Where to go from here....

It's definitely been a while since our last post but as Donovan's rehab has progressed, we've had many thoughts to share with anyone else considering this surgery. We've just been awfully busy with therapies, school, kid's activities, and all.

First, the question we get from everyone... how is Donovan doing? He's doing amazingly well! Just look at him peddling his way to the finish line at the DeVos Children's Bike Race in downtown Grand Rapids in September. Donovan joined big brother Carl to give it his all across the bumpy brick roadway. As we've always recognized, his personality- his determination and good spirit- have ushered him through the hours of hard work he faces weekly. He continues with three days per week of outpatient physical therapy and receives a few hours of school based PT and OT through an Early Childhood Learning program at our public schools- thank you Karen Hite, Ramona Murray, Ms. Judy, Tom and the rest of the team that serves him at Meadowridge! Doing well means he is functionally able to go just about anywhere he wants while walking without a walker or crutches. He can keep a rather quick pace- sometimes to our surprise and is still just as determined as always with most times expressing that he doesn't need help and will do it himself.

For any parent or individual considering the SDR, I think it's also important to understand the things that continue to catch our attention. Before the surgery Donovan was walking without assistance. He was able to get around and even run pretty darn quick when racing Emma, Carl, or friends. The fact that Donovan is moving as well is amazing considering the changes to his central nervous system but we weren't after just having him walk again... our goal was and is to give him a better gait, more stability, and more freedom from increased tone each time a growth spurt happens. We know the spacticity is less prominent in his gastroc muscles (around the ankles that had kept him from placing his foot flat on the ground). We can feel it when doing his stretches and we can see it when he takes slow and deliberate steps as opposed to spontaneous you can't catch me steps. We believe he is more stable, a little early to say for sure since he is still in the process of gaining strength. He definitely falls less than before the surgery and we are so very thankful for this! We have however, recognized that his gait has not improved to the degree that we hope for. When moving quickly he has reverted to his old habits of being on his toes and seems to be turning his right knee in more than he had in the past. But, we are still hopeful that we can counter these habits as Donovan continues to gain strength and we make changes to his AFOs in order to force him back on his heels more. So, we have asked those that guide us, his PT, neurologist, and orthopaedic surgeon to assess him more frequently with us and work together to make recommendations for changes to his orthotics, PT, treatment, etc.

As much as I admit I have quite a critical eye for his progress, I also remember Donovan's neurosurgeon warning us to be patient, that it takes a full 12 months before we will truly see the gains. We just passed the 6 month mark.