PFFDvsg
Guestbook - 2002
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Visitor: REAJEAN BLACKSTON
Reference:
Location: SHREVEPORT, LA
WebSite:
Web Info:
Contact: REAVONN318@AOL.COM
Date: Fri, Nov 22, 2002 at 23:38:39 (EST)
Comments: EMAIL ADDRESS- REAVONN318@AOL FOR CONTACT ABOUT
BELOW ENTRY
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Visitor: REAJEAN BLACKSTON
Reference:
Location: SHREVEPORT, LA
WebSite:
Web Info:
Contact:
Date: Fri, Nov 22, 2002 at 23:28:46 (EST)
Comments: MY DAUGHTER, LAVENDER WAS BORN 12-26-01 AND
IS NOW 11 MOS OLD AND HAVE BEEN DIAGNOSED WITH PFFD AT BIRTH. I AGREE WITH
EVERYONE WHO SAYS THEY NEED HELP. IT IS NOT EASY AT ALL ESPECIALLY WHEN THERE
ARE SO MANY OPTIONS BUT I AM REALLY CONCERNED ABOUT SOME OF THE LONG TERM
EFFECTS. I WOULD LIKE FOR MY DAUGHTER TO LIVE A HEALTHY AND NORMAL LIFE WITH
NO COMPLICATIONS. I WOULD LOVE TO HEAR FROM SOME OF THE PARENTS BECAUSE I
DO NEED SOME INSPIRATION AND HELP.
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Visitor: Tiffany Colchin
Reference: search engine
Location: Springfield, Ohio
WebSite:
Web Info:
Contact: t_nick212001@yahoo.com
Date: Fri, Nov 15, 2002 at 00:29:02 (EST)
Comments: My son Jordan was born Jan 5, 2002 with PFFD.
He also is missing his left leg almost completely. There is no bone in his
stump from the PFFD, merely a partial femoral head. His pelvis where his
femurs should go in are severly underformed which is requiring yet another
surgery. His knee is also fused completely in his one good leg. I was so
surprised at first because nobody had expected it and I had never even heard
of it. Being a young mother I was scared because I had no clue how I was
going to raise 2 children, let alone one with multiple physical handicaps.
But now Jordan is 10 months old and just the smartest and friendliest little
boy I have ever known. His sister adores him and is always the first one
to explain to our visitors that her baby brother has only one leg and it's
really little. I am glad that she has taken this all so well. There are times
that she asks the inevitable 'why' and is never satisfied with the simple
'that's how God made him' answer. I hope that when she is old enough to read
that she comes to this site and sees that Jordan is not the only little baby
with a 'little leg' and that she can get some sort of understanding from
this. Thank you for creating this site. Sincerely Tiffany Colchin and Family
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Visitor: Susan
Reference: Searching PFFD
Location: New York now living in Oslo Norway
WebSite:
Web Info:
Contact: Nasus@online.no
Date: Sat, Nov 02, 2002 at 08:30:41 (EST)
Comments: Wonderful Site, wish it was around in 1974
when my son was born with PFFD. Back in those days one had to overcome the
Dr's who wanted to 'do it there way or noway' Support group then ? Nope..
Info ? nope. I had to go myself dressed in 'Dr Whites' to the medical libary
to seek info. keep up the good work !
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Visitor: CINDY GUSTAVSON
Reference: WEB SEARCH
Location: WEAVERVILLE, N.C.
WebSite:
Web Info:
Contact: CINDYGUSTAVSON@CHARTER.NET
Date: Fri, Oct 11, 2002 at 15:31:53 (EDT)
Comments: I HAVE A 10 YEAR OLD SON WITH PFFD. WE ARE
SEEN AT SHRINER'S HOSPITAL IN GREENVILLE S.C.. WOULD LIKE ANY INFORMATION
ABOUT THE CLASSIFICATIONS OF PFFD. THANKS SO MUCH.
