When Sam first came home he was able to stand for only a brief moment but long enough to allow a transfer from one point to another with assistance. He required assistance to go from sitting to standing and he had little to no movement in his left leg. After 1 week I taped him working on his standing and his exercises.
It was amazing to see the improvement in his standing and his movement. My favorite part is the smile on his face when we finally count to 10 while he is standing. This little boy is working very hard attempting to make his left side move while strengthening his right side which was originally the side that was weaker due to his brain injury. My need to assist Sam with his movement caused my back to seize up and Sam and I both had to rest for a couple of days. But what you see in the video is only a small part of our day.
So what does Sam's day look like? Sam is usually beginning to wake around 6:00-6:30 because he has gone all night without pain medication and the pain begins to wake him up so I get his pain and thyroid medication. Sometimes he can fall back asleep and other days he's ready to get up for the day. He uses a urinal while in bed to empty his bladder. I take out his hip extension bar and help him to transfer from his bed to the wheelchair. I then wheel him into the living room and help him transfer from the wheelchair to the recliner. After getting his pillow situated for his leg, covering him with his blanket and giving him the control for the Wii so he can watch Netflix I head to the shower. After a quick shower I'm ready to make Sam his gluten free, healthy breakfast and I record any and all medications given on an Excel spreadsheet. Sam is able to have pain medication (oxycodone) every 4 hours or as needed, Valium for muscle spasms as needed or before PT, stool softners to assist with the constipation the first 2 medications cause and then we added an antibiotic for some possible pin site infections that had to be given every 6 hours for 10 days. Add to this his 17 different supplements (each with varying daily quantities), exercise/PT and you begin to see why I have everything on a spreadsheet...I just can't keep that much information straight on a daily basis. Before Sam eats his breakfast I give him a scoop of coconut kefir and a scoop of fermented vegetables to help with his digestive tract and immune system. I mix a calcium supplement into his orange juice and I give him 9 drops of Vitamin D. After breakfast I get the first batch of supplements and a stool softner into Sam with apple sauce. When we have finished with the vitamins we do our first set of stretches and sit/stand with the walker.
I give Sam a short break and time to enjoy Netflix as I get his homeschooling activities together. Due to Sam's pain issues and his pain medication we are simply reviewing things Sam already knows. You learn to pick your battles and I don't think anyone is really receptive to learning new things when there is pain or effects from medication involved. Here is Sam working on his reading/comprehension with something he really likes to do and then an attempt to do some math. Sam struggles with math day to day, we work on math problems and bringing math into his day to day activities as much as possible and yet there are days like the one on this video where he either chooses not to attend or just tries to guess his way through. When I see that struggle I assist and go into more of an input mode than an extraction of information mode. I also like to show both good and bad homeschooling scenarios with Sam...I don't want anyone to think that Sam is really, really easy to work with or that he never fights or refuses to cooperate...it just depends on the day and his mindset. When I first started homeschooling, every day was a challenge but when Sam realized that I wasn't going to give up on him he decided to cooperate...occasionally.
Sounds like a really fun day...right?? What I described was a good day, on bad days we alter as needed except for the medical portions that are a must for each day...medication and pin care.
Sooo...how do I do this and remain sane??? Through my faith and by watching Sam lead me through. If he can get through each day and still manage to smile and laugh along with some yelling and complaining with the pain and discomfort that comes with this type of procedure and rehab...what do I have to complain about?? It hurts me to know he hurts, it frustrates me to have to put him through this but I know I am most useful to him if I am strong, compassionate, patient and fun. Each day I tune into Sam and let him guide me, if the pain and discomfort is high we snuggle more and do less, if it's a really good day we push a little harder, if he's just tired and worn out he naps, if he's bored we find something to do. Yep, right now my day revolves completely around Sam and I try to throw in keeping track of Jeff, Ben and Danielle, feeding my family, walking my dog, cleaning my house and finding a little time in between it all to pray, to breathe, and to just dream. Dream about Sam walking again....dream about Sam having little or no pain on a daily basis...dream about Sam riding his bike again. I can get through 4 months of anything with dreams and goals like those. Each day Sam gets up and somewhere, somehow he finds a strength within that gets him through whatever his day is going to throw at him and each day he smiles, he laughs, he tells me he loves me and I dig deep into myself and I decide to do the same. Good Night everyone!