Wednesday, May 14

Waiting Confirmation

At this point we are still waiting for final confirmation and timing of when we will be heading to Magee.  If there is anything we have learned from this entire experience is to take things one day, one hour at a time and be willing to accept and adapt to any and all changes.

Jackie ended up not having a very restful night.  The most solid sleep he had was an hour and a half.  The rest of the night was just short cat naps.  Our docs stopped by and they thought everything looked good.  We talked about follow up visits and details in reference to Jackie’s shunt.  Jim and I continue to learn more about TBI every day.

OT/PT picked up Jackie early and we headed to the gym.  When we arrived there were not many patients there so it was more quiet than  it was yesterday. Several therapists worked with Jackie again to make him stand up. This time he was positioned behind a piece of equipment that looked like a large walker on steroids.  Jackie stood up behind it and it was elevated to match his height.  Once again with the help of several therapists  he took some steps – PTL!  Next up was the table.  They laid Jackie face down and made him hold up his neck by leaning on his elbows. Then he sat, assisted, on the side of the table until he was ready to get back in the wheelchair. As you could imagine he was exhausted so we put him back in bed and he took a nap.

We also had ST and focused on speaking since eating is going well on the puréed diet.  Ellen worked with Jackie on mouth movements.  She also had me sing to him in hopes he would join in with the simple words of the song, he didn’t. Then she had him mouth the words one through five and also count them out on his fingers.  He seems to be forming the words correctly, but no sound is coming out yet.  She also had him just try to say Ahhhh – and there it was a very clear Ahhhh sound spoken by Jackie.  It was music to my ears.  We were all so happy!

The rest of the day included some visits from Jefferson staffers that wanted to wish us well before heading off to Magee.  We also were fortunate to have Kristen as our nurse today.  She helped us get prepared for the move to Magee and also is tons of fun.  Jackie really enjoys her company.

Near the end of the day Jackie became very restless and as it is now very early on Thursday morning he did not sleep well once again.  Each day we are becoming more aware of the fact that TBI recovery is one that requires much patience, love and time.  We will get through this side by side with Jackie!

I know I say this all the time, but please appreciate the simple things like sitting up unassisted and saying hello.  Make the most out of every precious day and have fun where and whenever possible.

Thanks for all the love and support.