PFFDvsg

Guestbook - 2000

2000 1999 1998 1997

  Visitor: Rebecca Neal
Reference: 
Location: Canada
WebSite: 
Web Info: 
Contact: Smokey.thebear@sympatico.ca
Date: Wed, Dec 13, 2000 at 10:25:12 (PST)

Comments: Comments: I wish there was more sites for support groups. This is great!!!!

  Visitor: Tracy Davis
Reference: doing research
 Location: 
  WebSite: 
 Web Info: 
  Contact: davist@blue-ridge.navy.mil
     Date: Sun, Nov 26, 2000 at 10:10:20 (PST)

Comments: Hello, I have been looking at this site for a few weeks now. I'm note sure what I want to say. On Jul 24 1996 my daughter Almedia was born. I had a C sections because she was breach and did not know right away that there was a problem. It was about 45 min later when the nurse brought my angel to me all wrapped in a blanket and said Now MRS. Davis there are a few problems and I need to tell you about...... She was born with PFFD of the right leg and complex syndactyly of both hands with no little fingers. By the time she was 3yrs old she had been through 4 surgeries. 3 on her hands to release the syndactyly and an osteotomy on her leg to take some of the bow out of her femur. Since I have found the site I have learned that we are lucky. She has a hip that is in the socket and a stable knee and foot so amuptation was never a thought. I can not imagien having to make that decision. She has about a 3 inch differance right now. The doctor says it could end up between 4 and 6 inches by the time she is done growing. He has talked about stapling the left leg to stunt the growth at around 9 yrs of age and doing a lengthening later on. I have read most of the stories in tears learning what my baby still has to go through in the future. I know it will be the right thing to do, but to see my child in pain will rip my heart out. I also know that god does not provide one with something they can not handel so we will get through this. I am unsure if waiting to do the lengthening later is the best thing to do. I am pleased to find other families that have similar conditions. Until I found this site I had only heard about others but I have never had a chance to talk to anyone. Allie was in a spica cast for 12 wks. We learned a lot about taking care of her and the cast if anyone needs this information. I would like to talk to anyone about my daughters condition. My e-mail is davist@blue-ridge.navy.mil. I am active duty military and would like to know if there are many military members that have PFFD children. Thanks for listening and taking the time to read. I am greatful to the familes that have provided information and it has helped a lot.

  Visitor: Gigi Mourad
Reference: I got here through searching for info about pffd
 Location: New Jersey
  WebSite: 
 Web Info: 
  Contact: gelsamra@cs.com
     Date: Mon, Nov 20, 2000 at 18:02:07 (PST)

Comments: My son is five months old. He has unilateral PFFD. He is estimated to have 15cm deficiency at maturity. I have been reading all the stories on the vitual support group and it helped me greatly in understanding my son's condition. It also gave me strength in dealing with such a rare birth defect.

  Visitor: Joann Bilek
Reference: 
 Location: Battle Creek, Michigan
  WebSite: 
 Web Info: 
  Contact: joann_bilek@spartanstores.com
     Date: Fri, Nov 10, 2000 at 16:23:44 (PST)

Comments: Just an update on Jamie. I've been working on updating Jamie's Page. I'm near done. Wanted to let everyone know that Jamie is scheduled for another surgery on Jun 12, 2001. Dr. Lubicky has decided to try a different route to her rotation since the original Van Nes procedure has started to derotate. They will be breaking her tibia midway and rotating her leg from there. During this procedure they will evaluate the condition of her ankle and may proceed with the ankle fusion at that time. She is really doing well, but the derotation is very noticable, especially to her prosthetisist who has to adjust the direction of her prosthesis at every check up. Dr Lubicky was concerned that her Van Nes could do this due to the fact that she is missing her hip joint. He hopes that in breaking the leg further from the hip joint, derotation will not be a factor. I will keep you all posted and I promise to have Jamie's updated page to Mike after the first of the year if not sooner. Keep in touch everybody. Aunt Jo

  Visitor: Cindy and Dave  Kenyon
Reference: 
 Location: Toledo, Ohio
  WebSite: 
 Web Info: 
  Contact: r121898@aol.com
     Date: Thurs, Nov 02, 2000 at 16:36:04 (PST)

