Courage is what it takes to stand up and speak; courage is also what it takes to sit down and listen.
James and I have done a lot of listening this past month, although it has been hard to digest what we hear. The water we tread in now is murky. Our souls and minds ache for peace and wisdom. More than ever it is apparent to us that, while we think we are in control of jack's course, all we have is our human ability to make the best decision we know. The rest - I can only give to the Lord.
We received a 3rd opinion from Shriner Hospital in St. Louis from 2 different Doctors:
1. Upper Extremity Specialist: After reviewing Jack's x-rays, he feels Jack is missing the Ulna bone instead of what we previously had been told (the radius). We discussed potential of separation of the fused elbow joint, separation of the fused 3 fingers, use of prosthesis, a toe to hand transplant to make a 'pincher' for his hand. We listened eagerly to his propositions and he entertained our questions. At the end of the day, James and I still rest that we will most likely not do anything for his hand now.
2. Lower extremity specialist: Recommendation is Limb-lengthening. This procedure would start at age 8. According to his research, children seem to get more length out of each surgery when done at a later age. An external fixator would be surgically placed in Jack's lower leg for 3-6 months, followed by 6 months of intense physical therapy. This would occur for Jack at least 2 times during his childhood (age 8 and 11). They estimate being able to make the leg "almost" as long as the other. In the mean time, growth would have to be stunted in his Left leg either by removal of the growth plate (surgical) or medication. Jack would also require a surgery to stabilize his ankle. We are not sure, at this point, when that would occur. The Doctor projects Jack may still have to wear a brace on his affected leg after all lengthening is done. He also brought to our attention, if we choose amputation, the cost of a prosthesis for the duration of Jack's lifetime. Something we had not thought about, and quite frankly, is not a priority in our decision making (even though we know it's a big deal!). Cost aside - Jack's quality of life and fullest function of his leg is my priority. In the mean time, Jack would have to wear a special shoe lift and brace to stabilize his ankle and knee.
Lots to digest, lots to think about. I am so thankful to have access to the latest advances in medical technology and wonderful doctors willing to see Jack. Please pray that we would gain wisdom and peace regarding our decision for him!