“We’d like to keep him a little bit longer…” Rehab Week 5

What a week this has been…after the rough, emotional week i had last week, this week started off really well. Everett and i had a good relaxing day on Sunday, I got my weekly 5 minute parking lot visit with Brandon on Sunday afternoon, and our family conference was scheduled for Tuesday where we would get to sit down with Everett’s whole rehab team and talk about how he has been doing here at CHLA and what life looks like after discharge. Since Brandon was already at the hospital with Everett, CHLA was kind enough to make an exception so I could also be present for this conference versus having to join via Zoom or FaceTime. Prior to this conference however, I got a phone call from Brandon asking me if I wanted to know the “bad news” before I got here. Instantly in my gut I knew that the day I had been looking forward to for weeks, just got extended…again. 😞 Spoiler alert…my gut was right, they would like to keep Everett for an extra couple weeks. Keep in mind that our original estimated discharge date was May 22, then it was May 29, and now it’s June 12. They promise us that they wouldn’t ask to keep him longer if he wasn’t making amazing progress and have assured us that they truly feel that he will benefit from the structure of daily therapy, but I’d be lying if I said my heart didn’t break just a little bit at realizing that my discharge countdown just got a little bit longer. We are so incredibly thankful for everyone here at CHLA, and all their patience, skill and hard work with Everett and we are hopeful that the additional 2 weeks they want to keep him will be beneficial beyond measure. The silver lining in staying here this additional time is that it will give us a little bit more time to get his outpatient rehab therapy set up back home so there will be little to no delay in continuing the progress he has made here once we get home.

His family conference was very encouraging. The rehab doctors and almost all of his primary therapists were there and had such wonderful things to say about his progress and the direction they feel like his recovery is headed in. We have participated in enough of his therapy sessions to see what amazing progress he is making but to hear his therapists say just how impressed they are with his progress is really cool. They all have things they want to continue working on with him and areas they feel like he can definitely use some improvement in, but that is the nature of inpatient therapy. The cool thing, in my opinion, about inpatient therapy is getting to have a front row seat to see neuroplasticity in action. Everyone from Everett’s neurologist and his neurosurgeon, to the rehab doctors and therapists here at CHLA have talked to us about neuroplasticity in the brain of a child. It is one thing to talk about it and it is a whole different thing to watch it in action. Just thinking back to almost 7 weeks ago when he was freshly post-op and couldn’t hold his own head up or even try to sit up with out total support, to now where he has complete head and trunk control, pulls himself up to his knees, is working so hard to pull himself to standing. He also has much more awareness of his right arm and is even trying to babble a little bit…it truly is such an amazing thing to watch. The human brain is a phenomenal thing I tell ya!

This week in PT, Everett did A LOT of assisted walking both on the treadmill and on the ground. The new thing they are working on him with in at least one of his sessions is spending the first several minutes on the treadmill and then moving him to the ground and working with him on continuing the walking movements on a solid, non moving surface. They are always so impressed with his ability to transfer from the treadmill to the ground. We are hoping by continuing this trend that he will get som more active mobility down into his lower leg and ankle joint and loosen up some of the increased muscle tone that has developed in that area. They have also been working a lot with him on pulling to his knees (which he is doing really well at) and starting to work on pulling to stand and cruising side to side while holding onto the therapy mat tables. Again, rehab is such a long, slow process (especially after the type of surgery that Everett had) but just seeing him making daily improvements, no matter how small they might be, is such an encouragement to both Brandon and myself.

OT this week had to switch their approach up a little bit. Last week they had attempted to try some of the CIMT therapy with Everett and it quickly became obvious that he’s just not quite ready. In order for this type of therapy to be really effective, he needs to have a little bit more voluntary movement in his weak arm and hand and he just is t quite there yet. This is another big reason for the extended stay. Eunice, his primary OT, still feels like he is the perfect candidate for the CIMT therapy, he just needs a little bit more time before they start it. So this week it was a lot of hand over hand type movements and really encouraging him to pay attention to his weak hand. We are definitely noticing him acknowledging his right hand more, which is definitely a step in the right direction. We are hoping by next week, or early the following week they will be able to start CIMT again.

We have been hearing a lot more vocalizing from Everett over the past week as well. Prior to surgery, Everett was almost entirely non verbal (just some occasional squawking or yelling loudly when he didn’t get what he wanted), and because of the cortical dysplasia in the left side of his brain (the side responsible for speech and language) we weren’t sure if he would ever talk. The hope was that as he recovers from the surgery, that the language center will shift to the right hemisphere of his brain, allowing him to have a chance at learning how to talk. It is still too early to determine what, if any, verbal communication Everett will have, but we are really encouraged by hearing lots of “ba” and “ma” sounds recently. We have even heard a handful of “mama’s” this past week which just melts my heart. Speech Therapy is trying to build on these sounds by trying to teach him to mimic what they are saying in his sessions, so far they aren’t having too much success with this but they are still working with him on it every day. Ashley is also still working on sign language with him, he is getting better at “more” and occasionally a very modified version of “want”. Again, the goal of teaching him sign language is that he will have a way of telling us what he is wanting instead of him (and us that matter) getting frustrated because we can’t communicate with each other. There are so many alternative ways of communication these days so, as much as my mama heart wants him to be able to talk, the ultimate goal is really just to give him a way to communicate, whether that be verbally, sign language, word charts, etc… We are so thankful for Ashley’s patience and determination when it comes to working with our easily distracted little guy. 😂 She definitely has her work cut out for her with Everett’s very short attention span!

A few non therapy highlights of our week this week were finding a way to get Everett outside for some fresh air for the first time in 6 weeks and a room change. Sundays are Everett’s “rest day” from therapy so we are always looking for ways to keep him occupied. I have been trying to figure out a way to get him outside but because of the COVID19 restrictions, most of the outdoor spaces and play areas both at UCLA and here at CHLA have been off limits to patients. Keep in mind that before surgery, Everett was used to going on a walk everyday and getting to play with his outside toys in our backyard as much as possible. So I’m sure it’s been a tough transition for him going from being outside daily to not getting to be outside and enjoy fresh air since the day before his surgery. I had heard a rumor that there was a “ meditation garden” near the chapel here at CHLA that was possibly not off limits to patients, so on Sunday morning we set out to find this garden and get some much needed fresh air! Luckily it wasn’t too hard to find and Bubs and I were able to sit outside and enjoy the beautiful day for about 30 minutes. I think we will try to make this a weekly Sunday “outing”! We also got a change of scenery with a room change this week. Our parking structure view from our old room has been upgraded to a partial view of downtown LA in our new room. I’m sure there are people who would pay good money to stay in a hotel room with the view that we have from a hospital room lol. We also went from a room right outside the nurses station (which had both positives and negatives) to the farthest room away (again, which has its positives and negatives). I definitely enjoy getting to watch the sun glow off the high rises in downtown LA at sunset from his new room though, it’s a nice way to end the day.

Thank you so much for all of your continued love, support and prayers for our little family. As tough as it is to know Everett and I are looking at more time away from home, we are so hopeful that these extra weeks will continue to be filled with really great progress. Also, if anyone has any stellar food delivery ideas for us in the areas around CHLA (Hollywood, Los Feliz, Glendale, downtown LA, etc…)…send them my way! Your girl needs some new food ideas! 😃

-Sara