It's been a little over a month since my last blog post for Jaxson. Normally, it doesn't bother me because a lot of his updates go on his Facebook page. But I think it's been a week or more since I even posted there! It's not for lack of things to post, either, there's plenty of Jaxson updates. But suddenly, life has gotten VERY busy! So, here's what you've been missing :)
If you didn't see the heart update from January, Jaxson's gradient on his mitral valve is at 13. Severe is at 10, so he's already past that. However, because he's asymptomatic, nothing is being scheduled at this time. I kindly wrote to his cardiologist to remind her that when we initially found Jaxson's mitral stenosis, he wasn't having symptoms. We only found it because he was re-admitted 2 days after he was discharged with pneumonia and couldn't kick it, which is when I requested an echo. Jaxson is so pale, color changes are not the best indicator of his heart unless he turns seriously blue. He's never done that, except in extreme cases of illness, so I have to look at other things. Does he get short of breath when he exercises or plays? Sometimes, but it's minimal. He sweats like a grown man, but apparently no one thinks it's due to something in their respective specialty. So, for now, we are scheduled to go back in July for another echo to see where he is.
Earlier in February, Jaxson saw complex care and the sleep doctor. He's in the 10th percentile for weight, but still way down on the height chart. From when we saw the sleep doctor in June until February, he grew 2 inches and gained 10 pounds! This, I believe, is largely in part to the feeding therapy we've added. Most days he gets extra calories, unless I can get him to take enough food to eliminate a bottle of Pediasure. So this is good news! I don't expect him to hit the charts for height, maybe ever, but that he's growing so much is definitely a positive sign! According to the sleep doctor, Jaxson's ferritin levels are still well below where they need to be. In June, he was at a 10. In January he was at 19. They want him at 50 or more! But I discovered that he isn't supposed to get his iron supplement with milk products, which I didn't know before, so I've adjusted when I give it to him. Since he's eating more by mouth, I just make sure he has a meal without any milk products and that's when he gets it. I'm hopeful we will see a bigger improvement in April/May when we recheck it.
Speaking of eating, holy cow! We have been uber-busy the last few weeks so getting meals in has been difficult, but we make it happen at least once a day. He's taking 4 ounces of puree and 2 ounces of Pediasure per sitting! If he doesn't get the Pediasure, he will take 5-6 ounces of puree. You guys, he is absolutely killing it! He still struggles with mixed textures, and if he takes too big of a bite of something more solid than a puree, he will throw up. So I'm pretty sure there's some very weak swallowing muscles and the coordination between chewing and swallowing can be hard for him. It's so interesting to do this with him, because for most of us, eating is like breathing. It's just something we know how to do and we don't think about all of the things that go into actually taking a bite. Jaw muscles need to work, your tongue is a muscle that requires a ton of coordination, and there are muscles along your throat and esophagus that have to work as well. There are a lot of moving parts to coordinate, and when you've been tube-fed your whole life plus have hypotonia (low muscle tone), eating is a big challenge. Seeing the progress he's made in just a few short months has been nothing short of amazing and I couldn't be more proud of how much he has accomplished! It gives me hope that one day he will be able to take all of his nutrition by mouth. Even if we leave the tube for meds, I don't care. As long as he's eating! I will say, though, that he does still prefer his tube. So while he's made a ton of progress, there is still a long way to go before it's gone.
Also in February, Jaxson saw audiology and the dentist. All good news at both appointments! Jaxson actually hears better than we initially thought, and this is something that's relatively normal for his age. He can actually participate in the games they play to test his hearing, which makes it so much easier for the audiologist to determine where he is. He can hear 2 out of the 4 frequencies in his right ear, so we've opted to trial that ear WITHOUT a hearing aid! He still needs the one for his left ear, and his hearing loss is sensorineural so it will never get better, but if he can get by with one then we'll take it! We can always add it back if we think he's not doing well enough, but the idea is to not damage what he CAN hear by using a hearing aid. So far, so good! At dental, Jaxson was a MODEL patient! I was in complete shock, I thought for sure I'd have to sit right next to him and hold his hands down. But the hygenist was fantastic, letting Jaxson feel everything on his hands before she put anything in his mouth. And even when he gagged (as he does every time I brush his teeth), he stayed put and didn't fight her. I attribute a lot of that to feeding therapy, because he gags a lot and we just keep going because he has to learn that that isn't a good reason to stop eating. Even if he throws up from gagging, I usually get him to eat at least a few more bites so he knows that he still has to do it. Anyway, he literally laid on the bed by himself while I sat on a chair a few feet away. No crying, no complaining, no biting, no nothing! And at the same time, Jeffrey went to have the seals on his teeth checked, but he had to go alone because I needed to stay with Jax. Jeffrey was amazing as well! He went, all by himself (a huge feat for him), with the dentist and was back before Jax was done. I was a super-proud mom that day!
This morning, Jax had PT and this afternoon he has OT followed by picking up Jeffrey and taking him to an appointment at 4. We got Jax set back up for bi-weekly OT, so no more flex scheduling thank goodness! Now, for school, Jax goes Monday, Wednesday and Thursday afternoons and every other Tuesday afternoon. I hope to add Friday next month to help him get prepared for going all day, every day next year.
Besides appointments, I've been running around to my own appointments, plus chaperoning events with Jeffrey's school and doing some freelance work for clients at home. When I'm home, that is! Last week, aside from Friday, I think I was home for maybe 5 hours in total during the day. It's just been crazy! Over the weekend, Jeffrey had a basketball tournament and Jaxson had the Conquer The Runway Heart Hero Fashion Show, which was so fun and the kids were all so cute! I will make an album on FB and post the video of Jaxson strutting his stuff. It was a really busy weekend, but fun!
I think that's it for now! OT this afternoon at 2, feeding therapy and INR check tomorrow, speech on Thursday and this weekend we are going out of town to visit family. At some point, I am sure I will have five minutes to sit down, but if not, I hope you all have a fabulous week! We are going to enjoy this warm up while it lasts, because we're in Ohio where the weather is schizophrenic and it can snow in April. But 70 degrees in February? We'll take it!
As always, thank you for taking the time to read this and follow Jaxson's journey with Kabuki syndrome. It's a never-ending battle with one thing or another, but it was so nice to write a positive blog about Jaxson. Have a blessed day!
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