I ordered a "SPIO" (Stabilizing Pressure Input Orthosis) for Katie. This is an undergarment that is similar to SPANX (for women, to hold in our cellulite!), or a girdle - if you can't visualize a SPANX. Katie's is a spandex type of material, and for her I got the pants only - which is worn under her regular pants. It is intentionally tight on her so that she receives input, and it should help her to know where her body is in space.
So I put it on her today for the first time, sent her to school, and I get a note home from her teacher that she took 5 or 6 steps today, that's a lot for this girl! This SPIO just may be worth the $100 that it cost! We'll see how it goes tomorrow at treadmil therapy - that should be a good test.
*The SPIO seems to be helping her - She walked to me at treadmill therapy and it was the most balanced I have ever seen her - about 6 steps! Then, I went to the school for a conference, and Katie's teacher showed me how far she had walked the day before, and I would guess it would have to be at least 10 steps! Her teacher said she pushed her walker aside, and walked over to where all the other kids were calling for her. (This SPIO is also really good for kids with autism - and a 90 day refund policy!) I think I made a good investment!
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Katie's Story!
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!
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!
about Katie
- Amy
- 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!
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