Man oh man...I've never been so thankful for the lack of smoke in the air than right now. I remember how bad it got when we were in the hospital almost a year ago...it was terrible. When you have a kiddo on a vent, you think about smoke differently. Our summer has been spent trying to get out and doing more routine things. We've made it an unofficial thing to go out Tuesday evenings to hit up our local Farmer's Market. There's generally live music and Harrison likes to listen and see all of the sights. He's kind of subtle from outward appearances but the lack of protest crying is generally a good sign haha. We've also gone to the Tacoma Rainiers AAA baseball club two times now! They've both been very fun and he's lasted longer than most kids his age. Generally he signals that he's ready to head back home around the 7th inning stretch which I think is just fine haha. This last time he actually got a foul ball from a game attendant which was super sweet. We put his hand on it and he kept trying to move the ball closer to his body and we couldn't help but here his voice in our heads saying "That's MY baseball guys!" haha. Last weekend, we had the opportunity to attend a Make A Wish for another special needs family up at a cute, historic movie theater in Edmonds...Harrison enjoyed seeing the special video clip from Sesame Street that was made for his friend! This weekend, we're going to try some day camping while I'm out with some friends for a couple nights. MariClaire and the gang (including his Day Nurse) will be driving down to visit my site and spending the day with me and we walk, visit the lake, cook lunch, and try sticky marshmallows! :)
Harrison is continuing to show us how strong he is. He's doing weekly PT/OT up at SCH Federal Way and man is he starting to reap the benefits. With supportive hands helping stabilize his body, he actually held his head up under his own strength for almost 5-minutes! That is more than we could have ever hoped for and shows how resilient he is and how much healing his body has done in the year since his injury. We were discussing quadriplegia and whether slight movements were considered reflexive or volitional. Now he's stretching his whole body after a good sleep (and freaking out whoever's on duty haha!), disconnecting his circuit with his arm from time to time, and grinning from ear to ear when he moves his legs after you've moved them for a very specific reason (e.g., position change, diaper, clothes, etc.). His personality is back and he's thriving right now. The latest weight on him was 36lbs and we're in awe. This is the kid who was literally skin and bones a year ago and now he has a little belly haha!
Our biggest piece of news and the "adventure" part of the headline is that we are going to be doing a roadtrip in Early August down to Southern California for an experimental stem cell injection. We're paying this out of pocket but have some science behind our decision making on how it might improve his healing from the spinal cord injury and potentially even helping his brain develop more helping to counter the effects from his genetic syndrome. We are cautiously optimistic but excited by the prospect that he could see any improvement...even slight. We're willing to do whatever we can to give him the best shot at life. Hopefully we'll have some good news to report on that front as we go into the school year (he's going to be in Kindergarten!!!!). Our amazing friends Christina and Kevin Kindt are organizing the second annual garage sale to help with our out of pockets costs. Last summer they organized one that helped purchase giftcards that we could use for meals at the Seattle Children's cafeteria.
We will also be hosting a garage sale on Saturday, 7/31 and Sunday, 8/1 and proceeds will be used to help fund the $10k injection cost along with the travel expenses. We'd love to see you there if you enjoy that kind of thing! Our address is 4635 South J Street, Tacoma WA 98408. :) You can also donate via our Gofundme fundraiser if you felt so inclined:
Well, that's the biggest news on the Harrison front. Until next time everyone!
-Jonathan
Such a fantastic update after your harrowing last year!
Can you use donations of items to sell at the garage sale?
Love seeing Harrison THRIVE! You are such fantastic parents and advocates for him. Best of luck on the road trip and stem cell endeavorer!
I just love the updates. You are educating me through your sharing. Your research and knowledge are amazing! Harrison is so blessed to have you for parents.
What a gift to have wonderful friends who are helping you reach a financial goal. Thank you for sharing your journey with me.
Jane Carden