2/21 - Sam's Journey - Day 71

Sam has made some really big strides this week. We're attributing this to the continued weaning of the methadone and valium. At this point, he's almost completely off of them, and the difference has been amazing. The change of feedings has helped, too, because how much progress can you make when you're yacking up everything you eat, really? His weight is up a little as well, and he's putting a little more meat on his bones. The scabs on his head have mostly gone away, but not enough for him to not pick at them incessantly. It probably shouldn't be a huge concern, but the last thing this kid needs is another health issue.

Other than that, it has been a week of much forward movement. He has been up on the treadmill with PT, and with neuropsych, he was able to show her what a comb was used for. The speech pathologist called Jim because she was super excited that he was able to point at the body points she named. We're still waiting on the voice, but it's definitely coming. This weekend during PT, he went to the gym and I got to see him stand up. I think he may have gone through a growth spurt while he's been hanging out in the bed.  

Last night, on try #3 (because nothing goes smoothly for him,) he finally got to go through the sleep study! If it went well, the trach could be out in a matter of days, or even hours. From what we know, the test went well from the tech's perspective. We're a little shocked that it did since she attached 36 leads to him. He was completely covered in wires, and we were certain that by the end of the night, he'd have them all pulled off. We are waiting to see what the 2 docs officially evaluating it will say. We are very hopeful that this is the end of the trach. The respiratory treatments are a continued cause of consternation. He had been throw up free for several days, and last night the mask was on for a matter of minutes before everything came up. For those of you wondering about the bunny and the snakes on my Facebook page, I have been called Momma Bunny, comparing me to this video: (Some people find it a little creepy, just so you're aware. Or eating.)

Just know it's a bad idea to mess with my babies. That said, from here on out, Sam will no longer be having respiratory treatments. I will break my once a week blog entry rule and let you all know when it comes out. Stay tuned!

Sam has been communicating a lot more, although it can be frustrating. He definitely has the nod down, but he's been using some other hand signals that we just don't understand. Everything he tries to express is like a maddening game of 20 questions. Today Sam gave me a couple of easy ones and a couple of hard ones. One of the easy ones was when the tech came in to check on him. She was bent over him and he started shaking his hand like it was on fire. (That's his gesture that something is urgent.) I asked him a couple of questions that got no response. Then I asked him if she was blocking the TV. She stepped back out of the way, and the hand stopped. Later on, I was eating a salad and he started shaking his hand at me. After several unsuccessful questions, he started pointing at things. Turns out, he wanted me to give him some of my salad. The boy knows what he wants and isn't afraid to let us know.

One last story before I head off to bed...he started putting up different numbers of fingers, as if he was trying to give me his locker combination or something. Eventually, I gave up trying and told him I just didn't understand. He had one more hand gesture for me. (No, not that one.) With great force and determination, he threw up the Hook 'em Horns sign. For my non-Texas people, it's the hand signal for UT Austin. Because it was so out of character for him to do that, I started cracking up. What happened next, I have not seen in months, and it was indescribable. Our boy smiled. 

We are grateful for your support! Keep those prayers coming. Specific requests are:

• that the trach comes out
• that Sam continues to make great progress with his therapies
• that as we prepare for him to come home in the next few weeks, we are able to make the right decisions so that he can continue to have the best care possible, and that we have everything he needs here at home.

In honor of the smile, here's an oldie but a goodie.