Beth Reinert's blog

"How to Train Your Dragon" movie

Beth Reinert — Mon, 16 May 2011 13:23:26 +0000

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

Medical Insurance

Beth Reinert — Mon, 22 Mar 2010 23:13:34 +0000

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".

2. Durable Medical Equipment (DME): Check the DME coverage for the insurance. (DME is stuff like prosthetics, orthotics, walkers and wheelchairs.) Some pay a percentage of the bill. Some require you to pay a copay. My daughter's first prosthesis cost about $4,000.00. Insurance covered 90% of the bill, but that still left us with $400.00 to pay our self. We now have insurance that has us to pay $100.00 maximum per year per family member for DMEs.

3. Physical Therapy (PT): Check the physical therapy coverage. Some limit the number of PT appointments. Some charge a fee for each PT appointment. Ours is $15.00 per PT visit with a maximum of 60 visits per year. After that we pay 100%. I called a local physical therapy place and they charge over $300.00/hour if you do not have insurance coverage. I don’t believe that all places are this expensive, but you will want to do research before you commit to a place. Quality of care received is just as important as how much they charge. My brother went to a physical therapist to help with a problem he was having and they ended up doing more harm than good. Physical therapy is key to proper recovery.

4. Shriner's Hospital or other free hospital: See if there is a Shriner's Hospital relatively close to you. Shriner's is a FREE hospital for children with orthopedic problems. They do surgery, therapy, and make prosthetics for children with PFFD, among other reasons. For financial reasons, my daughter gets her PT and prosthetics done at Shriner’s in Philadelphia. It takes us 1 to 1.5 hours each way to get there, but it's well worth it. The staff is great and we don't have to pay anything. We still have her surgeries done at a non-Shriner's Hospital (Children's Hospital in Philadelphia) just because our insurance covers it and we absolutely love it there. But if our insurance would ever drop coverage at CHOP, we would switch completely over to Shriner’s. You have to apply to get your child treated at Shriner’s, but it's not that bad. I think that there are other free hospitals across the nation that provide similar services as Shriner’s, but I don’t have any specific knowledge of those hospitals.

I hope this helps. If I have stated something incorrect, please correct me. If you feel that you can add to the list, please do.

Beth

inquisitive people

Beth Reinert — Wed, 04 Nov 2009 00:09:31 +0000

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.

Beth

Olivia update

Beth Reinert — Wed, 21 Jan 2009 17:35:37 +0000

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. She’s everyone’s best friend.

Regaining the straightness of her knee after the knee contracture is a work in progress. She uses a dynasplint at night which corrected much of the contracture. And she uses a belly gutter brace periodically during the day. Now she only has about 10 degrees to go.

Olivia is scheduled for her next surgery on April 23, 2009. The plan is to lengthen her lower left leg, correct a bending of the bone in her lower left leg, and if the knee contracture is not resolved, that will be addressed as well.

Beth
bethreinert@yahoo.com

upcoming lengthening surgery

Beth Reinert — Wed, 02 Apr 2008 01:00:45 +0000

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. He said it could be done during the same surgery when her external fixator is installed, but if the hole left behind after the pin was removed was too big and made her femur too weak, then her lengthening would be delayed by about a year. We opted to have it removed during a separate out-patient surgery ahead of time. Dr. Davidson said we made the right choice. The hole that remained in her femur was about 0.25 inches in diameter. She came home with only a bandage the same day of surgery. She wasn’t supposed to do any weight bearing on that leg for about 6 weeks. She wasn’t allowed to wear her prosthesis and she had to use a walker. Trying to explain to a 3 year old that she can’t walk on her leg for several weeks was not fun. But since it was for her betterment we stuck it out. Her leg is now completely healed and ready for lengthening.

At her last check-up, Dr. Davidson noticed that the large bone (she’s missing the small bone) in her calf isn’t growing correctly. It’s starting to bend out at the top near her knee. In six months time, it bent about 15 degrees. It’s not supposed to do this. He will fix it during upcoming lengthenings, but he said it might be a problem until her leg stops growing at maturity.

We have a long road ahead of us, but through prayer and support from family and friends we’ll make it through.

Beth

super hip/knee/ankle surgery

Beth Reinert — Mon, 13 Nov 2006 15:24:21 +0000

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.

Before surgery we were told to expect her to be in an external fixator for 6 weeks and then some type of cast for an additional 6 weeks. We were also told that there was a possibility that she would be in a spica cast after surgery instead of the fixator. So we were prepared for either option. It turned out that she was in a spica cast after surgery. (We chose a pink cast for her.) As I said, we were prepared for the cast, just not what it was going to look like. I thought it would be down her surgery leg (left leg) and around her waist. Well, it was and more. It went all the way down her left leg (only her toes exposed), around her waist, and down her right leg to above the knee. An area was cut out for diapering. I got really upset after I saw it because with this design she couldn’t crawl or sit upright.

The only big problem we had after her surgery was that Olivia got severe muscle spasms. Her right leg would spasm so hard that her whole body shook. The spasms happened so often that she couldn’t sleep. 24 hours and 3 different medications later, the doctors got the spasms under control.

Olivia’s surgery was on a Wednesday. She was discharged on the following Monday and we went back home to NJ. She wasn’t able to fit in her carseat, so we had to use a special harness in the car. It strapped her in the backseat of the car while she was lying down.

Thankfully, she was able to fit in her highchair and stroller. We just had to recline both some so she wouldn’t slide out. I couldn’t find a beanbag for her to sit in. Instead, I went to Toys R Us and bought her a little foam chair. (Hers has Elmo on it.) Since it’s foam, it was able to recline enough for her and the arms were able to adjust for the width of her cast. I tried to get her a walker, like you’d get for an infant just learning to walk, but the width of her cast was too big to fit in any I could find. And the ride-on toys wouldn’t fit her either. So she’d have to wait to move around on her own.

Olivia had to wear her cast for 6 weeks. It was really hard on all of us. Olivia was only in pain for about a week or 2 after surgery. But before surgery she was an active 2 year old, used to walking around on her own. Her cast didn’t allow her to move much at all. At the beginning, she could roll over if she wanted, but mostly she just lay on the couch and demanded attention. She (and I) cried A LOT. I had to take it minute by minute. Moods would change that fast. My family tried to visit us about twice a week, which helped a lot. We had to constantly keep her distracted with new things. I tried to give her something new each day to play with. Nothing big. Stuff like playdough, a new stuffed animal, or a small toy. About 4 weeks after surgery, Olivia started to accept her situation. She started to crawl around the floor using only her arms. She started to pull herself up to standing. And she even started to walk behind a push toy or by holding on to our hands. She started acting like herself again by laughing and being silly.

A word on diapering. Olivia’s spica cast allowed only limited access to the diapering area. The hospital suggested the following: place a Newborn/Size 1 diaper over the diaper area, line that diaper and the diaper opening of the cast with adult incontinence pads (Poise pads), and then put a Size 5 diaper on the outside of the cast to hold everything in. For us, this failed horribly. At least once a day, she would have a major leak that would saturate the lining of the cast. You have to keep the cast dry. (I think to prevent rash or infection.) So every time it got wet, I had to use a hair dryer (COOL setting!!) to dry it. This often took over an hour. (She cried. I cried.) Size 1 diapers are just not designed to hold the amount of urine that a 2-year-old expels. So after several weeks of this method, I decided to try something else. I found that I could tuck a Size 4 diaper (what she wore before surgery) up under her cast (front and back). I was extremely careful not to irritate any surgery area. Then I put a Size 5 diaper on top like before. This method wasn’t perfect, but it greatly cut down on the number of leaks. In the beginning, I thought BM diapers were going to be the biggest problem. They weren’t a problem for us at all.

Since Olivia wasn’t really moving around a lot with her cast on her, she ate less. And since the only way to move around was to pull herself on the floor with her arms, her arms and belly became really toned. So after she had her cast removed, she dropped from a Size 4 diaper before surgery, to a Size 3 diaper after cast removal.

