Well our first full week at Kennedy Krieger has ended so before week 2 begins I wanted to document how everything has been going!
My last blog post ended with our overly emotional weekend. Ryder started Monday morning off with more of the same, anxiety about the day, not willing to try anything, and definitely not looking forward to the week ahead. He reluctantly went back with his therapist, and I set up my temporary workspace (plugged my laptop into the hospital hallway outlet!), texted/emailed with my circle, and I think we all collectively prayed for a turn around. About an hour into therapy, Ryder came running down the hall with a newfound pep in his step! He was so excited to show me a doggy puppet he had made. My eyes welled up with happy tears as he walked away, and I thanked God for that small victory. A few minutes later, he came walking back down the hall toward me, even happier than before. This time carrying a pale with a froggy in it. The froggy had a cast on righty and tape on lefty, Ryder was thrilled that he had this new friend who was just like him and the therapist had told him he could take the frog to and from the Ronald McDonald house with him. That was the turning point. He was so excited to have this new little friend, it completely changed his attitude.
His dog puppet that he named Beasley
Posing with “Mr. Too Loud Ribbit Frog” (yes that’s what he named him)
We got back to the Ronald McDonald house that day and he was so excited to have mail for the first time! Each day for the rest of the week he had something in his mailbox waiting for him, I am so so thankful that people care enough to send something to cheer him up. I can’t even tell you how much it has helped! We also got a surprise visit from Paw-Paw, that was such a nice mid-week surprise!
With his mail slip that shows up in his cubby when he has a package!
Running down the side walk to see Paw-Paw!
The rest of the week he really was super motivated, worked so hard in therapy, and showed major improvements with using Lefty! The therapists put a weight in the bottom of the pale the froggy lives in, so carrying that around has helped build some strength. He has been playing waiter by carrying food to the nurses on a tray which puts his hand and arm in a position it has never been in before, so we’re noticing some huge improvements in his range of motion. And they’ve been working on him recognizing his individual fingers, like asking him to do things specifically with his thumb, index, middle, ring, and pinky so we’ve noticed major improvements in his pincer grasp. The two most difficult things for him to do right now are turn his hand completely over, and use his index finger for anything. One thing he really enjoyed was visiting with Lewis the therapy dog!
We are thoroughly enjoying staying at the Ronald McDonald house, a post about that to come! But it has definitely been a huge blessing to us and such a positive environment for Ryder to be in. He feels very comfortable there and has settled into his new routine. We wake up and get ready, have breakfast, catch the shuttle to therapy, we both work hard! Catch the shuttle back to the house, heat up lunch or go out for something, come back and play until dinner time, then activity hour, then get ready for bed! Feels like with all that action the days would fly by, but they definitely do not.
Shuttle Selfy!
My workspace!
The thing we weren’t really prepared for was how emotionally hard it would be to have our family separated! We face timed every night, but it was just sad to not be together. Poor Maisy, she had no clue what was going on and was super confused. She kept saying “Just come home now! Brother I thought you were my best friend!!!” She is definitely traumatized, now this weekend any time we talked about going anywhere she would say “Don’t leave me, I’m going to miss you soooo much!”
Friday when therapy was over, we couldn’t get home fast enough! We were so happy to be back together! And here it is Sunday and it’s Daddy’s week in Baltimore with Ryder. This week will present its own challenges, it will be extremely hard to not be there with Ryder, but I know Maisy needs me too and I’ll be able to work this week.
Homebound!
His weekend homework!
Ryder turns 5 on Wednesday so Maisy & I will be heading there to surprise him and spend the day with him, can’t wait!! My prayer for this week is that Ryder gains use of his individual fingers, that he keeps a positive attitude and stays motivated to work hard, and that Maisy doesn’t take all of these crazy transitions too hard.
Here’s to another successful week!
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