Proprioception: the ability to sense the position and location and orientation and movement of the body and its parts.
In Katie's case, she cannot tell where her body parts are in space (legs, arms, head, etc...) although it is getting better. Leg braces help Katie with proprioception because when she feels the pressure from the braces on her legs, she can tell where they are in space. A year ago her legs were all over the place - she would raise her knees too high and criss-cross her legs while walking. The braces also help to keep her feet in the right position (she was standing on the top of her right foot a lot - ouch!) and from criss-crossing.
Recently when we were at the Orthotic Specialists, Katie accidentally banged the back of her head against the wall then she did it again, on purpose. Bret (the orthotic specialist) saw her do this and told me that kids with low tone tend to do that kind of thing because it lets them know where their head is in space - that she could "feel" her head when she banged it. I know, I thought this was weird too. I was so glad to have someone recognize this and have some sort of reason for it. And it's the same story with her legs - probably more so than any other part of her body, I'm guessing. Bret along with Katie's physical therapists said the proprioception should get better as she starts to become more independent in walking. So...
Katie has been really wanting to walk! She keeps reaching out to us to take her hands and walk - and then she goes forward with determination! With her leg braces on or barefoot, we have noticed better walking balance and her legs aren't crossing anymore. She has her braces on most of the time, but when they are not on, I am seeing less of her standing on the top of her foot. Just about a month ago, we had a meeting with Katie's teacher and school therapists to discuss goals (she is in a preschool at the local public school in a program for kids with disabilities). They wanted to know what might coax her to want to walk across the room in her walker, because they weren't seeing much ambition - I told them m&m's and puppets. Well, within days Katie was showing a desire to walk at home, which I had NEVER seen before, and now without the bribery! This determination and wanting to walk is new, it probably started about three weeks ago, before that I had to be stocked up on cookies or chocolate.
Katie has a long way to go before she will be able to walk by herself. It seems to me that for the past two years she has been stuck in the same groove with very slow progress in walking, and now is finally making good breakthroughs physically, and also with her balance and coordination, that I can actually "see". All of these little advancements will eventually add up to one independent walking child named Katie, I just know it!
Read our story on the ViaCord website - click on the picture above
welcome to my blog!
Our daughter Katie, underwent a cord blood transfusion at Duke Medical Center in early January 2010. It was her own (umbilical) cord blood which we had saved at birth through a company called ViaCord. Not really thinking we would ever have a need for it, we were absolutely THRILLED at the thought that her own cord blood might be able to change her life, and help her to progress faster.
We are very hopeful that this procedure will help Katie to progress faster in overcoming her many physical delays. Mentally she seems to be fine, able to understand, and tries to communicate, but her physical delays hold her back.
What is expected is that the stem cells in the cord blood will repair or replace any damaged cells, or form new connections anywhere in her body that needs it. We were told not to expect much for at least 6 months - that most parents report a jumpstart in therapies at about that time. However, there are those families I have seen on youtube or the news who have incredible results - some even right away, and I can only be hopeful that we will have a similar experience. After all, I am her mom!
I believe that with the help of Katie's therapists, caregivers, and family, that I will be able to objectively sort out any milestones or changes that may be due to the stem cell transfusion, and that is what this blog is all about!
04/20/16 Katie has been diagnosed with a very rare gene mutation on the gene GRIK2. TGen is who found this gene mutation and put us in touch with a scientist at Northwestern University who is doing further research on Katie, specifically. So awesome!
Katie was diagnosed with hypotonia at age 1, which is basically weak muscles, not really a true "diagnosis". We have no idea why she has this, but it delays her in many areas such as crawling, sitting, walking, talking, and fine motor skills. Katie is now 10 years old and she started walking about 4 years ago but still unsteady. Her coordination and balance are something we are constantly working on.
She did wear glasses from ages 2-4 and then her vision improved and she doesn't need them anymore, which is so great! Getting glasses on her was not easy - had to come from behind and put them over her head that way. It's nice not to have to worry about getting the glasses on her any more!
Katie can totally understand what you say, nods her head for "yes", has a few signs (for "more" and "me") but still is not able to talk much at all. Maybe a few words.
Katie is a work in progress!