Good news! Victoria's x-rays came back and we heard from Dr. Paley. REMOVE CAST. BEGIN WEIGHT BEARING!
We still are desperately raising $ to get Victoria back to Florida for her post op visit with Dr. Paley. From Washington State to WPB Florida. We need to pay for travel expenses. Thank you for your support! It is a blessing to our family!
Sad news stories - and scams - roll through our media at a nearly unbelievable clip these days. We were astonished to find one so heartbreaking as Victoria's Victories Congenital Short Femur/PFFD. You may have recently seen reams of stories written about a 3 y.o. girl who was turned away from a KFC because her injuries were said to be frightening and off-putting to other customers. Well that was a fraud. It was a lie. There was fundraising to the tune of tens of thousands of dollars on this story. All the while, this little one, this Victoria, was battling through some pretty gruesome surgeries to correct her Congenital Short Femur/PFFD. Read a statement from Victoria's mom:
From Victoria's mother:
I am SO upset. Have you heard about this story? They named their gofundme page and FB page Victoria's Victories. Now people are thinking MY Victoria's Victories with Congenital Short Femur/PFFD page is a hoax! What do I do? Change the name of the page I've had up for nearly a year. I have shirts and stickers that say Victoria's Victories on them! I hope this story is not a hoax. It sure has brought a lot of attention to Victoria's page, but not exactly the kind of attention I was hoping for. Now who wants to donate to our cause when these people allegedly are lying!? They raise over $135,000 and we can't even raise $3,000. Wow....people will do just about anything these days.
Can you imagine what it would be like to be blindsided by angry social media folks who claim your page is a hoax? That your child is undeserving? Fearless doesn't usually post news like this, but we hope that if you read this and are so moved, you will donate $10 to this little girl and her family. Here is her fundraising page. Help spread the awareness if you can. Medical bills and travel/stay for the family are covered. They've raised just under $500 of the $3K they need. It's a modest amount for which to ask. Please share this story. We just might be able to reverse some terrible and undeserved press.
Victoria's Victories Medical Expense Scams Undeserved Negative Press Congenital Short Femur/PFFD
This coming Tuesday Victoria will be 5 weeks post op! I am seriously looking forward to the X-rays at the 6 week mark. We will be sending them via email to Dr. Paley, and will be waiting anxiously to hear back from him, to whether or not Victoria's spica cast can come off.
We had PT here locally this week. It didn't go well, as in Victoria doesn't like to cooperate with the physical therapists.(One physical therapist said ''I'll be right back'' and she never returned. She sent someone else in to finish up.:/) She doesn't like to cooperate with her stretches with me either. The physical therapist assured us that her range of motion is still where it was when we left FL and that she is doing well. We just have to trick her into doing her stretches without her realizing that's what she's actually doing.
She is strong willed, as we have heard many MANY times since our journey started. When this cast comes off, I have no doubt that she will thrive and be walking again soon. Physical therapy here in Lynden doesn't feel the need to see her back until her cast is off and she can work on learning to walk again.
Pete is working overtime today and tomorrow. That is what most of our summer will look like. LOTS of overtime, LOADS of overtime. Which leaves me at home alone with the kiddos. But we have to return to WPB FL in September for her post op visit with Dr. Paley, so we need to save up funds for the upcoming trip back to FL. As well as work on paying for whatever the insurance doesn't cover of Victoria's surgical costs, which equaled a grand total of $111,620.54. WOWZERS!!!
It get's kinda lonely around here lately. I look forward to some normalcy. When I can just jump in the car with the kids on my own and go to the park. When the weather get warmer and we can set up the big pool. My garden is thriving, but I'm really not into it this year. I think we need more playdates at our house, to break things up a bit.
Our NEW GOAL is to raise $3,000 to help get us back to WPB FLORIDA to see Dr. Paley for Victoria's post op Visit. Anything helps! Thank you!
Doing the 'books' and adding in the 'offline donations'! Between gofundme.com, youcaring.com and the fundraisers we have done. We have raised a whopping $2,498!!!! THANK YOU TO ALL WHO HAVE HELPED US get to the 1/2 way mark to our GOAL AMOUNT!
December 12th you can text 2 donate. By texting WISH to 80077! You can Donate $5 each time you text up to 5 times! It's an easy way to help support us while we are in Florida awaiting our Dec 13th apt with Dr. Paley!
HUGE MILESTONE TODAY! JUST 30 DAYS!!! 30 days until we head to SeaTac to board our flight to FLORIDA! A quick (48 hr trip) to Florida to consult with Dr. Paley!
