She know her colors, her numbers 1-10, her ABCs, she is working on her walking, her legs are getting stronger, she is still participating in adaptive swimming once a week, and has even done adaptive skiing twice this winter (also a video below). AND, she has had NO more seizures. And that is good news.
Here she is walking:
Here she is “skiing”: