Today, I am very, very sad. Even though I expected the recommendation made today by Dr. Gates, the future is difficult to face. Elijah is scheduled to have his feet removed in October.
Two days ago, Sophia drew a picture of someone standing. She drew only feet, legs and hands and arms hanging down. The rest of the person was off the page. I asked her what she had drawn and she wrote "Eli wen he gros up." It brought tears to my eyes. I am not looking forward to explaining why mommy and daddy would let a doctor remove Eli's precious feet.
I will miss Eli's feet. When I pick him up from his crib, he always brings Clifford the dog along dangling between his feet. Eli has very talented feet. He uses them to manipulate his toys and brings them to his tummy when he's being tickled as he laughs and laughs.
The fact remains that Elijah's feet do not help Eli walk, so they must go. Several months after the feet removal surgery, he will have surgery to straighten his legs. This will require the removal of a chunk of bone in order to make the blood vessels and nerves stretch to go straight. The doctor will give Elijah as much length as he can. Then, after healing, Elijah will begin working with prosthetics.
Eli doesn't have growth plates in his leg bones around the knee. The doc said today that he does not see growth plates in Elijah's lower legs at all, which means they will not grow longer. He does have a growth plate in his upper leg near the hip area, but that growth plate doesn't do much growing. His bones will grow larger around as that is a different type of growing.
One question we had today was for suggestions for mobility solutions for Elijah now. The doctor recommended a child's battery-operated car (think pink Barbie car for a 2-year-old child, but they have lots of boy options too) with alterations to be operated with a joystick. I can imagine Elijah's big smile as he steers himself all over the backyard. This will mean David and I will work to find someone who can fit one of these cars with the joystick. Anyone ever heard of such a thing?
You may be wondering about Elijah's electric chair. I am too. I will check on that tomorrow, but I am assuming insurance resistance to issuing such an expensive chair to a 2-year-old kid. I bet Eli would like the retrofitted electric car instead. That would rock!
Tomorrow, Eli will see the hand surgeon, have his cast removed, a splint made and get a date for his next procedure to move his thumb to a more functional position.
I thank you for your prayers and concern for us as we continue through this journey.
With love and gratitude,