Update #29

Weekend Update

So... Chase was getting his Astronaut Pants changed and it was messy. So, the conversation went like this:
Me: why don't I just pick him up for a second while you finish?
Nurse: sure.
Me: okay. I will help you once i put him back in bed
Nurse: okay
So, I pick up chase so excited to go over to the rocking chair and rock him. I take two steps...
Nurse: Stop stop stop! Shoot..
My heart is pounding.
Me: what?
Nurse: you pulled out his feeding tube. We forgot to unhook it.

So, after a week of stopping my son from ripping his feeding tube out (including bulking up night staff while i sleep), I do it. The nurses comforted me (I felt terrible) and they said "Everything happens for a reason; he's ready for this next step."

He got a new one in which is a better one because it goes right into his stomach. He had to get cleared for it so he passed the clearance. This feeding tube goes right into his stomach instead of his intestines so he will feel hungry more and more. With his other tube, he never felt hunger. This one is a "step in the right direction" as they told me; this is because it just adds calories as chase continues to eat more on his own.

Everyday he does better with his therapies. I swear that he said "Off" today, talking about his pants. He had just finished physical therapy and we got back to the room- which was boiling hot. He was laying in bed and I was adjusting him. He started to moan then said "off!" I said "you want your pants off?" his eyes got all big and he blinked yes. I then started to take off his pants and he helped me with his kept hand.

The nurses keep saying that he is trying so hard to talk. He is controlling his body better and better each day. He has his "swallow test" Monday which is a monitored x-ray where they watch him swallow food to ensure that he is ready to eat more and more pureed food. They said that he can have anything - as long as it's pureed. Plus, with his jaw injury, they have the same recommendation - so we are on the right track.

Monday, they will hopefully have him up to 3 hrs of therapy a day. Right now he is at 1.5 and doing it like a champ. I'm so proud of him.

Everyone says how handsome and what a hard worker he is. I'm so proud of chase and it brings me joy and relief to see his little personality in there. He laughs at least once a day and flirted with one of his physical therapists. He got all red and giggled (while he stared deeply into her eyes). I brought it up later to tell my sister Maggie and he got noisy. I told him I'd stop and he calmed down... That's chase!!

Tomorrow is a day of rest and that is what he will have and need. The therapists all say that if he gets that one day to rest it makes all the difference for the next week. Kind of re-sets him.

Thank you again for all your prayers and well wishes. Chase continues to amaze us and I can feel such a shift within our family for the better. Chase is such a teacher and I know that I will continually learn from him throughout my life... Cherishing every moment.

Slow and steady,

Jen