The Marathon Continues

We've slowed down on posting, but all is well and we are hanging in! We have been home from the hospital for a week as of yesterday evening and Otis is just a little over a week and a half post-op. We loaded him into the van Thursday morning to take him to the outpatient clinic for his first post-op orthopedic visit where we gained some experience--thankfully with much assistance from nurses and radiology techs--transferring Otis without the use of Hoyer or ceiling lift, first on and off of the x-ray table and then on and off of the exam bed. I don't think I've mentioned this yet, but Otis is now over five feet tall and weighs just a little over one hundred pounds, so the lift is definitely our preference these days, especially now that Otis is not able to assist by standing and bearing his own weight as he usually does. 

The ortho visit went really well. The outer gauze was removed, leaving just the steri-strips and dissolvable sutures underneath, and the incisions have healed nicely. X-rays showed that the hardware is still where it should be, and the PA showed us many of the images that were taken throughout the 5-hour procedure  (skip to 1:50 for a great illustration of the procedure) to give us a better understanding of the process, including how the bone grafts were taken and used to reshape the heads of both femurs, as well as the socket (acetabulum) of his right hip. While pre-surgery both hips (especially the right) were at high risk for dislocating, they are now fitting snugly into their sockets as they should be. We will take Otis back to the clinic for his next follow-up in four weeks, at which time we'll learn when and how we can begin to ease up on some of the restrictions on his mobility. While it will be a relief to give him breaks from the immobilizers and allow him to begin to explore some movement without them, we also have some anxiety about how his seizure activity without the immobilizers might cause added pain and inflammation as his bones and muscles and connective tissue continue to heal. We are very lucky to have such an incredible orthopedic team working with Otis and guiding us through all of this--his surgeon and all of the PAs and nurses on the team have just been so wonderful to work with. We are grateful for not only their skill, but for their unending kindness and patience as well. 

Before surgery, October 2023

Post-op, 12/21/23

Otis has lost the pep he was showing in those first few days after surgery, but is still doing incredibly well--so much better than we had anticipated. We are doing our best to keep him and the mood in his room as active and lively as possible during during the day to help differentiate between day and night, but it's been a challenge fending off sleepiness and boredom--especially for a kid who is bedbound and receiving regular doses of Valium. The Valium has been doing its job to keep muscle spasms and bigger seizures at bay and although we have seen an increase in the intensity of his tonic seizures over the past few days, we have thankfully yet to see any of his big convulsive (tonic-clonic) seizures so far. Pain still continues to be pretty well controlled, as we continue to alternate Tylenol, Ibuprofen, and Valium and reposition him from one side to his back to the other side every two hours. This round-the-clock medication and repositioning schedule sort of feels like (what we can remember of it, anyway) being back in the fog of those early days and weeks of having a newborn at home. 

Catching another al fresco lunch
while the warmer weather holds.

The current setup, with all the things...

Ryan submitting grades while Otis sleeps.
(A teacher's work is truly never done...even when on "break.")

Freaking amazing, this kid. 

We are also incredibly grateful for our wonderful community of friends, family, coworkers and O's school and homecare staff who continue to lift us up and hold us with so much love and kindness throughout all of this. We are thankful for the meals and the treats and the visits and the offers of help (which we are learning to be better at accepting!) and each and every prayer and note of encouragement we receive. It is this love and connection that continues to keep us afloat as we make our way through this. 

Merry Christmas, everyone! xoxo