Hello Everyone, Dad is in “The House” aka the hospital! 😢🥰 Sad face for Everett having to still be hospitalized but lovey face cause I finally got to see my boy!!
Thanks to the slightly more relaxed policies of Children’s Hospital Los Angeles, I was able to switch with Sara and spend Friday night looking after my sweet boy, plus this meant that Sara got a much deserved night of rest and relaxation! It was so very heartwarming to get to be with Everett after 11 long days apart. He has been through so much and I would have given anything to be able to be by his and Sara’s side through all of it. (Thanks a lot COVID-19…you’re a real jerk!)
Our night together started in a relaxed manor, as he was snoozing when I got to his room. Overall he had a pretty good night, a couple rough stretches where he was unable to get comfortable and it took some time to get him back to sleep but overall most restful than his previous three nights. The environment in the rehab unit here at CHLA is so much more conducive to rest so we are hoping that Everett is able to get a little bit of his normal routine back while we are here, at least as far as sleep goes.
His second day at rehab started with some half asleep play with his speech therapist but he participated well and his ST (speech therapist) mentioned she should change his goals for the week based on how good did today. His second round of the day was slightly less productive due to his need for sleep, which he really wouldn’t get until his therapies for the day were over. They weren’t joking when they said rehab was intensive!
Occupational Therapy (OT) today was productive, he did a nice job tracking objects with his eyes and reaching across his midline to grab them. He also showed off his drumming skills and his need to taste ALL the objects. Physical Therapy (PT) was pretty successful also, the therapist said he did a great job at holding his core and head stable while they played. She was also able to get him standing in an assisted position so that he could bare some weight on his right leg.
On to the subject of food. For those of you who may not know, this boy loves him some food. 😂 Since we got the all clear from the OT yesterday to start giving him actual food in pureed form, he has been eating up a storm! He ate well for breakfast and lunch and only had to be given about twenty five percent of what he had been getting in terms of supplemental toddler formula through the dreaded NG tube. He ate great for dinner, having consumed the majority of his food by mouth and required no additional formula! This is a huge step in the right direction toward getting rid of the NG tube for good!! Food highlights for the day were Vanilla Greek yogurt for breakfast, beef ravioli and applesauce for lunch, and the big hit of the day was Chicken leg for dinner, all items being purées of course. I know what you are thinking, why eat when you can just drink your dinner. That statement has a different meaning for the adults. 😂
Overall our day spent together was great. I am so proud of this little boy and all that he’s had to endure over his lifetime so far. His perseverance and determination to get through his therapies, all the poking, prodding and adjusting gives me such a great sense of pride and hope for his future. I just have a feeling that this little warrior boy is going to make some serious strides over the next handful of weeks, so watch out he’s going to progress quickly.
I would like to take this closing opportunity to thank all of those who have helped, supported, prayed, donated and loved both Sara and I, as well as our brave, little warrior boy through this entire process. Everyone’s love and generosity has been at times overwhelming (in the best kind of way) and we couldn’t be more grateful. So THANK YOU!!!
Lastly, it wouldn’t be a proper post from dad without my best dad joke…. So here it goes…
What is a pirates favorite letter? ……
You might think think it would be R but,
Gnarr it be the C!! Lol 🤣🤣🤣