Sunday, April 1, 2012

"Look, I got my speed back!" . . .

Tray finally came to bed at 11:05pm, after Teen Night here at the Ronald McDonald House. He bounded in and proudly announced "I got my speed back!"  He then went on to demonstrate this new "speed" in our very small room, running tiny little sprints from the door to the couch and beaming after each one. He was winded, he was panting in bed, he was wound up, but he was so very happy.

He hasn't been allowed to run for over 2 years, now, he feels like he's an Olympic class athlete.  I wanted to take him to the Brooklyn Aquarium today, nope.  He wanted to stay and run with the kids and play laser tag, with a young man who works here, and looks just like Chris Rock.  Tray is by far the oldest and also by far, one of the happiest.

We had a great trip home last week for 36 hours.  We fit in so much.  A visit to his school to get some new work.  A trip to his old elementary school where he was received like a king.  We were a family, if only for a short time.  We celebrated Annette's 22nd birthday with both a family party and by taking her out with Tray for a lovely lunch the day we left.  I cuddled in bed with my baby, Cody.  I folded clothes and the boys watched movies together in their room before bed. . . just like old times.

The trip too and from. . . could have been better.  Could have been worse.  Could have not been at all.  So we're not complaining.  We used the Megabus, and at only $25.00 a seat one way, you couldn't beat the affordability.  What it had for going for good prices, it lost in comfort.  But, again, we were home and we were happy to be there. 

Tray has found his new self.  He has discovered his ability is no longer impaired by a disability.  His heart and body can work as one now and that has been an eye opener for him.  I took him to a gym with the Ronald McDonald House.  He was paired with a wonderful trainer at the gym in the Kid Zone.  I encouraged him to try out the treadmill and he looked at me with complete paralyzing fear on his face and said, "I can't do that, remember how bad I did at the doctors?"  His only time on a treadmill was the dreaded, and highly unsuccessful attempt, at a stress test at the cardiologist's office.  I reassured him this was different and he could go at any pace he felt, as well as stop at the touch of a button.   He tried it and by the end of the day, had spent over an hour, voluntarily, on the once dreaded treadmill.  He also did the eliptical machine, the rowing machine, some free weights and the frozen yogurt bar. . . all very successfully.  That was the day, Trayvon realized his heart was perfect and all he needs to do now, is get his muscles into shape, the rest will be a breeze.  After being told NO RUNNING for over 2 years, he is running, and loving it. 
Tray in his Spartan helmet

We are going home again on Wednesday after his appointment.  We were scheduled for his cath and biopsy for next Wednesday, but there was a cancellation and we were able to get it done on Friday.  That works well, as we'll now just go right from the appointment to the bus station. Peter will return on Easter with Tray for his appointment on Monday.  His cath went very well and his numbers have all imporved, showing that his heart is relaxing finally and settling into it's new home.  The doctors have reassured us, that the pressures would come down, they always do, but until we heard the numbers ourselves, we didn't really believe it.  Tomorrow we'll hear the results of the rejection studies. 

His last week of twice weekly visits is the 20th, and we suspect they'll do another cath before we go on that day.  That will be three weeks from this last one.  Then we'll return home for good.  His current plan is to return weekly for one month, twice monthly for one month and then monthly for another 6 months.  His caths will spread out to every month and then every 2 months as his pressures settle down and as long as he has no rejection issues. 
Awaiting for our yummy Shrimp and Crabs at the Spanish restaurant across the street. 

We have swapped out one set of medical problems for another, BUT, these problems do not impede his quality of life.  He can be free now to run, play, live and love without the oxygen, IV's, and worry of a severely damaged heart.  He will now have to worry about rejection, infection, and eventually, the fact he will need yet another heart. . . but, till then, we're blessed to see this side of the light. 

Do you have "YOUR speed back?!"


  1. I can't tell you how happy I am to read this post. I've been following your Caringbridge site since shortly after you adopted Trayvon. It is SO wonderful to hear how well he is doing. I hope things only get better and better as his heart settles in for a long, healthy life with Tray.

  2. Look at that big grin :) It is so nice to see him looking so healthy. I hope you get some nice quiet time together with your family once you get home.

  3. Oh my Lori!! That's a long time AND you just reminded me. . . I haven't done a Caringbridge update in eons!!! Oh my. Better do that today! LOL

    Thank you both for the lovely comments. He really is doing great. Even the doctors can't believe how good he looks. It was a hard couple of months and then, voila! He was doing great and looking even better.

  4. Thanks for sharing your stories with such faith and humor! Praying for your whole gang!
    Karen Pullano