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Visitor: Natalie Albert
Reference: web search
Location: Houston, TX
WebSite:
Web Info:
Contact: forestrychick@hotmail.com
Date: Mon, Oct 07, 2002 at 01:53:54 (EDT)
Comments: My daughter Maya born 7-12-02 has been diagnosed
as having severe bilateral PFFD (class D). She is scheduled to go to the
Shriner's Hospital in Nov but the wait is killing me. I would love to hear
from anyone who is familiar with situations such as hers.
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Visitor: Renee' M. James
Reference: searching for info. on PFFD
Location: Lake Charles, Louisiana
WebSite:
Web Info:
Contact: RJsdbb@AOL.com
Date: Mon, Sep 30, 2002 at 11:59:04 (EDT)
Comments: I am the mother of 4: Shelby 8(the only girl),
David 7, and 2yr old twins Blake and Braedan. Blake was born with PFFD and
our option at this time is amputation and fusion of the knee. What little
femur he does have has been broke since birth and his hip joint and socket
don't meet. We have an appointment on Nov. 5, 2002 to begin schedueling surgery.
We are using Shriner's Hospital in Shreveport Louisiana. What we know as
of now is they will do the amputation and fusion soon, they will also use
the bones in the foot to graph the break in the femur. We will not be able
to do his hip surgery until he is 5yrs. They made us shoes with extension
2 times, but to no prevail. It caused him alot of pain. Now don't get me
wrong, Blake is a remarkable child. He walks on the knee of the good leg
and the foot of the PFFD side(it's the perfect length). He can climb on more
cabinets using his arms. But, there are alot of allowances to be made, for
him and his twin. I haven't been able to speak to any one who has experienced
any of this, so if any you have a chance please e-mail me at RJsdbb@AOL.com
Thank-You for this site I had nowhere else to go... Renee' James
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Visitor: Tammy and Jason Antonyk
Reference:
Location: BC Canada
WebSite:
Web Info:
Contact: the4antonyks@shaw.ca
Date: Wed, Sep 18, 2002 at 16:39:14 (EDT)
Comments: sorry we entered our email in wrong. Our right
one is as above. sorry for any inconvinience.
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Visitor: Jason and Tammy Antonyk
Reference:
Location: BC Canada
WebSite:
Web Info:
Contact: the4antonyk's@shaw.ca
Date: Fri, Sep 06, 2002 at 01:37:49 (EDT)
Comments: Our email address has changed if anyone has
tried to contact us. Our daughter turned two months yesterday. She was born
with PFFD and Fibular Hememilia. She is growing quick. She was born 8.1 lbs
and is now 12 lbs. If anyone has any advice or just would like a friendly
family to talk to, please email us. Thanks Jason
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Visitor: Tracey Arnold
Reference: Yahoo
Location: Pennsylvania
WebSite:
Web Info:
Contact: jaded_btch@hotmail.com
Date: Fri, Aug 30, 2002 at 19:10:50 (EDT)
Comments: I am thrilled to once again find this site.
Good to read all the updates and stories.
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Visitor: Tammy Lathrup
Reference: search on google
Location: Michigan
WebSite:
Web Info:
Contact: tlathrup@wideopenwest.com
Date: Sat, Aug 17, 2002 at 01:19:26 (EDT)
Comments: how can I add a page for my daughter I think
this would be a good project for me an her to work on together and would
like to know where I can find a place where she could chat with other people
so she can understand better her self she is 10 years old. Thank You, Tammy
Lathrup
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Visitor: Leatta Workman
Reference: web search
Location: Carthage, MO USA
WebSite:
Web Info:
Contact: workman@execs.com
Date: Fri, Aug 16, 2002 at 00:31:32 (EDT)
Comments: Due to amniotic band syndrome, I had pffd on
my left leg, my left arm ends at the elbow, and my right ends below a fused
elbow with two fingers. I am married and have 'perfect' biological children.
I am a professional woman and belive I have excelled because of my disability,
not in spite of it. We worst thing about PFFD is people trying to tell you
what you cannot do and trying to fix you. I had 22 'fixing' surgeries which
have left me with daily pain and little hope of wearing a prosthesis. Parents
need to be very cautious of what docs want and consider long term issues
such as aging, pain, and maintenance surgeries.
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Visitor: Mahmood farsiani
Reference: I have a child with pffd and coxa vara
Location: Iran
WebSite:
Web Info:
Contact: farsiani1@yahoo.com
Date: Wed, Aug 07, 2002 at 13:05:16 (EDT)
Comments: I do need enough information before a let any
docter have a surgery on my daughter!
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Visitor: Dion Woods
Reference:
Location: Seattle, WA
WebSite:
Web Info:
Contact: dionmarie@attbi.com
Date: Fri, Jul 26, 2002 at 21:55:38 (EDT)
Comments: I have a daughter Alena who was born on Nov
25, 2001. She has pffd Atkins type D bilaterally with no hip sockets and
one tiny piece of femur in one leg and none in the other. She is not a candidate
for lengthening because she doesn't meet the criteria. Her feet are clubbed
but not too severely she is having her acquiles tendons lengthened when she
is nine months old to flatten her feet so that she can use them and if all
goes well she may be able to walk she will just be low to the ground.. Does
anyone know of anybody with Pffd bilaterally...I know it is rare but I am
beginning to wonder just how rare.???
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Visitor: Kristina Jackson
Reference:
Location: California
WebSite:
Web Info:
Contact: SHARKIE4@msn.com
Date: Fri, Jul 26, 2002 at 03:00:43 (EDT)
Comments: My son was diagnosed with PFFD at 3 months.
He has just celebrated his first birthday, and has begun using a modified
shoe to help him walk. Thank you to everyone who has shared their story.
They have truly touched my heart.
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Visitor: Sandy Clabes
Reference: pffd
Location: Oklahoma
WebSite:
Web Info:
Contact: collin317@people.com
Date: Thurs, Jul 25, 2002 at 20:10:32 (EDT)
Comments: our 2 year old daughter was born with pffd.
She has had syme amputation and doing well. now needs osteotomy, knee
fusion...close growth plates. Lots of confusion between Mds as to timing
of procedures . Parents need help.
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Visitor: Julie Honeycutt
Reference: browsing
Location: Grand Rapids,MIch
WebSite:
Web Info:
Contact: jhoneycutt@mfbrc.com
Date: Sun, Jul 21, 2002 at 18:04:13 (EDT)
Comments: thank you to all of you that have shared your
experiences as adults with PFFD regardless of treatment. Thank you also some
of you for agreeing to speak with younger folks!! In corresponding with a
gal from the Uk and Brazil, was curious if anyone has been treated with the
Albizzia nail and what was their experience? I understand it cnnot be placed
until almost full growth has occured in the bone.
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Visitor: Jason & Tammy
Reference: Internet
Location: BC Canada
WebSite:
Web Info:
Contact: spa2300@shaw.ca
Date: Mon, Jul 15, 2002 at 13:31:35 (EDT)
Comments: We were blessed with another daughter on Jul
4th. We now have two. This daughter was born with PFFD and also Fibular
Hemimelia(her lower leg bone the Fibula is attached at her ankle but only
reaches approx. half way to her knee). The doctors told us that usually babies
are born with a syndrome, she is otherwise perfect. We have been to our
Children's hospital already and seen the leading expert in leg extentions.
He has given us hope for the future. I have read some comments written on
site of parents not excepting their child's condition. We have another daughter
whose perfectly healthy and I love each of my daughters equally and with
all my heart. Our children will grow up right if they are treated as if they
don't have limitations. We are very new to this so if anyone would like to
email us, we would like to get to know more people, hopefully close to us,
but in any case would love to here how you progresses through. Thank you
and give your child a hug for me as I hope you wish for mine. Jason
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Visitor: Einar Dag L Digernes
Reference: seaching the web
Location: Norway, Stord
WebSite:
Web Info:
Contact: einar.dag.l.digernes@akerkvaerner.com
Date: Tuesday, Jul 09, 2002 at 08:02:25 (EDT)
Comments: Our daughter,5 years old with PFFD Right Femur
Aitken AL1, is undergoing a femur lengthening with an ilizarov device. Her
surgery was in Febr 1. 2002, strecthed 9 cm until Apr 17. 2002. Our Dr. in
Oslo says we can choose if she shall have a cast or still have the ilizarov
device for the last 6 weks. Does anyone have any experience so please send
me a mail.
