I have delayed posting this because I was told recently that if I publish Jaxson’s story to one of the Donate Life websites, people could register to be organ donors in his honor & I wanted to put the link in this post. I submitted his story 2 weeks ago & it’s still not on the site, so I will write a separate blog post when it is published.
I’m so amazed to see how much love and support Jaxson & our family have from our community. On Saturday, Shawn, one of Jaxson’s teachers organized a garage sale; people donated items to be sold, & volunteers showed up to help set up. We couldn’t have asked for better weather that day, and the sale was successful. With the help of our community, we were able to raise over $2000 to help reduce some financial stress during & after Jaxson’s transplant. I am incredibly thankful for the time and effort put forth by Shawn & all the volunteers who made this happen. Seriously, thank you all so much- it means so much to me that you took the time to do this. Shawn’s daughter, Kyley, also made a video of Jaxson’s journey (and did an amazing job). You can view it HERE.
On Sunday April 30th, a woman named Ashley Foster, who is an organ recipient, represented the transplant community at a local Diamondbacks baseball game. She threw the first pitch & honored both organ donors and recipients by wearing a shirt filled with their names. Jaxson’s name was one that was listed. (It’s on the back, to the right and towards the bottom.) I’m sure that was an amazing experience for her, and so special that she wanted to include other people who have been affected by transplant.
Mr. Jaxson has been doing wonderful lately. He hasn’t been admitted to the hospital since December. That’s 5 months. Fiiiiive whole months, guys! This is our longest stretch without a hospital admission since- I don’t even know (its been soo long). But we’re loving it. His progress definitely shows it. Usually, when he has repeated hospital stays, he will regress- sometimes a little, sometimes a lot. It’s always one step forward, two steps back. So during those times, his progress wasn’t as noticeable- because he would learn one thing, but stop doing another. Or he’d become so stressed out that he wouldn’t learn anything for weeks. Lately he’s been learning/trying something new every day. He repeats words. It started when he wanted sips of water, I told him to say “water” in sign language. Instead of signing it, he said “wawa.” The day before his birthday, I kept telling him to say four. I’d say “how old are you?” and eventually, he would say “Four.” Then, his nurse worked with him to spell his name- not even long at all. Maybe five minutes in and he was trying to repeat all of the letters in his name. His pronunciation isn’t perfect, obviously. But he’s trying, and a lot of them he repeats spot on. He recognizes his name when written, and will try to say it. He will repeat his ABC’s, some numbers, and now says car, truck, sissy, mom, dad, bye, and dog without me telling him to. He’s finally to the point where whatever it is, if I tell him “Jaxson say____,” he will say it. It’s seriously amazing. For the longest time, anytime I would ask him to repeat something, he would instantly get frustrated. Even when he learned signs, he never did them unless he was asked. I really think his speech device is helping him be able to verbalize a lot more, because he’s able to push a button and hear it over and over. He’s going to be talking up a storm soon. He takes sips of water out of a sippy cup- which is another big deal. He’s still not interested in anything other than water, or eating food, but I know he will get there. He’s interested in toys now, more than he’s ever been. Some of his favorites are Mr. Potato head, monster trucks & play-doh. Our next goal is to get him to do more imaginative play & make sounds. An example- when he’s playing with the monster trucks, he’ll say vroom vroom or bang when it hits something, or when he’s playing with his potato heads, he’ll act like they’re talking to each other etc. Again, at the rate he’s going, I know it won’t be long until he completes that goal either. Before he started walking, I remember thinking he never would, or it would be forever until he did. Then one day he just got it and soon after he was running, so I know soon this will all be in the past & he will be all caught up; he just needs a little extra time to develop. It’s amazing to look back and see how far he’s come in such a short amount of time. I know to some, these accomplishments may seem small, but to us they’re huge & worth celebrating. Watching him grow and learn new things has been wonderful.
Thank you everyone for your continued prayers & support, we appreciate it!