6 weeks after surgery we went back to Baltimore to have her cast removed. During her initial surgery, Dr. Paley put 2 pins in her knee and 1 pin in her ankle to keep them from moving while she was in her cast. So she needed to go back under general anesthesia to get the pins removed and cast off. Later that same day we went home. We were hoping never to see her cast again, but she need to wear it while she slept at night for 2 more weeks. Dr. Paley said this was because she wasn’t used to not wearing yet. It only took Olivia a couple of days to recover from the anesthesia. Her leg was really sore and swollen from surgery. It took over a week for the swelling to go down.

A week after cast removal, she started physical therapy at Shriner’s in Philadelphia. She still goes twice a week. On her first day of therapy, Meredith (therapist) gave her a walker. Within in 5 minutes, she was hopping around the room. She had developed such strong arm muscles from pulling herself around the floor that using the walker was easy for her. (Children are truly amazing!)

On Oct. 31st (6 weeks after cast removal), Olivia got her new prosthesis. She couldn’t wear her old prosthesis because the surgery had changed the shape of her leg too much. Her new one has a prosthetic foot with a “pole” up to a plastic “boot” which supports her natural foot. It only goes up to below her knee. She’s had it for about 2 weeks now and she’s doing great.

We saw Dr. Paley last week for a follow-up appointment. He said everything looks good. We just need to continue physical therapy to work on her range of motion mostly with straightening her knee and flexing her ankle. We go back in 3 months for another follow-up. She will have her first lengthening around 3½ to 4 years of age.

It was a really tough road for us, but we made it through with the support and prayers of family and friends.

Beth
bethreinert@yahoo.com

Olivia’s prosthesis [pictures]

Beth Reinert — Thu, 12 Jan 2006 17:31:16 +0000

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.

She will use this same prosthesis until late May when she is scheduled for Super Hip/Super Knee/Ankle surgery (at age 2). After her surgery, she will get a new device because the shape of her leg will have changed. The prosthesis that she has now does not have a joint in it. This device was designed to help straighten out her knee and ankle and a prosthetic joint would hinder that process, I'm told. I'm not sure if I've noticed her knee straightening any, but I definately see a positive change in her ankle.

We have had no problems with her prosthesis. The only thing that we have to think about is what kind of pants she can wear. Only stretchy pants will fit over where her natural foot rests. Jeans don't work. But it's no big deal for us.

As of today, she’s not walking on her own yet. She loves to hold on to our hands and walk with us, though.

Beth

Attachment	Size
pffd_pictures_01_06.pdf	1.04 MB

Olivia’s prosthesis

Beth Reinert — Tue, 15 Nov 2005 18:11:50 +0000

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.

Because of the shape of her leg and the requirements from Dr. Paley, Olivia needed more than just a lift attached to the bottom of her shoe. Her leg slides into a hard shell and her foot is supported in something that looks like a hard plastic slipper. Attached to the bottom of the slipper is an extender with a fake foot at the bottom of it. The foot is basically the same size as her foot on her other longer leg, so she doesn’t have to wear two different size shoes. The prosthesis goes part-way up her thigh and is held on with a Velcro belt that goes around her waist (over her diaper but under her pants). As she walks, this prosthesis is supposed to help straighten out her leg and ankle.

On Day 1, all she would do basically was sit or lay down on the floor. She couldn’t crawl (because the prosthesis doesn’t allow her leg to bend except at her hip) and this caused her great frustration. She would be sitting there and to me it looked like she wasn’t doing anything, but she would just start crying or pouting. I think she was trying to move her short left leg and couldn’t. But since I couldn’t actually see anything, I can’t say for certain.

On Day 3, she started to crawl!! I couldn’t believe it. I thought it would take a couple of weeks.

On Day 4, she pulled herself up to standing! This only happened once that day, but still it happened.

By Day 7, she didn’t mind putting her prosthesis on anymore. No more tears and tantrums when she saw it.

It’s now been 2½ weeks and not only is she pulling herself up, but she’s also cruising along the furniture and with the help of toys. She’ll stand all by herself for ½ a second and then fall. If she holds onto my fingers, she’ll walk with me. My husband and I are thrilled at her progress. I just know that she’ll be walking on her own in no time.