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Visitor: Connie Coward
Reference: internet search
Location: Jacksonville, FL
WebSite:
Web Info:
Contact: ladycoward@yahoo.com
Date: Mon, Jul 01, 2002 at 15:01:05 (EDT)
Comments: Our daughter, CJ, was born 5/19/00 with bilateral
PFFD Aitken type A. She is a patient at Shriners Hospital in Tampa and we
(I, my husband, and her doctor) are currently trying to determine the best
treatment for her. Her femurs are short and bowed, but appear to be normal
otherwise. Right now the question is whether to perform as osteotomy to
straighten the femurs. Since a bilateral type A is so rare, there is very
little information on treatment. Would be VERY interested in communicating
with others with bilateral type A. Great website, a true God-send!
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Visitor: Debbie Lindahl
Reference:
Location: Michigan
WebSite:
Web Info:
Contact: weeniesmom@yahoo.com
Date: Wed, Jun 19, 2002 at 14:46:42 (EDT)
Comments: My son, Jimmy, is currently undergoing a leg
lenthening with Dr. Paley in Baltimore. His surgery date was Apr 25, 2002
and he has gotten just short of 2 inches so far. The difference in his legs
before surgery was about 4 3/4 inches. Dr. Paly was hoping to be able to
get 3 inches with this surgery, but as of right now, Jimmy is doing so well
that we may be able to go for more....maybe even the entire difference. Dr.
Paley is a wonderful doctor, but another reason Jimmy is doing so well is
because of the support we have found at the Ronald McDonald House here in
Baltimore. There were 5 families staying here that were going through
lengthenings and the support network here has been invaluable. I would totally
recommend Dr. Paley and and the Ronald McDonald House. Please feel free to
contact me for more info.
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Visitor: Jacquie
Reference: searching
Location: Petaluma, CA
WebSite:
Web Info:
Contact: JMadis1234@aol.com
Date: Thurs, May 30, 2002 at 02:23:59 (EDT)
Comments: My 12 yr. old daughter has PFFD and had the
leg lengthening done 3 years ago, but it was unsuccessful. Now I am having
to convince her and her Dad that an amputation is necessary, as the Dr. has
said...Dad has talked her into denying it all and feeling it's better to
keep her foot and walk on crutches than to get a prostesis...I don't know
what to do.
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Visitor: Michael Behlke
Reference: google.com
Location: Grafton Ohio
WebSite:
Web Info:
Contact: belchermlb72@hotmail.com
Date: Thurs, May 23, 2002 at 20:01:10 (EDT)
Comments: I was born with PFFD in 1972. I was searching
to learn more about it when i stumbled across this site.
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Visitor: Sybil
Reference: searching
Location: South Carolina
WebSite:
Web Info:
Contact: jimginn1@charter.net
Date: Tuesday, May 07, 2002 at 14:08:36 (EDT)
Comments: Just wanted to give you my new e-mail address:
jimginn1@charter.net Thanks sybil
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Visitor: Ryan Brenden
Reference: research on residency project
Location: Nebraska
WebSite:
Web Info:
Contact: rbrenden55110@yahoo.com
Date: Fri, Apr 26, 2002 at 19:32:32 (EDT)
Comments: I am a unilateral PFFD with Van Nes Rotation
Plasty. I am completing my residency in prosthetics and will work in Nebraska.
Just checking things out. I didn't realize there was a website devoted this
topic.
