At the Carousel with Eleanore’s Project

Last night was our first time hosting an awareness and funds raising event in the summer at A Carousel for Missoula. The concept seemed great – presumably nice weather, with lots of folks attending Downtown Tonight, a community event with live music and food vendors just down the way.

But it poured rain so the turnout was poor – some Downtown Tonight vendors packed up and left early on. We stuck it out and those folks who joined us at the Carousel enjoyed unlimited rides for the purchase of a hand knotted bracelet from Peru, and had opportunity to learn about wheelchair needs in Peru as well as in the United States. In addition to photos of our wheelchair clinics in Peru, there was an educational area about threats to wheelchair funding here and the Complex Rehabilitation Technology legislation in Congress that would improve access and fair regulation if it becomes law.

When the rain let up for a bit we were able to set up the wheelchair skills course we had planned. While the numbers of participants were small, they had a good time and some came back for a second try at mastering wheelies and shooting baskets! A big thanks to Laura Miklautsch, board member extraordinaire who organized this event pretty much single handed, and A Carousel for Missoula for generously allowing us use of the Carousel. We hope to try this again in the future – with better weather!

Board member Laura Miklautsch and volunteer Abby Jarvie (right) coach a first time wheelchair rider in the finer points of doing wheelies to negotiate obstacles.

Board member Laura Miklautsch (middle) and volunteer Abby Jarvie (right) coach a first time wheelchair rider in the finer points of doing wheelies to negotiate obstacles.

 

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The Final Day

This week we have worked with a small crew since Monday. Kate Barrett and five St. Kate’s OT students worked in the clinic with Yancana Huasy staff Monday morning, with Sammie, Mary Beth and I joining them straight from the airport right after lunch. Tuesday was our second Hellen Keller day and was REALLY long – we left Yancana at 9 pm. Had we been fully staffed it would have been much shorter and we were exhausted but there were many grateful parents and kids who looked good in their chairs – despite their own exhaustion. These families lived in the Pachacutec district and came far for the opportunity to have their children receive custom fit wheelchairs.

Today was our final day and we worked only until lunch. For many people the next four days of Semana Santa (Holy Week)are holidays. We did what we could, and Yancana Huasy staff will do a great job of fitting the remaining wheelchairs in the coming weeks. After lunch we packed our things, both the Eleanore’s Project suitcases that are stored at Yancana from year to year and the ones we are taking home. Goodbyes followed…always hard. Strong bonds are formed as we work together. For me personally, leaving Yancana is as much a wrench as the joy I feel when I arrive each year. It is a special place with special people and has won my heart. Here are some scenes:

Peaceful and empty to start the day, this is the sacred space of Our Lord of Hope Parish in Canto Grande. Yancana Huasy is directly connected and the parish allows us to use this space for our clinics each year.

Peaceful and empty to start the day, this is the sacred space of Our Lord of Hope Parish in Canto Grande. Yancana Huasy is directly connected and the parish allows us to use this space for our clinics each year.

Augusto, Edward and Marlon, Yancana PTs in the hallway leading to the medical clinic.

Augusto, Edward and Marlon, Yancana PTs in the hallway leading to the medical clinic.

The last of our team poses with Chris Ventura, OT at Yancana Huasy.

The last of our team poses with Chris Ventura, OT at Yancana Huasy.

Mary Beth, Sammie and me in the empty clinic space at the end of our work today.

Mary Beth, Sammie and me in the empty clinic space at the end of our work today.

A more typical view as things get busy.

A more typical view as things get busy.

 

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From the St. Catherine University Occupational Therapy Students

As second year graduate students at St. Catherine University we committed to coming to Peru as part of our masters project last spring. At that time we had limited knowledge of seating and positioning and we were not quite sure what to expect. In preparation for coming to Peru we learned more about wheelchairs, brushed up our skills with tools, and became incredibly excited about the opportunity to travel to Peru for a hands on experience working with Eleanore’s project and Peruvian families. However, regardless of the amount of time we spent preparing, there is nothing could have really prepared us for the amazing and life changing experience that we have had over the past two weeks.

