Saturday, April 16, 2011

Sorting It All Out!

In the last couple of weeks I have had a lot of time for thought and reflection. I was sick, Sam was sick, therapies and school cancelled, home program put on hold and now we seem to be back on track. I think I needed the break to re-focus, re-think and re-energize. The downtime allowed me to weigh in with two other specialists in Perthes. If you read my last post you knew we were feeling a little overwhelmed by what the diagnosis of Perthes has brought into our lives.

I sent Sam's x-rays and spoke to Dr. Shawn C. Standard during his Perthes chat and I sent Sam's x-rays and spoke with Dr. Dror Paley via email....and I think sometimes I just need to hear things presented in different ways a couple times to really understand what is being said. Everything Sam's surgeon said in our last appointment was explained and supported by both doctors. It was good to hear all 3 of them saying essentially the same thing but in different ways and with a little more detail. It helps my mind process what is going on with Sam.

They all felt the surgery was extremely successful and we are now in a monitoring and PT stage. Sam complicates things by not expressing how he is feeling or if he is experiencing pain and his lack of cooperation in PT is also difficult. My understanding is that the surgery did an excellent job of producing good coverage and containment of the femoral head which helps to re-establish the blood supply but the bone will still break down and this is termed the fragmentation stage and it indicates that new blood supply has arrived to the "dead" portion of the bone and this bone is being removed and reabsorbed- new bone will then appear as fluffy areas on the x-ray. I’m also understanding that the growth plate is always affected in AVN of the hip - the affects are minimal when this occurs at an advanced age which is the only advantage of getting Perthes/AVN at an advanced age- how much affect is a wait and see kind of a game and watching the length of the femoral neck. PT is needed to address the stiffness in the hip which is where we may need some help so Sam's pediatrician Dr. Dirk Steinert has suggested a visit to Dr. Klingbeil, a rehab medical doctor which is currently scheduled for May 10th. I do understand that Sam’s low tone and lax joints may actually benefit him in helping alleviate stiffness.

So what does that all mean???

Sam’s Perthes is in an advanced stage and we still don’t know what the final outcome will be, it is a wait and see process. This isn’t something that is going to be figured out quickly, there are a lot of variables but the other surgeons also demonstrated that there are more options if things don't go as planned. So much depends on how much bone re-growth Sam has and how that bone growth looks. His surgeon and I would have liked to see some white fluffy stuff on the x-ray but it is good to hear that just because we didn’t see it yet doesn’t mean it won’t happen. I was happy to hear that neither of the specialists wanted to jump into anything right now and that waiting and seeing will determine the future path. I also appreciated the extra info. on the fragmentation stage, late age Perthes and the growth plate which is why we will still be watching the femoral neck along with the head/ball. I shared all this communication with Sam’s surgeon so that he understands my communication needs and if/when we run into issues in the future he may reach out to the other two surgeons.

In Sam's world this means the roller coaster of good/bad days continues. On some days Sam is walking independently (kinda a rough looking gait) but he's walking. On other days he's crawling or asking to lay down, some days he uses his walker, some days he uses his wheel chair. But he never says his hip hurts he just modifies his position or activity to accommodate the pain level which means he needs to be in an environment that he can do that. If we medicate Sam it bandaids the pain and Sam will most likely overdue and may cause damage or delay in healing. Being at home works...being in a school environment would be difficult. I can give Sam the freedom to move or change position and I can still work with him...not such an easy process when you think of a public school classroom.

During my next couple of weeks I will talk with the school regarding options for continued involvement, look into hiring someone to work one on one with Sam at home during the summer to give me a break and I will pray that God directs my actions. I am jumping back into his home program and homeschooling and will concentrate my efforts on cognition/speech, learning new things, increasing his auditory world and his auditory processing, hip stretches and as much physical activity as each day allows. This twist in the journey has once again taught me that I am not in control and I need to allow Sam to take the lead. We continue to present Sam with new experiences and in my mind that is the key to our success. We enable him and we don't give up if at first it doesn't go well...we may just have to try again at a later date when he is better able to handle something or reduce time frames or simply try a different approach. We change things a lot and we keep trying but we listen to Sam through his speech and actions because only he can tell us if it works or not...if he's getting it. We work at his pace and not ours, we adapt to each day, each moment. We don't test because our goal is not to frustrate but instead to instill a life long love of learning and communication. We assess through observation and we continue to challenge him just as he continues to challenge us. Raising Sam tests and questions every parenting skill I thought I had. Each morning as I start my day I take a few moments to read a one minute prayer and a few chapters of the Bible. My devotion for today was perfect:

What's Next?

The Lord will fulfill (his purpose) for me; your love, O Lord, endures forever--do not abandon the works of your hands. Psalm 138:8

Don't stop now, Lord. I am finally catching Your vision for my life. It has taken me a while, and I've had to walk through a lot of mistakes, but I am here and ready to receive Your purpose. What would You have me do next? Your patience over the years has shown me that You will not abandon the work You have begun. Lead me to the next step.

When I listen to others or even to my own negative thoughts, I am tempted to quit trying. Your love inspires me to keep going. And each time I move forward, my step is more steady. I am certain You will follow through. And I will follow Your example.

So, what's next?

1 comment:

  1. Great post! This is my first time reading your site. I can really understand what your saying. I understand being tired and wondering what next! I'm disabled and was diagnosed with a disease with no cure. You find the strength through God to keep going. Hang in there and I look forward to reading your site more often.