BTW and FYI: a resource list

Folks, I hope you understand that I was exaggerating earlier when I said there is no information about childhood amputations out there. The truth is that there are a few resources out there for parents with limb deficiencies and amputations. Here are some articles and links with some good information on the subject:

http://child-amputee.net/information/articles/for-families-of-children-with-amputations/
~ a good article on parenting children with limb differences

http://www.amputee-coalition.org/fact_sheets/help_child_understand.html
~ a list of children's books geared towards helping children cope with limb loss

http://limbdifferences.org/
~an online support group and resource center for parents of children with limb differences

http://child-amputee.net/
~ The international child amputee network

http://www.circleofmoms.com/moms-of-children-with-limb-differences.
~ a message board support group of moms with children who have limb differences

http://www.littlefins.org/page4.html
~ a list of resources

http://arewethereyetla5.blogspot.com/2009/11/raising-child-with-limb-difference.html
~ another blog

http://www.bornjustright.com/
~ a blog

If any one actually reads my blog and has the need, please feel free to comment if you have more resources. I will add more in as I find them.

There is no book titled "What to expect when your baby is expecting an amputation."

 

Well Brodie finally had his first real doctors appointment with an orthopedic surgeon. After looking at Brodie's x-rays this is what he told us.:
 

~ The two fingers on his right hand do not have the best movement. The thumb moves well but the pinky does not extend and is stuck in a curled up position. In addition,the pinky and thumb cannot touch each other. He will need to have hand surgery when he is a little older (age 4-5) to fix the tendons and give him a better range of motion. We will need to see another separate specialist for this and he may need more than one surgery on it.

~ It turns out that Brodie's "good" leg (the left one) is not that good after all. His fibula has extra bone growing off the top of it and it is not connected to the tibia . When Brodie is age 2-3, they will have to do another surgery on that leg. They will go in just below his left knee to remove the extra bone and fuse the fibula and tibula together.

~ They will need to amputate the lower foot part of the left leg.

~ On his right leg, they will need to amputate through the knee. The right thigh bone is malformed on the bottom end and has extra bone growing off of it. So when they amputate that lower leg, they will also have to open up the right thigh and remodel the femur, taking off the extra bone.

So this is a tentative schedule for the treatment and surgeries he will need.:

~ At six months old, they will need to do an MRI to take a closer look at the blood vessels, tendons, and bones. To take an MRI, one has to lay completely still for over an hour. Since they cannot make a baby lie still like that, they will have to put Brodie under general anesthesia for the test. This will happen in December or January.

~ At nine months old, they will do the first surgery, both of the amputations and the reshaping of that right thigh bone. He will be in the hospital for 2 to 3 days and will need up to 6 weeks for the incisions to heal completely. After that, he will be fitted for prosthetics and will need physical therapy 2-4 times a week.

~ At 2 to 3 years old, they will need to do the second surgery on the left leg, to repair the tibia and fibula. He will be in the hospital a couple of days for that and will probably need to wear a cast for a month or two.

~ At ages 4 to 5, he will begin having whatever surgeries he will need on that right hand. I'm not yet sure on the details of that surgery or how many surgeries for that he will need.

This was a lot of information to process. For some stupid reason (maybe denial) I thought Brodie would only need one surgery, the amputation, and we would be done with it. I was thrown off balance when the doctor started talking about other surgeries. It was a surprise to find out about these extra bone growths and the additional problems that he has with his "good" leg and his hand.

One thing I can definitely say is that I was not a big fan of that orthopedic surgeon.  It felt like every time we asked him a question, he would cut us off and give us very short, patronizing answers. He seemed very excited about the prospect of doing such unusual surgeries on our child, yet he seemed annoyed with us, like we were bothering him with our dumb questions.

 I'm sorry, but I really don't care how stupid or irritating our questions are.  This doctor wants to cut off my baby's legs. I want to be able to ask him anything I want to without any hesitation. If I ask him why the sky is blue, he better look at me with a straight face, like its the most intelligent thing he as ever heard, and give me a good answer. There's no other place or person that I can get this type of information from. Have you ever tried to google the words "baby" and "amputation" together? You don't get a lot of hits. There is no book entitled "what to expect when your baby is expecting an amputation".  So who else am I suppose to ask if not the doctor?

So my husband and I sat back and looked at our options. Then we made a really big decision. We decided to move cross-country to a big city where our family lives. We moved into a house that is within short walking distance of a major children's hospital. It was the best thing for Brodie. He needs to be close to specialized care and family support.

Now to start all over and find a new doctor. Yes, I am planning on being picky. There is an award-winning pediatric orthopedist up the block at the children's hospital. We are going to try him first. If I don't like him, I will take Brodie to Shriner's hospital, which is two hours away. I am not afraid to search for the right doctor. I know that the best doctor for Brodie is out there and I will not stop until I find him (or her).