what a difference a week makes!

One week ago tonight we were preparing for Isaac’s trip to the PICU at Children’s National Medical Center. We spent a night feeling pretty defeated, and sad for our amazing boy. However, once again Isaac has brightened our days and quickly turned our thoughts around.
He had a wonderful week, once we got Isaac settled on Saturday we took him to the Herndon Festival – he rode a ton of rides, and played lots of games – we all felt much better at the end of the night! Monday night was exhibition night at Isaac’s gym, he was so very proud to show off his tricks. Isaac wore his speaking valve all week, giving us a little bit more faith in his ability to someday wear a cap.
I was still feeling pretty bitter after the debacle that was Isaac’s last PICU stay, so I hadn’t contacted them about a follow up appointment or capping trial. They realized they hadn’t heard from us today and called to set up a clinic appointment next week….. coincidentally today his special, colorful caps arrived in the mail. Daddy put one on Isaac, and lo and behold he didn’t panic!
Isaac wore his cap for a few minutes, he got angry with us, so we took it off – this has to be a positive experience for him now. A few minutes later he tiptoed over to his bag o’ caps and put one on himself!! He didn’t wear it for more than a minute, but what an amazing sight that was! The key here is to let Isaac be in charge – he doesn’t get too much say in too many things, and he deserves this.
Of course all of this excitement occurred as we were packing and prepping him for tonight’s trip to Minnesota! Isaac has an OR date with Dr. Hess tomorrow morning to dilate that esophagus. Once again, he is showing no signs of needing a dilation, so we’re hopeful that maybe that esophagus is in good shape 🙂 The plan was for Isaac to stay until Sunday for a play day with his girlfriend – Ireland. As it typically goes – Ireland decided to take it old school, and was admitted to the PICU today. There is some concern about bowel obstruction – so please keep her in your thoughts!
Looking forward to more capping in the days to come 🙂

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