Catchup

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!

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???

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.

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

Colton is 1 year old!!!

Wow, time really flies. I can't believe we have a 1 year old in the house. Colton is getting so big and has come a long way in a year. The picture on the left is when he was just born and the one on the right is his one year picture. He has changed soo much!

At his 1 year appointment on December 8th, he weighed 20 pounds 4 ounces and was 32 inches long. A lot has happened over the last month and a half. I mentioned in the last post that Colton had spiked a fever and we were going back to the doctor. Well, he still had his ear infections so we got a different antibiotic and they finally went away. 

Thanksgiving was a good time with my side of the family. We were able to get together and eat some great food and place a very bad game (Cards against Humanity). Here are pictures of Colton in his 1st Thanksgiving outfit...

 

Nick and I were able to do some Black Friday shopping thanks to my parents and Kirsten, our night nurse, volunteering to work that night. We were able to get 99% of our shopping done by doing that. 

Next up was Colton's 1st birthday party!  We had a blast and he had a great time too! Here are some pictures from his party. The cakes were done by a nursing friend's daughter. She did a fantastic job!

Colton's Smash Cake

Big People's Cake

Here is a video that was taken of us singing Happy Birthday to Colton. He was doing a fantastic job sitting up in his special tomato!

Colton was blessed with a ton of gifts for his birthday! We want to thank everyone who was able to make it to share in his special day. We appreciate it so much and he had a great time seeing lots of new people! If you check out my Facebook page, we made a video of Colton's first year and it is posted for everyone to see. 

We took Colton to see Santa Claus at Jefferson Pointe this year. The Santa was wonderful with him and knew just how to hold him. Colton is so in awe of his beard!

After we saw Santa we went and watched the Christmas tree that is synchronized to music. It was a neat show. 

Colton got to have two Christmases this year. On Christmas Day we went to Nick's side of the family to do some present opening and brunch eating. Here are some pictures of Colton opening gifts. 

He loved pulling the wrapping paper off the presents. He was pretty tired after all the opening though. He got a lot of new toys and a few books to read. 

Then we had Christmas with my side of the family the next day at our house. He got a ton more presents, including a new iPad holder! This will allow him to start working on some fine motor skills with his hands and be able to choose between things and eventually talk to us through an app. He also got a lot of new clothes that he needed since he is now in 18month clothes! 

Colton and his new iPad holder

Now on to the other stuff. Colton has has a a few appointments in the last month and a half. On December 4th we got another scan of his head to see where we are with the helmet process. He has made some progress, especially in the back of his head. We have another scan on January 6th. We are secretly hoping that we are done with it soon. We went to the eye doctor again and he was able to tell us that he thinks Colton can see (which we already knew). Colton still does not track with his eyes. We got back to vent clinic on January 7th. We are thinking there may be more changes in store for us then. 

He continues to do well and make progress in PT and OT. We are now getting to go to the pool every other week, which Colton thoroughly enjoys! Here are some newer pictures at the pool. 

 

He is now pulling our feet up to our mouth and trying to stick it in. Colton has also discovered that if he pulls on his helmet, he can make his head go where he wants it to go. He trades things between hands and if he puts something somewhere, he remembers where it is and gets it later. 

Lastly, I can finally announce that there is a big change coming to our household. I am changing jobs. I have taken a position with Dr. Smith, the pediatric surgeon. I will get to assist in surgery and see patients in the office and many more things. I am excited about the opportunity and chance to learn some new things!  I won't start until April as I have to give a 90 day notice at my current job. I am sad to leave Parkview, but I need a change. 

I am not sure how posting is going to occur from now on as Colton is a year old. I am going to try to keep up with every month to 2 months as things occur. They may not be as long of posts, but I can guarantee there will be pictures!