Just a quick reminder that Dr. Standard (and usually Dr. Herzenberg as well) is having his next online chat this week on Thursday 5/20 at 9:15 PM EDT. This is a great opportunity to get to talk to one, and often two(!), of the most experienced limb lengthening surgeons around. This chat will focus mostly on CFD (pffd) and fibular hemimelia, although there usually a few other diagnoses represented. Besides the doctors, another benefit is that you can chat with other parents as well for their input.
I have a pair of little girls shoes, infant/toddler size 3w that have a 4cm lift on the left leg. My daughter used them for 3 months before they became too small. I would love for these shoes to go to another little one that needs them rather than sit in her closet. Please message/comment me if you have any use for them.
This is a weird question, but I don't really know where else to ask.
I have bilateral PFFD and walk with forearm crutches. I am getting married next June, and I'd really like a bouquet. Obviously, walking with crutches (one of my gifts from my parents is a special set of wedding crutches) poses some challenges to carrying a bouquet.
Does anyone have any brilliant ideas on what I could do?
Please let me know if you know of any books that are available for children with regards to going for surgery and also for receiving a prostetic foot and leg. I'd like to know if there's something that explains it to children in their own language.
I just realized that I had not updated everyone! Our family grew in February by 4! We now have 10 children. For those of you that I have not met, I am an adult with PFFD and congential arm deformities. My husband and I have two children by birth and eight by adoption.
Just a quick reminder that Dr. Standard (and usually Dr. Herzenberg as well) is having his next online chat this week on Thursday 4/22 at 9:15 PM EDT. This is a great opportunity to get to talk to one, and often two(!), of the most experienced limb lengthening surgeons around. This chat will focus mostly on CFD (pffd) and fibular hemimelia, although there usually a few other diagnoses represented. Besides the doctors, another benefit is that you can chat with other parents as well for their input.
My son, Julian is four years old. Here lately we have been having issues with him fighting us when it is time to put his shoes on. We were thinking about explaining to Julian why he needs to have his shoes on but we have different ideas....
My husband feels that we should wait and not have a sit down talk with him trying to explain why or how he is different until the time comes that someone says something to him. He wants to keep that innocence that he has for as long as possible.
I've decided that I would write another book. This one is for all new parents, grandparents, people in society who think that a person with limb differences of any kind will not be able to be a __________ .
We know differently...our children can do anything....beyond what we even believe!
For this book, I am thinking about "older" children...13 into adulthood.
I want to do photos again. And, it's important to me that my books are diverse in ethnicity, gender and ability.
I am going to participate in a local rally that provides info on different disabilities and birth defects. My daughter has pffd and I was wondering if anyone could help me with what information I should provide. I appreciate all the help in advance. Thank you!
To those of you who have kids with PFFD or have PFFD yourself, have you ever looked into chiropractic care as part of the treatment? I've been wondering about the impact to my daughter's spine with walking the way she does (she has a 3 inch leg difference) and if spinal adjustments would slightly decrease the leg length difference. Any thoughts?
