Here we are again, face to face with uncertainty. February 22, 2019 was exactly 14 months since Robbie's right-semi amputation and yet, faced again with a decision NO PARENT should make; having to amputate further up this leg to provide Robbie the best quality of life. Don't under estimate Robbie, he is a fighter and survivor through and through. He wears an "S" on his chest and he is unstoppable. What kills and hurts deep down to my core is thinking about his quality of life down the road. Will he eventually be in a wheelchair, will he need more surgeries, amputating, and mutilating his body until there is nothing left. We know that the enemy (his condition) is unstoppable, their is no science or medication to stop the overgrowth syndrome. It could stop right now as well as it could continue until his last breath.
I know that we did not do anything wrong, nor a punishment, but boy It sure feels like it sometimes. In a heartbeat I would trade places. Yet, I also know that isn't an option. There are so many thoughts running through my mind that I can't type fast enough to convey them all.
This past Friday, February 22nd, Robbie and I took a trip to Shriner's Hospital for a follow-up with his medical team. The rate of growth on his right side has been faster than they expected. They were shocked to say the least. Picture this, if you may, Robbie's right leg looks like an exclamation point. At bottom of his leg, the residual, is what is left of his right foot. It looks like a ball, a softball. During his initial surgery, they kept his heal pad and heal skin for weight barring and ability to walk with and without a prosthesis.
During Robbie's examination, the doctor shook and scratched his head not knowing what to say. Well, he did, he just didn't want to say what Steve and I have known all along. So, I made it easier on him or maybe easier on me. Who knows, but trust me, you don't want to be on my receiving end.
I told him: "Go ahead and say it." With caution he said, "We may have to amputate ....... blah, blah, blah......" And that is all I heard. One thing is to be expecting the news and the other is experiencing it once it's happened. Once the initial shock was semi gone. I started listening and asking questions.
One thing was made clear, Debulking, liposuction if you will, is not an option as the tissue in the mass will continue to grow and the number of debulking procedures could be endless.
According to the Doctor, having the amputation would have better results, as it would be mid-calf. Meaning that, should the overgrowth continue as it has, it would not hinder Robbie's day to day or ability to engage in any physical activities in the future. As his leg will continue to overgrow, there will be no extra residual, like the over grown mass at the bottom of his leg, impeding his daily function and ability to build a prosthetic that would be helpful. Picture again, if you may, if we leave the period at the bottom of the exclamation; That period will continue to grow, thus hindering his ability to ambulate. Further more, the specialist on his team will not be able to keep up with the rate of growth and build a prosthesis big enough that would be able to help Robbie. Ideally that period at the end of the exclamation is what needs to be amputated. However, the bone needs to be protected and at that incision point there is no muscle or tissue to cover and protect the bone. Thus mid calf, they can pull the calf muscle over the bone and protect the it, serving as weigh baring, and able to comfortably use a prosthetic. (Dang, on a side note, who I'm I trying to convince about a second recommended amputation? You or me? As I am typing this paragraph, I am processing and seeing the logic or rationalizing the idea to move forward with a second amputation. It's not an easy decision regardless.) I wish I knew what Robbie was thinking, feeling, or wanting.
As we were siting with the medical team, they appeared to be sure of what they recommended and wanting to move forward. I put the breaks on that puppy real quick. It's not a decision to be made lightly. We needed to go back home, talk it over, and make a decision in the best interest of Robbie. In the meantime, he has been fitted for another prosthetic and they have modified his current one so that he can wear it comfortably while the new one is being built.
We go back to Sacramento in 3 weeks to pick up his new prosthesis and again in August to meet with his medical team and discuss our decision. We could meet sooner depending on the rate of the overgrowth.
His 3rd Birthday is 2 freaking weeks away and instead of planning for a celebration, we have to think about our finances and prepare for what's ahead. If and when the surgery happens I will most likely be out on leave through his recovery and we all know that paid medical leave doesn't pay to cover monthly expenses, let alone cover the trips to Sacramento post op. Please stay tuned as we will announce Fundraising events soon.
As for the our last post 6 month ago. If you remember he was diagnosed with Mild-Autism in August. It took 5 months from the time of the diagnosis and the start of ABA therapy. He is doing amazing and his behaviors are being extinguished. Yay!!!! I want to give a huge shout out to the wonderful, supportive, and loving, daycare staff, teachers, and parents at MVP Preschool (formerly First Steps Preschool and Daycare) for their support and PATIENTS with our son. He is definitely a charmer and gains the love of everyone around him, but those few months before the services arrived he was not nice to his friends or staff, THANK YOU, THANK YOU, THANK YOU for treating him like everyone else, redirecting him, teaching him, and loving him just the way he is. We will forever be in indebted.