Update 4/4/2019

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Theresa’s Update from Thursday:

Tomorrow (Friday) Josh will have been at Mary Free Bed for a full week and each day I have meant to sit down and do an update about how he is doing, so I’m sorry for the delay.

Josh is starting to get more comfortable in his new environment and he’s all ready made a positive impression on many of the staff here. I can still see he’s anxious at times, but that’s becoming less as the days go by.

Rehab began last weekend, though that’s a drop in the bucket compared to what he does during the week. Weekend days tend to have limited therapy and ‘rest’ time, where weekdays have at least 3 hours of therapy spread out over the course of the day, with meals and perhaps a couple of breaks scattered around. In many ways I’m grateful that Josh came here when he did, it allowed him to get settled in a bit before diving in the deep end on Monday.

He has been working with Physical Therapists, Occupational Therapists, Speech/Language Pathology, Assistive Technology Training, Recreational Therapy, Psychology and Child Life Services. Each day he has a schedule to follow and appointments set up with his team. The schedule varies from day to day as to who he is working with when. It’s nice to have it scheduled, so you know what’s going on from moment to moment.

PT has been working with him on rolling, sitting, standing and even a bit of walking. All with a lot of support. They’ve also been trying to find the perfect fit for a wheel chair for him to use to get around in. He’s still very weak on the right side so they are still using a mechanical lift to help him get from his bed to his chair, etc. It’s kind of like a big swing,I know I’d like a turn in it. He’s made a lot of progress so far. One week ago he couldn’t sit up without leaning on someone. Yesterday I got to see him sitting without anyone physically holding him up. He needed help to get into that position, but once there he sat so nicely!

OT has been working to help him learn to get dressed on his own with minimal help, as well as working on eating skills and stim therapy on his right arm. The latter is definitely helping as he has been able to shift his right arm around and wiggle his fingers again something he couldn’t do last week.

Speech is working on trying to help him get his voice back. They are working on his mouth, lip and tongue movements as well as breathing. Today he was whispering ‘puh’ over and over again and I could just barely hear him.

And since he still isn’t able to communicate verbally. Assistive technology has come in and worked with him on an iPad with a program that can speak for him. He of course picked a comical voice. It’s not perfect, but it’s nice to be able to have him use it to communicate with others.

He was able to get his feeding tube and final IV out this week as he has been eating/drinking better and he finished his last dose of antibiotics.

At this point they are anticipating he will be staying at Mary Free Bed for rehab for about 8 weeks, give or take. But that could all change based on the oncologists plan for chemo and radiation.

Speaking of oncology, things are still up in the air on that plan. We thought we had the final pathology for the tumor, but our oncologist told me today there are still some tests they need to do on it to be sure. The first tests showed it to be anaplastic oligodendroglioma, Stage 3, a somewhat slow growing tumor. But there are some things in the chromosomal makeup of the tumor that has them questioning that determination. So they sent it out for some more tests to verify. Hopefully we will have the results of that soon so we can know the full game plan for chemo and radiation. We will be meeting with the oncologist for a bit tomorrow to talk about general care, but at the moment we are focusing more on rehab and getting him stronger. We’ll be crossing this bridge soon enough.

Tomorrow, after the oncologist appointment, Jon and I will be switching off for a few days. It will be my first day back home and sleeping in a real bed since March 12th. It’s not going to be easy to be gone, even just for a few days but I know it’s needed; plus it will be nice for Jon to get to hang out here and see everything that has been going on. I am excited to get home and spend more time with Kayla and Elijah even if just for a few days. It’s not easy being apart like this, but it’s what is best. Now that he is in rehab though it will be easier to switch off a bit more.