As of today, at this exact moment, EXACTLY $2,000 dollars has been raised for Victoria's Victories with Congenital Short femur! Monies will be used for our first consultation with Dr. Paley! $1,000 for the consultation and a current x-ray will be paid 'out of pocket', when we check in December 13 th at the Paley institute of advanced limb lengthening. We have our plane tickets in order, but still need to rent a car while we are there, pay for parking and a shuttle to and from the airport, as well as other traveling costs.
If Victoria's Victories with Congenital short femur FUNDRAISER were to raise $100 a day for the next 30 days, That would mean meeting our 1 st goal of $5,000! Any 'leftover' money raised will be saved in a Medical savings account for V for future trips to Florida.
ALSO, Victoria's limb length discrepancy gets larger every day that she grows. Her right leg is growing slower than her left leg. Without limb lengthening her right leg will never 'catch' up to her left leg in length. She will have an estimated 6 inch discrepancy between her right and left leg.
That makes another expense. We are in need of new QUALITY shoes for Victoria as well as a larger centimeter shoe lift. This urgent need is not covered by insurance yet. Luckily we know a shoe repair man at our local Bellis Fair mall that has been doing Victoria's lifts at a very affordable rate. Between the QUALITY expensive shoes we have to buy and the lift, her shoes end up costing about $60-$75 a pair.
We appreciate the ongoing prayers and donations! Every bit helps, no matter what 'size' the donation is!
Thank you so much! Feel free to share this status with your FB friend and family!
We also need prayers as we make the tough decision to switch medical insurance companies. Our current insurance does not cover 'out of state' care. There is ONE insurance company that is offered through Victoria's fathers employer, that would help cover surgical expences 'OUT OF STATE'. That insurance is one that Dr. P's office takes for surgical treatment of PFFD. We are still doing our research, but these upcoming surgeries will not be covered in full by either insurance company. Co-pays, travel expenses/accommodations, and preventative care items such as shoes and shoe lifts are ALL out of pocket expenses.
JUST 30 day's until our consultation with Dr. Dor Paley!
If Victoria's Victories with Congenital Short Femur/PFFD can raise $100 per day, each day, until Dec 11 th, we will have reached our FIRST goal of raising $5,000! Monies much needed.
The two places that you can donate to online is if you feel led to do so is...
Victoria's Victories Bake/Craft SALE/Holiday Hoopla at Hopewell Grange donated $590.00
This entry is from Victoria's mother, Kelli. We live in a giving community called Whatcom county. I belong to a moms group called the BMSN aka 'Bellingham Mamas Support Network'. I put out the call for baked good. And the baked goods came in on Thursday evening, as I had asked of the 'army of Mamas'. Those loving hands made yummy baked goods that raised money for our daughter. unds that will help us get to Florida for future surgeries. I can't thank those Mamas enough. I love you all. Thank-you for loving my daughter enough to give your time and hard work to her cause. My husband Pete Cardona made handmade growth charts, my mother made handmade key-fobs/chains, and I myself 'tried' to organize it all the best I could. The whole bake sale together along with the craft/handmade items, and donations of $ equaled a grand total of $590! 2 days of hard work and SUCCESS!!! THANK YOU ALL! You are a blessing in our lives. The continued support and prayers keep us going! God Bless you ALL!
Sometimes I struggle with 'labeling' Victoria as 'special needs'. But in all reality she does have a 'disability'. It's not a noticeable disability, as some disabilities are more noticeable than others. Today she was just a little girl running around at 'Mama's Farm' pumpkin patch/garden/farm.
Today she fed some chickens some swiss chard, while singing 'Ole' McDonALL ha a farm E-I-E-I-O! E-I-E-I-O! chick-chick, ena chick-chick here ena a chick-chick -air, E-I-E-I-O!'
Today she found comfort in her Daddy's loving arms, when she discovered that she didn't like going on a pony ride as much as her big brother Alex DID!
Today she liked that Alex's pony, was named 'Chico'! Oh, how fun it is to say 'Chico' Chico CHICO!!!
Today she went on her very first hay ride, around some of the most beautiful & GREEN farm land I've ever seen.
Today she picked up HER 'punkin' like she could move mountains, like God can.
Today she discovered, she giggled, she ran and kept up with the bigger kids.
Today she tasted her first caramel apple...
TODAY she took in the sweet crisp smell of FALL air.
Today she felt the warmth of the SUN on her face as she watched a lil calf, a pig, a couple goats and a whole lot of chickens.
