Beth Reinert's blog

I wanted to recommend the movie "How to Train Your Dragon". Most PFFD patients at some point in their lives will need a prosthetic device. This movie shows how those wearing a prosthesis can be strong and valuable to society. It's rated PG for sequences of intense action and some scary images, and brief mild language. I really LOVE this movie.

Beth

Some of you might be interested in this information when choosing medical insurance. It is stuff that I have gathered from personal experience.

1. Doctor & Hospital: Decide who you think you want your child’s surgeon/doctor to be. Make sure that the insurance you choose lists that doctor and the hospital he/she works at as "in network".

OK. I’m really pleased that there are so many kind and inquisitive people out there. But why, when I’m rushing through the grocery store with a full cart and 2 tired little children, would I want to have a long discussion about why my daughter’s leg is short or has a fixator on it or has a cast on it? Today (like many times before), when a passing lady asked what happened to my daughter’s leg, I simply said “She’ll be fine.” (when clearly her leg had been through some trauma since she has a cast) and continued on to the checkout line. Sorry. Just had to vent a bit. I feel better.

Olivia had her first lengthening in May 2008. Her surgeon is Dr. Davidson at Children’s Hospital in Philadelphia (CHOP). After gaining 1.5 inches of length, Olivia developed a knee contracture. Lengthening was stopped at that time. She now wears a 3 inch shoe lift. Even though I would have loved for Olivia to gain 3 inches, it all worked out fine. Olivia was able to get her fixator removed just before she started her first day of school. It made her transition to full-day, 5 day/week preschool all that much easier. She thrives at school and all the kids and teachers love her.

My daughter, Olivia (she turns 4 in June), has her first lengthening surgery scheduled for May 9th. Her surgery will be performed by Dr. Davidson at Children’s Hospital of Philadelphia (CHOP). A year ago, during a check-up with Dr. Davidson, we were told that a pin left in her hip/upper femur (from her super hip surgery) needed to be removed prior to lengthening.

Olivia had her super hip/knee/ankle surgery in early August. Dr. Paley performed her surgery. Olivia was 26 months old at the time of surgery. She was in the operating room for about 11 hours. Since she was under anesthesia for so long, they put her in the Pediatric ICU for the first night of post surgery. Dr. Paley said that her surgery went well. He was able to do everything he needed and wanted to do in order to prepare her for lengthening.

I have attached some pictures of Olivia and her prosthesis (the same one she got in October 2005). These pictures were taken on Jan. 5, 2006 when Olivia was about 19 months old. The first 2 pictures show her prosthesis. The 3rd picture shows her without her prosthesis. The other pictures show her wearing her prosthesis.

Olivia finally got her prosthesis on Thursday, October 27th. (She was 16½ months old.) She didn’t like it. It didn’t hurt her … I made sure of that! But she just didn’t like it on her. Before she got her prosthesis, she was a pro at crawling and pulling herself up to standing. Now she would have to relearn those things all over again.

Olivia had her appointment with Dr. Paley last week. This was the first time for us to personally meet him. His schedule was really tight and he was only able to meet with us for a short time, but overall we were very impressed with him.

Olivia was born on June 11, 2004. We learned at my routine ultrasound while I was pregnant with Olivia that she would be born with a short left leg. Her left leg is about half the length of her right. Her left foot is at about the same level as her right knee. I don’t know the classification yet, but she has a short femur and fibular hemimelia.

We met with 3 pediatric orthopedic surgeons before choosing Dr. Herzenberg and Dr. Paley in Baltimore.