We have been both overwhelmed and amazed by the number of modifications that can be made to wheelchairs, despite time constraints and available resources. We have all enjoyed using our minds to be creative while practicing the fundamentals of occupational therapy (empowering children and their families, promoting independence, and providing ways for families to engage in meaningful activities). We have learned an incredible amount and have become much more confident in the skills that we have. Initially on our first day with the project we were incredibly overwhelmed and now as we approach our last day of wheelchair clinics we are able to take more initiative and do more on own. However, with this increased initiative also comes increased awareness that we have so much more to learn! Through our time here we have learned more than we could ever learn from a textbook and we will bring home so many memories and experiences that will forever be in our hearts.

Over the past couple of weeks we have heard families discuss their excitement about the new experiences that the wheelchairs will provide, including the ability to attend church and school and also being able to go to the park for the very first time. Some children will now be be able to eat at the table with their family and independently move through the environment without being carried on a parents back. For some children this was their very first chair while others have returned for a different chair. Regardless, they all now have a properly fitted wheelchair that will promote better posture while also improving quality of life. The magnitude of the work that has been done here already and will continue to be done in future is unfathomable.

This opportunity has been invaluable and we are so grateful to have had the chance to be a part of such a wonderful organization. We have been blessed to learn from the patient therapists that have given us numerous opportunities to learn about tools, hardware, positioning, and seating systems. It has been remarkable to be part of a team that does not stop until things are right, regardless of the number of hours that it takes to get there or how impossible it may seem, but because the child and the family deserve to have the best that we are able to give them. Being flexible and thinking outside the box are two big things that we have learned to really value, as we have learned this week that many things can be used in completely different ways. It has  been challenging yet liberating to be able to use only the supplies and equipment that we have in front of us to create a seating system that is functional and beneficial for each child. This experience has also made us aware of just how much we take for granted, as we are used to having so many resources available at our fingertips. Being submersed into this cultural experience has given us a professional and personal opportunity of a lifetime, one that we will not soon forget!

Heidi and a young client flexing their muscles!

Heidi and a young client flexing their muscles!

Sarah, Katie, Heidi and Jenna in the shop/workroom at Yancana Huasy.

Sarah, Katie, Heidi and Jenna in the shop/workroom at Yancana Huasy.

Jenna and one of the kids have fun with bubbles while waiting.

Jenna and one of the kids have fun with bubbles while waiting.

Elise and Katie flank Luis, who loved flirting with all the girls!

Elise and Katie flank Luis, who loved flirting with all the girls!

Kim, Elise and Tamara collaborate to create just the right chair for a young man.

Kim, Elise and Tamara collaborate to create just the right chair for a young man.

Sarah works on a wheelchair frame.

Sarah works on a wheelchair frame.

Jenna, Sarah, Heidi, Elise, and Katie

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From Mary Beth

As a student, I am blessed to be a part of this project and so thankful for the opportunity to learn from a diverse group of Peruvian professionals and American professionals who are experts in the field of wheelchair seating. I now feel more confident in my skills to evaluate a client, suggest appropriate seating components, and adjust the wheelchair as needed. The stories and hands-on experiences from the last two weeks will always hold a special place in my heart. At the end of the day, when you receive the hugs, smiles, tears, and see the happiness on the families and child’s face you know the challenges, hard work, time, and sweat was well worth it! The last two weeks has taught me more about the occupational therapy profession, wheelchair seating, and myself than any classroom experience could have taught me. This unique experience has provided me with valuable knowledge and relationships that I will cherish forever.

Sweet 2 yr. old Ivan was the first child I helped fit a Kid Kart for in Arequipa.

Sweet 2 yr. old Ivan was the first child I helped fit a Kid Kart for in Arequipa.

Helping teach Adriana to self propel. She was a pro after only ten minutes!

Helping teach Adriana to self propel. She was a pro after only ten minutes!

Daniela is a beautiful 11-year-old girl diagnosed with CP. Once in her chair she was ready to explore. She had a huge smile on her face and hugs for everyone!

Daniela is a beautiful 11-year-old girl diagnosed with CP. Once in her chair she was ready to explore. She had a huge smile on her face and hugs for everyone!

Collaborating with Enrique from the Lions Club in Arequipa.

Collaborating with Enrique from the Lions Club in Arequipa.

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Friday

Today we enjoyed working with children from Aynimundo. Take a look…

1 year old Omar waited patiently for his turn.

