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Personal Stories

Non-surgical bone lengthening?

Wow, amazing stuff!! http://www.breitbart.com/news/2006/06/28/060628204537.2422eofv.html. Could it be just around the corner? Could we drastically limit the number of sugeries our daughter needs to have by implanting this device in her femur? Wow, here's for hoping.

It seems some engineers/scientists in Alberta have developed a pea-sized device that emits ultrasound waves and stimulates bone growth. It was actually developed as a means to "re-grow" teeth, but they suspect there may be some applicability to bone lengthening.

Kiara's lengthening...

Just a quick update on Kiaras Surgery...
She had the surgery in March and due to her toes bending she had surgery again in June to have a little cast to hold her toes with a cast... she is walking and her leg is growing really well...
she has physical therapy 2 times a week and she has been walking for 2 weeks.

to all good luck

with care

sonia
kiaras mom.

Looking for a doctor for lengthing in Chicago or Detroit

Has anyone gone through surgeries or doctor in these area's? I live in Mid Michigan and am looking for another opinion somewhat close to home. I have a 2 month old with pffd in right leg. Thanks, Rachell

SuperHip (or similar hip stabilization surgery) and SuperKnee surgery questions

Our daughter Riley is almost 2 years old and we plan that she will have SuperHip and SuperKnee surgery with Dr. Paley at the end of the year. She is very mobile (walk, kind of run, kick, climb, etc.) with a ~3 inch shoe lift on her left leg - more adventurous and mobile sometimes than her twin brother (who does not have PFFD).

Would anyone be willing to share their experience with either or both of these surgeries? We will be staying with family while we are in Baltimore so at least that part is covered.

A few questions to get started:

1. Did you experience any loss of mobility or comfort after the surgery? How long until your child was fully mobile again? (4 months? 6 months? longer?)

What we're doing

We recently started the surgery process with our daughter. We are using Dr. Stevens at Shriner's/Primary Children's hospital in Salt Lake City (we live close by).

It was pretty scary to do the first surgery (hip osteotomy 2 weeks ago), but it went very well, and we were very pleased. We have a long road ahead of us, but we are hopeful/confident everything will work out well in the lengthening process. It was almost as scary and nerve racking as when she was born, and we couldn't figure out what the deal was (you all have gone through that, it appears).

Incidentally, our daughter has a class B difference that sort of went to a class C over the first 3 years since the hip was not properly aligned (and thus she is not able to take advantage of all her growth plates). We are opting for the lengthening. To lengthen, they have to first realign the hip. Thereafter, they will perform a leg lengthening each year.

Thank You for all of your support

I really wanted to take a moment to thank everyone that has emailed my and posted comments for my husband and I to read. I have been so over emotional this last week that I have not even been able to write anyone back and post anything. My little baby is getting bigger and bigger each day and I just cant even think of how my life would be without her. Here I am being so unhappy about her condition I sometimes....well most of the time forget how lucky we are to have her. She is God's gift to our family and instead of being so sad about what she has facing her and her life I need to remember how happy I am that her is here with us.

Results

Thanks for the prayers everyone, Tom has been in and screamed going under and screamed coming out!, but we have finally got a proper diagnosis and treatment plan.
Toms right hip isnt formed at all!, and his femur hasnt grown so he shall continue to wear his prostesis, i have had my tears that the miracle hasnt happened, but also im so pleased he wont have to go through the hospital visits that he is so desparatly terrified of.
As i have said to my family, please dont be sad as Tom copes fantastically well, and enjoys life the way he is, and as long as he is happy , so are we!
Tom is an amazing child that teaches us something everyday, We all love him so much and i think if truth is known, its only us that sometimes has upset thoughts and bad days

We Leave Tonight

Hey all,
we leave tonight to travel to the city for toms appointment tomorrow morning,we are staying in a hotel, id like to say im excited about staying at a hotel as we never do!, but the truth is im worried sick and feel sick to go with it,can anyone who reads this just say a little prayer for Tom and us for while hes under general anestetic, if they get time, thanks a lot
love and best wishes Sally-ann
x

My Little Angel....

My first and only child Kalyn was born on 03/01/06. I was told during pregnancy that my daughter was a dwarf and or had a broken leg. It made for a very emotional pregnancy. My little girl was born and taken from me immed. and put into "Baby ICU" for 8 days. No one could figure out what was wrong with her left leg..we were sent to Shriners and within a short amount of time they diagnosed my little baby with PFFD in both legs and Fibular Hemimilia in both legs as well. She also has 4 toes on each foot (it made for an adorable birth certificate). I am writing this with tears in my eyes bec/ she is now 3 months old and the bigger that she get the more real her condition becomes to me. I just dont understand how I am suppose to teach her how to be ok with this since I dont even know how to be ok with this..I felt like my husband, myself and my family were the only ones going through this until I found this site. I am so happy to have read the letters from so many. I am so worried that she is going to have a harder life than other kids. I know that I should not say this is not fair since life isnt fair but it just isnt. No child should be born with problems..I would really like to be in contact with others that have children that have PFFD and children that have grown up with PFFD. I am having a very hard time with this. I dont think that I will have any other children bec/ I am afraid that he/she will have the same disorder that Kalyn does. She is the love of my life and I will do anything for her. She is my little angel. "God only gies special babies to special people that can care for them".

Arthrogram

Hi hope i find everyone well,
The date for Toms hospital appoinment is approaching the 8th June, i was just wondering if anyone had gone through an Arthrogram at all, and if anyone could let me know what to expect, and outcomes?

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