Well, it has been a long while since I blogged so I don't even know where to begin. I think I will start with braces. We finally got the braces and they are wonderful. Keelie started out wearing them 15 minutes a day and slowly worked her way up. She is now wearing them 2 hours a day. They make a huge difference in her balance. It is GREAT!!!!! She does still fall a lot but not near as much as she did.
Keelie in her braces.
So as you can see they are small but they do help. And she actually doesn't mind wearing them.
On to other things going on.......Keelie is really going through some difficult issues with being very stubborn and throwing fits. She has never done this before but when she does it is almost never ending. This comes along with her disorder. We have the support group we communicate with and all of them go through this. Their kids have fits and competitiveness, some have ADD/ADHD and some have anxiety. I don't see anxiety issues with Keelie but that's not to say it won't come. One can only hope. Another issue is frustration. Keelie gets really frustrated when she can't get across what she wants and she gets frustrated when she can't do something. Especially if she thinks she can. There are just lots of different things related to her disorder and we just have to work through each one on a "one day at a time" basis.
Remember Keelie is 1 of about 50 cases in the United States and 1 of about 150 in the world so she along with these others are guinea pigs, research candidates, etc. So not only are the parents learning but the doctors are learning as well. We are thankful for the research and the support group.
Josh and I did get our tests back and neither of us have the duplication. I have not tested Cayden or Ryland simply because they seem to be doing pretty good. Ryland does have an appointment with a geneticist in Jackson but I don't think I am going to take him.
Keelie's speech is getting a little better and she has made some progress. Her physical therapists says her strength is getting a little better but she is still only measuring at about a 24 month. And her occupational therapist says her fine motor skills are better, but again she is behind. So we just continue with therapy. I am hoping to get her in TK Martin Center for her to attend their school program and she should be starting HIPPO therapy in the fall if we get her in. Fingers crossed. Both of these will be very helpful for her.
Last note......I will be having my gallbladder removed tomorrow. YUCK!!!!! Due to some complications I have been having. I'm not worried so much about the surgery as I am about the kids being taken care of. I know my families will help in so many ways, but I just can't help but worry. Please pray for Josh, his parents and my parents for them to handle all the chaos I handle on a daily basis. Getting Keelie to therapy, getting Cayden to school and taking care of Ryland for the next week due to the fact that I will not be able to lift. Thanks in advance.
I will try real hard to blog more often and update you in the life of the Gentry's. Thanks for following the blog.
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