Comments: Our son is now going on 23 months old. When I was 7 months pregnant, we found out he was going to be born with a short femur and no fibula. We researched and talked to all different people trying to get all the information we could so we could make the right decision for our son. This web site was our lifesaver. It helped us in our darkest hours, as we read all the different stories and what others were going through or had went through with their child. On Nov 10, 1999(almost a year ago), our son had the Symes amputation done. They took off his left foot. He was in a cast for about 4-5 weeks. He was fitted for a prosthesis and started wearing it in Jan. He started walking in about 2-3 weeks. He is now a very busy and energetic little boy. He lets nothing stop him. If he sees something he wants to do, he gives it his best shot. He climbs up on everything and acts just like any 'normal' 23 month old. We are looking at a second surgery maybe in Jun or Jul to fuse the knee. If our story helps anyone or we can answer any questions, please feel free to e-mail us at r121898@aol.com.

  Visitor: Cindy Kenyon
Reference: 
 Location: Toledo, Ohio
  WebSite: 
 Web Info: 
  Contact: R121898@aol.com
     Date: Thurs, Nov 02, 2000 at 16:11:02 (PST)

Comments: No comment at this time.....

  Visitor: Misti Blue
Reference: told about by therapist
 Location: El Paso, Texas
  WebSite: 
 Web Info: 
  Contact: lex@whc.net
     Date: Fri, Oct 13, 2000 at 12:10:40 (PDT)

Comments: No comment at this time.....

  Visitor: Derrick Norris
Reference: I was researching for a informative speach.
 Location: Michigan
  WebSite: 
 Web Info: 
  Contact: dmnorris2@juno.com
     Date: Mon, Oct 09, 2000 at 19:23:22 (PDT)

Comments: I am 22 years old. I have PFFD, and my parents chose to have my right foot amputated at the age of 2. My right leg is over a foot shorter than my left. The main reason that amputation was chosen, was for cosmetic purposes. I want to send a few words of encouragement to worried parents. I have lived a normal life. I can truly say that every thing has been harder on my parents than on me. I play basket-ball, skateboard, ice skate, and was even on the rowing team in my highschool. My parents are the best, they have never discouraged me, if I wanted to go out and climb a tree, my parents would just stand there nervously watching. Ihave fun with my prostetic leg, and even paint it up with fake tatoos. Right now I have flames covering the bottom. What ever your choice for your children is, stand by them and support them in all they do. Never tell them that they can't or that they shouldn't attempt something. I may have had my fare share of scratches and bruises, but they are all worth it. Friends are amazed because I can run faster than some of them, and jump higher than all of them. Never forget to tell your child how very special he/she is. Because they are special, and may one day be able to help out another child with PFFD. Thanks.

  Visitor: Mike
Reference: 
 Location: 
  WebSite: 
 Web Info: 
  Contact: 
     Date: Wed, Sep 27, 2000 at 19:14:54 (PDT)

Comments: Just another test

  Visitor: Mike
Reference: 
 Location: 
  WebSite: 
 Web Info: 
  Contact: 
     Date: Wed, Sep 27, 2000 at 19:10:43 (PDT)

Comments: Test of new guestbook

  Visitor: Gerald Eyers
Reference: Yahoo!
 Location: Wells, ENGLAND
  WebSite: 
 Web Info: 
  Contact: geyers@btinternet.com.uk
     Date: Sun, Sep 10, 2000 at 05:45:17 (EDT)

Comments: Thanks, lots to read.

  Visitor: Brian Day
Reference: 
 Location: Raleigh, NC
  WebSite: 
 Web Info: 
  Contact: Brian.day@pobox.com
     Date: Mon, Sep 04, 2000 at 13:45:56 (EDT)

Comments: My last posting was in Mar of last year (1999) just before Erin (our 4 year old daughter) had her left leg (her better leg, both have PFFD) fixed by Dr. Dror Paley. A 9 hour surgery with 3 major procedures (hip, femur & knee) resulted in a wonderfully functional and strong leg! For the past year Erin walked with a lift on her right leg. Earlier this year, we were about to give the 'OK' to the rotation plasty to use her ankle as a 'knee' for moving a prosthesis. However at that time, we were fortunate to meet Arnaud Soubeirin from France who has been producing internal prostheses for children who had bones removed due to cancer. He has >10 years of experience with these devices and has a very high success rate. These internal prostheses expand as the child grows via an external inductive coil which causes an internal plastic piece to temporarily melt and allow an internal spring to extend. Erin has had a fixator on for over two months now and has extended (distracted) her right leg about two inches with about four inches to go. After distraction is complete, she will be measured for the 'femur' which will include an artifical knee and hip. Depending on how much extension she getst now, she will have to have another internal prosthesis installed once or twice before becoming an adult and having a solid one installed. Erin was selected for this because Arnaud is just now venturing beyond cancer victims and because her 'good' leg has a short femur, so not so much distance to make up compared to someone with a perfect other leg. I'll keep you posted. (Pun intended!)

