First of all, I want to thank everyone who donated/bought a shirt from our booster campaign. It will tremendously help ease some of the financial burdens we will be experiencing post-transplant and allow me to focus more on Jaxson and his recovery at that time. I’m amazed at how well the campaign did, and the fact that so many people are willing to support him & bring awareness to his condition is incredible.
I pulled this informational pdf from the Donate Life website: 2017-NDLM_FAQs-FINAL You can also read my blog post about organ donation, and feel free to share! Although my post highlights the need for pediatric donors, adult donors are always needed as well! It only takes a minute to register 🙂
If you’d like a “twibbon” on your Facebook profile picture (which is the donate life banner on the pic below) to show your support & raise awareness for organ donors, then you can click this link & it’ll walk you through the steps.
We were able to attend a small transplant fair last week. There was a lot of information and great resources there. While I was there, I came to the realization that I want to be more active in the transplant community somehow- I was able to speak with the woman who put the event together and will be meeting up with her this week to discuss more of my ideas and hopefully get something going.
Jaxson had a follow up GI appointment on Friday. A couple weeks ago his labs showed high liver enzymes, so GI ordered a med 3x a day to be given orally and told us to try small formula feeds- because when he was on feeds his liver looked a lot better. Jaxson has severe oral aversions & will not take meds (or anything really) by mouth. So we attempted to drop an NG tube (a feeding tube placed through the nose, down the throat & into the stomach). He had one for about two years, but we took it out last year due to the fact that he was no longer allowed to take anything by mouth. He did well with it in the past, but this time he absolutely would not keep it in. As soon as we got it in place he would pull it right back out. So at the appointment, I asked the GI doctor about the option of placing a g-tube (a feeding tube on his tummy going directly into the stomach). She wanted to get the opinion of his transplant team in Pittsburgh before she went ahead with that surgery. Unfortunately, due to the risk of bleeding, his transplant team highly discouraged placing a g-tube. So, we will just keep trying to encourage oral feedings & hopefully Jaxson will get approved for feeding therapy. He is continuing to do great otherwise.
Back in February Jaxson saw an orthopedic surgeon because when he walks, his left leg bows outward. He referred us to a neurologist. We finally saw her today and she doesn’t think it’s neurology related, but wants to rule out anything possible. So she ordered an MRI, an EEG, and genetic testing. Those will all take some time to get an appointment for & results back so in the mean time we will continue his therapies. Once we get those tests done, if they don’t show anything & the leg problem persists, he will go back and see the orthopedic surgeon.
Jaxson finally got his speech device on Friday & has been doing SO well with it. Even though I know what he’s asking for or wants i’m still making him tell me on the tablet. He’s still getting the hang of it- but he seems to know that its for communicating. I’m so happy for him because now he can tell us what he wants before he gets really stressed out. I love that its customizable too. The look he gives me when he asks for something & I give it to him is the cutest. It’s like he’s thinking “Hey I was able to tell you exactly what I wanted right away.” I guess you’ll only appreciate little things like that when your child has been unable to tell you what he wants or what he’s thinking for the last four years, and continuously gets stressed out and upset because he can’t effectively express his wants and needs. So this device will be a life changer for sure.
He’s been progressing in other areas as well; He is learning how to drink water from a water bottle. I know earlier I said he won’t take anything by mouth- which is mostly true. He only began expressing interest in water again a couple weeks ago. His oral aversions are more anything with a weird texture or taste- he won’t bite or chew anything. He will only lick chips, lollipops, popsicles and take sips of water. He’s slowly starting to want to explore more things food wise. I’ve learned that with him, the more I pressure him to do something, the more likely he is to regress and shut down altogether. So i’m letting him experience what he wants when he wants. It’s definitely a goal of his to be able to eat by mouth- and I intend to go through with the feeding therapy whenever it’s available, but I kind of like him doing it slowly anyway. When he discovers he likes something, he finds comfort in it and wants it all the time. And there are times where the doctor will say no more of that, or nothing by mouth- and in those scenarios he doesn’t understand whats going on and will become upset, sometimes inconsolable. So in a way, right now it seems best not to force him to eat by mouth because inevitably in the future there will be a time where he won’t be able to eat for a little while and he will end up regressing again.
He’s becoming a lot more vocal lately- still not saying words or speaking sentences, but making noise when playing with his toys, yelling, and saying baba mama dada more than he ever has before.
He’s becoming more active- learning how to run, walking basically everywhere, jumping on the bed (with supervision, of course), and has just recently learned how to do somersaults!
He loves bubble baths again! Seriously, I can’t keep him out of the bath now. Just weeks ago I couldn’t even get him in. (He’s gone through phases where he loves it, hates it, loves it…) Hopefully this time it sticks and he’ll continue to love it so I don’t have to fight with him to give him a bath. 🙂
As always, thank you for taking the time to read our blog, i’ll leave you with a couple pictures to look at. 🙂