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Links from the program: Challenged Athletes; Team Cody

Continued Therapy

Suzanne has now been to a few physical and occupational therapy sessions. One exercise she had to complete was balancing on one leg, while the other rested upon and manipulated a grapefruit sized ball. While it may seem easy at first, the exercise demonstrated how the balance normally derived from the calves and ankles needs to be compensated in the hips, thighs and back muscles. Another therapy on her hands, was placing pegs in a pegboard using the thumb and various digits. Due to Suzanne’s inability to touch her thumb to pinky, the task proved exceedingly challenging. The therapy sessions are meant to bring Suzanne back to a baseline level of competency. Many more sessions are planned for the coming weeks.

In other news headlines, here are a few articles which stand out and somewhat related to Suzanne’s situation.

1) Iraq Amputee First Person Fitted With Revolutionary 'Bionic' Legs.

2) First double hand transplant in the US completed.

3) Disabled Vet completes marathon in 13 days.

4) Double amputee faces eviction over medicinal pot.

Back at Home

Suzanne's stay at the NRH lasted a few days longer than we all expected. She was released on Wednesday afternoon, with a promise to her doctors to continue her therapy on her own and as an outpatient. The NRH therapists had her using parallel bars and stair climbers to advance her balance and leg strength. And on Tuesday, Gabrielle, joined her for mother-child independence therapy. Friday she again visited with her prosthetist for further adjustments to her limb sockets. The sturdy fiberglass does not mould to her legs and needs constant tweaking while she is adjusting to the fit.

Next on the agenda will be further revisions to Suzanne's right leg, to remove granular scar tissue and to improve the fit and comfort on that side. Her hands and arms will be addressed as well, in the near future, to remove scar tissue and release some scar-muscle tissue adhesions. However, with that said, things are moving forward and Suzanne has found a new confidence in her ability to walk unassisted with and without a walker. She just needs to build up her tolerance to be able to wear the legs for more than an hour or two at a time, due to the pain and discomfort she is currently dealing with.

Side note: Last night, 60 Minutes aired a segment about DARPA spending $100M+ on technological advancements to artificial extremities. It is posted below.

60 Minuntes Article About Bionic Arms

Watch CBS Videos Online

Sue Returns to the NRH

This morning, Suzanne, checked back into the NRH for a one-week inpatient therapy session. Since receiving her second leg, back in January, she has been without any formal training or rehab, to maximize her ability to walk comfortably. Because of the delay in the approval process, she was permitted to take a two week trip to Wisconsin, with her parents and Gabrielle, where she had more floor space to walk around, aided by the walker, than the townhouse. Approval was granted last week for Sue to return today. There, she is anticipating three, hour-long sessions daily. Interestingly, Suzanne has been assigned the same room where she stayed over one year ago. And having kept in touch with some of her therapists, everyone is arranging schedules so they are able to work with her. Once she has had a chance to learn the best exercises and a therapy regimen, she will make it part of her regular routine at the gym after returning home.

Standing Tall

Today Suzanne received her second prosthetic leg. This is the first time in over 15 months that she has stood upright, on her own. There is a great deal of discomfort in the pair, as she is now putting all of her weight onto her patellar tendons. Over the course of the coming weeks, and after much physical therapy, she should be able to walk unassisted. However for the time being, she has a walker and her wheelchair to get around. We are all very excited about this milestone and look forward to her increased mobility and comfort. (Click Image to Enlarge)

More details about Suzanne's prosthetic feet here and here.

Brazilian Model Dies from Sepsis

A 20-year-old Brazilian model, Mariana Bridi da Costa, whose feet and hands were amputated due to a septic infection has died. Da Costa fell ill on December 30, but was initially misdiagnosed with kidney stones. By the time the cause was detected, she had developed septicaemia from Pseudomonas aeruginosa. This story highlights the rapid deterioration resulting from sepsis and the unfortunate inability of the medical community to recognize the signs and symptoms of this deadly illness. More 1 2 3

Amputee Fights for Coverage of Prosthetics

Good Morning America reported this morning about a Virginia woman, Susan Bailey, who fell ill after eating an E. coli infected meal. Because of the course of the infection, doctors were forced to perform a double above-knee amputation on Susan. The GMA article does not focus on the infection or treatment, but rather the decision by her insurance company not to pay for the high-end prosthetic legs. "Anthem Blue Cross Blue Shield refused to pay for the more expensive C-Legs because they were experimental and not medically necessary. More than 25,000 C-Legs have been used by amputees." There was a "happy" ending to the story as a result of GMA contacting the Virginia Bureau of Insurance, which regulates insurers. They reviewed her case and within a few weeks, the state overruled Anthem and ordered them to pay for her new legs. There is a six minute long video at the GMA website, if you are interested.
This story highlights some of the unfortunate circumstances that occur between insurance providers and amputees. Because Suzanne has below-knee prosthetics, she has not encountered the same sort of resistance, as of yet. We hope this remains true going forward.

