We hope that all of you had a Happy Thanksgiving! We are beyond thankful that the four of us and our two fur babies got to celebrate another holiday together. Connor has been sleeping through most of the day lately but we had an extra special Thanksgiving this year. Jake created “the menu”, helped me make dinner and set the table. We have been having fun spending time together in the kitchen! We loaded our plates up with delicious food and pushed sleeping Connor in his wheelchair up to the table. We timed his afternoon feeding so that it would coincide with dinner and we could all eat together. It was about 4:00 in the afternoon.
Just before we started to say grace, Connor woke up for the first time that day and not only was he alert and in a great mood, he was vocal and wanted to party. 🙂 He got a little taste of his favorite cranberry apple sauce and pumpkin pie. As I was sitting on the couch next to Connor in his wheelchair, he said “Ma”, grabbed my hand with his little hand and pulled me in close to him. Later in the day, he did the same thing with Tom. He said “Da” and pulled his hand close while Tom sat on the floor next to his wheelchair for a long time. Connor loved spending time with big brother Jake too! We will always cherish these special memories together!
For the next two days, Connor was more awake and playful than normal. It’s as if God knew we all needed that. We visited friends and spent a lot of time at home lounging around, eating leftovers, and enjoying endless cuddles. We played games and watched movies and Jake played the piano with Connor.
And then, for some reason, Connor was up all night long and had a really rough night. He is back to sleeping through most of the day, only awake for short periods of time. We are reluctantly trying to adjust to what we feel is the “new normal”. He had his Botox injections a few days ago to help decrease spasticity and slept through the entire thing. He has an upcoming 24 hr home EEG to monitor for any seizure activity. We are in the process of trying to get PT at home because it is getting to be too much for him to go to PT, even though it is only once a week. We feel the weight and fear of what is ahead whether it be weeks, months or years away but at the same time our hearts are filled to the brim with love, faith, hope, and gratitude. Batten Disease can never take those things from us.