Hi everyone - Jodi back again. I so appreciated Brian writing the long overdue blog message. He has such an amazing gift with words and writing. He captured so clearly, in one blog, a picture of our family these days and where my heart is also. I get so caught up in the day to day details of our family that I truly appreciate his ability to step back and pull the big picture together for me.
Our "new normal" continued this week with a two day trip to Cincy for photopheresis treatments, but for the first time since we began these regular trips, I felt something very different and very freeing. I felt like the Cincinnati trip was just another thing in our schedule this week. For so many years now these trips and JT's medical care have seemed to me to dominate our lives. After reading Brian's blog I was freed up to accept that this is just how our "new normal" looks. Usually I'm completely exhausted upon returning from a Cincy trip, but tonight after our 5 hour drive home, I headed up to the gym and ran 7 miles on the treadmill. Yeah!!!
Well, enough about my mental health....JT's two photopheresis treatments went well. There was a minor hiccup in scheduling our first day, which played itself out by JT needing to get accessed twice in one day. He's such a trooper and never complained once about it. He is so mature for his years when it comes to medical stuff. We are still waiting for the new photo machine to be up and running. I found out this trip that the hold up has more to do with a staffing shortage than with the machine not being ready. Hopefully this will be resolved in the next few months and we can move ahead with the new machine and see if it makes a difference in JT's treatment frequency. For now we're on the every other week plan indefinitely.
Highlights of our past two weeks include JT swimming the full length of the swimming pool at the YMCA without his bubble. His swim instructor planned on letting him swim half way across the pool, but when JT got there he just kept on kicking and she just let him go and lo and behold - he made it. Everyone in the pool area erupted in cheers when he touched the edge. JT grinned from ear to ear. It was a very proud moment for him, and for me.
Next is the most awesome thing we've ever done in our lives (words of JT and Justy)...we finally were able to go to one of their cousin's birthday parties. For many years now we've missed out on family celebrations with my brother's family due to exposure risks for JT. Not this time. The docs said that if JT is in Kindergarten and doing well, then he should be able to go to a party. We helped celebrate Max's 5th birthday at a place called, "Pump it Up". It was so neat. Four huge bounce around blow ups in one huge air conditioned room open only to the 20 or so kids invited to the party. JT and Justy were in heaven. After the several years of telling JT and Justy they can't go celebrate their cousin's birthdays with them this was sweet, sweet, sweet. JT and Justy talk about Dean, Cole and Max all the time. I love that they are getting to spend more time together these days.
Well, it's getting a little late. I'm off to bed. Thanks for checking in on us. We're so grateful for all the love and support that continues to bless our lives.