Rollin, Rollin, Rollin – Rehab Week 3/Part 1

Whew…it’s been a busy several days around here! Mister has been showing off quite a bit, not only just his new skills but his feisty attitude also! You’ll also notice by the title of this post that I have stopped counting days and have moved on to counting in weeks. It is easier for me to put together several days of progress into one update, otherwise I feel like it would be a lot of the same things over and over again every day. So, I think going forward I’ll be doing 2 updates a week regularly and if anything super awesome happens, I’ll toss in a bonus post here and there! Sound good….ok cool! 👍🏼

Outside of the colossal meltdown that Everett managed to have on Saturday morning (more on that later), we’ve had a pretty good start to week 3 at CHLA. With every day that passes, a little bit more of Everett’s personality peeks through and his gross motor improvement is continuing to inch along. I’ve said it before but I feel like I need to say it again, mostly to remind myself, patience is the name of the game here.

Friday was a pretty good day for Everett. We did some more work with his feeding and drinking out of a cup in speech therapy. Our normal speech therapist wasn’t here today, so we had two new therapists. They were both great but it is hard to have new people, that don’t know Everett, come in and work with him. They just don’t know his temperament and what he does and doesn’t like, so it makes it a little harder to get things accomplished. Ashley will be back to a semi-normal schedule next week though so we’re looking forward to that, we really love her and how knowledgeable and patient she is with Everett! She has been a godsend when it comes to Everett relearning how to eat and drink, he does so well with her. Physical therapy worked a lot with Everett on standing and some more assisted walking in the morning, his afternoon session was more of the same, except this time with toys! Toys are definitely good motivation for bubs however often times he likes to use them as a weapon 🤦🏼‍♀️…I think he underestimates his own strength on his left side! Everett and I also had a nice little afternoon snuggle for his nap today. He fell asleep after his lunch while I was holding him and I just couldn’t bring myself to put him down in the crib. I’m trying to soak up these snuggles as much as I can while he will still let me. I’m also in denial that he is going to be 2 in just a few short days…some days it feels like he has been a part of our little family for a million years, other days it feels like 2 years flew by in the blink of an eye. Time certainly is quite the thief!

Saturday will forever be known (to me at least) as the day of the epic rehab meltdown. I’m actually surprised it took this long for it to happen! It was a bit of a rough night in the sleep department, with several stretches of needing to be held in order to sleep…but I didn’t imagine it would lead to waking up on the VERY wrong side of the crib and a complete refusal to participate in therapy. Needless to say the day was a bit of a wash when it came to all but his late afternoon PT and OT sessions. There were lots of tears (from both of us 🤷‍♀️) and some much needed mama snuggles just to make it through the day. This mama is definitely looking forward to swapping spots with Brandon and getting a little breather. I am so proud of all that Everett is doing here at rehab but after having virtually lived in a hospital room, eaten hospital food and slept on less than comfortable furniture for the better part of a full month, I am definitely more than ready to go home. I never ever thought I would actually miss Fresno, but well…here I am, missing Fresno, my house, my bed, my couch, my friends…well you get my drift. My heart truly goes out to all the parents of chronically ill kids, tiny preemies, or those that have “lived” in a hospital for far longer than we have. I know our situation pales in comparison to some other families but man, this has been tough.

We always look forward to Sundays, it is Everett’s day off from therapy but it’s also the day that Everett gets to see his dad and I get to see my husband for the first time all week. We had another very chill Sunday, LOTS of Sesame Street, lots of much deserved rest and relaxation and we even got to play on the fun new play mat that PT had brought to our room. Everett surprised me with some new tricks and lots of weight bearing in his right arm while he played. We are hoping that all these baby steps back to some of his lost skills are going to start to pay off in big ways here very soon…mainly like us being comfortable with him sleeping on his stomach again which we are hoping will lead to much better nights of rest for everyone. I’m including a video of Everett’s newest accomplishment…rolling over! This is huge because it means that the neurons in his right hemisphere are really starting to make new connections! Sunday evening brought with it my long awaited 5 minute parking lot chat with Brandon…we’re keeping track and we’re pretty sure that, including our two cafeteria patio lunches at UCLA, we are up to a grand total of maybe 2 1/2 hours spent together in the past 4 weeks. Did I mention yet that I really miss my husband!?!? Our situation during the week wouldn’t be a whole lot different right now, the reality is that Brandon has to be in Fresno 5 days a week for work (I’m on an FMLA leave of absence from my job so I can be here with Everett full-time). The difference would be that the days that Brandon is here, we would be able to be all together. But, this is just a side effect of the COVID19 restrictions and we know that there are so many other families in our same position…we do what we have to do to make it work and to give Everett the best recovery possible.

Monday and Tuesday were Brandon and Everett’s days together. I love that Brandon is able to be a part of Everett’s rehab since he was unfortunately not able to be with Everett at all while we were at UCLA. Hearing how much he misses his boy breaks my heart but then getting to see their interactions over FaceTime and hear how proud he is of how hard Everett is working just brings such a smile to my face! I truly cannot wait until we are all able to be home together as a family and learn how to navigate our new “normal” together. Everett’s biggest accomplishment while Brandon was with him was finally getting cleared to eat a regular diet! Buh bye mushy food, sayonara soggy pancakes, adios soupy ravioli…hello chicken nuggets and fresh fruit! Trust me when I tell you this little boy is in heaven right now! He still has a few restrictions on what he can and can’t eat just because of his age, but for the most part he got the complete green light to eat whatever he wants! Hopefully his willingness to try a variety of foods will continue, and we don’t have to revert back to chicken nuggets for every meal! 😂 Everett is also still working super hard at being able to get over to his stomach to sleep, he is pretty dang close. We are still pretty convinced that if he can get all the way over his sleep will greatly improve…fingers crossed for that one!

Well, that is all for the first part of week 3 at rehab. We are very quickly approaching Everett’s birthday this weekend! I seriously can’t believe my baby is going to be 2 already! We know being here in the hospital isn’t the ideal circumstance for a birthday but we’re going to make the best of it and celebrate with all his new rehab friends and then he will celebrate again with his dad when Brandon gets here on Sunday!

We love you all of you who are following Everett’s journey and again want to express our heartfelt gratitude for those of you who are continuing to hold Everett and our little family close in your thoughts and prayers. Mister Everett truly doesn’t have any idea how much he is loved and cared for by so many people! Thank you all from the bottom of our hearts!

-Sara