Beth

Olivia’s appt with Dr. Paley

Beth Reinert — Wed, 31 Aug 2005 19:58:18 +0000

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 had some x-rays taken earlier that day, so he reviewed those and then examined her. He told us that Olivia has a good hip, knee, and ankle (that was a comfort to hear), but all of them are not formed correctly. He confirmed that she needs the Super Hip/Knee surgery to correct her hip and knee. Then, he told us that they can perform an operation on her ankle to keep it from turning out to the side. (She has fibular hemimelia.) I didn’t know they could fix her ankle with an operation, I thought she would have to wear a brace of some sort to keep it straight. He said they usually perform the ankle operation at about 18 months old and the hip/knee operation at 24 months old. Each operation has a 6-week recovery period. Since Olivia needs both operations, Dr. Paley recommends combining both operations into one. Her recovery period for this operation would still only be 6-weeks. Amazing! If we go this route, she needs this operation when she is 24 months old. That would put us in June. I was planning on a March operation for her, so I asked him if we could split the difference of 18 and 24 months to 21 months. He said No to that. His reason was, since she’s small (25th percentile in height and weight) she needs to be as old as possible (and as big) in order for them to have more to work with during her surgery. … My husband and I have since decided to go ahead with this surgery when she is about 24 months old. We will call later this year to schedule that operation.

After talking to us about the hip/knee/ankle surgery, he immediately told us that at about age 4 Olivia would get her first lenghthening, at about age 7 or 8 she would get her second, and after her second they would see how many more she would need. I’m pretty sure he said that very rarely more than 3 lengthenings are required. His time was running short during this part of the conversation, so I didn’t get all of my questions answered. I plan to email him to get them answered. But what we got out of it was that he believes Olivia is a good candidate for lengthening. He didn’t even mention another treatment option, such as Van Ness or amputation. He made us feel so confident in his abilities with lengthening that after her appointment we have officially decided to have her treatment method be lengthening. We decided not to wait and see how her hip surgery went to make that decision.

At the end of her appointment, Dr. Paley gave Olivia a prescription for a prosthesis. I have since made an appointment with a local prosthetician at CHOP in Philadelphia. Her first appointment is on September 15th. They say it takes about 3 to 4 weeks to build the device and get insurance approval, so we’ll probably get to bring it home in early to mid October. I asked Dr. Paley if she needed physical therapy once she gets her device. He said that he didn’t think it was necessary. She would be able to figure out how to use it by herself (with our help of course.)

After Dr. Paley got a chance to thoroughly review her x-rays, he calculated her length discrepancy at maturity to be about 34.1 cm (13.4 inches). Previously, we were told her length discrepancy at maturity would be 46.2 cm (18.2 inches). I’m thrilled! That’s about 5 inches less than what we thought.

Until next time.

Beth

Our Beautiful Olivia

Beth Reinert — Wed, 08 Jun 2005 19:56:34 +0000

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.

For Olivia, there are basically 3 options for treatment. (1) They could remove her foot and give her a prosthesis. Both the doctor and we believe that this is not the best option. So it’s not even being considered at this time. (2) Since her left foot is level with her right knee they could fuse her left knee, turn her left foot around 180 degrees (making her foot her new knee) and give her a prosthesis. This is called rotationplasty or the Van Nes procedure. We’re told that this would require only 1 surgery. (3) They could lengthen her leg. Due to the shortness of her left leg, we’re told that this would require about 8 surgeries. … The doctor and my husband are leaning toward the Van Nes, but I am still leaning toward the lengthening. My husband doesn’t want Olivia to have to endure the suffering associated with the lengthening. I want her to have her own leg in the end, but I don’t want her to suffer either. The doctor told us that we do not have to make our treatment decision now. The first thing that needs to happen is Olivia needs surgery to correct the deformities of her knee and hip. It’s called Super Hip/Super Knee surgery. She will get this surgery when she is 18 to 24 months old. The doctor said that after that surgery we will need to choose a treatment option. So we’ll see how she handles it and take it from there. … Olivia’s next appointment is in late August 2005 with Dr. Paley.