Friday, November 4, 2011
Thinking, Praying, Researching!!!
"The inner mechanations of my mind are an enigma." Patrick Star from SpongeBob.
Yep that's right I am quoting an animated cartoon character for my blog today. But honestly this quote works for both Sam and I at this point. I have always said I would pay any amount of money to spend just a 1/2 hour in Sam's brain. Thinking how he thinks, feeling how he feels, listening how he listens, speaking how he speaks... Just think of the valuable information that 1/2 hour would give me.
I could finally understand Sam's hearing issues, Sam's processing issues, Sam's speech issues but most of all I could understand Sam's pain issues. We are in a tough spot. Sam's CT showed further lucency and fragmentation of the bone. It showed fluid on the hip which could be a sign of infection but more likely is an indication that Sam's AVN (Avascular Necrosis of the hip) known as Perthes in children is advancing. The exact opposite of what we want to happen. Sam's surgery included a left proximal femoral varus derotation osteotomy and a pembersal pelvic osteotomy. Okay now for regular people terminology, they removed a pie shaped piece from Sam's femur, tilted the bone into the socket for better coverage, held the bone in place with hardware in hopes that this would keep the hip in the socket and re-position the head of the femur to stop the Perthes from breaking down the bone any further. Once this occurred the body would be able to re-establish the blood supply and regrow the bone. They also rebuilt the shelf of the hip to provide a better socket for the bone to regrow in.
Well, it appears the surgery was successful in taking care of Sam's hip dysplasia issue but Perthes continues to destroy his hip. Now that we know that Sam is still in the breakdown phase we can better understand the pain he is going through. Sam is asking for his wheelchair more, he is walking less, prefers to lay down and yet....Sam is still happy. Last night Sam asked to take a bath...something he hasn't done in years because he prefers showers. But I'm thinking that he was hoping the bath tub would be like the hot tub he sat in on vacation and at the YMCA. This morning when Sam woke up he asked to go see the doctor. Maybe he was just dreaming about doctors because we have had so many appointments in the last couple of weeks or maybe it's his way of letting me know that his hip hurts and yet...Sam is working with me this morning on his academics, his home program and as I write this he is watching a video on the Human Body. I wish Sam could tell me how his hip is. I wish he could let me know what to do to help him feel better. It breaks my heart to know my child is hurting and yet...I have only to look at Sam...how he smiles, how he laughs despite the pain, how he continues on and I know I need to do the same thing.
The test results are coming in and our next doctor appointment is on the 22nd to discuss all the results. I have already seen areas that have raised red flags in my mind...and this is when I fit Patrick Star's quote. If you had any idea the number of directions, the hours of research, the amount of time spent trying to put the pieces together on how AVN, Perthes, Sam's immune system and how each of these is affected by his metabolic issues...you now understand my enigma.
And yet...I put much of the worry in God's hands, I ask for guidance/direction and I am always amazed at how I can buzz around the internet grabbing at this piece of information and that piece until it all starts to come together. I am amazed at how my doctor's are working together, I am amazed at the blessings that continue to pour in...and I am thankful.
I believe our lives are what we make of them and everything in them is what we choose to believe, act and do. Apply that principle to everything in your life...it works. I am fortunate to have Sam as my guide. I have a guide that has humbled me, presented me with my faults and helped me view my life through his eyes. There are simple lessons we learn from our children with special needs and really any of our children.
I strive to learn these lessons.
Sam is always happy to see me. Sam hugs me if he thinks I need it or not. Sam smiles and laughs each and every day (unless of course he is under sedation or on massive pain medications). Sam loves the day to day motion of our lives...he wants to know where each of us is and when we will be coming back together. Sam instructs people to hug or dance together even if it makes those people uncomfortable. Sam says "Hi" to everyone and doesn't get upset when they don't respond. Sam hugs his doctors and nurses...despite of any pain or discomfort caused. Sam doesn't hold a grudge, he doesn't judge, he doesn't want what others have nor does he worry about not being able to do what others do. Sam is happy and content with his life.
The next couple of weeks will hopefully yield some much needed answers and a new path. I am hoping that by Thanksgiving we have even more reasons to be thankful. But I know my guide will make sure I see the blessings in family, support, friends, great food and strong relationships...especially the great food (I mean we are talking about Sam here).
Have a great Friday and an amazing weekend. Sam and I will too!!!