09/24/2026
It's felt like a long and especially exhausting few weeks, and so I've neglected to post any updates. I've been with Sam during the week then running back to NC for 48 hours on the weekend to see our kids. I'm tired. Thankfully, my family has been stepping in all along to make this possible for me to lay eyes on things at home. We're also so grateful his sister is coming this weekend while I run home again.
These are the only two pictures I've taken in the last few weeks: eating and walking.
- After 4 long months and an intense amount of work, Sam was cleared to eat "real food" last week (thus the Chick Fil A!). Meals are more exciting and have more variety, but we eat in silence so as not to make him laugh and then choke.
- Regular liquids are still a challenge, so most of what he drinks is thickened.
- After not using his feeding tube for weeks, they finally removed it yesterday. No more tubes of any kind.
- He will be transferred to Shepherd's Pathway program next week, which is their outpatient therapy program. This means that he and I will get moved into the family apartments that are across the parking lot from the Shepherd Center and he'll go to therapy at their off campus location 5 days a week.
- To prepare, we've worked alot on transferring him from one seat to another, helping him stand to get a toilet under him, stand supported to get in the car, etc. He's bearing much of the weight, so it's doable, which is exciting, but I'm expecting this to get easier as he gets stronger.
As we go to Pathways, it means I'm responsible for him 24/7, unless someone else can take over for me. Not impossible, but it does require helping with bathroom needs and being able to do transfers from one seat to another. Having someone able to provide me respite to run home will make the difference of whether we'll be able to last as long as needed down here.
I'm weary of it all...if you could continue to keep us in your prayers as we continue traveling this road.