Diagnosis, Hope and Transformation

Well, the genetics appointment was pretty calm cool and collected yesterday. I thought we might be late since the freeway has some areas under construction and there were also emergency vehicles making their way ahead of us. However, although we were indeed seven minutes late, it all worked out fine.

Dr. Toritelli, the genetics specialist, felt it was only necessary to observe xrays she already had of Maxim and see him in person for a short time in order to conclude the diagnosis of arthrogryposis. I have a lot to learn about this disorder, but it's basically an umbrella term for bundles of weakness, malformation and/or dislocation of the muscles and joints which may or may not be genetic. In some cases, the disorder stems from lack of sufficient room to move in the womb and in some cases it does indeed have a genetic basis. She felt it was unnecessary (and I agree) to go through actual blood work and testing at this time to determine the cause of Maxim's arthrogryposis. She says if Maxim wants to know for sure someday, for the sake of any future children, whether or not his particular case is due to a genetic disorder, he may choose to do the testing then and frankly the genetics testing will be so much more sophisticated by then, we'll probably get more answers in the long run. It is just satisfying to get the definite label and know that this is not a progressive disease of any kind. Like Cyan's cerebral palsy, this results in certain weaknesses and challenges but it is not going to get worse and a lot of progress can be made through surgeries and therapies.

Right after our appointment with Dr. Toritelli, we zipped down Michigan Avenue in Grand Rapids to Dr. Reinhart's office so she could get a good look at Maxim in his new brace. She tweaked it a little so his right leg is pulled out to the right a little further, wanting to make sure the top of his femur sits in the hip socket more securely. He will remain in just this brace (24/7 except for toilet, bathing, and swimming) until September 1, when they will again cast his feet and lower legs in preparation for the September 11 surgery.

Keep praying for God's divine moving and softening of Maxim's feet. I believe a lot can happen between now and the planned surgery.

I was reading an article recently by Ken Burns, the very talented historian and film maker. He was talking about the National Park system in the United States; how breathtakingly beautiful each park is and what a special gift it is that several people who came before us thought to preserve these areas so all people could continue to enjoy them. One comment that struck me is that Mr. Burns felt that when one takes the time to visit these areas and takes several days (even weeks) to explore and observe, it is a life-changing spiritual experience. He felt that by spending concentrated time in such beautiful places, away from all the frenzy and distraction of typical American life, one's very molecules are even reordered, it is that intense. It's like becoming someone new because of where we've spent that time.
I will write more about this on my other blog (www.onedaughteroftheking.blogspot.com) but in conjunction with the appointments this week, it just left me pondering how mighty our God us to give us reminders all around us in His creation of who He is and that He is able. He is our Fortress, our Refuge, our Comfort, our Healer. Through time spent with Him, wherever that may be, we really are transformed, physically and spiritually. He sees Maxim's need and in His hands, anything really is possible. For Maxim. For Cyan. For you. Rest in that. Press on in that.