So sorry for the 2 days in one update but things slow down a whole lot here on Sundays so there wasn’t a whole lot of exciting things to talk about yesterday so I figured I’d lump two days in to one blog. 😬
Sunday is Everett’s “rest day” from therapy which meant that he got to sleep in a little bit. I mean he was up several times overnight so i guess I use the term “sleeping in” very loosely but you get my drift. I’m really hoping that as time goes on and we get further and further away from surgery, that we are able to re-establish some sort of routine with mister man. We spent most of Sunday just hanging out in Everett’s room, watching Sesame Street and reading books. The highlight of the day however was when we found out that we can sign Everett out of the unit and take him for walks around the hospital building and out into the gardens in front of the buildings. I told him it was like going on a hospital field trip! For those of you who personally know Everett, you know just how much he loves to go for walks and be outside. I was so excited to be able to give him a little bit of a change of scenery, and even though we couldn’t quite figure how to actually get outside to the gardens, I think Everett really enjoyed the bright colors and fun designs of the hospital hallways and lobby. He didn’t particularly care for the mask he had to wear, but we’ll just chalk that up to yet another COVID-19 fail. 🤷♀️
Brandon came back up to the hospital to spend the night with Everett on Sunday night. We have been so lucky to have Brandon be able to be in Southern California ever since Everett’s surgery, and we are so thankful to his job for being so understanding and always telling us that our family comes first (here’s looking at you Ryan and Richie…you guys are the best!). Even though we weren’t really able to see each other, except for two hospital cafeteria patio lunch dates while we were at UCLA and the brief time we were both allowed to be with Everett as he was being admitted here at CHLA, there was something so reassuring about the fact that he was only about an hour away if we ever needed anything. Brandon will be heading back to Fresno to go back to work starting on Wednesday morning. He will be going back and forth between Fresno for work and LA to spend time with Everett until we get the all clear to finally come home as a family. I’m not gonna lie, knowing he won’t be just down the road, but will now be 3 1\2 hours away and knowing that I’m on my own down here gives me quite a bit of anxiety. However, I’m just working on reminding myself every day that this is a means to an end, this hospital life is temporary and we are doing what we have to do to make sure that we’re giving Everett the best shot at his recovery. Again, if I can be just a smidge selfish…please keep Brandon and I in your prayers along with Everett. Not only is this physically and emotionally hard for me (living in a hospital is rough to say the least), but I know being far away from his family and at our house by himself will be hard on Brandon as well. Again, we know this period of time we find ourselves in is temporary, and we will eventually be able to be home together and get used to our new “normal”, but knowing that definitely doesn’t make these moments any easier.
Monday morning officially kicked off Everett’s intensive rehab sessions. They told us his sessions on Friday and Saturday were geared to get him “eased” in and to basically just see where he is at so they could develop a plan for his treatment. His day began with PT and OT and then we met his Speech Therapist (who will also work with him on feeding therapy), Ashley. She is so wonderful! Their morning therapy block was focused on feeding therapy and she was very impressed with Everett’s eating skills so soon after surgery. She does still want him to stay on just purées for now until he can build back up his chewing skills, but she did give us the go ahead to try to start giving him water off of a spoon as well as letting him snack on puffs. He seems to really like the puffs and bonus points for them reminding him to chew on both sides of his mouth! Ashley said maybe on Wednesday she will see how he does with soft “real” food like scrambled eggs! That will be one step closer to chicken nuggets!! 😀
Afternoon therapy went pretty well. Until Everett can build up his tolerance to the intense nature of the therapy sessions, they break up his sessions into 30 minute blocks twice a day instead of the full hour session once a day. During his afternoon OT, he and Eunice played with toys and bubbles. The goal of all of this therapy is to re-wire Everett’s brain into acknowledging that the right side of his body still exists. So simple activities like holding a bubble wand with “leftie” and popping bubbles with “rightie” are so important for the sensory input into his brain. PT worked a lot with him in one of the standing frames where he was able to put pressure through both of his feet and stand up with assistance. He has earned himself he nickname of Houdini however because he will do just about anything to try and wriggle out of the standing frame. The therapists were so impressed with how long he was willing to stand up for though. The trick to getting him to last just a few minutes longer is to bring out his all time favorite therapy toy…a string of colorful beads. We learned these were a favorite way back when he was in therapy back home as a baby for his torticolis and they have remained his favorite ever since! So Miss Amy and Dr Aimee at Dynamic Kids back home, thanks for the tried and true bead trick! We always think of you when we play with them!! Afternoon speech was a bit of a bust, all the hard work Everett put in at PT and OT in the afternoon, combined with the lack of a good nap, made for one grumpy mister man. Ashley was so understanding though and just said we will give it a go again on Tuesday.
The attending doctor here at CHLA told us when we arrived that patience is the name of the game here at rehab and if we stick with it and don’t get frustrated with the process that we will see Everett take baby steps every day. I am not the most patient person in the world (shocker, I know 😂), but I do know in my heart that all good things take time and my hope and prayer is that every day we see Everett grasp something new, no matter how small that something might seem. Please continue to pray for strength, endurance and bravery for our little boy and for strength (both physically and mentally) for Brandon and I as we face these next several weeks apart.
“I can do all things through Christ, who gives me strength.” Philippians 4:13