  Visitor: Rick Rhoton
Reference: been here before but its been a while
 Location: Bullhead City,AZ
  WebSite: 
 Web Info: 
  Contact: reslrranch@hotmail.com
     Date: Wed, Aug 16, 2000 at 07:33:27 (EDT)

Comments: My gosh a whole lot has happened in the last few months since I have left a message and see that quite a few people have signed in and have left messages, I am hoping that one of you have had the Van Ness and can give us some insight and maybe a picture of your childs leg before and after, we have only been able to find drawn pictures on the internet and they just don't give anything justice. We would like this so we can make the most educated decision possible. I know that I have recieved many e-mails from alot of you and have also even recieved a video, which helped alot but now we are trying to decide on the best route for Sam. Van Ness vs lenghtening, they both have there pros and cons. Thanks for any help anyone might be able to give us.

  Visitor: Jason
Reference: 
 Location: More about my girlfriend Shannon
  WebSite: 
 Web Info: 
  Contact: 
     Date: Mon, Aug 14, 2000 at 13:47:35 (EDT)

Comments: Only 4 more days Shannon and I leave for college, we are both very exited about school and also that we can be together. Shannon has got use to wearing her brace, she is using the knee lock pretty much all the time now, she says for the first time in her life she is able to walk without being afraid of falling. Her doc told her not to worry to much about damage from walking with her leg always straight but if she starts to have any pain in her hip or back to let him know, so far at least no problem. I am so proud of Shannon, she is so strong and confident, I know we are both still very young but I hope and pray we can stay together always.

  Visitor: Helen Nash
Reference: by the longest route possible
 Location: Bowmanville Ontario Canada
  WebSite: 
 Web Info: 
  Contact: emilyn@look.ca
     Date: Sat, Jul 29, 2000 at 11:36:28 (EDT)

Comments: I am now 38 years old. In the last 4 years my hip, knee and spine are degenerating at an alarming rate. I have bilateral pffd with varus and vulgus of the lower extremities. My right side is affected to the point where I use a prosthesis;and because of this, ironically it is so severe that there is very little pain. My left side is another story altogether. My first operations were at 3 weeks of age, performed at the Hospital for Sick Children in Toronto, Canada. 15 orthpaedic surgeries later, they now tell me there is nothing more they can do for the pain, except increase my narcotic and muscle-relaxant medication. Where I once lived independently in Vancouver as a Music Therapist in Palliative Care, I now live at home with my parents and find it difficult to get out of bed every day. Is ther ANYONE out there experiencing anything similar to my situation. Living with constant and extreme pain, and having to give up my vocation, friends and independence has been a very difficult situation to adapt to. I would very much like to hear from anyone because in all the years I've been around hospitals and clinics, I have only seen 2 younger children with conditions similar to mine. I have never spoken to anyone with pffd yet would very much like to reach out and be a part of this viritual support group. Thankyou most sincerely, Helen Nash emilyn@look.ca

  Visitor: Linda
Reference: 
 Location: Huntington Beach, CA
  WebSite: 
 Web Info: 
  Contact: rsedivy@aol.com
     Date: Mon, Jul 17, 2000 at 23:15:30 (EDT)

Comments: My daughter Shauna who is 12, went through a lengthening last year. Now she wears a lift on her shoe of only 1 1/2 inches. Her doctor wants to put staples in her good leg growth plate at the knee. It makes sense because she does not want another lengthening. I'm still unsure if this is the right thing to do. Has anybody had this done? Thanks for any response.

  Visitor: Tracey Robbins
Reference: My closest friend is Cherie
 Location: Edmonton, Alberta
  WebSite: 
 Web Info: 
  Contact: 
     Date: Mon, Jul 17, 2000 at 14:23:53 (EDT)

Comments: I would like to say that Cherie is probably one of the most strongest, brightest people I know. She doesn't stop at anything. She is absolutely amazing. She is a very successful young woman who has accomplishment so much so far in her life. I commend you Cherie.

