The last time I posted was Jaxson’s first day of school- he has gotten back into his routine and loves it so much. School obviously plays a huge part in his progression and he is learning so much lately. We have a little alphabet toy here at home, and the other day I pulled it out and just started saying the ABC’s. After a couple letters, I stopped and Jaxson kept going. Then I pointed to each letter and asked him what it was, and he was right every time. I then went to the numbers and started counting and he went to 12 all by himself. (He tried to go into the teens, but those numbers weren’t as clear.) This was a pretty big surprise to me because while I knew he could sing the ABC’s, I didn’t know he knew every single one visually yet. He knows his shapes and colors as well and is also starting to use 3+ words to form a sentence. He’s starting to be able to express his wants and needs a lot better. I knew all of this was in that little brain of his, he just needed a little extra time figuring out how to get it out.
Jaxson is still doing well medically and it has been 12 months since Jaxson’s last ER trip and hospital admission. A WHOLE YEAR. I’m pretty positive this is the longest he has gone being hospital free since he has been born! It’s been amazing to say the least. But, thats not to say we haven’t been busy the last year…
I’ll start off with the neurology/orthopedic follow ups for his leg issue. Since the MRI and EEG that the neurologist ordered both came back normal, we went back and saw the orthopedic surgeon. He examined the way Jaxson walks and looked at his bones/feet. He didn’t notice anything abnormal, and he said that he walks the way he does because of lack of muscle in his legs. Once he grows and gains enough strength, he should correct himself. Physical therapy at school will also help him with that. So he doesn’t need any kind of leg braces or extra support which is good news.
He has also had three blood transfusions since September (One a month), because his monthly labs started showing severely low Red Blood Cell Counts. Shortly after the first transfusion, his labs were drawn again and his RBCs were lower than they should’ve been given the fact that he was just transfused and he’s had no signs of bleeding and it has kept happening each month after that. His hematologist doesn’t think it’s an iron deficiency as his body actually had too much iron at the time it was tested. Thankfully, these transfusions are able to be done as an outpatient and they’re not invasive at all- but I wish we could figure out why this keeps happening.
In October Jaxson and I flew to Pittsburgh for his yearly follow-up visit with the transplant team. Like always it was a quick trip, we flew in one day and out the next. They are keeping him on the transplant list as a status one. And when I had talked to his transplant case manager, she said he was next on the list for his size and blood type- so I guess that means we’re hopefully a lot closer to getting “the call.” I brought up his frequent anemia to see if maybe they had any suggestions. They looked at the meds he was on and any possible side effects relating to anemia and noticed one medicine he was on (the octreotide that has seemed to stop his GI bleeds) had reports of it causing hemolysis (Destruction of red blood cells.) . After finding that out, they figured it was best to wean Jaxson from the med and see if it helped his anemia. Our home health pharmacy got those orders this week and will go down slowly week by week and he should be off it within the next month or so. I’m crossing my fingers that this corrects his anemia and that Jaxson doesn’t have any GI bleeds once off this med. Another thing that was brought up at this appointment was a G-tube. Jaxson had one placed before he left the NICU back in 2013, and it stayed in for about a year after that. It was taken out because it wasn’t being used at the time (he would take his feeds orally then.) and because it was causing problems. Lately, his GI doctor has wanted me to try small feeds, and so I tried to place an NG tube but since it was out for so long and Jaxson is older (and still stubborn) there was no way that he was keeping it in. I’ve talked to his GI doctor in the past about the possibility of placing another G-tube, but she said she wanted to hold off because the transplant team would do that at the time of transplant. So since we had the appointment with them, I figured I would ask them if it made a difference if he had one placed before transplant and they said no and that it would actually be beneficial to have one placed now so we can start small feeds to keep the small amount of intestine that he does still have healthy and functioning. They also ordered an ultrasound to check his vessels for venous access (to make sure that he’s not running out of places to put a central line) and an ultrasound of the liver to check for portal venous thrombosis- which is blockage or narrowing of the portal vein (the blood vessel that brings blood to the liver from the intestines) by a blood clot. We will get those results back in a few days. We have a date set for the g-tube surgery, but depending on the results from the ultrasound, that could change and they may not want to go through with it just yet.
That’s about all there is to update on, as always thanks for reading!