It is hard to imagine that we are coming up on the one year anniversary of Bryce’s SDR. It was July 9th of last year when we were in St. Louis nervous and scared for surgery number 13. Most other families who have had this surgery celebrate the anniversary with a party. I wondered if we would end up doing the same. But if I am being honest – I really don’t care to celebrate the surgery. If I am being honest I would say that I am not sure how much the surgery really helped Bryce. If I am being honest I would say that I envy others who had more success with this surgery. I had hoped that SDR would have more of a positive impact on Bryce and his physical abilities. Don’t get me wrong – I know that Bryce was physically “more involved” than some of the other children. I never expected him to be able to walk within a year like some have done. Deep down I really do believe SDR did help Bryce (just not to the extent that we thought it would). It is hard to say what changes might have happened over the past year had Bryce not had the surgery. Relieving the spasticity was successful – therefore making the surgery a success. Our success has just been defined differently.
Bryce still has very high tone in his legs and one leg is beginning to really turn in at the knee. Tone is not the same as spasticity and has to be addressed in a different way. Now we have to make the decision on addressing the tone. There is a surgical procedure that can be done to help lengthen the muscles as Bryce’s bones have grown at a faster rate that his muscles. The ortho surgeon would go in and make “x” like incisions in the muscles. This will allow for the muscle to be stretched. As you can imagine it is a painful process once the stretching begins…. But the surgery itself is less invasive than SDR.
So this is where I once again struggle. I am trying to be realistic – Bryce probably will not walk and if he ever could it would be in very limited environments. I had gotten to a point of acceptance – I had gotten excited to talk about power wheelchair training and all the places he could go with power-wheels. Then St. Louis calls to check on Bryce and they really do feel like we are in this “Window of opportunity” since he is only 5 years old. They feel we should move forward to maximize the full benefit of having the SDR.
So – for another round of emotions – I had mentally gotten myself to a place of acceptance. I am right back at being confused about what to do. I can tell you that there is NO ONE OUT THERE that wants to see Bryce make physical gains more than Matt and I. There is NO WAY we would ever want to hold him back from that chance of making those physical gains. I don’t want to seem as if I have given up – this is something WE would NEVER do. EVER!! I am just trying to find that balance of accepting and moving on. It is hard for me to put him through so much for the “what-if’s”. I wish that he was mature enough to consider the option and let us know what he would want. I would have to think though that he would want us to give him every chance. It is just so hard when you are making the decisions but he is the one having to go through all the pain and all the rehab. I know one thing for sure – I do not want to be asking myself in 5 years “what if we had just tried it.”
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The W.E. Believe Network will be hosting a Quarter Auction tonight and have chosen Bryce to be the benefit recipient of tonight's event. It continues to amaze me the amount of love and support that our family has received. From people that know us and those who don't - I thank each and every one of you. We have had an army of people behind us during this journey and many of those people have been there since the beginning. I am excited that tonight I get to see many of those people!
"Life isn't about waiting for the storm to pass, it's about learning to dance in the rain."
