We are seriously in full blown countdown mode folks! As I sit and write this post, we are less than ONE day away from going home! WHAT!?!? There have been times that I thought this day would never come. 67 long days ago we kissed our little boy good bye, and trusted the most brilliant and capable team of doctors and nurses we could find to essentially save our son’s life. If you haven’t ever had to make such a life altering and excruciatingly difficult decision, please never forget just how lucky you are. But guess what…here we are 9 1/2 weeks later, staring DISCHARGE straight in the face! We made it…we really survived living in the hospital for 2 plus long months! Many many many tears were shed (mostly from me lol), there were many days and nights that were desperately lonely and emotionally overwhelming, I have battled more anxiety that I have in my entire life, and we are coming home very different people than we were when we drove away from Fresno on April 5….but WE’RE COMING HOME and this mama is so excited!
At first when CHLA asked to keep Everett an additional 2 weeks (on top of the extra week they had already added on), I was pretty bummed. But seeing the amazing progress he has made over the past 2 weeks, I am so very thankful that we agreed to stay. This little boy is AMAZING to say the least! His progress has amazed everyone here and the outlook for his continued recovery seems pretty positive. The huge strides he has made in all of his therapies has made these extra 2 weeks more than worth it.
The big winner this past week and a half was Everett’s improvement in Occupational Therapy. Everett’s primary OT Eunice and all of the other OT staff have been working so hard over the past 2 months to try and wake up Everett’s little right arm. Well, this past 10 days, but really the past 4 days, all their hard work finally paid off. Y’all, HE MOVED HIS ARM…ON PURPOSE!!!! Guys, this is huge! I was starting to get concerned that his little arm might be permanently limp, and he still has a long way to go to make his arm really functional, but the fact that the connections are being made in the right hemisphere of his brain to purposefully move his arm is such an amazing accomplishment and definitely an answer to so many prayers. We are truly beyond grateful for all of the work the OT staff has put in with Everett, and especially for them never giving up on “rightie”. And we are so proud of the determination of our little boy and the fact that no matter how frustrated he got, he never gave up. I said this last week about speech and I truly feel that it applies so much to both OT and PT as well, whoever Everett’s outpatient rehab therapists are back home have EXTREMELY large shoes to fill. Check out the videos below and see for yourself how awesome it is to see him moving his little arm.
Everett’s improvement in Physical Therapy has also been pretty amazing to watch. His strength and willingness to tolerate longer periods of standing and assisted walking are increasing every day. If you look back on when we first got here, Everett would barely tolerate standing for longer than a few minutes in the very supportive standing frame, now he is doing laps around the unit in the little modified tricycle, walking for 15-20 minutes on the treadmill and walking with minimal assistance over the ground. Guys, 8 weeks ago he had ZERO movement in his right leg…like it was literally a limp noodle. So to see him go from that to bearing weight, walking and attempting to climb again, is so dang encouraging! This week they really focused on helping give him a little more independence when it comes to his walking. Of course he isn’t quite strong enough to walk on his own but they have transitioned him almost entirely out of the gait trainers to just assisted walking and helping to shift his weight so he can remember to move his little legs. We are hopeful that with continued therapy at home that his leg will continue to get stronger and that he will be walking independently again soon. The PT staff, and his primary PT Kristin have been so amazing with Everett and we are again eternally grateful for all the work they put in with Everett over the past 2 months.
Everett’s speech also continues to improve. We are still in the babbling phase with lots of “b” and “m” sounds but we are working on having him “ask” for things he wants. Things like bubbles and Elmo are his two favorite things to babble for. He is improving in signing for “more” and we are also continuing to work on “want”. I think when we get home I’m going to try to teach him to sign for food and drink next. His attention span is also slowly lengthening and he has more tolerance for longer periods of a single activity which is so beneficial for speech therapy! We are eagerly anticipating the day Everett hopefully says “mama” and “dada” and means it.
On a completely therapy unrelated note, the coolest thing happened this past week. Several weeks back I was tagged in a Facebook post on an infantile spasms support group page in Facebook. This sweet mama’s little boy has the same type of epilepsy that Everett has and they were facing the same type of surgery that Everett just had, with the same neurology team and same neurosurgeon. Only difference from us is that they are from Michigan and would be traveling to California for evaluation and surgery. Sarah (yep, we are both Sara(h)’s) and I started chatting and almost immediately developed an awesome friendship. Sarah and her sweet little boy traveled out to California and were here for a few weeks before her husband joined them and they got the green light for surgery, which ultimately ended up being scheduled for last Tuesday morning (just shy of 2 months to the day from when Everett’s surgery was). Well as luck would have it, I had a few free hours last Tuesday on my way back to CHLA, and we were able to meet in person. It was so cool to just get to hang out, talk and get to know each other a little bit better. I remember all too well how difficult surgery day was and getting to spend a couple hours with Sarah on their surgery day, and to be able to laugh and joke together was so wonderful. Our friendship hasn’t been built over years and years of shared memories and experiences, but rather it was built on experiences that no one should ever have to share. We both watched the horrible monster that is infantile spasms attack our babies and we both had to make the excruciating decision to say yes to radical brain surgery to save their lives. But thanks to these shared experiences, I gained a friend/sister for life, we are already talking about hemiversary trips and the bright futures our boys now have a fighting chance to have! Sarah, you are an amazingly strong mama and I am so thankful to have you in my tribe! I love you my friend!
I also had the pleasure this week to finally meet my sweet friend Beth. I’ve mentioned her and her sister Susan a few times, as they have sent weekly care packages to Everett and I while we have been at CHLA. It was so much fun to finally get to meet in person and chat over donuts and coffee and explore Hollywood a little bit while Everett was in his morning therapy sessions! Beth and her sister Susan are the sweetest souls and we are so lucky to call them our friends! I can’t wait to see them both again next time we are in LA!
Guys! Can i just say it again, we go home tomorrow!!!! While Everett’s recovery is far from over, we are finally closing this chapter and looking forward to opening up another chapter of his recovery at home! I will continue to post his updates here and share all of his accomplishments with everyone. I know I have said it so many times but we cannot say thank you enough to everyone who has followed his journey. Whether you know us personally or not, your thoughts, prayers, love and encouragement over the past 2 months have been so very much appreciated as we have navigated the most difficult journey of our entire lives. We hope that by following Everett’s journey that you have been inspired to be stronger and braver than you ever thought you were capable of being.