Two of Katie's therapists were here yesterday working together to get her to say "g" as in green. While I was running amok cleaning whatever I could in the hour they were here (it was President's Day, so Katie was home all day and I had not gotten a lot done), I heard them applauding her, and knew she must be doing something good! They were pointing out green things in books and green toys, and yes, I even heard Katie say the "guh" sound, and they both said that she said "gr" also. I was happy to count about five rounds of clapping! Katie doesn't say much, (around her parents anyway) and we really have to repeat a lot to get something out of her, or frighten her... not on purpose of course. The other day when our older dog had an accident in the house, I jumped up frantically to get the dog outside, and I must have scared Katie because she was somewhat screaming, "Momma! Momma! Momma!" It was great!! Too bad the dog had to poo in the house to get her to refer to me. Oh, and there was the time I dropped a glass bowl...
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!