sleeping in

More like sleeping in his chair!! Today was the first day in his chair and he had the best heart rate in the last three days while in his chair :)

He was so comfy he slept in his chair, well that's really not totally true......as I've only seen his eye balls for maybe 2 hrs today. He's just wiped out! Not sure if he needs the day to recoup from all that's been going on or if he is reaping the benefits of the baclofen catheter being up so high and now he's more sedated. I've requested that rehab consult in this matter but seeing it's almost 7pm on a Friday something tells me we are NOT going to hear from them any time soon. We'll see what tomorrow brings for his alertness. Danny did sit in his chair for almost 2 hours before we took him out. Once again a ROCK STAR! It didn't bother him at all, it's so nice to see him back UP in his chair. Another step closer to home :) We have his chair almost sitting straight up....he's NEVER sat straight up in his chair it's ALWAYS needed to be reclined. Boy will this be nice as he's not so long anymore we won't be taking out as much wood work n walls, LOL
He even slept through his dressing change. And he HATES tape....he gets upset when you take of a band aid, BUT he'll sleep through a shot. I know weird! Well here's the wounds. Not bad at all!! As you can see he still reacts to the "special" wound dressing that he's NOT allergic to.

Here's the orthopedic surgeon that has worked his magic with Lil Man's back.....Thanks Dr Tassone :)

And this is Danny's Palliative Care Doc ~ Dr John he helps Danny tremendously in managing/coaching "the team" to make sure they all play nice and he makes sure that Danny is as comfortable as possible :)

Thanks Docs for helping to give Danny the best quality of life, you are greatly appreciated!

I talked with Avrianna and she had a BLAST at camp. This was her first camp that she's attended and from the sounds of it ..... it definitely won't be the last. I'm hoping Dan & Avrianna will be coming to visit this weekend sometime so I can get all the details of her fun filled week. I'm so glad she had a wonderful time!