  Visitor: Tracey Robbins
Reference: My closest friend is Cherie
 Location: Edmonton, Alberta
  WebSite: 
 Web Info: 
  Contact: 
     Date: Mon, Jul 17, 2000 at 14:23:14 (EDT)

Comments: I would like to say that Cherie is probably one of the most strongest, brightest people I know. She doesn't stop at anything. She is absolutely amazing. She is a very successful young woman who has she has accomplishment so much so far in her life. I commend you Cherie.

  Visitor: Tracey Robbins
Reference: My closest friend is Cherie
 Location: Edmonton, Alberta
  WebSite: 
 Web Info: 
  Contact: 
     Date: Mon, Jul 17, 2000 at 14:13:19 (EDT)

Comments: No comment at this time.....

  Visitor: Kathy
Reference: Found you by going under medical dictionary
 Location: Lincoln NE
  WebSite: 
 Web Info: 
  Contact: kzimme2600@aol.com
     Date: Sun, Jul 16, 2000 at 13:00:38 (EDT)

Comments: I am interested in learning about this my niece who is 4 months old has pffd. I am trying to help out my sister and her husband find out as much as possible to help them decide what treatment is best.

  Visitor: Jason
Reference: update on girlfriend Shannon
 Location: 
  WebSite: 
 Web Info: 
  Contact: 
     Date: Tuesday, Jul 11, 2000 at 12:59:43 (EDT)

Comments: Shannon got her brace last week which she is still getting use to. It is suppose to keep her leg in alinement and prevent from over-extending her knee, also there is a knee lock she can use when she is tired or has to stand for a long period. She is finding she has to use the lock way more than she thought, without the ability to over-extend her knee she feels very unsteady alot of the time. I understand how over-extending will cause long term damage to Shannon's knee, but it seems like walking with her knee locked will put stress on other areas and probably cause damage. Does anybody have any experience with this? For those who havn't read my earlier messages, Shannon has a short leg since birth, she had lengthing surgery (horror story!) when she was 8 and currently (she's 18) wears a lift on her shoe of about 3 inches.

  Visitor: julie Honeycutt
Reference: bookmarked
 Location: Grand Rapids, Michigan
  WebSite: 
 Web Info: 
  Contact: jhoneycutt4@juno.com
     Date: Fri, Jul 07, 2000 at 18:01:58 (EDT)

Comments: Hi, I am a PT who works with children and families with PFFD. anyone have any comments re: the longterm followup of limblengthening in PFFD? Like 10 years post lengthening? Any complications? Sports involvement? Recurrent dislocations or surgeries?

  Visitor: Crystal
Reference: Search
 Location: Renton, Washington
  WebSite: 
 Web Info: 
  Contact: ckappenman@uswest.net
     Date: Wed, Jul 05, 2000 at 04:18:17 (EDT)

Comments: I have a 16 month old daughter (D.O.B. 2/22/99) who has a short right femur. She is a candidate for bone lengthening when she is 5 or 6 at Children's Hospital in Seattle, Washington. I would love to hear from anyone who has experienced bone lengthening at this hospital. I have been on the site before but never noticed the guestbook. It is a wonderful source of info and support. Thanks.

  Visitor: LIMEXANT DASIE
Reference: NEWBORN
 Location: USA
  WebSite: 
 Web Info: 
  Contact: FRITZYCO@NETZERO.NET
     Date: Mon, Jun 26, 2000 at 02:48:12 (EDT)

Comments: No comment at this time.....

  Visitor: Barbara Doughty
Reference: search
 Location: 
  WebSite: 
 Web Info: 
  Contact: badoughty@accnorwalk.com
     Date: Thurs, Jun 22, 2000 at 20:25:57 (EDT)

Comments: It's been a long time since I posted. I have a niece, Sarah, who will be 2 years old in Jul who has bilateral PFFD. She has had her clubbed feet surgically repaired and is doing very well. She stands and crawls on hands and feet. She doesn't walk yet but is getting closer. Here is a little website that shows a few pictures of her. http://www.zyworld.com/mapletree/Home.htm Barb Sarah's aunt