Continued Strides

It has been a busy couple of weeks for Suzanne. Last Friday she met with her prosthetist again, so that he could assess the fit and comfort of her left leg. He also made a mold of her right leg during the visit to proceed with ordering the prosthesis for that side. Suzanne has also been making twice weekly trips to the NRH to strengthen her core and prepare for her gait training which will immediately follow the arrival of the right leg prosthesis. Yesterday, Suzanne was reunited, for the first time, with many of her SOCMA colleagues at their Christmas luncheon. It was an opportunity for everyone to see Suzanne’s progress, meet Gabby and was a chance for Sue to catch up on the office gossip. When she has finished with her gait training, probably in January, she will soon be taking back some of her old responsibilities.

First Steps Redux

Today, Suzanne met with her prosthetist to receive the first of her new prosthetic limbs. Because she is a bilateral transtibial amputee, once she has the second limb, she will need to return to the NRH for "Gait Training" which will help her walk more naturally. Before then, she is going to be building her upper body strength with the parallel bars, walkers and crutches as an outpatient. Below are some images from today.





For Larger Versions of these images, click on the slideshow to visit the folder where they're located.

One Year Ago Today

Sue spent the night of October 26th 2007,  in the Emergency Room. You know the rest.

Simply Amazing

It is truly a miracle, what some of the surgeons are able to accomplish. Details Here.

Happy Birthday Suzanne

Suzanne met with her prosthetist on Tuesday to begin the casting process for the molds which will be used to snugly fit the prosthetic limbs, once completed. A detailed description of the process can be found here. But simply, the process is to create a negative mold which will be used to create an identical limb to Suzanne residual limb.

The left leg was completed on Tuesday. On Wednesday she visited with her surgeon again to assess the progress on her right leg. Because she is still waiting for the tissue to heal from her last surgery, the prosthetist did not want to make a mold of the right. But Her surgeon is gung-ho and thinks she is ready to be cast for that side as well. This will allow Suzanne to begin walking with both legs, rather than just one, on a temporary basis, as was originally planned. Now we need to get her back in there for the right mold. Stay tuned for an update on the delivery of the new legs. In the meantime, she is celebrating her birthday today (35), and happily celebrated Gabrielle’s over the last week. It is hard to believe that it has been a year since this all began. But looking forward is a lot easier than backward – more comfortable on the neck.

Mother Warriors, Monica appears on Oprah

All of us here at the "Bionic Mom" blog are familiar with the story of Monica Sprague. Now Oprah has brought Sepsis to the front of everyone else's minds. Monica appeared with Jenny McCarthy today, and Suzanne was fortunate enough to be home to see it. Sue said she was glad to to see how strong Monica looked. She was glad that Monica was up and walking and had such high energy. Since removing the staples in her right leg, she met with her prosthetist about measuring for the left leg. Nothing more to report right now.

How It's Made

Now that Suzanne has had the staples removed, from her right leg, she is moving even closer to her prosthetic fitting appointment. None has been set, because there is still significant healing to be done at the incision site. But when the surgeon has determined the skin to be strong enough, she will proceed. The left leg may be fitted soon though. Below I am including a video from the TV series "How It's Made." The first segment in the video features the prosthetic manufacturing process. It is oversimplified, but still interesting to watch.

One more down...

Suzanne's operation yesterday was successful. During the three hour surgery, the doctors were able to shape the right leg to properly fit in a prosthetic socket. The final decision will be determined once the staples have been removed and the grafted skin from the earlier surgeries is tested in the prosthetics. Because the grafted skin is not as durable as natural skin, there may need to be future, skin stretching, plastic surgery to strengthen the ends of the limbs for shear strength. Info about grafted skin can be found here (Note graphic images included with article). Sue is expected to be in the hospital for two to three more nights, to manage the pain and wound from the surgery. She should have the staples out in about two weeks, once the wound closes completely and preliminary prosthetic fitting can follow within weeks of that.