Today I enjoyed my little family and the quality time we spent together. I'm sure that no one noticed her 'special leg'. I am grateful that today I was living in the moment and my mind was focused on making memories with my children. Today 10/13/13, was a day to let go of 'the hard things' and rejoice in all that is good. And all that is GOD! ♥
Kelli's Thirty-One Facebook Party for Victoria's Fundraiser! SAVE THE DATE! INVITE only! If you are not able to make it to my Thirty-ONE party on FRIDAY October 25 th you can be a part of an ONLINE FB party. Details on how this works and how to sign in this coming Saturday at 7 p.m. will be posted on the FB party invite page! Please message me if you are interested and I will make sure you are on the invite list! This party is perfect for my PFFD family and friends that are out of state and can't make it to my home party on October 25 th. As well as any family and friends who are out of the area but would like to buy some AMAZING totes/organizational products all while supporting VICTORIA on her journey with PFFD/limb lengthening! A portion of the sales will be donated to Victoria's Victories with Congenital Short Femur/PFFD, by my awesome consultant Jessi! I am SO excited about the Thirty-one Gives Care Ribbon line! Customizable to the cause YOU would like to show support for. In my case it will be the GREEN ribbon that represents growth and development (aka LIMB LENGTHENING!) THANK YOU and GOD BLESS you all! http://www.thirtyonegifts.com/care-ribbons/
We had our appointment this week on Monday the 23rd at Children's Hospital in Seattle for V's yearly check. Here's the update....
by Kelli Aldrich and Pedro Cardona (parent's)
So, I'm extremely emotionally and physically DRAINED.
Dr. Mosca surprised me with his professional response to us seeking a second opinion. He encouraged it even. As well as calling Dr. P's practices 'unconventional' and 'over the top' Her limb discrepancy has almost doubled in one year. Last year it was about 3 cm, this year it's a 6 cm difference. I forgot to ask for a current printout of the X-Ray. He said that her leg was substantially bowed when he first saw her at 3 weeks old. Which we knew. With each X-Ray we have seen the bowed leg start to straitened out. Today it was very noticeable in comparison from the first imaging report. He said he's never seen that happen, and it was quite remarkable. As far as the MRI he said there was no need for it. I asked him three or 4 times about the smaller femoral head, lack of ossification and cartilage in the right leg. He kept avoiding answering what the MRI showed. Still no answer as to when he'd be willing to do her hip osteotomy or start the lengthening process. Not even a round about timeline.
If we do nothing she will continue to walk with her leg turned out to the right. Her estimated limb length discrepancy is an estimated FIVE inches at full growth. Her case is not as severe as others I know. Each case is different. We are still getting a second opinion from Dr. Paley this coming December.
I left the appointment feeling more confused than before and felt like he dumbed it down a few notches...to me everything is the same...no solid answer. No timeline. He said it's neither black nor white. All a big grey fog of more waiting. I guess December 13 th will tell. In the meantime I need to find peace in not knowing what tomorrow (her future) holds.
One thing I know for sure is Dr. Paley changes lives. He has a timeline. I haven't yet met him, but how can you not admire a doctor who saves limbs from amputation and promises parents that their babies will walk one day? With two feet flat on the ground...
May God carry me through the next few months of waiting. And may peace fill my heart. There's five inches... And she is missing her ACL.
- See more at: http://www.youcaring.com/medical-fundraiser/victoria-s-victories-with-congenital-short-femur-aka-pffd/82736#sthash.lgl1ZQbg.dpuf
MRI findings posted in update below....ALSO from reading the x-ray report from LAST year her fibula IS shorter as well. I am anxious to see what her limb length discrepancy is on Monday with a current x-ray. Having a hard day. Feeling like I'm in this alone with Victoria. As I feel really unsupported emotionally by people who are supposed to care as much as I do. Praying for strength...as this is ALL in my hands. The footwork to raise the funds, switch insurance companies to get her the care she needs, making the calls, doing the paperwork, scheduling necessary appointments...BUT I will not give up. My daughters leg can be fixed...PLEASE keep us in your prayers. Thank you...
Patient Name: CARDONA,VICTORIA B
MR PELVIS W/O CONTRAST
***** FINAL REPORT *****
Clinical History: 20-month-old female with right proximal femoral deficiency. Assessment for preoperative planning.
Examination: Unenhanced MSK protocol pelvis and right hip MRI; Date: 13 September 2013
Comparison: Pelvic radiograph September 24, 2012.
Technique: A 3 Tesla system was used to are the following image sequences of the pelvis: T1 coronal and axial, STIR axial, three plane DESS.
Asymmetric shortening of the right femur with focal midshaft varus deformity is again seen. There is right coxa vara. The femoral heads are symmetric, however there is asymmetry of the greater and lesser trochanters with the affected side (right) demonstrating decreased ossification of the greater trochanter and decreased cartilage of the lesser trochanter. The bilateral proximal femoral physes are symmetric.
Bilateral femoral acetabular cartilage is symmetric.
Marrow signal is unremarkable.
Imaged soft tissues of the lower extremities and pelvis are unremarkable as seen. Contents of the spinal canal also unremarkable as seen.