  Visitor: Robyn
Reference: 
 Location: New Jersey
  WebSite: 
 Web Info: 
  Contact: Robyn72@aol.com
     Date: Thurs, Jun 08, 2000 at 19:27:21 (EDT)

Comments: Just wanted to say hi. Allison is now 7 months old. We go back to Philly in Sep for a follow up and I am guessing she will be fitted for her shoe. We took her for an ultra sound on her hip, thankfully it looks good. I have to laugh because one doctor told us how far behind in sitting up and crawling she would be. Well not my kid. I have to keep all eyes on her. She darts across the room and pulls herself up on EVERYTHING. As far as sittingup she mastered that about 2 1/2 months ago. She can walk bit if we hold her hands. I get such a kick seeing her scoot around. Funny how this time last year I was such a nervous wreck thinking about this PFFD, now, my biggest concern is making sure she can't pull a bookshelf on her. I will write more as time goes on. Till then everyone take care. Robyn

  Visitor: Julie Honeycutt
Reference: keep checking
 Location: Grand Rapids, Michigan
  WebSite: 
 Web Info: 
  Contact: jhoneycutt4@juno.com
     Date: Wed, Jun 07, 2000 at 17:36:08 (EDT)

Comments: I am the frustrated Physical therapist in Michigan who is trying to get more info and references for parents who do not have access to the internet. Now there seems to be a confusion out there re: real PFFD DX and congential short femur, especially in looking at lengthening options. Lengthening is more of an option when the hip is developing near normal. This is confusing also in the literature!

  Visitor: Shauna Sedivy
Reference: my mom found it.
 Location: California
  WebSite: 
 Web Info: 
  Contact: splitgrl00@aol.com
     Date: Sat, May 27, 2000 at 23:31:20 (EDT)

Comments: Hi, my name is shauna( age 12 ) and I went through a leg lengtining last year. I visited the doctor yesterday and she says I'm going to stop the growth in my right leg. I'm a little nervase, but she says it will make my legs about evan. I'm looking for advice for those of you who have gotten the growth stopped in your leg. Feel free to e-mail me at: splitgrl00@aol.com. Thanks, Shauna

  Visitor: Jason
Reference: 
 Location: update on Shannon
  WebSite: 
 Web Info: 
  Contact: 
     Date: Wed, May 24, 2000 at 11:01:06 (EDT)

Comments: My girlfriend Shannon told her parents and doctor there was absolutely NO WAY she would put off college and NO WAY she would go through another lengthing. Doctor reassured her parents this is not the last chance, they could still do it later on, and this calmed them down now they are willing to except the fact that Shannon would rather live with her leg the way it is. I am very proud of the way Shannon stood up for what she wanted, we will be graduating in 3 weeks and then to college in the fall. We are going to the same school so we will still be together!! With all the extra walking on campus, Shannon's doctor strongly recommended a brace to aline her leg and keep from over-extending her knee, which she will be getting this summer.

  Visitor: Linda Woolwine
Reference: 
 Location: Oklahoma City, Oklahoma
  WebSite: 
 Web Info: 
  Contact: Linda-Woolwine@ouhsc.edu
     Date: Mon, May 22, 2000 at 16:28:41 (EDT)

Comments: My daughter is a beautiful, 20 year old Sophomore in college. She was born with Type IV PFFD, right leg. In 1980 very little information was available. My daughter had Syme amputation and hip surgery at 20 months. She made a successful recovery, was walking again at 23 months and over the years participated in softball, basketball, volleyball and for four years participated in gymnastics, was a member of the team and competed in district meets. In high school she applied and was accepted to an International Baccalaureate program, held school offices, attended the prom 3 years in a row, graduated with honors and then on to college where she is a Presidential Scholar and carries a 4.1 GPA. The point of this brag-fest? These children can do anything!!

  Visitor: Jason
Reference: Girlfriend Shannon
 Location: 
  WebSite: 
 Web Info: 
  Contact: 
     Date: Thurs, May 11, 2000 at 20:39:14 (EDT)

Comments: My girlfriend has a short leg due to a birth defect. When Shannon was 8 (she is 18 now) she went through a leg lengthing. She says she will never forget the pain, now she may have to goi through it again. Her parents and doctors want to lengthen her leg 3 inches that would make her legs nearly even. Shannon would rather leave it alone, she wears a shoe lift and most of the time can walk with only a small limp. But when she is tired or walks alot, she has pain in her leg, the limp gets worse and she has to push back on her leg with her hand to keep her knee from giving out. Her doctor says this is because her leg is out of alinement and this would be fixed along with the lengthing. Without the lengthing Shannon will need to start wearing a brace. What should she do?

