Im tellin ya, sometimes it feels like the time is just flying by and other weeks (like this one…), it feels like time is moving slower than a snail. We got news early this week that they are extending Everett’s admission here at CHLA by an additional week, we were assured that this is a good thing and it means that he is making such good progress that they really feel that he would benefit from an additional week of intensive therapy. However, for this mama who hasn’t slept in her own bed in weeks…adding an extra week kinda stung a little bit. Plus that means an additional week away from my husband…double sting. But at the end of the day, the only thing that matters is that Everett is receiving the therapy he needs in the environment that will allow him to be the most productive. So our new discharge date will hopefully be May 29th…which means we will be home just in time for Fresno to start getting really hot for summer 😭.
PHYSICAL THERAPY the second half of this week focused a lot on trying to get Everett’s right leg to initiate some movement on its own. Whether that was a walking type motion or just working on getting into a tall kneeling position and getting his right leg underneath him. He actually had a few occurrences where he initiated a stepping motion with his right leg, almost like he was trying to walk! His therapist Kristin and i both saw these at the same time and looked at each other like “did that really just happen?!?!”, and then he did it again! It was so cool!! We are seeing a lot more active movement in the upper part of his right leg which is really encouraging…the therapists say that this means that the big muscles in the upper part of his leg are waking up and starting to get signals from his brain again! He also was able to some almost unsupported standing during a few of his sessions this week! The therapists get him into a standing position and then he holds onto a tall round tumble form for support and usually they have to give his right leg quite a bit of support but two separate times this week he was able to stand and support his own right with very little assistance from the therapists! They have also started trying out a new walker with him this week. This one allows him to be in a more “anatomically correct” walking position. Trust me when I say he looks so dang cute and proud standing up in this little walker. The therapists are really happy with the progress he has been making and are very optimistic about his progress going forward.
OCCUPATIONAL THERAPY has been continuing to work with Everett on weight bearing through his right arm and focusing a lot on trying to keep the muscles, especially in his hand, from tensing up or shortening and causing his arm to become contracted. We are keeping a very close eye on his thumb on his right hand as it is getting a bit hard to move, we are hoping that by increasing the passive range of motion movements in his hand and possibly introducing another little thumb splint type thing, that we can prevent the thumb stiffness from increasing. OT also did art therapy with Everett this week and helped him make Mother’s Day crafts! If any of you know me personally…you know I love handmade gifts, they just have so much more meaning (especially when they are from my child!). They asked me not to go to two of his sessions this week because they were making surprises for me…as much as I don’t like missing his therapy sessions, skipping these two gave me a chance to shower and drink hot coffee two days in a row! How did I get so lucky?!? 😂 The little Mother’s Day art projects they helped Everett make were just the sweetest things and melted my mama heart. I will treasure them forever. Please continue to pray for Everett’s little arm to continue waking up and that we are able to stop or reverse the progression of the “claw hand”, we know that he will most likely always have weakness and loss of mobility in his right forearm and hand due to the surgery, but we just want to do everything we can to make sure that hand can at least function well as his “helper hand”.
SPEECH THERAPY’s focus has finally been able to shift from feeding to communicating. With Everett needing so much help the past 3 weeks with his feeding they really hadn’t been able to do a whole lot of traditional speech therapy activities but, now that he is eating so well and doing better with his drinking, they feel comfortable moving on to working on helping him learn to communicate. One quick tidbit on the drinking thing though…Everett finally decided he wanted to drink out of his straw cup again, and true to form, he did it on his own timetable. He had been fighting his sippy cup for a couple days so I just, on a whim, put his straw cup in front of him and he just started drinking from it! 😳 Good job mister bubba!! Ok, back to speech therapy…they have been focusing a lot on sign language with Everett this week. Their goal with doing signs first is that, even if Everett never gains the ability to verbally communicate, he will at least have a way of expressing what he wants or needs to us. Because the left hemisphere of the human brain typically controls speech and language communication, we aren’t sure what (if any) permanent language deficit Everett might have. Our hope and prayer is that his language is able to migrate to the right hemisphere (from what I understand, this is pretty common is very young children who have this type of surgery…thanks to the neuroplasticity of their still developing brain), however in the meantime we want to be able to give Everett a tool to “talk” to us. This week Ashley has been working with him on “more” and he’s actually picking it up pretty well! I think next up will be “eat” and “want”. Looks like Brandon and I need to start learning sign language in our spare time!
The biggest highlight of the week was definitely Everett’s 2nd birthday on Saturday! I had a really hard time being ok with him having to spend his birthday in the hospital, away from his dad and our family and friends. Everett’s birthday last year was right after he was diagnosed with Infantile Spasms so it was definitely not the 1st birthday party we had planned for and now this year spending his 2nd birthday in the hospital…I’m tellin ya this kid deserves a blowout bash for his 3rd birthday! 😂 I worked hard to make the best of the day though, I had bought some decorations and the hospital gift shop was kind enough to blow up some balloons for me to make his room a little bit more festive. We wore party hats and so many of our wonderful friends and family called, texted, and sent video messages wishing Everett the happiest of birthdays. He even got to celebrate via FaceTime with MiMi and Bompa in Grass Valley and Uncle Brett, Aunti Lyndi and cousins Mallory and Dylin back home in Fresno. Even the sweet nurses and care partners on the unit all came in after his nap and sang to him and brought him a card and gifts. Everett won’t remember spending a birthday in the hospital, but this mama sure will remember and these sweet, kind gestures from people made the day just a little bit brighter. I also want to take a minute here to thank everyone who has sent Everett gifts throughout this whole process. So many lovely people who have been following his journey have been so generous to our boy and we can never truly thank all of them enough. I am going to include a few pictures of a beautiful handmade quilt that we received from my Aunt “Hootie” in Texas and the sweetest little handmade octopus from my high school choir teacher and dear friend Mrs Hayes. The octopus has little tags on the bottom with all of Everett’s nicknames written on them as well as words like “strong”, “brave” and “warrior”. Please know that if you have sent Everett a gift at any point during our journey, we are so very thankful for it and for your love and support of our family.
We had a very relaxing Mother’s Day on Sunday with only a few meltdowns. Again, not the ideal way to spend a holiday but we made the most of it. We played with his new toys on his floor mat, worked on tall kneeling and, you guessed it, watched Sesame Street (I’m pretty sure by now I know EVERY SINGLE Sesame Street from the last 2 seasons episode by heart 😬). We also got some good mama snuggles in throughout the day. I am so very thankful for this little boy who made me a mama and has taught me so much about being strong and brave. I am also so very thankful for my mama who has been there for me my entire life but especially over the past 2 years. She has loved and supported us through the hardest two years of our lives and we are forever grateful for her unconditional love for us and especially her love for Everett. Their relationship is one of my favorites, he truly does love his MiMi! Happy Mother’s Day to all the mamas out there, but especially to the wonderful tribe of mamas who have supported and loved on Everett and I over the past month and a half. The love and support I have received from the mamas in the epilepsy surgery community has been such a lifeline for me during such a difficult time. I am so thankful for my “Holland Tribe” mamas…you gals truly are the best.
We love you all!