It has been some time since I have written in this blog. Liam has grown older and wiser. His sweet baby face is now replaced with a more defined jaw line, mature smile, stellar teen mustache and dashing good looks. Liam has worked hard and jumped through many hoops to earn his drivers license and enjoy the benefit of that freedom of mobility!
Degenerative disease is devastating. When Liam was a preschooler we grieved so many ‘what ifs’ about his life. We didn’t know what we were going to see happen to his body. That not knowing has been so exhausting and heartbreaking. Now we know what Muscular Dystrophy has done.
Liam requires Spinal Fusion surgery in January. We have been told to expect a possible 2-5 day stay in the ICU after his procedure. He will then be out of school and all other activities while at home for 4-6 weeks as he recovers. Liam has already missed many days of school (for 11 doctors appointments) since the school year started, and it has been a challenge to stay on top of his work. He will receive 5 hours a week of instruction from a tutor while at home healing. I will be taking a couple weeks off work to care for him during this recovery. Liam will then require physical therapy to learn how to balance and walk again after he has healed. Liam will have limited range of motion after the surgery, but he chooses to focus on his increase in height (a possible 2-3 inches as a result of the surgery!).
You may know someone who has suffered from scoliosis and required Spinal Fusion. This is not a routine surgery but it’s not uncommon. The terrifying reality is that for someone with Liam’s added medical complexity it is a very dangerous surgery for him, and he will have a long and painful recovery. We feel confident in the hands of his team at Cincinnati Children’s, but we are still very nervous as any good parents would be.
At the same time we are preparing for his recovery we are now at the point where Liam requires a fully accessible bathroom on the main level of our home. Liam has requested a walk in tub in order to take warm soothing baths to ease the pain he feels in his muscles. The tub alone will cost thousands of dollars. We are next in line with our amazing contractor and feel so lucky to have the opportunity to give Liam what he needs to remain as independent as possible while in our home.
Thanks to our supportive friend and Playschool parent, we now have a Meal Train established to help us along and focus on Liam’s needs. If you find yourself in a position to help we would be ever so grateful.
The cloud of unknowns and the pain of anticipation are two things we are familiar with in our lives. The relentless, unfair, and painful reality of Muscular Dystrophy means that this hurdle will not be our last. We are only as strong as the support we receive, so thank you for all your love over the years. It means the world.