  Visitor: FRANK GRATKE
Reference: 
 Location: WISCONSIN
  WebSite: 
 Web Info: 
  Contact: GRATKE.EXECPC.COM
     Date: Wed, May 10, 2000 at 16:12:12 (EDT)

Comments: SON BORN 5-5-92 PFFD AIKEN CLASS D RIGHT LEG QUESTION: IS SWIMMING GOING TO HELP IF SURGERY IS PLANNED? HOME PHONE 414-762-3424

  Visitor: Lydia Brew
Reference: searching for PFFD
 Location: the Netherlands
  WebSite: 
 Web Info: 
  Contact: dbrew@packardbell.org
     Date: Sat, Apr 29, 2000 at 09:44:34 (EDT)

Comments: Our daughter Esther is born (feb.18 1998) with PFFD.In Holland is not so much information about PFFD , so we are happy we have found some on internet !

  Visitor: Kathy Bell
Reference: searching internet
 Location: Kinston, North Carolina
  WebSite: 
 Web Info: 
  Contact: babysprout@yahoo.com
     Date: Sat, Apr 15, 2000 at 14:32:09 (EDT)

Comments: I have a three-year old with ppfd. She is getting to have a hip fusion. Any suggetions to help her get through hard times she will experience in life?

  Visitor: Cindy Gustavson
Reference: 
 Location: 
  WebSite: 
 Web Info: 
  Contact: cgustavson@mindspring.com
     Date: Sat, Apr 01, 2000 at 19:25:03 (EST)

Comments: I have an eight year old son with PFFD. He is very active. He is really into swimming and riding his bike. He still has his natural leg & foot,and is fitted with a prosthesis.We go to Shriners hosp.In greenville S.C. I am very happy to have found this site. When he was born in 1992,No one seemed to really know alot about it. And until I went to Shriners I had never saw another child with PFFD. And had never talked with another parent.

  Visitor: Cindy Gustavson
Reference: my sister found this site.
 Location: Weaverville, N.C.
  WebSite: 
 Web Info: 
  Contact: cgustavson@mindspring.com
     Date: Sat, Apr 01, 2000 at 18:48:20 (EST)

Comments: I have an eight year old son with PFFD. We have not amputated.

  Visitor: Nancy Lewis
Reference: SuperKids website
 Location: Jacksonville, IL
  WebSite: 
 Web Info: 
  Contact: njm@csj.net
     Date: Wed, Mar 29, 2000 at 19:30:25 (EST)

Comments: My son is 10 and has PFFD, affecting his right leg. He had an adjacent, although useless, foot with 4 toes amputated at 9 months and is a total live wire in sports and in life. We have met one other person, a young man, with PFFD and were so intrigued that he even had a similar 'dimpled' ridge on the lower part of his leg.

  Visitor: Ginette McKenzie
Reference: 
 Location: 
  WebSite: 
 Web Info: 
  Contact: Teppu@tmarlow.swinternet.co.uk
     Date: Sat, Mar 18, 2000 at 10:19:10 (EST)

Comments: I am trying to get in touch with people with PFFD or parents of PFFD children , from Ireland.

  Visitor: michelle maly
Reference: searching for pffd
 Location: birmingham, alabama
  WebSite: 
 Web Info: 
  Contact: vmmaly@mindspring.com
     Date: Sun, Mar 12, 2000 at 21:04:43 (EST)

Comments: I have a 3 year old daughter with PFFD. When she was born the doctors in Birmingham told us her foot would need to be amputated at 9 months old. We decided to get a second option and went to see Dr Morrissey in Atlanta. He told us that we did not have to make a decision now that she just need to develop normally. As it turns out it looks like she may need to keep her foot so that it will at length and stablity for that leg. She is a joy and I could not imagine her any other way. Samantha is also in a book called Just As I Am - Americains with Disabilities. The stories in this book are very inspiring and gives you a new perspective on what normal is.