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Visitor: Sheril
Reference:
Location: Canada
WebSite:
Web Info:
Contact: newhorizon@sympatico.ca
Date: Tuesday, Apr 23, 2002 at 09:58:40 (EDT)
Comments: I am a 35 year woman with 3 children, I have
PFFD and would like other parents to know that their children can lead happy
normal lives. My husband and I have been together 15 years and have a 13yr
old boy, 5yr old girl and 1yr old boy all happy healthy children. If anyone
wants to discuss anything with me, please email me.
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Visitor: Rebecca
Reference: handed parents guide for PFFD
Location: Australia
WebSite:
Web Info:
Contact: bekk@fl.net.au
Date: Thurs, Apr 18, 2002 at 05:59:39 (EDT)
Comments: My baby is now 6mths old. We only found out
that he has a femur (only about 1cm) this week which has placed him in the
PFFD club!! Before this we believed that his condition was very rare and
none of the medical experts had come across his particular condition. Would
love to chat with anyone.
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Visitor: Kathy
Reference: internet search
Location: UK
WebSite:
Web Info:
Contact: kmhouse@btinternet.com
Date: Mon, Apr 15, 2002 at 18:15:49 (EDT)
Comments: Finally got a name for my condition from my
new prosthetist and set about looking on the net for info. I am fifty and
feel amazed to realise there are others in the same/similar situation. I
have felt totally isolated for all this time! I look forward to learning
more and hearing from others. My family kept me isolated for years due to
their feelings of guilt but am happy to say I am now married and have two
healthy teenagers! Still have a deep longing to know why!!
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Visitor: Dawn Rause
Reference: have signed before
Location: Raleigh, NC
WebSite:
Web Info:
Contact: dawnrause@yahoo.com
Date: Thurs, Apr 04, 2002 at 09:19:26 (EST)
Comments: Just wanted to let you know that our 6 1/2
yr. old son, Jesse, is getting ready to have his next major lengthening surgery
on Apr 9th with Dr. Paley. Our last lengthening was two years ago and we
got 2 inches of length. This time we hope to get more as his discrepancy
is app. 6-7 inches. Jesse's attitude is great this time because he really
really wants a longer leg. Hopefully this will make all the difference. Please
keep us in your prayers. Thanks!
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Visitor: Linda
Reference: reply from info request
Location: Minneapolis, MN, USA
WebSite:
Web Info:
Contact: LindaExcel@aol.com
Date: Wed, Apr 03, 2002 at 14:50:14 (EST)
Comments: wish to receive e-mails but am having dificulty
joining Yahoo site. Please forward my address to your e-mail list, thanks.
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Visitor: Sally Borghese
Reference: corrected address
Location: Grand Rapids, Michigan
WebSite:
Web Info:
Contact: wwdovew@aol.com
Date: Tuesday, Apr 02, 2002 at 00:44:28 (EST)
Comments: I evidently entered my email address wrong.
This is correct.
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Visitor: Sally Borghese
Reference: searching for answers
Location: Grand Rapids, Michigan
WebSite:
Web Info:
Contact: wwdovew@ao.com
Date: Mon, Apr 01, 2002 at 23:28:04 (EST)
Comments: I have a 26 month old granddaughter with PFFD.
She also has a problem with her teeth, in that the teeth on the same side
as the PFFD are not as high in her mouth as the teeth on the other side.
Does anyone know of this situation with PFFD? As side note: she will have
her first lengthening probably next fall. We are waiting until she is able
to tell us exactly where she hurts and how it feels.
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Visitor: Sandy
Reference: desperately looking for answers
Location: Mississippi
WebSite:
Web Info:
Contact: ssenter@yahoo.com
Date: Sat, Mar 30, 2002 at 01:49:10 (EST)
Comments: my daughter,Mattison, will be 3 on april 14.
we found out she had PFFD when she was 13 months old. I am happy to have
found this web site. It is almost impossible to find any info on this condition.
From the posts that i have read ,is it always the right leg that has the
short femor? It's Mattison's right leg also.
