So, here we are 3 months later and we have begun the process of figuring out what Elise has and what can be done about it. Because the condition is so rare, we are trying to cast the net as wide as we can to get the expertise we're hoping for to decide the best course of action. There is the risk of her condition being tied to an internal syndrome but so far everything checks out ok. She'll continue to have internal scans for tumors for quite a while. We are going forward assuming her condition is isolated only to her foot so we can focus on the function and cosmetics of her right foot.
We have started getting some helpful information from friends, thank you. I also hope this blog post might pop up in a google search of another mom out there trying so desperately to find something to help their child and someone to connect with. I am one of those mom's right now and hope to connect to other families with this condition too.
Instead of just showing you her toes, I'll leave you with a cute picture of our Elise using Pepe as a pillow.
Thanks for filling us in on Elise's condition. That sounds stressful, but you two are among the most capable parents I know, and so I have no doubt she will get all that she needs.
ReplyDeleteThat picture of Elise and Pepe is sooo precious. It's amazing how tolerant Pepe is!
-- Aimee
Wow, I remember your saying something when she was born in the blog, but didn't realize the unusuality (is that a word?) of this condition. She looks so happy and healthy that I'm certain it will all work out okay. Nevertheless, I know what it feels like to want to connect with others whose kids have the same issue. When we found out about Magdalena's craniosynostosis, I was all over the place trying to figure it out and connect with others. I pray that you find someone out there too.
ReplyDeleteHere's hoping that you can find a support network and more information about the condition, so that you can feel comfortable with whatever decision you make. She sure is a sweetie!
ReplyDeleteHi,
ReplyDeleteMy daughter was born with the same peace sign toes :) She is now two and doing great. If you would like to hear about our experiences (we live in Boston and go to Boston Children's Hospital), feel free to email me at epsigalow at yahoo dot com.
Wishing you the best of luck as a new family of five,
Emily
Hello,
ReplyDeleteI'm very happy to have found your blog. I occasionally do a search of macrodactyly of the foot because my daughter Grace (3) was born with the same condition as your sweet baby girl. Same foot, same toes affected! When Grace was born, it was the 2nd toe that was SO much larger. At 5 months, her 2nd toe was removed (surgery went great) and over the next couple of years, we realized her big toe and ball of her foot are also affected. Currently, no other surgeries but we're keeping any eye on it and have follow up visits a few times a year. She will need another surgery at some point to debulk her foot. Would love to talk you to more about it and share pictures. It's so rare and almost impossible to find others going through this. Please feel free to email me at mtempel2005@gmail.com if you'd like to talk more about it.
Best of luck,
Marci
Hi, I was googling macrodactyly and came across the picture of your daughter, I am 25 from the uk and was born with macrodactyly in my big toe and 2nd toe on my left foot. It is almost identical to what my foot was like when I was born, I have had a few operations to remove the two toes, if you wanna email me when any queries my address is carly_lloyd87@hotmail.com.
ReplyDeleteFrom my experience Elise will get through whatever she has ahead of her and it has never stopped me doing anything and I'm sure she will be the same.
Carly
Hi, our daughter (6.5) went through a second surgery few weeks ago, we are from Israel, both surgeries were done in NY.
ReplyDeleteNever have seen an identical picture like our case, until now, absolutely identical except for left foot.
Will be happy to share erang@g-eitan.com
Take care
Eran
Mio figlio 9 anni, macrodattilia 3 dita piede sinistro. Sono italiana, informazioni e esperienze chirurgiche dei vostri bambini sarebbero preziose.
ReplyDeleteho sentito parlare di boston
vi prego qualche consiglio
un abbraccio Isa
sorry, my e-mail adress is
ReplyDeleteisabella.cassina@hotmail.it
ci sono anche io .
ReplyDeletequalcuno sa aiutarmi ? mia figlia ha due mesi ed è affetta da macrodattilia del piedino sinistro secondo e terzo dito.
non so cosa fare , aiutatemi
chiarettaostin@yahoo.it
My daughter is 2 months old & was born with this too...her foot looks identical to your daughters except it's her left foot. We just went to the pediatric orthopedic yesterday. He is sending us to a genetics doctor to see if there is an internal syndrome. He said she looks great & just wants to rule it out. It looks like it's been a few years since you posted this blogpost...I would love to read an update?!
ReplyDeleteHi! I see you placed a comment in 2016. Is there any way, you can reach out to me? My email is: nyoung3729@yahoo.com I’d love to chat with you!!!
Deletehello. I would like to see the last photo of your daughter's foot.
ReplyDeleteI live in Turkey. my daughter was born with a macrodactyly of the same foot as yours. My daughter is now 8 years old and the second toe of her right foot was removed. right big toe is still growing.
What is the current status of your daughter?
my e-mail address: cihanakpolat@hotmail.com can you send me some photos of the final version? If you request information from me, I am ready to give information.
I offer my best wishes.