5/14 - Sam's Journey - Baby steps

I hope you all had some quality family time over the Easter weekend. We had a relaxing long weekend, and despite putting a rut in the road between home and church, it was nice and mellow. Now we're just muddling through the rest of school year. There's really not that much time left--14 days to be exact. I know Sam will make it. As for the rest of us, we'll just have to wait and see. 

In general Sam news, we've had a couple of events of note. The first was his doctor appointment at Children's with Physical Medicine and Rehab. When we got to the hospital, there was a downpour of biblical proportion, and we were absolutely soaked by the time we got in there. We waited for a while, saw a couple of nurses/assistants and waiting even longer. I was starting to get a little irritated when the doctor finally came in. It was definitely worth the wait, and we LOVE Dr. I! She checked a lot of different things, and based on what she saw, she recommended that we do a couple of significant things. One is that he have intensive rehab again. (So much for a lazy summer!) We are working on getting him back into PATE for that (his choice) which meant he had to go back and visit with his former therapists there. Everyone was really happy to see him, and he was pretty happy, too. We're waiting to hear from insurance, and we're hopeful they'll be cooperative. I might have to dust off my angry mommy voice if they are not.

The other recommendation from Dr. I is that he switch out the medication for preventing tone and spasticity. (Basically it keeps his muscles from firing constantly and prevents pain associated with that.) He has been on Baclofen since last April or so, and he takes it in his applesauce cocktail twice a day. (Side note: I swear, once this kid starts eating real food again, he will never touch applesauce or pudding for the rest of his life.) The problem with the Baclofen is that it goes through his whole system, which relaxes everything and actually slows down brain function. <---This is particularly bad for someone recovering from a brain injury. Her recommendation is that he receive Botox shots in his arm and leg to keep the medication localized and target the spots giving him the most problems. If they work, he would need to get another round of shots in 3 months. We would try this for a few rounds to see if it makes any difference. I am really hopeful that this makes a huge difference in his mobility. Once he regains movement and control in those areas, his balance will improve. When that is in place, that gives him a lot more freedom with taking care of just about everything independently. I'm feeling really good about this plan, and I'm optimistic he's going to make some more really big strides like the ones he was making when he was back in therapy full time. Back when we were constantly living in the world of medical decisions, my gut was right pretty much 100% of the time. Here's to hoping that that streak holds!

Otherwise, his sleeping EEG is coming up shortly. Aaron has been home before leaving for his Alaska salmon fishing journey (that's a whole other blog) this summer. Because he does not have school or work the next day, he has been charged with keeping the boy awake most of the night so that there's a shot of him actually sleeping during the EEG. 

School continues to go well for Sam. Sarah and I are in the crazy busy time of the end of the year/get ready for next year stuff, and Jim is neck deep in accompanying schools for their end of the year stuff in addition to church stuff. We're pretty fried, but we always cross the finish line, even if we're dragging each other over it.

Today saw a spontaneous pop up game of frisbee. Sam, Sarah & Aaron were the main participants, but I did play back stop for a while. It took me back to the day Sam went bowling and what a huge step that was for him. It also reminded me that the night before the accident occurred, I had a conversation with our Athletic Director who also happened to be Sam's PE teacher at the time. For those of you who don't remember, pre-accident Sam was not very fond of physical or athletic activity. He did ride his bike everywhere, but most every other sport was deemed outside of his sphere of tolerance. That was, until they came to the Frisbee Golf (Ultimate Frisbee?) unit in PE. Suddenly, he was tearing it up in PE like some kind of frisbee savant, and people wanted him on their team. I am pleased to report that the great majority of his frisbee-related skills are still intact! He does have some trouble seeing the frisbee coming to him at some angles, but even there, we see improvement from where he started in his recovery. Here are some pics from today's frisbee fun fest:

 

 

That's pretty much all I have for now. Stay well, and stay sane if you're hurtling toward the finish line of your own school year!

One final thing. If that was not enough frisbee goodness for you, here are a couple of videos. Enjoy!