Last full week at Kennedy Krieger!! And this week was so important because Ryder got his cast off on Monday! I took a pic with my boys and sent them off on Sunday afternoon.
Monday after therapy Ryder called and said “I’m FREE!! Mommy my arm is free!!” He was so excited. Alan sent me this picture a few hours later of him swinging, holding on with both hands.
We face timed later and Ryder was drinking out of a cup, using righty and fisting lefty, I said “what is lefty doing??” and he switched hands and showed me that he could still drink using lefty!
On Wednesday we were invited to speak on a Parent Panel at a Constraint Therapy seminar Kennedy Krieger was hosting at the Occupational Therapy Association’s annual meeting. I worked a half day then headed to Baltimore to get my boys. I wasn’t really sure what to expect, but we walked in the room and there were 4 chairs in the front of the room specifically for me & 3 other moms. There was a room full of therapists and other professionals in the field that had spent the day learning about Constraint Therapy and had lots of questions for us! But first, Ryder saw there was a microphone and walked straight to the front to ask “Can I talk? Can I say something?” His main therapist he has been working with was leading the seminar so she laughed and handed over the microphone. I swear, it was as if this child had planned a speech. I wish I would have had my phone on me to record, but this is pretty much how his completely unplanned, unprepared speech went:
“Hi, My name is Ryder, I’m here to talk to you guys about Constraint Therapy. So when I was a baby I had a stroke that damaged this side of my brain, which affected this side of my body. When I was a baby I never really used my hand so I did constraint therapy to help me get stronger. I did it before at my other therapy but I hated the cast because it was too itchy. At Kennedy Krieger they use a white foam inside their cast, so if you’re going to do it USE THAT! I’ve been here for 3 weeks so far and this is my 4th week and I got my cast off so now I’m working on some two handed activities. Let me show you some things I can do!”
And he went on to do some demonstrations of pinching and pointing – I don’t know what it is about a microphone and an audience of people but that is where he’s most comfortable! After Ryder’s 10 minute ice-breaking speech, the Moms each told our stories and then answered lots of questions. It felt SO good to be an advocate for this type of therapy. It’s really not something you ever hear about, but it WORKS. We’ve seen the results first hand. So I truly hope that our voices helped convince a few people in the room to take it back to their practices. I even gave out my contact info for them to pass on to other parents wanted another parent to talk to if they were considering it for their child.
After that we headed from the Convention Center over to the Arena for the Circus! Another fun adventure, we’re definitely taking full advantage of all this free time together!
That morning Ryder had therapy at the Kennedy Krieger Pool, then with the Conference and then the Circus didn’t start until 7:30pm, our boy was wore out! He made it about 40 minutes into the Circus then finally said “I love the Circus! But…I’m ready to go!” So we bought the DVD and headed back to the room.
I love seeing the bond these two have developed during all this time together. They have all these inside jokes now and funny things they say and laugh about. Another little blessing in all of this…spending one on one time with each kid!
Thursday morning I woke up early and made the drive back to work…a little ridiculous that I can get there earlier from almost 3 hours away, than I can from 10 minutes down the street!
Maisy & I enjoyed our time together as well. One evening we were headed to the grocery store and I saw her walking over to the mud puddle…I decided to just get my camera out instead of yelling at her, I knew it was coming!
This girl loves to cook in the kitchen. I usually try to keep them out of the kitchen while I’m cooking because it makes me nervous, but since it was just me & her I let her help, she felt like such a big girl!
The girl doesn’t like to be away from her Daddy too long though. I found her pouting out of the blue one morning and asked her what was wrong. She said “Oh I just miss my Dad a bit”. Of course that broke my heart, but it was Friday and he was coming home later that day so I knew she’d be alright!
So tomorrow is Ryder’s last day of therapy. I’m anxious to go through his discharge and see what they think about his progress. We can definitely notice a big difference! His arm and hand has so much strength in it now, he can pinch things to pick them up, and we even got to see him get his pointer finger working. We’re still at a point where we have to cue him to use 2 hands but atleast now when he does he’s having more success at doing whatever he was trying to do!
I can’t believe this journey is coming to an end!
2 comments:
WOOHOO Ryder!!! Reading this definitely had me tear up. The strength your little boy shows is AWESOME and I hope he never changes. You and your husband are doing such a great job as parents and doing what you need to do for your son and your daughter. I'm so happy and overjoyed for you all. :-)
I just love how comfortable he was talking about what he's been through. Such an amazing little boy! Praying his strength continues every day <3
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