We had a nice, uneventful trip to UCLA this week to check in with Dr. Woo (pulmonology). There isn’t much to report as her staff is still working on getting authorization from our insurance to schedule the next sleep study…the process seems to be stalled a bit so I’m praying that paperwork will get moving and we get the sleep study on the calendar soon. I’m not optimistic Rudy will pass the study this time but if we can get it done, Dr. Woo might be more open to proceed with decannulation regardless of the outcome. Being new to his team, she is reluctant to give her consent to wean Rudy off the trach without a successful sleep study putting Rudy at potential risk which we appreciate. But we also don’t want to wait another year to proceed if he’s not dependent on the trach and simply unable to settle down enough to pass the overnight study (which is our suspicion).
While we were on campus, we stopped to check in quickly with Rudy’s surgeon and the staff on duty in the CTICU. We were happy to see Dr. Brian, Dr. Robert, & Nurses Vicky and Kateri but it’s also hard to believe that we’ve been gone so long that many of the faces in the unit Rudy called home for 7 months are new and unfamiliar. We have two more appointments tomorrow with Drs. Kelts (GI) and Corazza (neurology)…both are routine 3 month appts so I don’t expect there will be anything new to report there either.
In the midst of all these appointments with his specialists, Rudy keeps plugging away at school and therapy and we continue to see small but significant steps forward. Rudy was fitted today in therapy for a stander…he wasn’t too excited about it at first but was soon distracted by his fun puzzle and stood upright for a little over 30 minutes. It’s a piece of equipment he’ll use at school and possibly something we can use at home periodically.
We also saw a big step forward in Rudy’s interest in food this week. Back in early November Rudy discovered his tongue and a love for ranch dressing! He was particularly fond of the ranch dressing at The Habit and was happy to demonstrate what a big boy he was to lick some off Daddy’s finger…
On Monday he put food to mouth all by himself for the first time!!! This exciting milestone occurred at Chipotle in Westwood after our appts at UCLA!!! Gee, I wonder what great achievement will happen at tonight’s restaurant of choice? This kitchen remodel seems to be beneficial to Rudy’s oral/food therapy!
The steps forward can seem slow in coming and rather small in the larger scheme of things but we sure don’t take for granted the significance of Rudy licking his lips or tolerating a small taste on the tip of his tongue. It won’t be long and he’ll be eating an In ‘n Out Double Double while STANDING around with a posse of friends! Ha 🙂