Progress not Perfection, Hospital Fatigue, and a Curfew to Spice Things Up…Rehab Week 6

Friends…what a week last week was. I honestly don’t even know where to begin really. My heart is saddened for our nation. From our little hospital bubble, we watched the country erupt into chaos over the senseless and horribly tragic killing of George Floyd in Minnesota. Los Angeles, like so many cities across the country experienced the power of peaceful protests and the devastation of riots, looting, and vandalism. The riots hit especially close as I watched my old neighborhoods and hangouts from my days in Long Beach being senselessly destroyed. The outrage over the senseless tragedy in Minnesota is, in my opinion, 100% warranted…the looting, rioting and vandalism however is NOT…stop burning down your own houses and neighborhoods folks, that doesn’t solve anything!! Now, I know none of you are here to read about this, but rather to hear about Everett’s progress, so I won’t say a whole lot more…however I will say this, I hope that as a country, the events of the past week will open our eyes and cause us to strive to do more and to be better no matter what the circumstances are. We owe it to ourselves and our future generations to do whatever it takes to NEVER let situations like this happen again. That’s all I’ll say about that…thank you for coming to my TEDTalk! ✌🏼

Ok…moving on to Mister Everett! First, let me say sorry for the super late update, last week just blew by and I lost track of time! I cannot believe we have been in LA for almost 2 months and here at CHLA for over 6 weeks now! Hospital fatigue is real y’all…not only am I so beyond ready to finally get to go home, but we are starting to get the feeling that Everett is also. We are in the final countdown and keeping our fingers and toes crossed that the discharge date of June 12th sticks this time. The progress Everett has made during his time here at CHLA has truly been nothing short of incredible and, although we know he still has a long road ahead of him, we are so encouraged at how much he has been able to accomplish over the past 6 weeks.

Both Physical and Occupational Therapy are very encouraged by his continued improvement and willingness to bear weight through his right leg and arm. PT continues to work with him on helping his brain and muscles to relearn a walking type movement, and while standing unsupported and walking are still a long way away, everyone seems very encouraged with the baby steps he is making towards this huge goal. He is becoming much more stable when kneeling and his right leg slips out from underneath him less and less with each day that passes. This past week he has been attempting to pull himself up to a standing position while holding on to something…his favorite something being the rails of his hospital crib…standing up, grinning and half giving me a heart attack that he might topple out! 🤦🏼‍♀️ OT is very encouraged by the increased movement that they are seeing in Everett’s shoulder. He is able to occasionally lift or maneuver his right arm on command and while it is still extremely weak, just the fact that he is moving it at all is a big deal. Weight bearing continues to be the go to exercise and playing position in OT as they continue to work to build brain to muscle connections in his right arm. I commented the other day that i wish his arm was asking up as rapidly as his leg seems to be, especially because it is so hard to see him struggling to try and use his arm when he wants something or wants to play. We are remaining optimistic however, that he will continue to progress during our last days here and that we will fall into a good groove with outpatient therapy when we get home and that little arm will continue to wake up.

The star of the show last week definitely was Everett’s improvement in speech therapy. I mentioned in my last therapy update post that he was doing some more babbling and he continues to make noises this week. We are hearing a lot of “b” and “m” sounds and this week an he seems to understand how to “ask” for something…even though it is all babble gibberish and makes zero real sense, the fact that his little brain is connecting the dots and trying to learn how to communicate is HUGE! He loves to play with the bubbles in therapy and we are pretty convinced that when he says “baba” he is asking for bubbles. We could be wrong but we’re just gonna go with it for now! When it comes to speech we take any victory, no matter how small, and run with it. Ashley, his primary speech therapist, has done such amazing things with him during our time here and we are going to miss her so much when we get discharged. Whoever his outpatient therapist ends up being has VERY big shoes to fill!

Good news…it looks like our discharge date of June 12th might actually stick this time!! We are definitely counting the days until we are finally, after 9 1/2 very long weeks, able to be together as a little family again. With that being said, we are going to miss the rehab staff here at CHLA terribly. Each and every one of them has become like family us and we will never be able to thank them enough for all they have done for Everett over these past 2 months. They will all always hold a very special place in our hearts.

I hope all of you are safe and healthy amidst all of the chaos and unrest that happened over the past week and a half. LA imposed several nights of curfews to try and get a handle on the chaos and it was so strange to see what had recently become busy streets (thanks to some of the COVID restrictions being lifted) strangely empty again. It was just so unsettling.

Although our time here in Los Angeles is approaching an end, Everett’s journey is still just beginning and we can’t wait to share about his final days here at CHLA and then begin sharing about what life at home looks like for us and how he continues to progress. We are so thankful for all of you that have followed along with Everett’s journey for the past 8 weeks, your thoughts, prayers, gifts, donations, and care for not only Everett but also for our little family mean more to us that we will ever be able to express. Thank you truly doesn’t seem like enough…but please know our thanks and appreciation for all of you is HUGE!

-Sara