Can I just say how proud I am of my boy? He’s progressing so well. First, if you know Jaxson, you know that for the past three years you couldn’t see him without his pacifier. It was his comfort thing, it’s what was giving him the oral stimulation he needed since he isn’t able to take anything by mouth. It has turned into more of a chew toy and lately I would find him sticking the whole thing in his mouth. That’s when I knew it was time to take it away, because one wrong move and he’s choking on it. Yesterday before he woke up I grabbed it and hid it- out of sight out of mind. I put one in his backpack just in case for some reason he needed it at school. But after school he came off the bus without it! He went the whole day not needing it. He even fell asleep without it! This is way easier than I thought it would be. Now I just need to comb through my house and find all of them that he’s thrown or hid so he doesn’t find them before I do. Hes been finding other ways to get the oral stimulation he needs. This opens so many doors with speech, he’s already been more vocal than he was just 2 days ago.

And he FINALLY likes water! Because of the broviac, he’s been having sponge baths for so long and the bathtub absolutely scared him. Last summer they moved the line from his leg to his chest so I asked the surgeon if he could sit in the tub or a pool- we got the ok to that but couldn’t submerge him & showers were okay. So we tried it. He was okay with the bath as long as I was in it with him & there was no water- basically just in there with the faucet running- and we had to hurry otherwise he’d get stressed. He didn’t want to sit in the bath any longer than he had to and he definitely didn’t want to sit in even an inch of water. This past weekend, he sat on the first step in the pool and LOVED it. Then, yesterday Zack was taking a shower and Jaxson wanted in. He willingly got in. No kicking or screaming. And he sat down in there. (When I wasn’t in there, he would not sit, so I’d have to bathe him standing up.) I was shocked. Even more shocked that he didn’t want to get out, and when he did get out he screamed because he wanted back in.

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He has also been working on walking a lot more. He will walk, unassisted, from the living room to my room and back.

Hes been having a lot of fun at school. He made friendship bracelets a few days ago, they’re working on the letter “A” this week, so he brought home a page he colored with the letter A on it and yesterday he brought home a flag he colored. ๐Ÿ™‚ I’m so glad to see him scribbling on paper because it took him awhile to start doing that. I also think he’s gonna be left handed like his mommy. Whenever he picks up a pen or throws a ball, it’s always wth the left hand. We will see.

I am seriously so proud of him for all of his progress these past few months. He amazes me everyday!

We have something exciting coming up- his GI doctor called me a couple weeks ago and told me that every once in awhile, public relations will reach out to the different specialists and see if any of them have any unique cases. This time they mentioned ย Jaxson, and with my permission his doctor passed our info along to public relations. I got a call from them a few days later, and spoke to him about Jaxson and all that he has gone through. He is working on getting a reporter to cover jaxsons story, either in the newspaper, on the news or both. I will definitely keep everyone updated with that!

And finally, we are (hopefully) just days away from starting the appeal process for getting Jaxson evaluated and listed for transplant at Lucile Packard. Insurance denied the multi listing, and they denied the request for evaluation. Lucile Packard isn’t able to list him based off the evaluation done in Pittsburgh because it was done more than a year ago. So, I hope that after the appeal, it gets approved and I hope that this isn’t a long, drawn out process. Positive thoughts and prayers are welcome!

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One thought on “Updates!

  1. This is such a wonderful read Katie. You all have come so far and all this great progress with Jaxson just melts my heart๐Ÿ’™๐Ÿ’— I am so happy to see him so happy and all the progress he is making๐Ÿ’™ I pray for you guys everyday ๐Ÿ™๐Ÿป๐Ÿ’™โš“๏ธ๐Ÿ’— Love you with all my heart โค๏ธโš“๏ธ๐Ÿ’™โš“๏ธ๐Ÿ’—

    Like

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