1 year old Omar waited patiently for his turn.

Fabian waiting with his father. His evaluation form was sent too late to meet the deadline for this year's wheelchair shipment but we found a chair for him anyway.

Fabian waiting with his father. His evaluation form was sent too late to meet the deadline for this year’s wheelchair shipment but we found a chair for him anyway.

Fabian with Sammie and Kate, who completed his wheelchair.

Fabian with Sammie and Kate, who completed his wheelchair.

Three year old Kael was fascinated with his photo as he sat in his new chair.

Three year old Kael was fascinated with his photo as he sat in his new chair.

A team photo at the end of Friday, Eleanore's Project and Yancana Huasy together.

A team photo at the end of Friday, Eleanore’s Project and Yancana Huasy together.

Tonight we had a dinner party with the Yancana Huasy team at Centro Peyton, because many of our group are heading home. Kim, Jeff and Nina left tonight, while Rick, Laura, Judi and Ashley will leave Peyton tomorrow. Sammie, Mary Beth and I fly to Cusco tomorrow and will report on our adventures there. The St. Kate’s group is heading to the beach at Punto Hermosa for the weekend. We will be together again at Yancana Huasy for another three days of clinics next week, so stay tuned!

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Why We Do This

Today was the first of two days scheduled with children from Hellen Keller Program. We worked with 9 wonderful kids and their families. Another 10 will come to Yancana Huasy next Tuesday.

Anthony eats lunch in his new chair. His mother expressed such pleasure that he could swallow and eat his food more easily than before.

Anthony eats lunch in his new chair. His mother expressed surprise and pleasure that he could swallow and eat his food more easily than before.

Daniela digs into her lunch on her own! In her new wheelchair she was "Miss Independent".

Daniela digs into her lunch on her own! In her new wheelchair she was “Miss Independent”.

Jeritza will turn 7 next week. Today she sat in a chair for the first time and went for a ride!

Jeritza will turn 7 next week. Today she sat in a chair for the first time and went for a ride!

OT students Jenna (L) and Mary Beth (R) with the kids they seated together as a dynamic team - Jose Luis and Daniela.

OT students Jenna (L) and Mary Beth (R) with the kids they seated together as a dynamic team – Jose Luis and Daniela.

Daniela and Laura passed time coloring while other kids got their wheelchairs.

Daniela and Laura passed time coloring while other kids got their wheelchairs.

Jose Miguel, his mother and the team who worked with him all day - OT student Katie, Sammie and Kim.

Jose Miguel, his mother and the team who worked with him all day – OT student Katie, Sammie and Kim.

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Stories and Photos

Rosa is an active 22 year old woman who is paraplegic, and arrived in a wheelchair that was worn out and made her back hurt. She left in a well-fitting wheelchair that allowed her propel herself much more easily and efficiently. She left the clinic, hailed a taxi, transferred into it and disassembled the chair, bringing it in after her. Talk about independence!

Rosa, just before leaving the clinic.

Rosa, just before leaving the clinic.

Luis had a hard time staying upright in his old wheelchair.

Luis had a hard time staying upright in his old wheelchair.

Luis is 16 years old and has cerebral palsy. By his mother’s account, he was pretty much unresponsive until he was about 6 years old. After that he became much more active and interested in the world. Today he is a huge flirt with all the young women – and there are plenty of them between the Peruvians and Americans in our clinic! Luis arrived sliding out of a wheelchair with no support. Years of sitting poorly have left him with a significantly curved spine. As a result he could not sit up straight; unless he sat on his tailbone sliding out of the chair his line of sight was the floor and his lap. By the time he left the clinic Luis was even more of a flirt because he was stable as he sat in a tilt-in-space wheelchair and could look around more easily to see the girls!

Luis, always smiling but now sitting and and seeing the world around him much better.

Luis, always smiling but now sitting and and seeing the world around him much better.

