Rehab is so much different from a “normal” hospital admission, Everett’s days are busy with his various therapy sessions and I find that the days tend to get away from me, and I wind up doing a big multi-day update like this one 🤦🏼♀️. So, I’m sorry in advance for the LONG update, it’s a good one though…I promise! This week has been especially busy for our little guy with so many new and exciting activities.
Brandon drove back to LA from Fresno on Sunday afternoon to spend his days off here at CHLA with Everett. Can I just mention how thankful I am that, even though he has to make the trip back and forth to Fresno for work every week and we don’t get to spend longer than about 5 minutes together during our switch off in the lobby, Brandon is still able to be here and spend a little bit of time with Everett. Not only does it give me a little break from the hospital but it also allows him to spend time with Everett and be involved in his therapy and see his progress firsthand. With all the craziness going on in the world right now, I have been working really hard to find the silver linings in our situation, and this is definitely one of them!
MONDAY (Day 11) therapy was very productive! Everett started off his day with speech/feeding therapy with Ashley. She is so impressed with how well he is doing with his feeding and he is really taking to a sippy cup again! Granted he is still biting a lot on the spout and we are still working back towards him being able to use the straw cup again but just the fact that we aren’t having to pour fluid in his mouth from a 1 ounce medicine cup anymore is a BIG DEAL in my opinion (and much less time consuming lol). Ashley’s goal is that by next week, Everett will have graduated from soft foods to a regular diet, filled with all the nuggets, fruit and anything else his little heart desires! His other feeding goal is to continue improving on his sippy cup usage, he has a fluid goal he has to meet everyday in order to keep the NG tube out, and thankful so far he is meeting his goal but we would like to continue this trend! Once his feeding is well established, they will be able to move on to more actual speech type therapy as opposed to focusing so much on feeding. This will be a big step in the right direction of hopefully retraining the right hemisphere of his brain to pick up the speech and language that is usually controlled by the left hemisphere. I said the other day that one of my biggest fears is that, because Everett was non-verbal before surgery, the right side of his brain will not pick up the language and speech and that he won’t ever be able to communicate with us. Obviously our big goal is to have him be verbally communicative, however the speech therapists have talked to us quite a bit about just establishing any form of communication, even if that is something like sign language, just so he won’t be so frustrated trying to communicate what he wants to us. Both physical therapy and occupational therapy continue to work with Everett on his weight bearing on his right side and “waking up” his right arm and hand. The biggest highlight of today was Everett “walking” on the treadmill. Granted, it took a lot of support and assistance but for the first time in 3 weeks, our little bubs got to move his legs and began the process of re-learning how to walk. Kristin, Everett’s primary physical therapist, said she was hoping for 5-8 minutes on the treadmill and to anticipate lots of tears, well mister overachiever lasted 11 minutes and only started to fuss when they were taking him out of the gait support device! 🤷♀️ The physical therapists are so impressed with where he is at just 3 short weeks removed from such a major surgery.
TUESDAY (Day 12) started off with more feeding therapy in the morning. Bubs got to try sausage and non-soggy pancakes this morning and, according to Ashley and Brandon, he loved them! The plan for his second feeding therapy today is to see what he thinks about PB&J! I’m telling you, Everett is all of the sudden so adventurous when it comes to his food choices! Remember just 3 weeks ago his pre surgery diet consisted of pancakes, fresh fruit, sweet potato fries and chicken nuggets…and NOTHING else! So we definitely are happy with his newly acquired taste for all kinds of food! PT today involved a lot of supported standing and even some standing play! The theory is that the more they encourage the use of the right arm and leg, the sooner his brain will create new pathways and connections in order to “wake up” his right side. The therapists are really happy with how well he is tolerating the standing and they are also super happy with how his sitting stability has improved over the past several days. They say all the time that he has strong baby abs! 😂 OT today worked a lot with him on reaching for toys that were on the opposite side of his body, again super important for creating those new neurological pathways. They also continue to work with him on bearing some weight in his right arm. Some good news from OT is that they don’t feel that the slight subluxation in his right shoulder has gotten any worse, and they are hopeful that because it is so small that it will correct itself as his shoulder begins to wake up again.
On my way back to the hospital from Brandon’s Aunt’s house, I made a quick stop in Long Beach and saw a couple friends! It was nice to take a drive through my old stomping grounds and drive past some of my old houses and hangouts from when I lived there. I was also able to have a “social distancing picnic” with my bestie Katie on the lawn at her apartment complex. So glad we got to see each other, even if the visit was far too short.
Brandon headed back to Fresno for the week on Tuesday night. Man, let me tell you just how hard it is to see each other only in passing and only twice a week. Despite this, I am again so grateful that he comes to LA to spend his days off with Everett here at the hospital. Living in a hospital and out of a suitcase is tough but I would do anything for Everett, including sleeping on the worlds most uncomfortable hospital couch/bed for weeks at a time. 😂
WEDNESDAY (Day 13) was fun for Everett for sure! PT and OT continue to work on standing and weight bearing activity, but today OT decided to have a little bit of fun and play with water. Eunice learned very quickly that Everett is quite the splasher and LOVES water! She said it is really good input to play with water to feel the differences in texture from the hard floor or soft pads, even if it really messy! Needless to say, an outfit change was required after his morning OT session! PT continues to work with Everett on supported standing and walking, they feel like he has almost graduated from the standing frame to just supported standing on the ground! This is a “big” baby step in the right direction friends! I’m also happy to report that slowly but surely, Everett’s sleep schedule seems to be improving. As you might recall, ever since surgery his sleep has been all over the place including several really rough nights of little to no sleep. After a rough night on Monday night (sorry Brandon 😬), we have had a few pretty decent night of sleep with only one or two wake ups, both of which just required some mom snuggles and he fell right back to sleep. I’m certainly hoping this trend continues because I am much less of an emotional hot mess with a little bit of sleep! 😂
THURSDAY (day 14…2 weeks!!!) brought with it some new, fun activities for Everett! PT felt like he did such a good job with his supported walking yesterday that they wanted to try out some more walking today, this time in the gait trainer. And while he still needed a lot of extra help moving his little legs, the therapists felt that he did have a few moments of hip and glute activation where he tried to move his leg on his own. His afternoon Pt session was the best though, after he worked hard on sitting to standing and some position transitions, he got to ride on a little therapy bike. Let me just tell you, this was THE cutest thing I’ve ever seen! The bike is one that when it is in motion the wheels drive the pedals so it was a lot of passive type movement in his legs but it was the sweetest thing to see him come around the corner back into his room riding the little bike. (Pardon my annoying voice on the video below but everyone needs to experience the cuteness of Everett on a bike!)
We are so very thankful for the team here at CHLA who are working so hard to get our boy his functionality back and who are so very patient and encouraging. We know we still have a long road ahead of us but I am so glad that we were able to come here to CHLA for the second half of Everett’s brain surgery story. The therapists and doctors here are so wonderful and seem to truly care about Everett and his recovery and rehabilitation and that means the world to Brandon and I.
We are so stinkin’ proud of our little boy and how hard he is working. Every day he is making progress and we are hoping and praying that these next few weeks continue to bring progress and healing to his body. I know we have both said it so many times but we are so thankful for each and everyone of you who have been following along with Everett’s journey, loving him and our little family and praying for his healing. We are truly so thankful for each and every one of you.