Today is Eleanore’s birthday, she would have been 28 if she were still here with us. It is also the birthday of Eleanore’s Project! Our formal acceptance of incorporation papers and 501 (c) (3) status on August 2, 2004 was a delightful coincidence. It is a personal blessing to be able to celebrate Eleanore’s birthday this way.
So today we are sharing a special photo to commemorate the day and our first trip to Peru in 2004. Pictured are Rick, Julian and I (Eleanore’s parents and sister), our dear friend Don Dubuque who thought of the name “Eleanore’s Project” and Sister Elizabeth and a colleague from the school where we worked. Last but not least, front and center is Milagros, who became the new owner of Eleanore’s wheelchair on that day. Happy birthday Eleanore!
Milagros in 2004, who received Eleanore’s wheelchair during our first trip to Peru
In April 2017 Tamara gave a talk as part of the Global Public Health Minor Lecture Series at the University of Montana in Missoula. It was lovely to be able to share about exciting Eleanore’s Project happenings in Peru with wheelchair provision and postural management! Follow this link to see the entire lecture, complete with pictures, thanks to Missoula Community Access Television who recorded the entire series.
We enjoyed the last two weeks with seven occupational therapy students from St. Catherine University. Here is what they shared about their experience of participating in Eleanore’s Project Lima 2017.
- As a full time student at St. Catherine University, I was eager to head to Lima, Peru alongside my classmates. Even after hours of class lecture and homework, my experience meeting families and modifying wheelchairs to meet the complex needs of the children we worked with was beyond what I could have imagined. Between big challenges and small victories, the people of Eleanore’s Project, Yancana Huasy, and St. Catherine University became a united machine! I will never look at a wheelchair as I did before this project. Instead I will see a smiling child and a family ready to experience their world in a new way. Participating with Eleanore’s Project is simply an experience beyond what one can grasp from a textbook alone. Elly
Elly, with interpreter Andres
- I learned the importance of teamwork and using others as resources for knowledge. I also recognized and learned about the needs of the families we served and unique aspects of For instance, thinking about the transportation options is important — especially when parents describe descending a mountain and other terrain issues they will have to face when wheeling their children in the community. Maggie
- The experience of Eleanore’s Project helped me learn a lot about my communication and learning styles which will definitely serve me well on fieldwork and as a future occupational therapist (OT). It has also demonstrated the importance of teamwork among professionals and collaboration with families when providing a child with a wheelchair and a sleep system that fits their needs. Ruthann
Ruthann and Maggie
- Spending time with different therapists and learning from them has been an amazing experience; one that will stick with me the rest of my life. I am so grateful for the opportunity to work with and follow through on the mission of Eleanore’s Project. I will always remember the collaboration with the Yancana Huasy therapists and what I have learned from them about postural care. It was amazing to me that every parent came in and had already completed a workshop on postural care and were reporting how much it was helping their child sleep at night. Becca
- The rewarding gift of a child’s smile and laughter upon receiving a customized wheelchair that meets his or her needs exemplifies my experience with Eleanore’s Project in Peru. The children, teens, and young adults who are provided with mobility and comfort each have a unique story. Their stories have allowed me to enter into others’ lives, experience life from a new perspective, and inspired me to become a more compassionate and understanding person, future OT, and student. Rachel
Becca and Rachel
- My two weeks in Peru working with Eleanore’s Project volunteers has been a life changing experience. I have been moved in many ways through seeing the smiles on kids’ faces, gracious families, and all the hard work individuals have put into making everything work. I have learned so much from both the professionals with Eleanore’s Project and the Yancana Huasy therapists. Not only have I gained knowledge about modifying wheelchairs, but I have also found a new love and appreciation for the importance of 24 hour postural care. Ashton
- Eleanore’s Project has taught me that a language barrier does not stop people from connecting over the desire to love and care for a child. Being resourceful, caring, and determined changed the lives of the children and families we encountered. I feel honored to have been a part of it. Hannah
Ashton and Hannah
Diana lives with her family in Punto Hermosa, outside Lima on the beach. She traveled 2 hours to the Yancana Huasy wheelchair clinic on Monday for replacement of her wheelchair; she is now 13 and after 6 years she had completely outgrown it! She received full service follow-up that included not only a replacement wheelchair, but other therapy input as well. She came with her mother and older sister, with whom she lives.
We worked with Diana before, but she did not have as much follow-up as she will going forward, since Yancana Huasy has developed a solid program with 24 hour postural care and 6 month follow-ups. Her mother had come to training classes and was already positioning Diana therapeutically at night using materials she had at home. They were augmented with a foam knee rest to make it easier by supporting Diana’s legs in the middle. This is really important because she already has hip problems that will be made worse by lying with her legs both going in the same direction.
Diana relaxes in her knee rest while her wheelchair is being prepared for her.
But that was not all. We learned that Diana’s mother has back pain that is worsened by lifting and carrying her daughter, and they have never been taught how Diana can take part of her own weight and help with transfers instead of being lifted. As part of the clinic day they learned this technique that we hope will help save a mother’s back while giving a teenage girl some responsibility for helping with her own transfers.
