I so feel like I'm failing this whole blogging thing. It's been 6 months since I posted and a whole lot has changed in our lives. Let's start with Colton!
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| Colton in his Vest Therapy |
Colton is growing up so fast. He will be 3 in December. He has gained so many new skills in the last 6 months. I mentioned last time about having the whole genome sequencing done to see if we could find a genetic cause for Colton's Lissencephaly. We had that drawn the end of March and it did indeed take a long while for the results to come back. We found out that Colton has 2 variants on the RYR1 gene. What does this mean? Well, this is the gene that is associated with Central Core Disease. Check out this link for more information.
https://ghr.nlm.nih.gov/condition/central-core-disease#synonyms Basically this disorder affects muscles used for movement. The muscles are unable to transport calcium which prevents the muscles from contracting well. The problem with this diagnosis is that it does not account for the changes that were seen on his MRI of his brain when he was a month old. So Colton got another MRI done the end of June. Guess what?? They did not see any sign of Lissencephaly. He does have some decreased white matter that can be seen in kids with developmental delays, which he has. This diagnosis fits him so much better then the Lissencephaly diagnosis did. What does this change on the therapy front???
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| Colton at the Zoo |
Absolutely nothing! Colton has continued to receive physical therapy, occupational therapy, speech therapy and developmental therapy. He is signing so many words now that mommy and daddy can't keep up. He is working on hold up his own head and does so for short periods of time. We are looking into other ways for him to communicate with us and make it easier for him. We think he gets frustrated sometimes since we don't know what he is saying. He is also working on moving his head without the use of his hands. He loves to be up off the floor in his stander or wheelchair. We still have the loaner wheelchair but the paperwork as been turned in for his very own chair! We are hoping to get it before he starts developmental preschool in December. AHHH!! Colton's going to school!!! I still can't believe he's starting school already. Luckily for him he will be in the afternoon class so he won't have to wake up very early. He still sleeps from about 10:30pm to 11:30am with no nap. He is so happy and has so much fun playing and "talking" to everyone.
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| Colton and Mommy |
Here's the update on the rest of us :). Nick is still working for Parkview Noble EMS and loves it. His knee is still bothering him and he will probably have to have surgery in the near future to put cadaver cartilage in the knee. We are hoping that this will fix his pain that he continues to have. I have been feeling much better since the last blog post. I was pretty much sick in some way or another from December 30th to the end of May/beginning of June. I haven't been sick since then (I'm finding some wood to knock on as I write this). I have started going to Integrative Medicine to hopefully help me feel better on a regular basis. I've found out a lot of things since going to them and things are going to start to get better. I am on a lot of supplements to try to get rid of some inflammation. I'm also working on some diet changes including quitting dairy :(. I'm gonna miss my cheese, but in the long run if I feel better it's worth it!
Probably the biggest change around here is that we started a home based business. We are now selling LuLaRoe! We started the end of May and are enjoying it so much! I love seeing women feel good about themselves in some seriously comfortable clothing. If you haven't heard about LuLaRoe, let me know and we'll get you hooked up! For those that do know about LuLaRoe, feel free to join our VIP
group on Facebook. It's LuLaRoe Christy Griggs VIP group! Here's the Link to join!
https://www.facebook.com/groups/1843709425896197/# Another big thing around here is that I no longer have a day job. I'm sure that most people know this, but thought I would put it out there. In the middle of July, I was let go from my job at Dr. Smith's office. I attempted to negotiate some of the hours that I was working and he didn't want to let me cut back at all, instead he fired me. So, I'm currently following my dream of being a stay at home mom to Colton and working our LuLaRoe business. It wasn't the greatest timing, but when is it ever?
xoxo, Christy