Olympic Amputees

We are all aware of Oscar, but were you aware of Natalie or Natalia? Natalie competed in Beijing for South Africa, in distance swimming. Natalia is already a Paralympics ping pong medalist, competing for Poland in Beijing this year. These are just two more examples of how athleticism and sportsmanship know no disability. But for Natalia and Natalia, nobody is complaining that they have a mechanical advantage.

Sepsis in the News

This video was taken from the Wall Street Journal's, August 14th, online edition. A lot of interesting information is included in both the video and the linked page. Please click on the play button and wait for the "Sponsor Message" to complete.

VIDEO DISABLED BY WSJ

UPDATE: Here is another WSJ article from August 27th, focusing on Sepsis

Next Surgery Date Set

Suzanne’s next surgery date has just been set. The revision of her left leg has been healing successfully, while the right leg has largely been ignored since she was released from the hospital in February. This is in part due to the desire for continued physical and occupational therapy but also to allow some sores to heal. Because she had a staph infection on the end of her right leg, the surgeons did not want to introduce this to the operating room. Now that she has recovered from the Staph, the revision for sculpting can proceed. The date has been set for Tuesday, August 26th – which is still a month away. Hopefully this will be the last leg surgery needed before proceeding to prosthetics. However, the surgeon has indicated that due to the shorter length on the right, he may need to do two small surgeries instead.

Britain's "Beauty Season"

An article found here introduces a new show in the UK based on the "next top model" franchise. The show features eight models who have some sort or severe disability. Says the article "The show's creators hoped the series would challenge pre-conceived notions of beauty and raise disability awareness." I agree that it will challenge preconceived notions about disability, but I'm not convinced it isn't just a ratings grab. (UPDATE: Series Complete - Official Website HERE)

Forever Friends

This weekend some of Suzanne's friends, from her college sorority, trekked down from New Jersey to pay a visit to her and the baby. They all took time from their own hectic lives to carpool down to Virginia to be there for Suzanne. They can be seen here with Suzanne...
Front Row: Kris Anne, Sally and Lori. Back Row: Suzanne, Denise, Christine (Holding Gabby).
This is just another example of how wonderful her family and friends have been through the whole ordeal. Suzanne is lucky to have such good people in her life.



Suzanne would also like to express her sadness at the departure of her home care occupational therapist, Carly, who has recently relocated out of the area and will not be able to continue participating in her recovery. Carly had been assisting Suzanne twice a week to regain function in her hands. Thank you Carly. Keep in touch!

Home Again

Suzanne returned home on Friday, as was originally planned. Before leaving she took a couple photos with some of the nurses and staff who made her stay so comfortable, all those weeks. They were all glad to see her progress and look forward to her self-propelled return visit. Here are some of them: Ron, one of her physical therapists, who has a wonderfully cheerful disposition that always keeps Suzanne going, and Karen, her case manager, who is a life-saver with all of Sue's paperwork (L). Aubrey, one of Suzanne's most dedicated nurses. Aubrey just got married and brought in her wedding photos to share with Sue. Congrats Aubrey! (R). And Marie, one of the aides who frequently switched rooms to be with Suzanne as often as possible (L). Sue wanted to recognize here some of the people who have been spending countless hours with her. These are only a few of many, so we plan to post more people as we go on. For those of you who haven't seen Sue lately, how do you like the haircut?

One step closer...

Suzanne came out of the operation with flying colors. She spent several hours recovering in the PACU, before moving back to the 3E wing, with the same nurses from her previous stay. There was a parade of hugs and well wishes from the nurses and technicians who became an extended family over the winter months. Suzanne said it was “like a homecoming” and she was glad that she was with the nurses whom she knows.
The operation focused on the shape and structure of Suzanne's left leg. The two bones, tibia and fibula, had fused together during her original hospital stay, probably due to her increased metabolism for healing and scarring. By waiting until she has returned to homeostasis, the chances of a repeat fuse are unlikely. Dr. Jordan has indicated he would like to address her right leg in about 4 weeks. But overall, today was a success. She will stay for 2 to 3 nights for observation before returning home for further recovery.

