There’s no real way around it, this week has been a hard one. I’ve really struggled writing this post because I just feel like such an emotional hot mess and I haven’t wanted to write a post in the frame of mind that I’ve been in. But the more I thought about it, I decided that if you’re following along with Everett’s story, you deserve to know it all…the good and the not so good. So here it goes…
I’m on the struggle bus for sure again this week, I’ve said it quite a few times but living in a hospital is HARD…really really hard. As I sit here and write this post, it has been 42 days since Everett and I have been home. 42 days since sleeping in my own house, in my own bed, since seeing my husband for any significant amount of time. 42 freaking days…y’all that is a LONG TIME. 1 day of travel, 11 days at UCLA and 30 days so far here at CHLA…and let me remind you that we still have 2 weeks to go. I know in the grand scheme of things, there are people who spend a lot more time in the hospital than this, and I should really count my blessings that we are in the home stretch of this admission, but none of that changes the fact that this has been tough. And further complicating the situation is that we haven’t been able to be together as a family through this whole process. As you all remember, Brandon wasn’t allowed to be at UCLA because of the visiting restrictions with COVID and while we are both allowed to be at CHLA, we aren’t allowed to be here together. This is something no one should have to face alone. It has been scary at times, very very lonely and emotionally and physically exhausting. We have both said so many times that we would do absolutely anything for Everett, and we are so dang proud of everything he has and continues to accomplish, but I’d be lying to you if I said I haven’t felt like I was losing my mind a time or two through this whole process. And, since I’m being honest here…while I truly cannot wait to go home, I’m also a little bit scared also. Our life is going to look very different when we get home. We are anticipating several days a week of various therapy sessions (PT, OT and Speech Therapy at the least), which he needs to maintain and continue the progress that he has made here. Our lives were already pretty crazy before all of this and I have a feeling they are about to get a lot crazier. So, as much as I might seem like I have it all together and I am handling this so well, this whole process has challenged and tested me in so many ways, and a lot of the time i have felt like i am completely falling apart. But at the end of the day, I get up…dust myself off…tell my emotions to chill out so I can focus on getting my little boy better. Because, no matter how much of a pity party I might want to try and throw for myself sometimes, my boy needs his mama to be strong and brave and after all he has been through, that is the least I can do for him. Also, PSA…a little fresh air does a lot to clear your mind. E’s wonderful physical therapist Kristin told me to skip his morning sessions on Thursday and go for a walk outside instead…I’m glad I took her advice, the fresh air really was nice…even through my mask! 😷
Now to the good stuff…Everett continues to do big things in rehab. Yes, the progress is slow but it is progress. He is perfecting skills that he has been relearning over the past 4 weeks here at rehab and each day he shows us a little something more that he is learning. We are seeing so much movement in his right leg, he is even willing to bear some actual weight on it for a decent amount of time! He does still need to hold onto something when he stands up and he does still need a lot of help if they want him to stand for a long time, but just the fact that he is standing up and bearing weight on “rightie” is so awesome! PT is so happy with how he is progressing and his motivation to use his right leg when they practice his walking. They’ve said several times how impressed they are with how well he is tolerating his walking, especially when they do it in both of his sessions during they day. He is also showing major improvement in his transitioning from laying to sitting up as well as pivoting around on his stomach when he is searching or reaching for a toy.
As we fully expected, Everett’s upper limb is lagging behind his leg in the movement department. We were told in our initial surgical consult with the neurosurgeon that function typically returns in the upper leg first and then some movement in the upper arm and the movement impulses then travel down the extremity with the fingers and toes being the last things to regain movement. Even then, fine motor movement may never fully return to his right side. So we celebrate any small movements in his right arm and when he tolerates weight bearing on his arm, we all get really excited! We are gradually seeing more activation in Everett’s shoulder and a bit in his upper arm/bicep area. There is enough movement there that OT wants to try out a type of therapy called Constraint Induced Movement Therapy (CIMT). CIMT basically involves immobilizing Everett’s good arm for short periods of time and really encouraging him to use and focus on his weak side. By doing this type of therapy, the hope is that his brain will realize even more that his right arm is indeed still there and will send signals to that right arm to help regain its function. They are very optimistic about how Everett could respond to this therapy, so we are hopeful as well. We know to anticipate a lot of frustration and irritation initially but over the next couple weeks, we are praying that his brain and body will respond well to the therapy.
We truly are so proud of our little guy and how hard he has been working over the past 4 weeks here at rehab. No matter how difficult the days get, seeing him master a new skill or perfect something they have been working with him on for awhile truly makes all of the hard days and tears I’ve cried over the past 6 weeks worth it. We are on the home stretch! We have our family conference with the rehab team here on Tuesday to go over his progress and construct a plan for what life at home will look like for the foreseeable future. We are keeping our fingers crossed and praying that outpatient therapies at home are going to be open and able to continue his care, and that we will have a smooth and seamless transition to life back home.