They warned us that this surgery would set Hunter back, but it will be the only way he can progress in the future. Hunter is attending inpatient physical and occupational therapy a couple times a day now. I am posting a video of Hunter working with his therapists. They explain the plan for now.
I picked Hunter up for the first time since the surgery. I can't explain how good it felt to have him in my arms again. I cried happy tears. I don't want to move him around a lot. I can only imagine how sore his back must feel. He is being such a trooper and I'm seeing improvements with him every day.
As I said before, our ultimate goal, is to see Hunter walk without assistance. This won't be for awhile. He is not allowed to use his walker. They don't want him to develop the habits he had before. Instead, they want to re-train his mind to move without tone. After surgery, these movements don't come easy. Hunter has a long road ahead of him and they have to build his strength from the head down.
These setbacks can be frustrating. He doesn't understand why he can't just get out of bed and stand up. He can't understand why we won't let him position himself in old positions. I can't imagine moving a certain way my entire life. Then, all of a sudden, someone stopping my every movement and telling me that I'm doing it wrong and teaching me a new way of moving. This surgery has thrust my child back to the start, back to the days of infancy, when he couldn't sit up, stand up, or walk. Hunter wants to crawl on the floor. But, he doesn't know yet that he can't. It's hard to keep him contained. My child has always wanted to just go. But, I do my best to keep him occupied.
A present arrived for Hunter today. He was so excited. It's his new wheels. He won't need this forever. It is only temporary while they build up his core strength first and get him walking in the future. But, he was so excited. He sat in it and learned quickly how to maneuver around. He was tearing up the 12th floor of Mott's, just like I warned the nurses about.
I decorated Hunter's room with his artwork from school. One of the workers came to us and offered us an opportunity we couldn't refuse. Mott's wanted one of his artwork to hang up in the hallway. Later, it will go to a senior center to cheer up an elderly person in a nursing home. Hunter donated one of his pictures. Below is a picture with Hunter in his new wheels. He is sitting underneath his artwork framed in the hallway of the hospital.
I have been getting many messages wandering how I'm holding up. I'm holding up okay. I'm extremely tired and haven't sleep well. It's so hard to leave the hospital at night. My home is with Hunter and leaving him behind breaks my heart. It's an empty feeling that only a mother could understand. I fell asleep behind the wheel one night and hit a curb. It made me realize that I should go home earlier and get my rest. So, I've been doing that. But, I'm back up at the hospital usually before 7am and stay until after Hunter falls asleep at night. Dad stays with him all night and that makes it easier for me to leave, but it is still very hard.
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