Thursday we had our bimonthly appointment with Dr. Packer (She handles Dr. Paley's post op patients).
Our day started out with physical therapy before our appointment. That session didn't end well, as Victoria wasn't cooperating and didn't earn her 'treasure chest'. She was also upset because she had to get measured to see how many degrees her leg can bend.
She hates getting measured, but it needs to be done as the Doctors need to know if she is losing, gaining or maintaining flexion and to what degree. Victoria is losing some flexion.
After that we headed to X-ray. Victoria resisted most of the time. Lots of screaming and crying. We had to hold her down for a couple of the views that were needed.
After that we waited for quite some time to be called back. Once again Victoria started to freak out. She knew we were about to see a doctor. She has a lot of fear and anxiety over being in the actual room. She kept trying to escape, using the wheel chair to ram the door repeatedly. Then she started trying to get out of her wheel chair which is dangerous because she still isn't steady without her walker. While trying to keep her safe she was pinching me, trying to bite me, and screaming. I remained calm and tried to reassure her that no one was going to hurt her.
Finally Dr. Packer came in. She asked me if *I* was okay and asked if I would consider stopping lengthening early because she wasn't sure how much more of Victoria's behavior I could handle. The tears started to fall. I told her that we didn't come this far to quit now. She still insisted I at least think about it. She measured Victoria's new bone, which came out to be about 4.3 cm. She checked out Victoria's pin sites. The same pin site that showed signs of infection before was showing signs of infection again, PLUS had some hyper granulation tissue protruding out of one site.
She ordered another round of antibiotics and a medication called Elavil to help with Victoria's behavior issues.
Then PA Luke came in and added another piece to Victoria's fixator so we can continue her daily turns. There was a lot more screaming and crying involved even though it was a painless and quick process.
We have decided that we are NOT quitting the lengthening phase of this process. We have come too far to quit now. 5.5 cm is a very realistic goal and we only have two more weeks until we achieve our goal and stop turning/lengthening. I've decided to cut back on Victoria's pain meds to see if that could be contributing to her behavior issues. I know she is going through A LOT everyday and it's taking a toll on her.
Our next appointment is on the 30th of November with Dr Paley. By then Victoria will have met our goal of 5.5 cm plus some. At that time we will discuss starting the consolidation phase. This is when the new bone consolidates into hard bone.
Victoria continues physical therapy every day at the clinic and at home, daily turns three times a day, pin site care every other day and now fighting off a possible infection.
This little girl shows daily strength and perseverance. She's so strong willed, which is a blessing and a curse. I look forward to the day when this is over so I can have the Victoria I know back. I'm sure she feels the same. This is HARD, but we continue to take it one day at a time.
Thanks for following our journey! We appreciate all the prayers and support!
Only 5 weeks and 2 days left until our departure to Florida for Victoria's lengthening surgery!
Then just a week after we arrive she will have the surgery!
Please consider making a donation as we have many expenses to cover over the next 6 months. Cost of living, airfare, rent, Physical therapy co pays, insurance deductibles, food, gas and more. Thank you for following our journey.
Victoria at our most recent checkup at the Paley institute7-13-15
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
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 3.5 years 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 Victoria's Limb lengthening surgery with Dr. Dor Paley, Pioneer in Limb Lengthening in September 2015. As well as funds to help with medical expenses and travel/accommodations while we are in Florida for 4-5 months. 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. 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 for her surgery with 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. From what we estimate the costs associated with such a long stay, the condo rental, airfare, transportation, medicals supplies, medical copays and the cost of living, we are expecting a cost of about $15,000 for the 4-5 month stay.
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!