 

 

 

 

 

 

 

 

 

One of the last children of the day was Adriana, a little girl who lives 10 hours away from Lima. She was referred to Yancana Huasy for a wheelchair because she has osteogenesis imperfecta, sometimes known as brittle bone disease. Her bones break easily; her mother said that each time she has a fracture her walking is more limited and she is afraid that the next one will make it impossible for her to walk. The teacher in her local school has refused to allow her into kindergarten because of the risk of fractures. Rosa entered our clinic in her parents arms, a very sober little 4 year old. Her parents expected her to get a big wheelchair that she would not be able to push, but as we talked they agreed that a chair she could move herself would be much better than one that others would always have to push. They looked amazed when a spiffy little red chair sized for a little child was rolled out! Rosa took to it right away. Three hours later it was customized to fit her and she rolled away under her own power with a smile on her face.

Rosa, her family and the crew who worked with her. Bottom row L to R, Elise, Mary Beth, Ashley, Luis and Tamara.

Rosa, her family and the crew who worked with her. Bottom row L to R, Elise, Mary Beth, Ashley, Luis and Tamara.

 

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Fines Grown Up

Eleanore’s Project began working with Yancana Huasy in a small way in 2007, before expanding our partnership in 2008. In March 2007 I first met Fines (“feen-ays”), who was 12 years old at the time and received her first wheelchair. Fines has a curious mind, warm heart and cerebral palsy. We saw her last year, but has grown more and needed a larger chair.

Fines at age 12, waiting for her first wheelchair evaluation.

Fines at age 12, waiting for her first wheelchair evaluation.

12 year old Fines was highly curious about the whole process.

12 year old Fines was highly curious about the whole process.

Fines in her first wheelchair, nearly complete!

Fines in her first wheelchair, nearly complete!

Today Fines returned to our clinic for replacement of her wheelchair. She understands and speaks some English as well as Spanish, and she was a full participant in the whole evaluation process. Her type of CP results in very strong and uncontrolled movements that have sometimes resulted in injuries – most recently an accident in the kitchen last December that left her with significant burn scars on her right arm.

As we worked together and experimented with supports, Fines communicated what she did and did not want on her wheelchair. What she really wanted, in fact, were supports that helped her control her body by giving her boundaries. We added things that she has not had before – ankle straps, a bigger pelvic positioning belt and a chest support. By the time we were finished Fines was able to sit calmly and expressed great happiness with her new system. And looked like the lovely 18 year old that she is for her final photo!

Fines today at age 18, a delightful young woman.

Fines today at age 18, a delightful young woman.

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Centro Peyton

We are settled in our new lodging, after arriving in Lima yesterday from Arequipa or the United States, depending upon who you are! Centro Peyton is part of Yancana Huasy and we have eaten many a wonderful meal here. But this is the first time we have actually stayed “in the neighborhood” so to speak.

Centro Peyton is the home of administrative offices and a gathering place for education, conferences and programs. On the second and third floors are dormitory style rooms that typically house university student groups who travel to Yancana Huasy for immersion and service projects. Our group is a bit different in that we have students as well as mature professionals and couples. When our former guesthouse closed Yancana Huasy broached the idea of staying at Peyton and it is a wonderful solution! They found ways to accommodate our mixed group. We have everything we need, and then some plus the opportunity to live in the midst of the community where we are working. This means that we do not go out after dark, and we will walk only in groups when outside during the day because security is an issue.

Centro Peyton is a haven of peace and quiet inside, while a noisy world outside our windows continues round the clock (ear plugs are a great help!) See photos below of Peyton, and some near neighbors to have a sense of where we will be living and working in the coming days.

More of the neighborhood.

The neighborhood a few blocks away.

Peyton is built into the side of an arid mountain, which was incorporated into the design of the building.

Peyton is built into the side of an arid mountain, which was incorporated into the design of the building.

A near neighbor - her cooking the source of the wood smoke we smelled this morning.

A near neighbor – her cooking the source of the wood smoke we smelled this morning.

The garden courtyard around which Centro Peyton is built.

The garden courtyard around which Centro Peyton is built.

