(L) We have been home for 4 weeks + 3 days and what a 4 weeks + 3 days it has been! Lots of tears (mostly happy), smiles, laundry, organizing, snuggles, and very little sleep for mom & dad 😁. We hope to get back into a regular cadence of posting updates. Home life has been an adjustment for sure, but an adjustment we feel so incredibly blessed to experience. Some highlights:
- Daily gratitude to God for all He has done for our family and continues to do. The greatness of what He has done is almost too much to articulate, but I know it will be a beautiful testament one day.
- Daily gratitude for our donor, donor’s family, and the teams in STL. We wouldn’t be here without these people.
- Woodson LOVES getting uninterrupted sleep at home
- He is still a super smiley and happy guy, still growls but his voice gets stronger every day, loves to babble, has become ticklish, and will giggle
- He loves to clap & chewing on hands continues to be his favorite
- He has 4 teeth with 2 more just about to cut through
- We have started “messy play” where we put him in his high chair with purée on his tray for him to splash in and get tastes of food. It’s all about him making positive associations for hand to mouth and you don’t just get gross medicine. Food can be yummy!
- Big sister still loves him more than anyone and gets very sad if he’s still sleeping when he has to leave for school. She can make him smile quicker than anyone and she is always asking how she can help.
- 3 trips to STL since we have been home + lots of appointments in Springfield
- Has been to both grandparents’ houses, met all of his living great grandparents, met a couple of our close friends, and was able to meet his some extended family (MANY more still to go 🤪)
- Woodson’s biopsies, scans, lab tests, and evaluations continue to be so positive! The team in STL says he is thriving at home & we agree! He is such a joy to be around and has made so many leaps in our month home.
- Evaluations here and in STL for therapy treatment plans - speech, OT, PT. Woodson will be 9 months next week and his estimated physical capabilities are similar to that of a 4-5 month old. We are working really hard on building up core strength to sit up, as it is a major building block to many other milestones
- He is LONG - 95th percentile for height and 19th percentile for weight
- On the subject of weight, he continues to throw up multiple times per day and it has impacted his weight gain. We are working very closely with the teams in STL to adjust his feeds and getting weight checks multiple times per week at our pediatrician’s office (we have the best pediatrician in the world ❤️)
- A health scare with one of our family members, our washing machine broke & had to be replaced (the new one is huge and it’s awesome), I was down for 2+ weeks with pneumonia, my car is heading back to the body shop because people/objects seem to want to hit it lately 🫠, evicted some critters that decided to move in to our house over these past months, and a few more adventures that Dusty and I just laugh about.
- Life outside of the hospital continues to be an adjustment for Dusty and I. We are so thankful for the resources provided to us through the Heart Center to support our well-being. One day I hope to share more about our journey and somehow provide help to families going through long term hospitalization with a medically complex child.
