So last week we had our first appointment with our new Orthopaedic surgeon at Lurie Childrens. I call any Orthos the decision makers because every other doctor we see tosses around options and ideas, but the Ortho brings those ideas and thoughts to action. Most of the time as we prepare for our appointments I am fairly relaxed, except when we are seeing the Ortho. My stomach was in knots for 2 days and sleep was not restful because we kind of knew what was coming…………that dreaded word……….SURGERY!!! When we last saw the neuro, she tossed around the idea that Cam seemed to have enough muscle in his legs to support his small, yet very tall, body but since he could not straighten his legs all the way he is too far off balance to stand. So once again, I knew that it would fall into the hands of the Ortho who would make the final call to do surgery or not. I spent a few days researching it and found lots of useful information, but I still was not happy with the idea of Cam having a 2nd surgery this year 🙁 Some where in me I was secretly hoping he would have a different answer, even though deep down I knew what was to come.
Muscular Dystrophy causes key muscles and tendons to contract and therefore they eventually become shorter and shorter until you can no longer use them properly. The first place this usually happens is in your heels, Cam has already had both of his heel cords released ( a surgery where they cut the tendon, then cast him until they grow back at the proper length) , then it can move to the hips where there are 4 separate tendons. Cam had these done too, back in 2007 he had what they call a bilateral hip release and we spent 4 weeks at Hope Childrens in inpatient rehab. It was a quite painful surgery because the tendons in the hips tend to go pretty deep and he had all 4 on each side released! Then it heads off to the knees, hamstrings and can even affect the elbows. So that brings us to 2013 and Cam’s inability to walk, transition and even stand on his own anymore. This has happened so fast, literally over the last 6 months he has lost all ambulation on his own and now doctors, and parents, start to worry about so many other things. Once a person becomes non-ambulatory they are at risk for a number of problems with muscle atrophy of your major organs, scoliosis, heart trouble, pulmonary issues and a laundry list of other things that quite frankly I can’t bring myself to think about. So here’s where we are………
Cam’s doctor has suggested that he have a hamstring lengthening ( http://www.livestrong.com/article/141053-what-is-hamstring-lengthening/ ) done in combination with a knee release. Now comes the part that was a little overwhelming, thankfully the doctor will be consulting another Ortho and they will make the decision about the best way not us! There are 3 different methods they use to achieve the same result, a fully straightened leg. One option is similar to what they did on his hips where they do in with an incision on both sides of each knee and cut the tendon so it can grow back longer, this is called a tenotomy. ( http://www.surgeryencyclopedia.com/St-Wr/Tenotomy.html ) The second option sounds quite interesting to me, the will make a small incision above each knee cap and place 2 screws in the upper growth plate of the leg in order to stop the top portion from lengthening while the bottom half continues to grow. ( http://eight-plate.com/treatment_overview.php ). The third option seems less than desirable if you were to ask me, they would make the incision below the knee cap, break the bone away from the knee joint and reattach it at an angle that would create a straight line with his upper leg so as he grows it would grow at that same angle. Honestly, I’m not fond of any of them, but I am trusting of his team of doctors and have hope that he could stand on his own again, even if for a few minutes at a time. We will be talking with the Ortho in about 2 weeks to discuss the best option as he and his partner see it and I guess, get surgery scheduled for sometime this fall.
Another big decision lies on the horizon that is approaching rapidly………what to do about school??? So Cam has attended private school for the last 5 years and they have been wonderful! It is a great school with amazing teachers, parents and students and they have made so many modifications to help fit Cam’s needs. Unfortunately now with his inability to stand, he can no longer use the restroom without assistance and this creates quite a problem. Many suggestions and offers of help have been made by his current school and Cam is not so sure about how they will work so we are debating the idea of switching him to public school. In the public school system they would provide him with a personal aid when he needs one throughout the day to assist with things. Oddly enough Cam seems somewhat excited to visit the school and check it out, which is not normal! It is a big decision for all of us because as parents we feel a great deal of comfort where he is at and are very nervous about sending him anywhere else. We have not come to any conclusions yet, but need to get going on it as school is coming fast!
At this point in time, I have fully accepted that Cam will never walk down the hallway at school again, or even across the room, but I am very thankful that he was blessed with the opportunity to experience those things. We were given a great opportunity in 2007 to do the hip release and at that time they said Cam would never walk again so stranger things have happened and he could prove everyone wrong again. Those of you who know Cam’s story know that 8 weeks after surgery he walked again! After such great success it’s very hard not to have the highest of hopes for this time around, but I fear that I cannot handle the disappointment if his success is not as dramatic this time. For now I will only hold hope that he can simply stand on his own again and feel his feet beneath him touching the ground and supporting his body.
Each morning when you swing your feet over the side of your bed and feel them hit the ground, don’t take it for granted. Be happy that you were blessed enough to survive one more day and one more night in this crazy world and you can stand on your own two feet and carry yourself wherever you want them to take you!