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The Past Week in Arequipa

This morning we rose bright and early to leave our hostel in Arequipa at 6:30 am for flights to Lima. It was an intense and productive week at Carmen Alta with several twelve hour work days. The Lions Clubs sponsoring the clinics gave us great support with delicious home cooked lunches each day. Most of the kids and families with whom we worked waited for hours to be seen and in some cases had to leave and return the next day before they were even evaluated – we had difficulty dealing with the numbers and intensity of the needs and these families were so gracious and patient. Following are some memorable stories from the week:

Lisandro (15) has spina bifida and was carried to the clinic by his father, who is raising him alone. He has a wheelchair before but it was a plastic patio chair on a frame with wheels, and it broke. Lisandro was exceedingly shy and initially refused to look at the camera or his therapists. Then we learned that he had never seen “gringos” before! His father, Edgar, gently coaxed and reassured him to allow us close enough to evaluate his wheelchair needs. In the end, Edgar was pleased with the lightweight, streamlined chair that is easy to move around in, and said he thought Lisandro would like it to. At the end he was even willing to look at the camera!

Lisandro in his new wheelchair.

Lisandro in his new wheelchair.

Sharmely is 8 years old and has dystonic cerebral palsy. She arrived carried on her mother’s back in a blanket. We were short on wheelchairs of the type she needed, but had some extra stroller style chairs and found a tilt-in-space frame that was suitable for her needs. We created a much stronger and more supportive seating system for Sharmely and were progressing nicely when I realized that the chair had no brakes! It was a distinctive model that no one in our group had ever used before. Our creative team went to work trying to design brakes that would work, as the clock ticked toward the time when Sharmely had to leave to catch the bus home – 7:30 pm. Suddenly we realized that an identical chair in a different color was in our stash and when we looked – it had brakes! We robbed them and Sharmely was surrounded by a “pit crew” for the final fitting of her chair while brakes were installed at the same time. We heaved a sigh of relief as they left in a taxi to the bus station with the new chair.

Mary Beth working on Sharmely's frame

Mary Beth working on Sharmely’s frame

Sharmely in her chair after  many hours work.

Sharmely in her chair after many hours work.

 

 

 

 

 

Giorghino is 21 but he is the size of a 10 year old. He has microcephaly with serious movement problems and had never had a wheelchair before. He had only one scar from a pressure ulcer – not bad for his age and the intensity of his impairments. Giorghino waited for most of a day and then went home without being seen by our team. He returned the next morning with his aunt – and later his mother  - and spent most of the day in the clinic. We incorporate education in postural care for all the families – a method by which the body shape of people with movement problems can be protected and in some cases, improved. Halfway through the day I did a presentation on the principles of postural care for the families. Prior to the presentation Giorghino’s therapist, Kim, had tried to demonstrate a different way for him to lie comfortably in bed, but he immediately cried and resisted. After the presentation Giorghino’s aunt wanted to try again and he did fine. He left sitting up in a wheelchair instead of being carried in a blanket.

Kim carefully assesses Ghiorghino.

Kim carefully assesses Ghiorghino.

Giorghino ready to leave in his new chair.

Giorghino ready to leave in his new chair.

Maria Jesus is 20 years old and like so many young people with cerebral palsy, has never had a wheelchair or any kind of positioning to help her sit up or to protect her body shape. As a result, her left hip is painfully dislocated and designing a chair that could enable her to sit was a huge challenge that was perfect for Sammie! In our group we have coined a new term – “Sammified” –  for Sammie’s incredible creativity unleashed on a wheelchair! Sammie is not only an occupational therapist with many years of wheelchair seating experience, but she is also a wood sculptor. Her ability to match seating surfaces to unusual body shapes is a tremendous gift to young people like Maria Jesus, as you can see.

Sammie at work for Maria Jesus.

Sammie at work for Maria Jesus.

Maria Jesus in her "Sammified" chair.

Maria Jesus in her “Sammified” chair.

 

 

 

 

 

 

 

 

Leaving Arequipa meant leaving four valuable team members: Jeff and Abby States, a father/daughter team who worked together on the technical end with the wheelchairs, Mary Jo Wagner (occupational therapist) and Martine Ravioli, translator and story collector. We all gathered for a team photo prior to parting after this memorable week. I write this not from Lima, where our team has expanded again with nine people who arrived from the United States last night. Here is the Arequipa team photo of the people who made it possible for 41 children and youth to go home with custom fit wheelchairs, postural care training and new possibilities last week!

The Arequipa team - Eleanore's Project, Equip KIDS and Lions Club.

The Arequipa team – Eleanore’s Project, Equip KIDS and Lions Club.

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