No News is Good News!

It has been wwwwaaaaaayyyyyyy too long since we posted and I’m sorry about that. You know what they say…no news is good news. Harrison has continued to grow and has been stable…no crazy ER visits for G/J tube replacements or any procedures/hospitalizations. We’ve been very blessed. So let’s do a little recap of the past few months:

Thanksgiving

We had family over for Thanksgiving and it was lovely. Some family that we lost touch with came back into the fold and it was so amazing to celebrate together for the first time in a long time. We roasted a beautiful turkey and made all of the side dishes. We spent Black Friday doing our annual tradition of cutting down a live Christmas Tree with some dear friends and Harrison got to go and experience the sap firsthand. haha

Christmas

This holiday was a little harder but still wonderful in it’s own way. We were experiencing the frightening surge in the Omicron variant and were burning through so many self-tests at the slightest hint of a symptom/sign. While the pandemic risks continue to decline as it evolves into a more contagious, less serious variant, it still is something that we fear in our household. There’s a lot of unknowns with Harrison and his susceptibility now that he’s on a ventilator so we’re just erring on the side of caution I think from here on out. We had some tough conversations with family about the vaccine and had to find a middle ground for their freedom and our safety as a household. These conversations are always hard and it really takes a lot of extra effort to make sure feelings aren’t hurt. Gift giving was staggered over a few days and MC and I finally got to exchange gifts to each other in early Feb. It was just very chaotic dealing with so many spinning plates and that got put on the back burner. The kids enjoyed opening presents on Christmas though. Harrison’s favorite gift was probably his Mr. Rogers picture and we have it hanging in his room where he can see it from his bed. :)

Winter

Settling into post-holidays was challenging. We had Hattie’s first birthday party that was a little delayed in addition to lots of projects/volunteer/work related things to sort. MariClaire tried to go to the annual World AHDS Symposium in California but it was cancelled (again). Harrison transitioned his genetics care from Mary Bridge to Kaiser after his doc switched organizations…thankfully we can still see her which is something we’re very grateful for. He is stable on his thyroid levels and the experimental Emcitate/Triac medication is doing its job and helping keep his syndrome from causing further damage to his body. A lot of focus has been on finishing up with his latest round of PT/OT (burst model where you go frequently for a while and then take a break). Speech is diving into making use of his Tobii eye gaze computer which is very exciting. We are also receiving in-home school from the district and he gets a tutor who comes to the house twice a week in addition to his IEP therapies (PT/OT/Speech) who are working in tandem with his therapists from Seattle Children’s.

He is needing less help with motility and is starting to go show us signs that he might be ready to use the potty by himself which is amazing…we really attribute that to all of the progress he’s made in PT and the stem cells which seemed to have helped him recover partially from his spinal cord injury and in some of his developmental delay from his syndrome. We hope to do another round of fundraising later this summer to go back to the LA area for a follow up treatment. He is growing like a weed and actually got a new wheelchair and stander from insurance which fits him so much better. It’s such a profound feeling watching him continue to thrive and grow when we came so close to losing him.

Harrison & Hattie

It’s been beautiful to see the relationship grow between Harrison and Hattie. As she’s grown (she’s 18-months now) and is starting to navigate her world, she’s very excited to visit Harrison and tickle his toes. She loves to watch his cartoons in his bed with him and will even hold his hand for brief spurts before getting too curious about anything and everything haha. She has emulated his vocalizations which really makes him grin and I swear they have a language between them. He smile’s wide when I ask him if he wants his sissy to come in and enjoys going on walks around the neighborhood with his people. I love that Hattie knows this to be normal and I have a lot of faith/hope that she will be his and other people’s fiercest advocates when it comes to inclusion and accommodations.

Hopes for Summer

We are trying to get more active as a family and are trying to incorporate more walks at Pt. Defiance’s 5-Mile Drive now that it's closed off to vehicular traffic - the weekends are always super busy with bikes so it's nice to have access to off peak days. It’s good for Harrison to get out in nature and look at the trees/birds as we walk through the old growth. We did get to take him to the nature preserve down in Nisqually and that was pretty neat with the accessible boardwalk.

We've been working hard on our yard to make it Harrison-friendly and actually got two ramps installed providing access to the back yard for Harrison. We picked up a special needs swing from another family and we want him to experience playing in the yard with his sister. :) I spent the Spring working on replacing our deck that was pretty rotten in places and so much safer/easier for Harrison to get to the pool for some swim therapy in the near future. We have an extra shower chair and are hoping to modify it to give him good support but still enjoy the sensory experience with the family.

After countless postponements due to weather and illness, we're finally able to do our big garage sale fundraiser this weekend! It's going to be Friday, 7/15 through Sunday, 7/17 from 8am-6pm. We'll take Venmo and PayPal for you non-cash people. :) Our community has been so generous and we've gotten donations from about 30 families for things to sell. Feel free to drop by and visit...who knows...you might end up finding something amazing that you need! Our address is 4635 South J Street Tacoma WA 98408.

Well that’s it for now. Until next time everyone. We love you and thank you for the continued support/prayers.

-Jonathan