So, blogging has not been high on my priority list lately, as there has been so much going on. My big focus lately is on my now 8 year old son, J. He is going in for surgery in two days to manage some damage to his legs from his cerebral palsy. His femur has twisted due to the tension in his legs and it has caused the femur (bone int he the thigh) and his tibia (shin bone) to grow twisted. his left foot now faces his right foot. This is putting a lot of pressure on his hip and it is in danger of dislocating and destroying the hip joint. So they are going to have to cut the femur, turn it, re-angle it into the hip socket, and then put it back together with plates and screws to hold it in its new position.
They also will be cutting his hamstrings and hip abductors as well as a third set of tendons on both legs to lengthen the tendons and hopefully relieve pressure on both hips. The right leg is not as bed so they are just doing the tendons and not the bone work, and on the left leg they are going to leave the tibia for now, as they believe he will need extensive surgery on the foot at a later date, and want to see how this surgery corrects some of the issues before they make decisions a bout what to do with the lower part of the leg and the foot. The primary reason for the surgery is to save the hip and prevent traumatic dislocation. The hopeful additional benefit will be that he will have more control over his legs with the added flexibility, and that he will be able to walk better.
The cutting of the hamstrings will allow him to actually stretch out his legs at the knee (something he has not done in years), and maybe even stand up straight by dealing with the tendons both the hamstrings and the tendons at the hips. The tension in the tendons has caused him to become more and more bent at the hips and legs, so it will be a new experience for him to walk upright (he walks with a walker now but always on his tip toes with knees and hips bent). If he can straighten his legs, he may be able to walk on his feet, and this have better balance and more ability towards independent mobility. He will still need his wheelchair for any distance walking as it is the combination of his physical challenges and his lung/respiratory issues that make him unable to walk long distances like going shopping, going to the zoo, fair, or amusement park, or for walks more than 1/2 a mile.
The surgery is always a risk, as he does have medical challenges with his lungs, and the surgery will have under anesthesia for a few hours, so my first concern is the life and death risk of anesthesia. But we have put off the surgery for as long as we possibly dare to, as he is in pain often due to the pressure on his hips...his legs and back hurt often, and he is danger of dislocation, which would be so much more complicated and difficult and may destroy his ability to walk completely depending on how much damage is caused by it). So we are here, at the edge of surgery, and with a long recovery for him. He will be in a full Spica cast (often called a body cast) from armpits to ankles for 6-8 weeks.
We have been rearranging the house, getting his video games and books and toys ready, modifying our schedules and so on in preparation for his next few weeks. Once the pain subsides and the need for pain meds is no longer (the doctor says should only be the first week), then he will be stuck in this cast and unable to do things. Hopefully he will develop a greater appreciation for the abilities he DOES have now, as he gets so angry and frustrated that he can not run and move like other kids (Josiah is triplegic--or a combination of left hemiplegia and para paraplegia--so his left side is affected, and his lower body (both legs and core muscles)). So even with his walker, he struggles, and he can not hold on to things like most kids, and he is so acutely aware of his challenges. So he has become a perfectionist which gets int eh way even more, as he melts down when he can not be the best or do things exactly perfect. Even if he is winning in a game, if he misses a score he gets so angry at himself. I am not sure where all this comes from, though the neuropsychologist believes some of it stems from his brain damage, as many people with brain damage feel out of control of their lives and so try to be prefect, but with damage to the frontal lobe, have less control over their emotions. So it creates big issues in emotional challenges and behavioral outbursts.
In some ways I am hoping that being so drastically restricted in motion by this cast, that it will help him lay new brain pathways that help him be more comfortable with himself and his abilities. He is such a talented and amazing kid with so much to offer both himself and the world around him, I am hoping he can learn to shift his focus from this obsession with what he can not do, to a focus on what he CAN do. So who knows, maybe this surgery will have some added benefits that are more indirect than the reasons for the surgery itself.
I am still very nervous about it, so we could use some prayers and good vibes and energy being sent his way--focusing on a successful surgery with no complications, clear, strong breathing coming out of anesthesia and his body's ability to handle the anesthesia and the stress on his body, minimal pain and good pain medications for him, speedy healing and maximum benefit--both physically and mentally, and patience during the long recovery in the cast. I will try to post again a few times throughout his recovery, as I will be having to start working from home again as I do need an income during this time period, but he needs me to be here with him and available, so back to trying to find assignment based articles again, and getting back to writing my book and hopefully self-publishing by the end of the year.
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