Friday, April 26, 2013

A sudden change in plans!

Finally I can post about Warren's last Doctors appointment.  I have had a week to let it sink in and process it all.  A week to think about what will transpire for our little guy over the next 10 years or so.  Before Warren came home we thought his only need was the malformed right foot.  We also thought that could be fixed by a reconstructive surgery.  Then we got home and got the surprise diagnosis of fibular hemimilia.  Our only option was amputation, or so we thought!

Enter our new Doctor who never even mentioned amputation!  His plan will be harder but it will give Warren a chance at keeping his foot!  So the plan is to do a surgery on his ankle to put it in the right position.  Possibly at the same time or a few months later he will have his first lengthening surgery.  He will be in an external fixator for at least 6 months and we will expand it every night.  We hope to get 5 cm out of this lengthening.  He will have a second lengthening between the ages of 6-10 where we hope to get the final 8 cm so his legs will be even.  Somewhere in there we are going to throw in that reconstructive surgery for his foot too.  There are going to be a lot of doctors visits and physical therapy for our guy too!

So that is the plan in a nut shell.  We love the doctor which is good since I am going to be seeing him so much!  We are waiting for the doctor to decide if the ankle and first lengthening will be done together or separate.  If he does them separate we wll go ahead with the ankle ASAP.  If they are together I would prefer to wait till after our Disney trip in September.  I would like for him to have his first summer home without a fixator.  I am hoping to hear the plan soon so we can begin our journey.

It's going to be long and hard road, but its worth it for Warren.


  1. Our neighbor recently had this done...he was 10. He is doing great! What a great option!

  2. So happy you were able to find a Dr. who is willing to go the extra mile and not just amputate right off the bat.

  3. That's amazing. I have seen the process for people with certain types of dwarfism. It's hard, but the results are pretty amazing.