After a bit of a break, we are back in the swing of things for Harrison's PT and OT. We were almost able to get Speech squared away but we had to reschedule his intake appointment and the next available time is sometime in June. We are doing at least one therapy a week at the Federal Way location and they are amazing. Both the PT (Evan) and OT (Izz) are perfect for him and have bonded with him quickly. They are pushing him hard and we're excited to see growth. With their encouragement we're seeing Harrison starting to demonstrate volitional movement in his hands and legs. They are able to put a toy in front of him and see his fingers flinch towards it. It small and easy to miss but it shows us big things...He also was at the dinner table in his chair the other night and brought his hands to his face and started licking his fingers for a few seconds. it shows that the damage we were so fearful of is healing. The idea that he has paralysis is less of a likelihood and we're shifting gears with his rehab to focus on building strength/muscle on the hopes that he will continue growing in his abilities as he heals. There is a lot of faith in these little micromovements but they mean so much more to us and we're grateful and excited.
Ventilator wise, nothing much has changed since the last update. Although we did experience an accidental decannulation (whoops) and he was able to maintain 95% O2 while breathing through his stoma on his own for a minute while we got sorted. That is super encouraging and takes a lot of the fear out of caring for Harrison. We still have to be vigilant as mucus plugs and weakness are still factors for him but on a whole we can rest assured that he can survive long enough for his people to figure out how to troubleshoot whatever situation he's in. :)
Our nurses have stabilized after a period of some continued turnover on our weekends. We have 3 nurses working with us and they are all amazing in their own ways. They are compatible with our personalities and have all bonded with Harrison. It's neat to see and we're very blessed as this isn't a common situation for folks needing in-home nursing.
Harrison is super into Clifford the Big Red Dog, Curious George, and Little Baby Bum. He watches a lot of TV being stuck in bed as much as he is but he certainly isn't complaining haha. We get him out of bed every evening and into his chair to hangout with the family during dinner. He really likes this and will often go 1-3 hours before telling us he's' done and wants to go back in bed to rest. He recently started showing us that he likes to watch American Idol and will actually start vocalizing when the contestants sing. Now we've made it a routine to sit around as a family Sunday nights and watch American Idol together with his cuff down some to let him sing his heart way. It's different than what most non-medial folks would imagine but it's still music to our ears. :)
We're starting to take more walks around the neighborhood as a family when we have a combination of good weather and limited wind. It creates a nice opportunity for Harrison to have an HME break to work on strengthening his lungs while also being distracted by the sounds of nature and the world. I'm sure we look quite the sight with Harrison's wheelchair (chair, IV pole for feeds, oxygen tank) stroller, nurse in scrubs, and one of us (MC or me) wearing the trach go bag.
Finally, Hattie is continuing to grow by leaps and bounds. She's so strong and brings us a lot of joy when she's not screaming for her bottle or fighting sleep haha. She just passed 3 months and is holding her head up with ease and is babbling so much. It's neat to see how fast she's developing and I can't wait to see that bond between her and Harrison grow.
Thanks all! We love you!
So awesome to hear🥰