2/28 - Sam's Journey - Day 78

I apologize for what will probably be a very short post, at least in comparison to my previous weekly messages. I have to get myself back down there and there's a lot to do before then. I didn't want to let a week go by without updating you on what has been happening. 

Sam has had another fantastic week, although this probably shocks no one who knows him. He's been rocking all of his therapies and everyone is thrilled with his progress. He continues to improve physically and is starting to pull himself up to standing. The left side is still sluggish, but it is moving more each day. With Neuropsych, he was able to correctly able to identify the month and year, so he's way ahead of me on most days. He has more breakthroughs every day, and we are so excited about each new sign of Sam emerging. He has exactly one month until his currently scheduled discharge date, so there is no telling how far he will go in that time. The sky's the limit, really, and there's no stopping him!

As for the trach...I wish I had fantastic news for you and could tell you we have a date for it to come out. Sadly, Sam's stuck in a sea of red tape which has absolutely nothing to do with the fact that getting it out is the best thing for him. It seems like since this whole thing started, he has been the unfortunate recipient of weird, glitchy foolishness. Is he a kid or an adult? Is it his brain flap or someone else's? Can we get the computers to talk to each other on the 3rd try of the sleep study? It's getting a little absurd, and we haven't even dealt with all of the billing issues yet.

It's getting really irritating, and this kid does not deserve being treated like that. The people with the most pull are now working on resolving this situation, so we are certainly hoping that by week's end, we will no longer have to see the trach ever again, except as it gets smaller in the rear view mirror as we speed away, tires screeching.

This week's prayer request (in addition to one that he continues to progress well) is that this situation is resolved quickly, and that he is decannulated by the end of the week. Thanks so much!!!

Also this week, Sam made a new friend. His name is Simon and he is just the cutest little thing! Clearly by the pic below, he and Sam get along really well.  Have a great week!