People ask me all the time how David is. There is an added interest since 2018 was a pretty interesting year for him. Between almost losing his home and his major spinal surgery, people are curious and rightly so.
David started back to school this year in his wheelchair. While the surgery was blessedly easy and his recovery was smooth, getting back to baseline has not been as quick as I had hoped. Much of this could be because I had the wrong expectations having never been through this particular surgery before. Don't get me wrong, he has made great progress, I just didn't realize how long "back to baseline" could take.
Before surgery, David was using his walker almost exclusively at school with only the occasional wheelchair ride to and from school and when long distances were involved. This was amazing except for the fact that because of his spine, his body alignment was horrible and the more he walked, the more he threw out his hip and undoubtedly was causing himself a great deal of pain. Since his surgery though, getting back to walking with his old walker has been an uphill battle. Now that his spine is so straight, it pulls his already tight hamstrings even tighter. This makes walking for him with the walker he was using, almost impossible. He also can no longer get down on the ground and crawl anymore. As bad as his crawling was for him, it actually did keep certain muscles fairly loose.
When his actual walking PT began, we quickly learned that about the only thing his old walker was good for was to help him strengthen his legs by using it to hold onto while he would stand up and sit down. The problem was, he knew he had lost strength in his legs and he himself did not trust them, so he fought the "sit stands" like the plague. Blessedly his physical therapist was able to help get him a new walker that is much more adaptable to his current situation and can be made to accommodate any changes that come as he gets less tight and builds more muscle.
He was also able to get back on his bike, something he dearly loves and which helps him a great deal. Unfortunately the bike was an old bike, which was not in great shape to begin with and since his surgery, has been more difficult for him to use. Still he gives it his all and it gives him a lot of joy to ride it.
Since starting back to school this year, it has been one of David's healthiest years of all time. (Yes, I am looking for a big old piece of wood to knock on as I type this). So far his only hospital time has been as an out patient back in October for his Botox injections and he has had "the crud" a couple of times, but for the first semester he has only been gone about 10 days so far. By this time last year he had been out about triple that. The fact that his seizures are very well controlled now (only about three since last April) and that we work on his immune system through the foods he eats, seems to have made a huge difference in his overall health.
In September, my baby boy turned 18. It was so bittersweet to celebrate this birthday with him. The sweet part was that this young man who left the womb at 2.2 pounds and was only 12 inches long and not expected to make it out of the NICU, turned 18. It truly was amazing. He is basically in good health and other than his chronic issues, he does very well. The bitter part was that my baby was turning 18. It truly didn't seem possible and there was a bit of sadness that his dad and his Grandma Mary who both adored him, were not here to see this bona fide miracle take place. They would have been just as excited as I was.
So a new school semester has started and my young man is still working on getting back to baseline before the year mark of his surgery. He and I work on his core daily and his leg strength. Weekly he sees his amazing PT and his school and teacher are so good about giving him a workout everyday. It is a team effort but it seems to be working. He will also be due for another Botox injection in February which always turbo boosts his abilities.
This past year has been a year of upheaval (more for me than him since I didn't really allow the whole house thing to touch him) and a year of fighting through surgery and recovery. It has also been a year of change as no matter how much I wanted to keep everything absolutely the same for him post surgery, some things were just not possible. That being said, he has adapted fairly well for the most part as he seems to understand that since his surgery, things are just a bit different.
Going forward we will continue to work on his strength, his muscles and his ability to walk. We are also working on his communication and his understanding of when it's appropriate to be loud and when we must be quiet. I really would like to get him to the point that I can take him to church again. That particular outing hasn't worked well in several years, but I am hopeful.
Currently we have no expectation of anymore BIG surgeries. He will continue with his Botox and from time to time he will have to have his shunt, VNS and Baclofen pump updated, but other than that, if the seizures continue to play nice and his immunity stays strong, the rest of this school year looks to be one of his best ever.
Through all of this, we never forget the people who helped us keep our home, those doctors and nurses and EMS people who give their all each time David is in their care, his amazing physical therapist, his equally amazing teacher and his para's past and present who have given their time, care and love to my special young man. Without all of you, we would be nowhere close to where we are today. We ask for prayers for a continued amazing school year and David and I wish you all a wonderful 2019.
Until next time.......
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