John and I busted out of school at noon today to get to his 1:00 physical therapy appointment in Minneapolis. We got there on time and he passed with flying colors today. We were given a few more exercises to continue at home and we were given the clear for 6 months! When we notice John going through a growth spurt we are supposed to hit the stretches extra hard…other than that we are to continue what we have been doing..even if it includes jumping off of couches!
Next we headed downstairs for his blood labs to be drawn. Once again there was a little confusion over what was needed as this is a new study for Children’s. We waited patiently while calls were made and things were straightened out. John and I came armed with his first morning pee (Little did anyone at work know I had pee in my school bag ,tucked away safely in a sealed Ziplock, chilling on an ice pack….It would have frozen in the truck!) and there is always a little confusion with that as well. We come with pee, they want additional pee, John was going to pee his pants while we were waiting for the blood instructions and the lab gal to come back. We needed that cup! All ended well and dry.
By the time the lab commotion was all worked out we were 1/2 hour late for our appointment with Dr. Rawwas. Once again he spent a lot time with us…examining John, talking with him, talking with me. While I was talking with Dr. Rawwas John was on the examining table attempting to tie his shoes and being very vocal about his disgust in the lack of progress he was making. He basically was grumbling to himself the entire time…ticked off.
During this shoe tying trouble I asked Dr. Rawwas about John’s last CT scan of his lungs and that spot. Like Dr. Chu, he is not concerned. On one scan there is nothing to see in that spot and on another scan you see it. He explained that on the one you can see it, is a type of scan where several pictures are “stacked” on top of one another and it may very well be that nothing is actually there. (The angry shoe tying kid, that hears everything …even when you think he’s not listening…threw in a couple of , “Is that bad?” questions during our lung discussion. We both reassured him that it is GOOD! We also talked about scheduling the next set of scans for the last week in January. By the time we were done visiting John had learned to tie his shoes and they were in double knots!
We also discussed the thinning hair issue and a note will be made of it in John’s chart. I decided that I will also call my contact at Helen DeVos Children’s Hospital in Michigan and see what she says.
John and I busted out of the clinic to hit the road to get back to Hastings for Michael’s 5:15 hockey game. We missed the first period, but got to see the rest. The JV Raiders were up 4 to 1 and then lost it all in the 3rd period. John and I headed home after the game and I was able to squeeze in a little of The Sound of Music before he realized what we were watching and turned the Wild on. They won!
It was an action packed day, but a good one. I do feel a little crummy tonight.
Friday marks the end of Cycle 4 and Saturday is the first day of Cycle 5. 4 down…..20 more to go!
Love, Hope & Blessings,