This holiday season held a few firsts for Jaxson! The first thing to tell you about is that Jaxson got to leave the house to see Santa this year! At 5.5, Jaxson has been too sick in previous years to take him out of the house. This year, with the recognition of his compromised immune system, Jax got a beastier pneumonia vaccine. The Pneumovax shot gave Jaxson nearly a four-fold increase on his pneumonia titers, meaning he has antibodies to help fight those viruses. He also got a boost from his flu shot for influenza A, and actually has flu antibodies this year! So we felt comfortable taking him out in public, and both boys had such fun! We went to a local mall that's likely on it's way to closing, and there were very few people there so we only had to wait for one customer before it was our turn. The boys talked with Santa and the photographer snapped pictures for about 10 minutes. We got 12 shots in all, but here are a few of my favorites!
The following Monday is when the boys got to go to Nationwide Children's to meet some of the Ohio State Buckeyes football players along with coach Meyer. That was a blast, I've never seen Jeffrey so excited for something! They had a blast there as well.
Christmas was amazing this year! We had some elves send some things, and after we opened gifts at home, we went to my parents for lunch and more gifts. It was a really nice day, no one argued much and we were able to relax and enjoy the day.
Then the weather kicked in. Cold wind chills, down to -25 at times, followed by a warm up with snowfall. Then it warmed up and melted, and now we've got another 6" on the ground here in Ohio. Another first for Jaxson came, because he's been so stable and done so well, Jaxson got to go outside and play in the snow for the first time ever! He wasn't too interested in touching it or getting down in the snow to play, but he totally enjoyed running around outside with his brother. Jeffrey likes to make snowballs and throw them at the tree, which Jaxson got a huge kick out of. It only lasted about 20 minutes because it was still pretty cold that day, but that he was able to even get out there is a huge blessing!
This last bit of information is fresh. Jaxson had an IEP review last week, and he's made so much progress in PT and speech that they almost discontinued his school therapies! They didn't because they want him to continue to build his foundation for kindergarten next year, but his time for both has been decreased. This speaks volumes to the amount of progress Jaxson has made over the last year! He's meeting PT and speech goals left and right. He is even meeting goals in OT, but that's his biggest delay so that's not going anywhere soon. But I am so pleased with the progress he has made, and we set everything up for him to stay at the same school next year. They have a few KG rooms, and they do everything on an inclusion basis. So Jaxson will spend most of his time in a regular classroom, but when they split into their stations, he can be pulled for therapies. I can't wait, I know he's going to do great!
Final piece of info is that Jax had his heart echo yesterday. His gradient rose from 10 to 13, and while I anticipated them telling us it was time for surgery, they aren't doing it yet. I'm not sure how comfortable I am with waiting 6 months for another echo, but if he only rose 3 points on the scale in this 6 months, then it should be similar over the next 6 months as long as his growth rate remains the same. We are watching him closely because he likes to lose his color and he's been complaining of being tired a lot, but it's also not stopping him from doing anything. Dr. Bowman says she doesn't think the fatigue is due to his heart, so I'll bring it up at the sleep clinic next month, and if no answers there then it will be a call to neurosurgery for head scans. But not jumping ahead too fast, right now Jaxson is happy and healthy, and that's how we like it!
So that's the update for Jax! Jeffrey has been going to behavioral health for the last couple of months to address his ADHD issues, plus he was diagnosed with generalized anxiety which didn't surprise me a bit. He's doing so well in school this year and he really likes his therapist, so I'm hopeful that he will get a handle on things and learn some coping skills. He also started playing basketball with the Junior Cavs League, which was nice enough to allow him to join even though the season already started. He had his first games on Sunday, where he didn't play much but enjoyed meeting his team, and his first practice is this Friday.
Meanwhile, I've started a freelancing business utilizing my 15 years of experience to assist businesses with web content, social media accounts and posting, and SEO management to boost traffic and increase sales. Plus I'm working on rebuilding the All Things Kabuki website with our new host, and I have high hopes that it will be far better than it was before!
Jayson is by far the rock that keeps this family together. He quietly goes to work every day, busts his butt to get his job done, then comes home and helps out around the house and plays with the boys. He works on our vehicles himself, fixes every little thing that goes wrong in this house, and really helps me stay on top of what needs done. He's a little cranky that he had to get glasses this year, but he's getting used to it and when he has them on, he no longer looks like he's 15 haha!
Overall, things at the Burks household are going well. There's always struggle, especially when mom (me) slides into depression or has anxiety rising up, but overall we're all doing well! I couldn't be happier to report such amazing things in our lives.
~"Life is not the way it's supposed to be, it is the way it is. It's how you cope with it that makes the difference." (Anonymous)
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