Diana and her mother learn how to work together for transfers.
By the end of the day Diana Marcela left with a new wheelchair that she can move herself with her feet, a leg rest to use at night while sleeping and new transfer skills to practice with her mother. It feels great to know that she will be followed by Yancana Huasy and get the support she needs going through her teen years!
Diana poses for the camera in her new wheelchair.
Have you ever heard a laugh so infectious that you have to laugh along? That was Fabrizio as he propelled himself in his first wheelchair for the first time. Fabrizio is a really active little guy with cerebral palsy. He can sit and crawl but he cannot walk and had never had a wheelchair before. At age 4, he was ready to move in new ways!
As he waited while the wheelchair was readied for him, Fabrizio was absorbed in musical toys including a special “Dora” one from Laura’s magical toy bag. Once in his new chair Fabrizio was not too keen on touching the wheels at first, but after being shown hand over hand how the chair could move he began to experiment. Inch by inch he pushed the wheels back and forth – until a bigger push really caused him to roll and a peal of laughter erupted. What a look of joy on his face!
Fabrizio’s glee made everyone around him happy!
We all enjoyed Fabrizio’s delight in movement – and the cackle of glee that burst out each time he gave a big push and rolled!
Last night our team of humans arrived safely after long hours of travel to Lima. Happily, some essential non-human materials arrived with them – 11 boxes of seating materials that were accidentally left behind when our shipping container was loaded in January. It was quite a shock to realize, last Monday, that these essential items for creating wheelchair seating systems were missing! They included 5 boxes of liquid Sunmate foam that is used for custom molded seating, and a large number of wheelchair backs generously donated from our friends at Ride Designs. What to do?
The good news was that several people flew from the Twin Cities to Lima this weekend, and they are only about 4 hours’ drive from Sioux Falls, South Dakota – where our boxes awaited. We figured that it might be possible to get the boxes on the plane but at great expense that was unplanned for. Then came the question of bringing them through customs – paying the tax could be another hefty bill. People who have volunteered with Eleanore’s Project know that we have a term when something amazing happens. Circumstances pull together to resolve a problem or we find a desperately needed part that we were sure was missing – these warrant being called “Eleanore moments”.
Safe and sound, our seating materials await the coming week
Well, it was a series of “Eleanore moments” that brought our seating supplies to us safe and sound and at no cost. Barb Gilbertson, OT faculty at St. Kate’s and from Minnesota made exactly the right contact at Delta Airlines through a friend at her church. After transmitting sizes and weights the airline contact agreed to approve our boxes as extra luggage with no fee. Ben Richard at Hope Haven in Sioux Falls, drove the boxes to Barb in Minneapolis. Meanwhile in Lima, Jose Antonio wrote a special letter on Yancana Huasy letterhead to Peruvian customs authorities asking for entry of our materials duty free at the airport. I sent it to Barb on Friday.
On Saturday morning Barb and seven occupational therapy students checked in at the Delta counter with their own luggage and our extra boxes. It was all accepted with no problem. Similarly, passage through customs in Lima was unexpectedly a breeze. After checking the Yancana letter an official asked to open one box. After a quick lesson on the usage of liquid foam for making custom back supports, he waved everyone through. A true “Eleanore moment”!
On Friday Sammie and I met Jesús, who is 22 years old. We were supposed to visit him the day before, but roads were closed because of flooding. On the way to his house we witnessed the Rimac River raging, sandbagged intersections and people cleaning their streets that had been previously flooded. Elizabeth (OT) and Margot (social worker) together with our interpreter, Stephanie, were our companions.
Lucia, Jesús’ mother, met us at the door and led us to meet her son lying in bed. She became connected with Yancana Huasy only one month ago, after seeing someone else’s child in a customized wheelchair and asking where it came from. Since then she has attended every class on 24 hour postural care and wheelchairs, even though she must travel a fair distance. She sends photos to Elizabeth asking for advice on what she is doing. Lucia has created a sleep system to position her son therapeutically while he lies in bed. She was glad to report his gains, is especially excited about improvement in his breathing and said he sleeps much better now. Elizabeth pointed out that Jesús is already less windswept (a term used when both legs fall to one side) after only a few weeks.
We then saw the custom tilt-in-space wheelchair that Elizabeth and colleagues have been working on for Jesús. It is still a work in progress, but is a clear demonstration of the skills they have developed as seating therapists. It is also clear that Jesús is benefiting together with his mother! For the first time in 22 years, he can eat sitting in a chair rather than being held in his mother’s arms. Lucia is now taking him for walks in the neighborhood which he enjoys. This was impossible in his former, inappropriate wheelchair, which caused him great pain.
Jesús and his wonderful parents enjoying each other
Jesús and his family are a wonderful example of what can happen through collaboration with caring professionals, who provide meaningful education in ways that make sense for lay people who want to do the best they can for their loved ones.