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Visitor: Samantha
Reference: Website recommended
Location: Midlands, U.K
WebSite:
Web Info:
Contact: tulula31@yahoo.co.uk
Date: Wed, Mar 13, 2002 at 16:57:11 (EST)
Comments: I am in my early thirties and had a problem
with accepting my condition since I was a child. I have always felt 'different'
and unaccepted by society yet long to be average and normal. I walk very
badly and have had a lifetime of difficulties regarding prosthetic limbs
that either do not fit very well or have poor cosmesis. My current prosthetic
limb is over twelve years old and I have had four since then that have been
of no use to me.I am at a loss and wonder if anyone else has had similar
problems or how other people with PFFD obtain a prosthesis of an acceptable
standard? Any advice or suggestions would be gratefully recieved. I am also
very curious as to what caused this condition? Although I am in my thirties,
nothing has ever been explained to me and it was only last year that I was
told what my condition was caused. As silly as it sounds it made me cry as
I felt relived that I can eventually put a name to my condition after many
years of asking but never being told.
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Visitor: frances
Reference:
Location:
WebSite:
Web Info:
Contact: balammers@msn.com
Date: Thurs, Mar 07, 2002 at 12:24:22 (EST)
Comments: I AM AN OLDER PFFD WHO HAS HAD FEW DIFFICULTIES
LIVING A VERY NORMAL LIFE. I ALSO HAVE A MEDICAL BACKGROUND AND WAS A THERAPIST
FOR 45 YEARS. I WOULD BE GLAD TO ANSWER ANY QUESTIONS OR JUST COMMUNICATE
WITH ANYONE INTERESTED IN PFFD.
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Visitor: Sybil Ginn
Reference: Searching
Location:
WebSite:
Web Info:
Contact: ginnsurfer@statecom.net
Date: Sun, Mar 03, 2002 at 09:22:46 (EST)
Comments: My granddaughter is 7 days old and has a short
right femur. We don't know anything about what this means or what to expect.
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Visitor: Gini
Reference:
Location:
WebSite:
Web Info:
Contact: tfieldofdreams@aol.com
Date: Mon, Feb 11, 2002 at 11:42:46 (EST)
Comments: I have a daughter adopted 3 months ago from
China with PFFD. I am interested in talking to another parent with a child
this age.
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Visitor: Whonetha B. Edwards
Reference:
Location: Mansfield, Ohio
WebSite:
Web Info:
Contact:
Date: Tuesday, Feb 05, 2002 at 10:44:21 (EST)
Comments: I forgot to add from my first message that
my grandson has already had the prosthetic device and shoe with a lift. He
was fitted 1-1/2 years ago. It worked fine for a while; but now he's not
wearing it. Thlanks
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Visitor: Whonetha B. Edwards
Reference: search
Location: Mansfield, Ohio
WebSite:
Web Info:
Contact: wedwards@ci.mansfield.oh.us
Date: Tuesday, Feb 05, 2002 at 10:37:01 (EST)
Comments: My grandson has proximal femoral focal deficiency
and he is now 4. We were told when he was born that this is the age he should
be getting a lengthening operation; and I have just read from my search,
he should have started at age 3. He has been going to the Cleveland Clinic,
Cleveland, Ohio and Children's Hospital in Columbus, Ohio. We still don't
have any answers and we need a specialist to help us. What should we do?
Thanks. You can also mail information to 349 Fourth Avenue, Mansfield, Ohio
44905. We have insurance that will cover this.
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Visitor: PFFDvsg Webmaster
Reference:
Location:
WebSite:
Web Info:
Contact:
Date: Mon, Feb 04, 2002 at 15:49:39 (EST)
Comments: Hi all......The PFFDvsg has now moved to
www.nls.net/mp/pffdvsg. Any old links to www.ohio.net are no longer valid.
Thanks for stopping by........Mike
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Visitor: Marie Propes
Reference:
Location: Florida
WebSite:
Web Info:
Contact: propes4@bellsouth.net
Date: Sat, Feb 02, 2002 at 23:17:34 (EST)
Comments: I can't figure out how to join your mailing
list. For some reason I can't get Yahoo to verify my e-mail address. Help!
