There Truly is No Place Like Home…

Well, we’ve officially been home for a little over one full week! And man what a week it has been. It’s crazy to think that last week at this time I was sleeping in my own bed for the first time in over 2 months. Can I just say that I have honestly never been so excited to see a real bed in my entire life! 😂 Readjusting to life at home has been interesting. I knew after being away for as long as Everett and I were, that coming home was going to be so amazing, but what I didn’t anticipate was the flood of crazy emotions, that would come with being home. When we first left for LA back in April, we didn’t anticipate being gone quite as long as we were gone for (a challenge in and of itself) but in addition to that and despite all of Everett’s amazing progress and hard work at CHLA, his physical abilities are very different than they were when we left, so that is taking some adjusting and modifying of our routines. I have found myself more than once this week walking down the hallway in our house and fully expecting Everett to toddle down the hall behind me like he always used to do. I have complete faith that he will get back to that point, but until then I have a feeling that I will continue watching behind me in the hallway/bedroom/pantry etc… expecting him to be there. We have also had to rethink many of the toys that have been in our living room for many many months. Some of the “cute and fun” toys have now become a little bit dangerous and therefore have had to go into “toy quarantine” for awhile. 😬 Overall though, despite the emotions and adjustments…we are so incredibly glad to be home. Nothing will make you appreciate home more than living out of a suitcase and sleeping on a stiff recliner or foldout chair for two months! Now if we could just do something about this disgusting 100+ degree heat…

Saying our final goodbyes to CHLA last Friday was so bittersweet. The staff, and especially Everett’s therapy team, became like family to us during our time there, so saying goodbye to them was so tough. During our admission, Everett was one of two babies on the unit, and the other baby had gotten discharged the week before so the running joke was that June was the month of the grand baby exodus from 6 Rehab. I said it so many times throughout the course of our stay at CHLA but I feel like thank you just isn’t enough to express our gratitude to the team that worked so diligently to help Everett get started on his road to recovery. The little boy that we left with on June 12th was a completely different (and much improved) little boy than the one that arrived to CHLA freshly post op and miserable on April 17, we owe so much of his improvement to the incredible therapists we had on his team. There is a reason why CHLA has the reputation it has, they are truly miracle workers! We hope that (once the COVID restrictions hopefully relax a little bit) we will be able to visit and show off Everett’s continuing improvement when we are in LA for his appointments over the coming months and years.

We weren’t able to get pictures with everyone but here are a few of the amazing people that made up Everett’s team.

I said so many times that I wouldn’t believe that we were actually being discharged and were really going home until we were all in the car driving away, and let me tell you that moment was seriously so surreal. We made a quick detour back to Auntie Caroles house so she could see Everett and to pick up our fur baby Luci and then we officially headed home. I cannot even begin to describe how wonderful it was to finally all be together after so long apart. We made it home (after of course sitting in LA traffic for the first time in months 🙄) and were greated with sweet welcome home signs and decorations from some of our very sweet friends. I honestly cried as soon as we pulled up in front of our house because it just felt so good to be home. ❤️

As far as what we’ve been up to since we got home…the answer is not a whole lot, which is exactly what I was hoping for! We had the weekend and then Monday and Tuesday together before Brandon had to go back to work, so it was so nice to just be able to relax and enjoy catching up on some of the time we lost after being apart for as long as we were. We did have an Occupational Therapy evaluation at Valley a Childrens Hospital in Wednesday and unfortunately, despite them agreeing that Everett needed services, they couldn’t guarantee that they would be able to see him in a timely manner (they said it could be 2-3 weeks or 2-3 months before they could get him on their schedule 😳) and even then they would only be able to see him at most once a week. Well that just wasn’t going to fly with me, so I immediately started seeking out a different option for him. Thankfully there is another pediatric occupational therapy provider here in town that agreed with CHLA’s recommendation regarding the the urgency and need for multiple visits per week to continue Everett’s progress and they were able to get him in right away. I really feel like they will be a good fit for Everett and his new therapist Lisa seems really skilled and passionate about helping Everett continue to recover. We have Speech and PT evaluations at Valley Children’s next week but I am already working on lining up alternative options just in case these therapies say the same thing as OT said. I have learned a lot over the past few months, one of the big ones being how to appropriately advocate for my child to get the services and therapies he needs, never underestimate the advocating power of a mama bear!

I’m finishing up this blog on Father’s Day and I want to take a moment to recognize Brandon for being such an amazing dad to our little warrior boy. I’ve said so many times that this was definitely not the way we envisioned parenthood going but there is no one in the world that I would rather be in this journey with other than Brandon. He is loving, patient, and kind and such an amazing role model to our little boy. Everett and I are so dang lucky to have you in our corner and fighting along side us every single day. We love you right up to the moon and back babe. Happy Fathers Day to one of the best ones out there ❤️

We are loving being home and together as a family. Seeing Everett quickly settle back in to his home and his environment has been pretty cool to watch, now if we could only get him to nap a little bit better, all would be well in the world. 😂 For those of you still following along and praying for Everett, our gratitude for each and every one our you of is bigger thank we can ever properly put into words. And to our CHLA Rehab family…we miss all so very very much ❤️

-Sara