We still do not know what’s causing Jaxson to be anemic. The hematologist drew labs last week to test his folate levels among other things and that came back normal. We were kinda hoping it would be off so that would give us the answers we were looking for. But it didn’t. He did mention that last week his kidney function was off, and that could possibly be the cause. But, his GI doctor hasn’t caught it in his regular labs, so the hematologist is wondering if it was just a fluke or if the testing at the lab was off. Another thing he’s thinking it could from is the virus he had back at the beginning of November; sometimes a virus can destroy red blood cells. I’m not an expert, but it seems to me that his body has had plenty of time to recover from that virus so his red blood cell count should be starting to come up by now; especially since he’s never been this anemic before considering all the infections and viruses he’s had in the past. He has ruled out any deficiencies and is now thinking it’s some kind of infection or complication. His platelet counts have been the most sensitive in recent labs, but those are slowly starting to come up. So he worked us into his schedule today, he drew more labs to take a closer look and see if we can finally figure out why this is happening. It also gave us a chance to look at his red blood cell count again. It didn’t drop as much as it has been, but it did drop a tiny bit- so he’s hoping maybe it will start to come back up more. These labs will re test his kidney function and some other things and we will know the results by the end of this week or early next week. He mentioned that we would hold off on the bone marrow biopsy until after Christmas but if needed we could do it this week or next. Jaxson has his routine in home labs on Monday ordered by his GI doctor, so that will again give us a chance to look at the red blood cell count, if it’s low we will most likely transfuse him since we plan on going out of town for Christmas and don’t want to have any surprise hospital visits in another state. While he’s been pretty much at his baseline for activity lately, the last few nights he has fallen asleep earlier than usual- usually he goes to bed around 9:30 or 10 and I literally have to drag him in there. But the last few nights he’s fallen asleep on his own around 8, and right now (6pm) he’s currently napping which is unusual. I’m not sure if it’s just the busy days we’ve had or if the anemia is finally catching up to him. We are just 9 days away from leaving to California for Christmas so please pray that Jaxson continues to stay healthy.
Speaking of Christmas, Jaxson has been doing fun little Christmas crafts at school. So far he’s made two ornaments and a sand Christmas tree for me. 🙂 I seriously love preschool, and I’m saving everything that he brings home, I’ve already got a box almost full of his little projects.
He’s doing amazing in therapy, the best he’s ever done actually. He’s a lot more open with new people now, so it’s easy for his therapists to work with him. It’s been a little hard on him lately because he has speech and OT on Thursdays as well as preschool in the mornings. So he’s kind of burnt out by the second therapy session. I’m going to see how he does this week, and if it’s the same I’m going to see if we can move one to a different day. The progress lately really is amazing though. Looking back to where he was 6 months ago, both medically and developmentally, to now- the progress is just astonishing. I’m so proud of my boy and all that he overcomes everyday. He’s moved many mountains, but he’s not done yet! One day, all of this will be worth it. 💚
Donation account for transplant related expenses: https://www.youcaring.com/jaxsondahl-681028