  Visitor: michelle maly
Reference: searching for pffd
 Location: birmingham, alabama
  WebSite: 
 Web Info: 
  Contact: vmmaly@mindspring.com
     Date: Sun, Mar 12, 2000 at 20:55:34 (EST)

Comments: No comment at this time.....

  Visitor: Kathleen McConnell
Reference: 
 Location: Quaker City ,Ohio 
  WebSite: 
 Web Info: 
  Contact: kmcconnell@1st.net.com
     Date: Fri, Mar 03, 2000 at 09:51:52 (EST)

Comments: I have a 14 year son with PFFD. I have had alot of rough times with seeing him go through surgery. But all in all, the comical things have a tendancy to out weigh the bad. Have you ever come home to find your child doing things that a person with two good legs should not be doing?I came home one day to find my son on a ten-speed,with his crutches on the handlebars, and wearing a rollerblade on his good leg. Talk about a trick-rider? Evil Kinevil has nothing on this kid! If it weren't for his sense of humor I could not have made it through. He has no quams about his condition. He has one leg and who cares what other people have to say. He has more fun than ten kids put together. We live in a very small community in Ohio,things here have been the same for centuries,and then Joey showed up.Now it is not uncommon to drive through town and find my son's leg propped against the only stop sign in town. It gets in the way when he is riding his bike,so he just drops it off until later.He is like no other child that I know and I am glad. I can honestly say that he has definently made my life much more interesting. God bless these children and their tougher-than-nails parents!

  Visitor: Yianna Paula
Reference: 
 Location: Greece
  WebSite: 
 Web Info: 
  Contact: paula1@otenet.gr
     Date: Thurs, Mar 02, 2000 at 17:07:33 (EST)

Comments: Hi, my name is Paula. Last year, in Jan, my beautiful niece,Lydia, was born. At birth she was dignosed unilateral PFFD. I must admit that it was a shock to all of us and at first it was very difficult to get used to the idea that this precious angel had something that was totally unknown to us. In the beginning we didn't know anything about this abnormality, and to be honest it was through this page on the internet, which I found completely by chance, that we managed to learn some things about it.I was shocked to see all that pain and suffering that was coming out of these messages. Now, a year later, the situation has improved. My precious little niece is growing more and more beautiful and she is so stubborn that nothing seems to stand in her way. I have faith that she will get over any obstacle, even though there is a hard long road ahead of us. For the time being, we are all anxious to see her walk. She will have to wear a special prosthesis, until next year, when she will have her first operation by Dr.Paley, in Baltimore.(if anyone has gone through a similar condition, I mean with the special prosthesis, I would be grateful if you could contact me). The only thing I can wish to anyone who has gone through this situation is to have strength. I don't know if I would have been able even to pronounce these words a year ago, but now, a year later, things seem so different, and even though we know the difficulties, we all seem in a way determined to make the best we can for our precious Lydia. Thank you for taking the time to read this few lines....

  Visitor: Julie Honeycutt
Reference: search
 Location: Grand Rapids, Michigan
  WebSite: 
 Web Info: 
  Contact: jhoneycutt4@juno.com
     Date: Mon, Feb 28, 2000 at 15:53:58 (EST)

Comments: I am a pediatric physical therapist working at the Center for Limb Differences in Grand Rapids, Michigan. I am always looking for the latest info and support for all of our patients here with PFFD. Mostly, lengthening vs. non-lengthening

  Visitor: Ashley Wischnewsky
Reference: Ohio.net
 Location: Texas
  WebSite: 
 Web Info: 
  Contact: myangels@angelfire.com
     Date: Sun, Feb 27, 2000 at 18:08:09 (EST)

Comments: I am new to the PFFD situation. My daughter Gracie was born on Dec 6, 1999 and was diagnosed with PFFD. Because she is so young we are not sure of the severity of her condition, we have to wait for her bones to calcify some more before we can be sure of exactly what we are dealing with. I have done alot of studing on the internet, but I would like some first hand advise from other parents.

  Visitor: leda .
Reference: by dissorder name
 Location: michigan
  WebSite: 
 Web Info: 
  Contact: L9100@aol.com
     Date: Fri, Feb 18, 2000 at 20:23:44 (EST)

Comments: I have a 5wk old daughter diagnosed with this...i'd like to know what i can do for her now and in the future. her femer seems to be 2cm shorter than the other...that was at birth.

