David has had another day with not a lot of changes. These are good days. He was super excited to have the nurse who has cared for him the most back today, and gave her a few of his rare smiles. The plan for today was the same as yesterday – RAM during the day and SCUBA at night. We also learned that RAM is just the name of the nasal cannula. He is on BiPAP on both RAM and SCUBA, so RAM vs SCUBA just identifies which device is being used to deliver the BiPAP.
This morning, David received some special visitors – some minions and a state trooper. He was so excited to have his picture taken with them to show his siblings. They left some gift bags for the siblings and the older kids are loving them. It contained a little thing that holds a travel tissue, a chapstick, and a hand sanitizer, but we’ll be lucky if all those items last the weekend. The kids are super eager to use everything all the time.
David got a lot of good cuddle time in today as well. Not every nurse prioritizes cuddle time, but we definitely appreciate the ones that do. Adam went first today and then I got to hold David immediately afterwards. We can’t tell if he likes his cuddles or not at this point. After cuddle time, it was time for OT. He was not super thrilled, but handled himself pretty well. OT loves showing him how to touch his face, and he’s getting pretty good at that – almost too good.
Eli and Anna came for a visit this afternoon. Coming to the hospital daily seems to be starting to wear on Eli, so we’ll see how we handle it going forward, or maybe he just doesn’t know what he wants (which often seems to be the case). They returned to the Endzone after dinner to do a craft – they made some pretty eggs to hang up and painted some wooden ones.
Anna and Eli’s eggs are beautiful! I love seeing that octopus clenched in David’s little hand, he sure has a very good friend in that octopus 💕 My prayers are for quiet, easy days to continue.
David looks very content in these photos, with his surprise guests and both parents too! Happy Easter to you all ❤️ Eli and Anna’s stained glass eggs will look great in sunny windows like the ones we have today 😊 Prayers for more healing and growing and peace.
Thank you God for your continued blessings upon young David and his family. It is wonderful to see David in the arms of his Mommy and Daddy. Eli and Anna are so creative and beautiful ❤️❤️ And special blessings upon David’s care team and all of his special friends 🙏🏻 David, you are a very special child of God and have made a huge impact on countless people….
Easter Blessings to the Tilly family 🙏🏻
Happy Easter Tillys!!! Hope the Easter bunny comes. 🐰 Beautiful eggs kids! What did Eli do? Looks like he has a black eye. Anyway things seem to going well. Hope it continues. Love and hugs and kisses
Happy Easter! We honestly don’t know what happened to Eli’s eye. I just know he had it when I saw him on Saturday afternoon and it could have been from a fall at skating lessons or he ran into some playground equipment after that. Daycare seems to think he did something there, but we never noticed it until a Saturday.