Today is our last day in Nasca, and for many of the team, the second to last day in Peru. Some of us will stay longer – some for just a few days, others for a couple weeks. The last recipients’ wheelchairs are being finished, and the job of packing up things and deciding what to take back to Lima, what to leave here and what we need to take ourselves is beginning. We rely on having accurate lists of parts and other things that we leave here so that we have a basis for bringing things next year.
Already we have had one very significant success with 24 hour postural care. Giancarlo, a little boy with opisthotonus, came in so we could finish the wheelchair we started for him on Wednesday. On Wednesday, Tamara had given a 45 minute presentation on the importance of night time positioning, which his and others’ parents attended. They thought that Giancarlo moved so much at night that he could not maintain a good supportive position on his back. However, they tried at home for two nights and were able to have Giancarlo well supported for 4 hours after he fell asleep. Amazing! One more person on the road to a better-aligned body. They are excited to do more.
Giancarlo with his parents and team.
Cielo, a little girl who is a first time wheelchair user, was fascinated with the wheels on her wheelchair. As soon as she was in it, she started moving the wheels and herself. What a joy to see the smile on her face! A true marvel that for the first time in her life she could go where she wanted to under her own power. Also probably a little dangerous as she runs into people and things, learning her limits. The smiles on her face and that of her mother make everything worthwhile.
Cielo, her mom, and her team.
This is how a wheelchair leaves our clinic. The taxis here are very small. A Tico, like this taxi, is about the height of my hips. I am about 6 feet tall.
A taxi leaves with a wheelchair on its roof.
Tomorrow we have a long bus ride back to Lima and the Airport. It has been an amazing time, and a great learning experience for everyone.
Each year, we ask the students from Saint Catherine University that come on our expedition with us to reflect on their experience. I am always inspired by the students – they are such wonderful young women, and occasionally men. They give me great hope for the future. This is their contribution for this year. We hope that you enjoy it.
As the students working with Eleanore’s Project this year, we’ve learned more than we thought possible. In school, we learn about caring for the family as well as the client, and here, we’ve seen proof of how important it is. Many of the families we’ve met will go to great lengths to care for their child. One family traveled for two days by bus (one way) to come to Eleanore’s Project.
We also learned that family members are the experts on their children. They know best what the child enjoys, how they communicate, and what they need to be comfortable. Many parents took very active roles in the construction of their child’s chair and sleep system. They had valuable input about the child’s normal positions and when they were in pain or happy. The looks on the parents’ faces when we were able to use their suggestions to create a more comfortable and supportive seat for their child were heartwarming as they could really see that they had made a difference and knew that they were important members of our team.
We could tell you numerous examples of how we see the therapists working with Eleanore’s project provide family focused care, but one in particular shows how this is done. One 9 year old child, named Antony, was coming for his first chair. His dad seemed very interested in the process so the technician working on the chair took him to the workroom and taught him to make most of the adjustments and changes that were needed. In the US, though teaching families about how equipment works is important, repairs and adjustments are usually just a phone call and quick visit away. However, in Peru it is important to give families the tools and education they need to maintain the chair for the long run.
The faces of the children and their families upon getting upright in a chair for the first time and being able to see the world around them, moving the wheelchair on their own, or being able get out into the community with their child will stick with us forever. All in all, it’s been an incredible experience of learning, both from the members of the team and the clients and families that we’ve met. Each of these experiences have influenced us deeply and we feel lucky to have been a part of this amazing project.
The last few days have been hectic; hence the lack of blog activity. On Monday night at about 8:00 pm, Tamara fell and bruised her left knee pretty badly. The pain and swelling were so severe that we feared she had broken her kneecap. So we went to a clinic in Nasca and had her knees x-rayed. We had to take Claudia, one of our wonderful volunteer translators from Ecuador with us so that we would understand very clearly what the doctor and other professionals were saying. Fortunately the x-rays showed that no bones were broken and the kneecap seemed OK. The doctor gave Tamara a shot with anti-inflammatory and analgesic drugs, and pills to take for the next five days. Today, Thursday, Tamara is able to walk independently or short distances, and uses a wheelchair as a walker other times.
The work here in Nasca has proceeded apace. We have had some kids with complex body shapes to deal with. As the dedicated photographer for the group, I have a very deep appreciation for our team. We seem to get better year by year, no doubt due to the returning therapists and technicians who bring the “no ego, hard work” ethos that is typical of Eleanore’s Project. So the attached pictures are of the volunteers working this morning. Without their hard work and deep knowledge, we could not do Eleanore’s Project.
Shelley and Sammie sewing.
Claudia interprets as Emma and Erica talk to the family.
Scott and Alan work on a wheelchair.
Jorge, Lucho and Alan work on a wheelchair.
Brian and Emma search for the correct bolt.
Laura takes a photo.
Rachel and Tim discuss tools.
Barb talks to Mom as Carla interprets.
Anna and Kim position a child in a wheelchair.