dear all,
yesterday we had our follow-up appointment after 2 years. My daughter is now 6 years and a half.
The situation is fairly unchanged.
In March 2013 we noticed an increase in the length difference between the 2nd digits (the normal and the macrodactyly one; from 0.5 to 1 cm) as compared to the previous measurement of 2011; in February 2014 a new increase (0.5 cm) but in both digits (so this is good news) and no changes since then. We changed shoe size since February and this means that this was due to the other parts of the foot (and NOT the macrodactyly toes) having grown. The 3rd digit is unchanged since 2011.
Given the above situation and the fact the we still use shoes with the same size, the doctor suggested that we should continue with the observation strategy. If nothing changes to the worst, he is going to see her at 9 (according to the doctor this is an important stage in female growth).
As far as surgery is concerned, he said that this will have to be done at some time but he hopes we can delay it as much as possible.
By the way, my daughter doesn’t want to hear about surgery yet. She says she is satisfied with her big toes as they are, and does not want “to cut” them…. I think she will change her mind as she grows up…. time will tell. In the meanwhile we can only wait and try to gather as much information as we can.
macrodactyly 
Dec 03, 2014 @ 13:13:51
This sounds like great news. My son is now 12 and has had his second and third toes taken off when he was 1 1/2. He has done well and plays all sports. We have had to go to a podiatrist to have inserts made to help his arch as his ankle ligaments are week and he rolled his ankle a lot. Since we’ve had those made he has done extremely well. He loves talking to other kids with macro so if anyone has a child that ever wants to talk please feel free to contact me. He is a great kid and might be a great advocate for your kids to talk to. Have a great day.
Thanks
Liz
Dec 03, 2014 @ 13:55:32
This is great news!! Tyler just made a comment last night that he doesn’t want his Super Foot to be smaller…. He wants to make it “bigger and bigger!”
Liz…. My son is 6 and had his first and second toes (the first two joints) removed when he was about that age too. We still have an enlarged bone and fatty tissue that’s in the ball of his foot, but he plays all kinds of sports and tells everyone he can kick harder and run faster because of his Super Foot.
Have you and your son been able to connect to a lot of people with marcrodactyly?
May 07, 2018 @ 12:51:14
Hey Jenn-
Sorry to just now be contacting yo back. Life seems to go so fast and trying to keep up with three kids makes it crazy. The only contact we have had with families is through this site. My son has talked via facetime to a couple of families, but he really wants to help other kids who may be having a difficult time or families that may have questions. He wants to start a group, but not sure how to get the word out there. Hope this finds you well, and would love to keep in contact.