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Walk Cody Walk

I will share the story of Cody walking (Yey!!) after this bit of info I just learned. Maybe some parents who have deciced on the Symes amp. can testify to this. I was told that after a Symes surgery the heel pad is too small of an area to bear weight on for extended amounts of time. Therefore a younger child will lose mobility when not wearing a prosthesis. My son will walk on his affected foot and the knee of his other leg or crawl to get around. So if losing mobility (only when not wearing the prosthesis) is true, it could be a factor in when to have surgery done.

Now the exciting part, Cody who is 21 months finally has his first "helper leg" and has spent the last two days walking like crazy while holding mine or his Dad's hand. He will stand on his own for short moments and is figuring out how to sit down, roll over and stand back up. It was a very long and frustrating road to get here but looking back I feel blessed for all of the roadblocks put before us.

Cody has pffd class d, fibular hememlia, a present but small and tilted hip joint and his foot is hyper extended radiated club foot (with all five cute toes). We have seen seven specialists and four prosthetists. We felt the 4-5 rounds of lengthtning plus the surgeries that go with it were not worth the outcome nor the childhood memories for our son. We were refered to a particular Doctor a few times. So after getting approval from the insurance company I was setting out to send off the paperwork to Miracle Flights for Children for our plane ride. The insurance company called back and said I was given the wrong info and NO we could not go to this doctor. Finally I found a senior agent and was given approval again. We went back east to meet the "best" surgeon and chose rotationplasty for our son.From the very begining this particular dr. and his staff were terrible at returning phone calls and emails. I scheduled surgery 8
months in advance and never received the pre surgery paperwork even though I had left messages during that eight months. Our prosthetist was unable to get his questions answered from this doctor. I sent my first round of pre surgery questions 2 1/2 months prior to the surgery with no response. At three weeks before the surgery date we still had no reply and I was not about to travel 3,000 miles with out answers, so we deciced to cancel the surgery.

In our third out of state trip we met with Dr. Dahl and Dr. Koop. We had already been second guessing the rotationplasty and the information they gave us helped close that option. I really feel that, with everyone we have met with, Dr. Dahl not only has experience with this condition but is very honest and upfront. He does not let his ego interfere with making sure parents have ALL the neccesary info to make permanent decsions. AND he and Dr. Koop got down on the floor with my son to exam him while he was playing. We did have some delay in communication but over all I have been pleased with Dr. Dahl and his staff. From there we went home, had an MRI and were trying to schedule surgery for a Symes Amputation. I never felt good about that but, how can any mother ever feel good about an amputation even if it is the best for their beloved baby. The surgery scheduler was to be in on Friday, I was going to make the call Friday moring. Thursday evening I get a call from our "best in the state" prosthetist saying they could not fit our son. I had been in contact with this gentleman for over a year and he calls to dump us the night before I am going to set surgery? Why have your child's foot amputated only to come home and have nobody to fit him with a leg? I got off the phone half hysterical mad and half hysterical laughing, then I remembered my request to God - If I am doing the wrong thing PLEASE give me a sign. Let there be a blizzard, no some stranger may get hurt, Let there be a 5 hour delay for the plane, no somebody may really need to be on time, O.K. just some sign if this surgery is good or bad but make it obvious as I can be a little dense at times. thanks Amen. I think being dumped by your prosthetist is a sign. Well back to the internet for more research. We found Pediatric Prosthetics Inc. in Houston, had no problems with communication or insurance and they had Cody fitted with his leg start to finish in 6 days. All of the staff were warm, interested and encouraging. The best part is that they were able to fit him without surgery first. The prosthesis accomodates his foot, which is turned and pointed down. A symes will be necessary at some point to allow a knee joint but we are not pressured by time to have surgery. This company also fits myoelectric arms and will travel to some states to see patients. I do belive that pffd cases need to be seen in Houston.

Well believe it or not I actually left out some of the roadblock stories but the important thing is Cody is happily learning to walk and soon he will be chasing his brother.