Surgery Tomorrow

This morning, Suzanne will be heading to the WHC for blood work, in preparation of her surgery tomorrow. The operation is going to focus on shaping her left leg, but may include the right. However, they are not scheduled to work on her hands. She will have an overnight stay to monitor her vitals, but she’ll be home on Wednesday. Suzanne is, understandably, not looking forward to the operation but is anxious to have them completed.

ESPN Magazine Article

Last week's issue of the ESPN Magazine featured a story about athletes who have prosthetic limbs. They get into an in depth discussion about whether some may give their users advantages over other "able bodied" athletes. The man to the right, Alex Zanardi, had both of his legs amputated after a crash during one of his races. I look forward to Suzanne driving again. She has a meeting with the hand specialist tomorrow, to go over the results from last week. But the next leg operation is still pending. Other than that, Happy Mother's Day!

On her Nerves

Suzanne had a second nerve conduction velocity test performed yesterday. By sending low voltage (but highly uncomfortable) electrical current through her nerves, the device could read the speed at which the signal traveled. Her doctor tested the radial, ulnar and median nerves. When compared to her first test, where there was high signal loss, the results yesterday showed slightly improved signal transmissions across the dense scar tissue of her right arm. He was cautiously optimistic with the results. This does not imply that the nerve damage has been repaired, or that further function will be gained without invasive operations, but she may be on the right course to increased muscle function in her hand.

Counting Down

The six weeks were up on Wednesday the 16^th so Suzanne met with her surgeon and rehab specialist at the WHC and NRH. The consensus was that she should be ready to proceed with her next set of operations in a couple of weeks. For a change of scenery, while awaiting the next phase, Bob & Nella, Sue, Gabby & Pat piled into their cars and drove two days to Wisconsin. Sue has been relaxing at her parents’ house, with Gabby, for the last week and will return home next weekend. The next operations will be preparing the legs for a proper fit, and will be a series of small outpatient procedures, or have a single overnight stay. The expected time-line is three to four months before she is able to be measured for the new legs. In the meantime she is continuing with her resistance training and weight bearing exercises.

Gabby's First Easter

Suzanne climbed into the wheelchair to go to Kiddie Kandids for Gabby's 5 month portrait. After a couple of weeks in the house, with only visits to the various doctors, it's good to get her out and back into mainstream society. She is adjusting well and is looking forward to visiting with friends very soon.

Here's one of the photos we took today. The doll was one of the first gifts we received after finding out Suzanne was having a girl. Nella found a matching outfit and we thought it would be great to put them together. Gabby is thriving, thanks to constant attention from mommy and grandma. Sadly, next week she gets another series of shots; I'm glad we took the portrait first.

Prosthetist

Wednesday afternoon Suzanne met with a prosthetist to discuss possibly fitting her for temporary legs, in an effort to move the progress forward at a faster rate. However, due to the scarring and weak skin on the lower legs, he would like to wait until the future shaping operations have been completed before fitting. The risk would be in tearing the skin or wounds moving her backwards instead of ahead. He showed us a prosthetic leg with a quick release socket mechanism, which will be easy to operate. It involves a silicone sleeve with a peg on the bottom. Once the sleeve it worn, the new leg mechanically fastens to the peg. An image can be seen here on Corbis, but it is right protected and I don’t want to get anyone upset.

On Monday, Suzanne had nerve conduction testing performed on her right arm. There is nerve damage or obstruction in the forearm, which is preventing her from using her hand effectively. The test electrically stimulated the nerves and muscles for abnormal responses. It yielded informative but disappointing results. It didn’t reveal the cause of the signal loss, but located where the good nerves end and the damage begins. The hand specialist will review the results before we return to Baltimore to discuss the results with the hand specialist.

Other than that, the game plan is to continue waiting the remaining weeks until meeting with the surgeon about reshaping the legs.

Hand Center

Today Suzanne met with a hand specialist to discuss the next course of action on her upper extremities. He would like to wait until Sue has had her prosthetics fitted prior to doing any work on her hands. She will need to keep the strength she has when using walking devices. But there are many things he can do to increase mobility and function, over time. Sue will have some nerve stimulus testing performed soon, to see where they will need to start. However, this was expected, based upon our meeting on Thursday with her surgeon at WHC. His plan is for Sue to come back in six weeks to see if her legs scars and skin are healed enough to begin further sculpting. But for right now, he wants her home, for the six weeks.