Right proximal femoral deficiency with midshaft varus and coxa vara, however the bilateral femoral heads are symmetric as are the proximal femoral physes and femoral acetabular cartilage. There is decreased ossification within the right greater trochanter and decreased right lesser trochanteric cartilage.
Resident: Bakken, Hans Erik, MD
I have personally reviewed this study
and agree with the report above.
GEI/HEB Radiologist: Ishak, Gisele E, MD
Seattle Children's Hospital Patient Name: CARDONA,VICTORIA B
Department of Radiology Sex: F
Our daughter Victoria was born December 2011 with Congenital Short Femur/PFFD. A rare congenital/birth defect. We were not aware prior to her birth, it was shocking to say the least. I had a complicated pregnancy with (ICP) aka Cholestasis, she was a 'lateterm premie' weighing in at 5lbs 11 oz. We were in love from the moment she was born. Although we weren't expecting a baby with a 'little leg', she's been a blessing to our family. For the past 20 months we have been searching for answers, researching, and reaching out for guidance to navigate our way through this journey we are now on with our sweet baby girl.
What is CFD/PFFD? Congenital Femoral Deficiency (also known as PFFD: Proximal Femoral Focal Deficiency) "“ leads to a congenitally short femur with different degrees of a lack of formation of the hip and knee joints. In the mildest cases the hip and knee are properly formed and only the femur is short. In more severe cases the hip is severely deformed, the knee is unstable or has a flexion contracture and the femur is short. In the most severe cases there is either no connection between the femoral head and the femoral shaft or also stiff (limited in its motion). The treatment for cases with a well-formed femur is lengthening. For the more severe deformity, the superhip and superknee procedures are used to reconstruct the there is no hip joint at all and the knee is not only contracted but hip and knee before lengthening. If there is a true pseudarthrosis (false joint) the superhip 2 procedure is used to build a femoral neck and connect the femoral shaft with the femoral head. Finally in the most severe cases Symes amputation and Rotationplasty We have choosen Dr. Paley for a second opinion. For many reasons, that are stated here at http://paleyinstitute.org/?q=physician-education. He has a 99% sucess rate. Limb lengthening is a long and painful process with many risks. As Victoria's mother, I don't want to gamble on losing her right leg.
20 months old
LEARNING TO WALK!!! YAY!
FIRST X RAY AT 27 days old....
She loves her ice cream! <3
Why the FUNDRAISER? We need to raise funds for a consultation with Dr. Dor Paley, Pioneer in Limb Lengthening. As well as funds to help with medical expenses and travel/accommodations while we are in Florida. The consult is not covered by our insurance. From the research we have done, we feel that it is important to be proactive, and correct her condition while she's young and before other parts of her body are jeopardized by her gait with a short, bowed and twisted femur. Soon after our consult, we are expecting to move forward with surgeries. The first one being a osteotomy of the hip/ "SUPER HIP" surgery. Then we are hoping to start the lengthening process a year after that. We live on the West Coast (Pacific North West) and Dr. Paley is in WPB Florida. If there were a Dr. closer to us, and had the same experience as Dr. P. We would love to seek care closer. There just isn't a orthopedic surgeon in our area, with the kind of expertice as Dr. P. His patients come from all around the country/world to benifit from his skill and experience.
Please help us get our daughter Victoria to Florida to see Dr. Paley. He is the BEST of THE best. http://paleyinstitute.org/ Every little bit helps. Any funds that remain after our consultation with Dr. Paley will be put into a fund for the future medical and travel expenses. Our goal amount is just an estimate. But know in the long run expenses will surpass what we are asking for at the moment. As the first hip surgery will require us to stay in Florida for two weeks. And the lengthening will require a 3-4 month stay in Florida.
OUR THANKS TO YOU THANK-YOU, to family, friends, and the unknown that choose to donate to our cause. Thank you for your generosity, love and prayers. From the bottom of our hearts, THANK YOU!
Victoria had a MRI with general anesthia last Friday, on the 13 th of September. We have not yet recieved the transcription of the MRI, but do have a copy of it. I am not trained in reading them, but I used to work as a nurse on the surgical floor. As we have already known, V's femur is short,bowed and twisted. The MRI showed muscels and ligaments that are not where they're supposed to be. We will be going to V's checkup next Monday at Children's hospital, and will be told then about what the MRI showed. We will also have a current x-ray taken at that time, as well as an answer to what her limb length discrepancy is currently (in cm). At that time we will also be telling the orthopedic surgeon that has V's case currently, that we are seeking a second opinion. I'm not expecting that to go well. We believe that the consultation with Paley wiill give us the answers we have been looking for. Our appointment with Paley is scheduled for the second week in December 2013. PLEASE HELP US GET HER THERE. THANK YOU!
These photos are from our recent visit to Children's for the MRI under GA....on 9-13-13 Nurse getting her BP, it was running high.
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