Sam's Journey - Of Botox and Summer Vacation

We made it through the school year! Everyone passed and/or got their work done, and we can close the book on another year. It's hard to believe that Sam & Sarah only have one year left, and that I'm making appointments for their senior photos. Even though we have a pretty busy summer ahead of us, we're really excited right now. Sarah's headed out for college visits with Jim, I'm doing some work, and Sam's got...REHAB!!! We got approved yesterday, which is good, since it's starting on Monday. Yesterday was Botox day. We had no idea what to expect since it's his first shot at this treatment. Correction--we knew what was going to happen, but we didn't know how Sam would react to that many shots. He's not a big fan of pain. In fact, he's not even a fan of minor irritation. End of the story first - he did great. There were a couple of shots that he really 'noticed' and had to breathe through, but overall, it was pretty quick and uneventful. They spray where they're giving the shots with this really cold numbing stuff (not the official medical term) but since it's an intramuscular injection, it still doesn't feel good. He had four shots in his arm and three in his leg. The doctor used an EMG (electromyograph) that detects where the right muscle is she wanted to inject. It's kind of a cool process if you don't mind the needles. Getting pre- and post-instructions and getting prepped took longer than the actual shots, which took about 5 minutes total. He is in the middle of his two days of the not-moving-around-too-much time period because we don't want the Botox moving out of the target area. After that, he'll be wearing his AFO (leg brace) a lot more, even if he's not going anywhere. Then on Monday, it's back to intensive rehab. The goal is keep the muscles flexible so they don't atrophy. We're also hoping that with rehab, he can rebuild more brain-muscle connections, and gain more movement and balance on his left side. If he works as hard and does as well as he did last time, there's no telling how much he can recover. We're really looking forward to seeing how far he can go with this new combo. Rehab can be really brutal, but Sam has always given 100% because he knows what's at stake. Even with all of the work ahead of him, he's pretty excited to go back. Besides, we can't have him just sitting around like a lump on the couch this summer. The only slight bummer in this new plan is that he's not going to come off the Baclofen yet. The doctor wants to see how the Botox does to make sure that's the thing that's working. We have another appointment in August to see how it's doing, so hopefully it can come off then. We'll keep you posted on how everything goes.

The only other medical event was the sleep study. Aaron did a world class job of keeping Sam up. The poor boy was falling in his oatmeal he was so tired. Jim took him to the appointment. They attached all the sensors and wrapped him up, but before letting him sleep, they did some different things. They had him blow on a pinwheel for 2-3 minutes (that might have killed me,) and they flashed a strobe light a little bit for which they had him cover his eyes. After that, Jim said that the guy turned back to Sam to tell him he could sleep, and he was already out like a rock. That boy sleeps like a typical teenager, although his brother still holds the household record. They only had him sleep for about 15 minutes, and when they woke him up he didn't even believe he'd been asleep. After that, he was on his way, although he required a shower before going to school to get all the goop out of his hair. We still do not have the results, but his next neuro appointment is in July. I'm guessing if they found something really horrible, they would have told us by now. We'll keep you posted on that appointment as well.

Now that we're in full-on slug mode, there's not much else to report. Aaron should be headed out to Alaska next week, but that's about as exotic as we get. I hope you all have a fun and relaxing summer, and especially for you school-type people, that you get some time to do things you might not normally get to do during the school year. In keeping with sloth-like state, here's a picture of Sam during the sleep study. Thanks for all the continued prayers!