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Visitor: Marie Propes
Reference:
Location: Florida
WebSite:
Web Info:
Contact: mcpropes@sar.med.navy.mil or propes4@bellsouth.net
Date: Wed, Jan 30, 2002 at 13:36:17 (EST)
Comments: I have a 15 year old son born with PFFD. My
son had a Symes amputation at 3 1/2 years of age. He plays basketball and
enjoys a normal healthy life. It hasn't been easy though. I would love to
chat with other parents. I'm very happy to have found this website.
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Visitor: Angela Davyduke
Reference: searching
Location: Canada
WebSite:
Web Info:
Contact: angcory@cable-lynx.net
Date: Wed, Jan 23, 2002 at 19:00:53 (EST)
Comments: Hi,my name is Angela. I am 22 years old and
I was born with PFFD. I have had about 19 major surgeries on my legs. I was
also born with a twisted right hip, no ligaments in my right knee, a bow
in my right leg,...etc. I had an amazing doctor and an amazing family to
thank today for all their help and support. I have 2 legs (only one inch
difference verses about a foot)and I can do almost anything. I just want
to wish everyone who has to go through this procedure the very best. If you
wish to email me please do so, my email is angcory@cable-lynx.net
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Visitor: Chuck, Karla, Dylan & McKenna
Reference: Divine Intervention!!!
Location: Maple Grove, MN. - USA
WebSite:
Web Info:
Contact: ChuckBerg@msn.com
Date: Wed, Jan 16, 2002 at 01:41:03 (EST)
Comments: Greetings all, and Happy New Year!!! We just
wanted to drop you all a note letting you know about McKenna's progress.
She finished lengthening on Apr 21, 2001, and since then she has had the
Illiz. removed, and has had physical theropy about 2 to 3 days a week to
regain the range of motion for her right knee. As of today, 1-15-02, she
has just about full range of motion, and still only wears about a 1/2 lift
inside her shoe. She runs, climbs, swims and does about everything she
wants...Anyways we plan to return to Baltimore soon to visit Dr. Paley and
his team to get a checkup. We have come so far that it is hard to believe
that it was a year ago on 01-10-01 that we started this journey, and we sure
couldn't have done it without the support from all our family and
freinds...Especially the new freinds we made in Baltimore!!!! And Dr. Paley
and his staff have been just wonderful to work with!!!!Our thoughts and prayers
go out to all of you, and if there is anything we can do just email us back
at ChuckBerg@msn.com, or call us collect at (763)494-8823 anytime day or
night, as we want to repay all of you who have shared so much to help us
get through this. Also, if you are just trying to get information for a loved
one, or just had a child of your own and want more info. just give us a call
and we will share everything we know, and try to help in any way we can....Good
luck to you all, and God Bless!!!! Chuck, Karla, Dylan & McKenna
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Visitor: Cindy Gustavson
Reference:
Location: North Carolina, Usa
WebSite:
Web Info:
Contact: cindybgustavson@mindspring.com
Date: Tuesday, Jan 15, 2002 at 20:39:02 (EST)
Comments: I am still looking for information on pffd.
We have had no surgery at this point. Justin is now 10. Having trouble at
school with keeping up with class work. Also any information about 504's?
Thanks so much. God bless.
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Visitor: Judith Hamer
Reference: searched for proximal focal femoral deficiency
Location: Exeter England
WebSite:
Web Info:
Contact: Hamers@14blenheim.fsnet.co.uk
Date: Sun, Jan 13, 2002 at 07:32:01 (EST)
Comments: I am 11 years old with PFFD and am searching
for answers to my dislocated hip which resulted after my 3rd lengthening
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Visitor: Cindy Gustavson
Reference: looking for information on line.
Location: usa
WebSite:
Web Info:
Contact: cindybgustavson@mindspring.com
Date: Tuesday, Jan 08, 2002 at 20:45:41 (EST)
Comments: I have a 10 year old son with pffd. Does any
one have information or experience that it may affect them in learning?
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