Monday, April 20, 2009

Doctor's recommendation

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,
Melissa

7 comments:

Emily said...

Melissa & David,

This brought tears to my eyes and now they are streaming down my face. I cannot imagine going through what you have experienced. Never for one day. I can pray for you and your strength, and for that in the precious innocence of Sophia as well. I also, would love to help capture images of Elijah's feet this fall... photo's, etc. I also think it will be a neat idea to be sure to make several impressions into different things, stones in the garden, etc. for your memories. I think that would mean the world to you. Then, when he runs when he gets to be bigger, you can point him to where he started.....

Much love to you all. Praying for you.

Miss Kate said...

love you all! many prayers...looking forward to talking with you. i may know someone who could help with the joystick project.

Hewett Happenings said...

Melissa,

As I write this, I am sad and crying with you. I know what you are going through is very difficult. When we first found out about Hannah, we knew amputation was the best option for her. Even knowing that going in, it didn't make it any easier the day of the surgery. Watching her today, there is NO DOUBT we did the right thing.

The idea about pictures and impressions of his feet is a wonderful idea. We did the same with Hannah. She looks at the pictures of her old legs, and understands why we did what we did. She realizes she would never have been able to walk without the amputation.

As far as the car or something for Eli, you really learn to get creative. Hannah has used one of the 4-wheelers with the thumb control. That was great until she realized it wasn't going as fast as her sister's bigger 4-wheeler. If you figure out something on the joystick thing, please pass the info on. Hannah could benefit from something like that. She is limited in her arm/hand functions, and things can be difficult for her.

We would love to be able to come meet your family. I think Hannah could be a good encouragement for you and Sophia. Visit my blog, and leave me a comment if you would like to try to get together. I have also just posted some pics from Easter. In the next day or so, I will upload some pics that we took at a CMN photo shoot. Hannah will be in the 2010 Oklahoma City CMN calendar.

Praying for your family...
Kim

Anonymous said...

My dear Melissa & David: What can I say after the comments you have already had. My heart aches for each of you but know we all have to look down the road to even start to understand what must be done. You have already proved to be brave people and believers in our great physician, our living Lord. We know HE cares and will see this through.Love you Grandma Bobbie

Freddie Cooper said...

I have sent an email with a link to a car with joystick, it is available at Sears. hope this helps

Diane Davies said...

Oh honey, I'm soooo sorry about this news. I know you all are doing the very best for Eli but I know this is a very difficult decision. Sophia is a smart little girl and she will understand when the time comes. I love the idea Emily has about making foot impressions and getting photos of Eli's feet. That is an awesome idea. If I can help with a scrapbook photo page in frame you know I'd be happy to! I'll see you next weekend at the Garden Party. Be sure and bring our GS cookies! : )

Stacie said...

So, so heartbreaking to see it in words. My heart aches for you all and the decisions you have been faced with. May you be blessed with a peace that can only come from God.

Much love,
Stacie