  Visitor: Nanette Hendrickson
Reference: my daughter found it
 Location: california
  WebSite: 
 Web Info: 
  Contact: nannybc @aol
     Date: Sat, Feb 12, 2000 at 12:22:13 (EST)

Comments: Hi, I'm the mom. My daughter has had two leg lengthening surgeries to correct her PFFD, and has stapples in her other leg to limit the growth. Now at 16, her legs are just about even. It's a long hard road, but light is at the end of the tunnel! Samantha is a remarkable person and enjoying teenage life to the fullest. I have nothing but thanks and love for the doctor that made it possible. Dr. John King and L.A. Childrens Hospital. He is a miracle worker. Any one that would like to talk via e-mail, feel free to write.

  Visitor: Robyn
Reference: 
 Location: New Jersey
  WebSite: 
 Web Info: 
  Contact: Robyn722aol.com
     Date: Tuesday, Feb 08, 2000 at 21:00:42 (EST)

Comments: Hi everyone. I have a four month old with PFFD. My husband and I took her to CHOP in Philly, just for a consult. We are meeting with a docotr at Schriners in Mar. Has anyone had experience with Schriners???

  Visitor: Robyn
Reference: 
 Location: Riley
  WebSite: 
 Web Info: 
  Contact: Robyn72@aol.com
     Date: Sat, Jan 29, 2000 at 22:38:33 (EST)

Comments: Hi, I am on under my cousins name. We just took Allison our 3 month old to Chop in Philly. We are going to meet with Dr Davidson at Schriners(did I spell it right?) in Mar. We dont know the full extent of her pffd, but any ifo would be greatly appreciated. Pffd was found on my 18 week sono while I was pregnant.

  Visitor: Mary Lou LaVallee
Reference: searched for pffd
 Location: Saskatchewan Canada
  WebSite: 
 Web Info: 
  Contact: lavallee_m_lou@hotmail.com
     Date: Fri, Jan 28, 2000 at 12:02:44 (EST)

Comments: My daughter is 13 yrs old. We are searching for other teens born with pffd in Saskatchewan (or anywhere in Canada)

  Visitor: Gerri McCartney
Reference: 
 Location: Belfast
  WebSite: 
 Web Info: 
  Contact: gerri@excite.co.uk
     Date: Fri, Jan 28, 2000 at 07:32:32 (EST)

Comments: My baby sister was born with congenital pseudo orthosis. She is now two years old and after numerous operations we have discovered that they haven't been successful and if the next two operations are failures she will loose her leg. Your page has given me an insight to how others have coped. We are still hoping for a cure. Would love to hear from anyine in same position.

  Visitor: Tim & Lorrie Woitowich
Reference: searching for info on pffd
 Location: Medicine Hat, Alberta Canada
  WebSite: 
 Web Info: 
  Contact: lwoitowi@telusplanet.net
     Date: Fri, Jan 14, 2000 at 22:19:15 (EST)

Comments: Our daughter Shelby was born last Apr 27, 1999 with pffd of her left leg. To this point we have been to Alberta Childrens Hospital in Calgary and the Shriners Hospital in Spokane. They both have said the same thing,to either have the van nes or amputation of her foot. Come Apr we have an appointment with Dr. Paley. At this time she is not yet able to sit by herself without falling over or even trying to do any type of mobility with her upper part of her body. I work every day with her but she can be very stubborn at times. I am not sure if I am expecting to much to soon or not. Anyone with some advice would be greatly accepted. Hope to hear from someone soon. Thanks:

  Visitor: Tim & Lorrie Woitowich
Reference: searching for info on pffd
 Location: Medicine Hat, Alberta Canada
  WebSite: 
 Web Info: 
  Contact: lwoitowi@telusplanet.net
     Date: Fri, Jan 14, 2000 at 22:19:11 (EST)

  Visitor: Tim & Lorrie Woitowich
Reference: 
 Location: Medicine Hat, Alberta Canada
  WebSite: 
 Web Info: 
  Contact: 
     Date: Fri, Jan 14, 2000 at 22:04:38 (EST)

Comments: No comment at this time.....

  Visitor: Sydney 
Reference: My granddaughter has been diagnosed PFFD
 Location: Texas, USA
  WebSite: 
 Web Info: 
  Contact: wmwisch@flash.net
     Date: Wed, Jan 12, 2000 at 21:35:24 (EST)

Comments: No comment at this time.....

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