Even though its almost 2 months into 2017, and i’ve posted a couple times since beginning the year, id like to reflect on 2016. Looking back, the only word I can think to describe it: chaotic. We’re pretty use to the usual running to the ER for every fever and everything that follows- but we were not use to being discharged & admitted every other week for two months. It was even more chaotic with a newborn on top of it. I seriously started to dread Mondays because I knew a call was coming saying his sodium was low and he needed to be admitted. Then, to finally get that figured out and start battling anemia and needing blood transfusions every two weeks (which also prompted an admission every time).Not to mention he had more than a few line infections, procedures & different tests. It definitely had its tough times, but one thing i’ve seriously learned is that tough times don’t last, tough people do. Last year could have been worse, but i’m glad its over & we managed to make it through. I’m hopeful that 2017 will be a much better year with less frequent hospital admissions. And maybe, just maybe this year he will get his transplant.
Despite all that he went through, and all the days spent in the hospital, I am beyond amazed at how well Jaxson has progressed in just a year. There have been some cases of regression, which is to be expected, but he’s bouncing back so fast. For starters, he gave up his beloved pacifier that he couldn’t go a second without, with no problems. He learned how to walk. He learned how to color and use scissors. He learned more signs. He’s learning his colors. He’s more willing to play with toys, and is starting to understand how they (and other things) work. He’s more aware of whats going on around him. Even though he doesn’t talk, he knows whats being said to him. He can answer most yes/no questions, and complete simple tasks. He’s learning how to dress himself. He’s learning how to use silverware (by trying to feed me, not himself). He’s finally willing to explore different textures and is even more comfortable around new people and unfamiliar environments. To look back at all of his previous therapy goals, and see how fast he met them and exceeded everyones expectations is incredible. We still have a long way to go, but to think he wasn’t doing any of this a year ago makes me confident that he will continue to thrive. 2017 will be his year. No matter how long it takes, these mountains will be moved.
Even his physical changes are remarkable. He looks so much healthier now!
*UPDATES: The bone marrow biopsy taken last week came back normal, and looks extremely healthy. Again, I was hoping it would show something so we weren’t left guessing. So since it showed that its making adequate amounts of red & white blood cells and platelets, Dr. Graham (hematologist) thinks that because Jaxsons liver and spleen are both enlarged, the blood cells are getting trapped in there, or he’s guessing recent viruses are causing his body to take longer to bounce back to normal. Because he has such a high amount of iron in his body, and blood transfusions only add to that, he wants to hold off an a transfusion as long as possible. There isn’t too much concern about his red blood cell count being low because Jaxson is still functioning normally & he doesn’t seem to be in distress at all because of it. He is hoping this will correct itself, but will still keep a close eye on it.
Jaxsons transplant fund: https://www.youcaring.com/jaxsondahl-681028