Well, we made it through the first week of inpatient rehab relatively unscathed. Everett has been working so hard this whole week and even though the progress seems so small some days, just the fact that he has his eyes open and is sitting up, almost completely unassisted, is amazing to me. This is a kiddo who, just 3 weeks ago, was laying on an operating table having his brain operated on. When they say kids are so resilient, they really aren’t joking! I have learned so much from Everett about determination, strength, and bravery over these past 3 weeks, he is and always will be my tiny superhero!
Everett continues to work his little booty off in his therapy sessions every day. Some days are better than others as far as his willingness to participate in activities goes, but for the most part he has a least made an effort…often with lots of grumbling and griping, but an effort nonetheless. Friday (Day 8) brought with it lots of weight bearing practice both in PT and OT. Something that seems so easy to you or I, such as pushing up off of a hard surface with our right hand, is something that Everett’s body doesn’t want to let him do right now. OT has done a really great job working with Everett to help him realize that his right arm and hand are still there and doing lots of work to try and “wake up” the nerves and muscles in that right arm. Seeing how excited they all get when Everett’s arm shows slight movement or he initiates pushing off of his right hand, is so encouraging. You can tell that they are genuinely happy for him and excited about what he is doing. One of Everett’s primary Physical therapists, Kristin, really wanted to see how much assisted standing he could tolerate without the knee imobilizer brace on during his afternoon Pt session. Let me just tell you about how Everett apparently likes to show off! He stood in the standing frame for pretty close to his entire afternoon PT block and showed a lot of hip and glute activation on his right side. They even feel like he might be almost ready to try to introduce some “walking” type mobility movement next week sometime! Guys…this is HUGE!! He’s nowhere near walking again, but this is such an important baby step in the right direction! We are seriously so proud of our boy! Speech therapy today discovered that Everett’s favorite activities are singing, playing peek-a-hoo, and blowing bubbles. They also realized that he has a VERY short attention span, and very loudly lets you know when he is bored 😂.
The highlight of Saturday (day 9) was speech/feeding therapy with Ashley! We have seen so much improvement with his feeding over the past week. He went from not really wanting to eat anything to deciding that he should feed himself instead of being fed. Why can I say, this boy LOVES food! Surprisingly he is also willing to try food that before surgery he wouldn’t have touched with a 10 foot pole. We are still working on finding vegetables that he will willingly eat, but we have been having success with pretty much everything else. I’m hoping that this means I won’t have to go broke buying Costco sized bags of chicken nuggets every other week anymore! As a reward for working so hard this week, Ashley brought in chicken nuggets, french fries and fresh strawberries for Everett to try, and as you can probably see from the picture below, he was pretty excited about it!
Everett is also improving in his use of a sippy cup. We aren’t quite all the way back to his favorite straw cup but little by little he is showing more activation of his facial muscles and using his lower lip to create a seal around the sippy cup, as opposed to just chewing on the spout. Since we made a deal with the doctors to leave his NG tube out provided he drinks enough fluid, him becoming more proficient with his cup will definitely help, especially because basically pouring one ounce of fluid at a time into his mouth from a medicine cup is it an ideal situation. 🤷♀️
We are definitely looking forward to our Sunday rest day and getting to see Brandon in the afternoon! B will come down after he gets off work on Sunday and stay with Everett through Tuesday afternoon. Obviously we would prefer to be able to spend his days off all together, but like I have said so many times before, COVID-19 restrictions have made this whole process so much more difficult than it already is. I am just so grateful that the visiting policy here at CHLA allows Brandon to be here at all, especially after him not being able to be with us at all during our time at UCLA. Believe me, I completely understand the need for visiting restrictions…but it doesn’t make it any easier or less frustrating. Again…thanks a lot COVID-19…ya big jerk!
Sunday (day 10) was our lazy day! Everett got to sleep in a little bit (he had a bit of a rough sleeping night so I didn’t feel too bad about letting his sleep a bit longer than usual), we ate breakfast and just hung out. We watched a lot of Sesame Street, read some books, and went for a little stroller ride around the unit and down through the lobby. One of these days I’m going to figure out how to get him outside for a little bit of fresh air since the air in LA is actually not filled with smog right now! I guess that is one bright side to all of the “safer at home” stuff, less pollution! Brandon got to LA at about 5:00 and, even though we weren’t about to spend more than a few minutes together, Everett and I went down to the lobby together to meet him and swap places. Again, I am so thankful that CHLA is allowing us to swap spots, but only being able to spend less than 5 minutes together is pretty tough, especially when you consider that we have close to another month here. I just keep reminding myself that this is a means to an end and that we made the right choice to do inpatient rehab to give Everett the best shot at recovery. We would do anything for our little guy, and as hard as this is and continues to be, we know in our hearts that it is the best choice in the long run.
We are excited to see what this next week brings! Thank you again so much for your continued love, prayers and support for all of us. We are beyond grateful for each and every one of you. 💜