Lima

    Puerto Maldonado

A view from the top

Today we had a wonderful rest day with a special jungle canopy excursion. Rick, Sammie, Kate, Leslie and three of our Lion’s Club hosts traveled by boat for 45 minutes to reach a trail into the jungle. There we walked to a 40 meter high tower from which 6 hanging bridges took us through the canopy. It was magical, and even the light looked green by the time it reached us on the jungle floor. Those sounds we associate with movies set in the jungle? They are real, we heard them.

Our guide, Geraldine, answered all our questions and more. We saw a hummingbird (solid black!), other birds for which we have no names, termite nests high on the trees, lizards and an armadillo hole. Also “garlic” trees whose woods juices are used to repel mosquitoes and bad spirits. It was all fascinating and definitely felt as if we were in a different world. At the end of the excursion we went to the boat for a relaxing ride back to Puerto Maldonado.

Leslie, Kate, Tamara and Sammie just off the boat

Later this evening we shared a bottle of wine on the porch and enjoyed the beautiful sunset before heading out for our final dinner in Puerto Maldonado. This morning we parted ways with Kim, Rachael, Laura and Mary Jo who flew to Lima and on home tonight. Tomorrow the rest of us leave on three different flights – Kate and the students to fly on home. Sammie, Rick and I will remain one more night in Lima to visit friends and participate in meetings on Monday, prior to our flights home on Monday night.

On Tuesday night they appeared at our hotel in the big rain storm, having heard that we are here and in hopes that we might be able to help Ranoldo even though he was not signed up to receive a wheelchair. Wednesday morning they came again and watched through the windows as we worked with other kids – but we did not expect to have anything for Ranoldo.

Fast forward to Friday morning. A child who was to have received a Kid Kart a few days ago never came, so Ranoldo’s mother was called and told that there was a wheelchair for him! She arrived and called her husband, a mototaxi driver, to join her. They spoke of going to church every day this week to pray for a wheelchair for Ranoldo, and asked for any and all information we could share with them to support his development. So Ranoldo got everything we had to offer! A night-time postural care plan to address his scoliosis, handouts on feeding and body mechanics for lifting him, and demonstration of therapy techniques to help him develop head and trunk control and weightbearing through his knees, hips, shoulders and elbows.

Ranoldo, his parents and Angelica (Lions Club) as they were ready to leave

At the end of the morning Ranoldo was ready for a nap and went on his way with his parents, and we were left with admiration for this persistent and committed mother and father.

And as a sequel, after attending a parent meeting on Friday afternoon, they asked for a follow-up therapy visit for more ideas on how to work with Ranoldo! The time is set for 9 am, Sunday morning before the last of our team leaves for Lima.

The 2012 cohort of occupational therapy students from St. Catherine University.

Hola amigos! On Thursday in Puerto Maldonado, the Eleanore’s Project team was able to provide support to ten different individuals and their families. We wanted to share one story from today about an individual named Aldo.

Aldo is a 17 year-old who has been diagnosed with cerebral palsy and epilepsy. He arrived with his grandparents to receive his first specialized wheelchair. Previously he was seated in a handcrafted wheelchair consisting of a plastic lawn chair attached to bicycle wheels that was inappropriately supporting his body. After a full day and a half of work, he looked great in his chair, and we could see that it was worth all of the time and effort that was put into it. His grandfather repeatedly told us how much he loved the chair and how beautiful it was, saying that, “he is now supported; he is no longer sitting on air”. His grandfather was referring to the lack of support that the plastic chair provided, and how comfortable he now looked in his new seating system. As students we also noticed increased participation using his arms, eyes, and hands. As you can see in the photo below, his eyes are glowing, and he was all smiles.

Aldo's face expressed pure joy in his new, customized wheelchair

As students we have been blessed to be a part of this project. We have had the opportunity to gain skills and experiences that would take years to obtain in the states, and the ability to work with professionals who are experts in their field and wonderful teachers. Most of us came here with little knowledge of how to use a sewing machine, or even what an allen wrench and a ratchet were. But now, at the end of our second week, we feel comfortable evaluating a client, offering suggestions to the team about their needs, and adjusting the wheelchair accordingly. As students of occupational therapy, we feel that this experience as a whole is the epitomy of what OT is all about: adapting and being open to ambiguity, thinking on our feet, using available resources, establishing rapport, understanding client and family individuality, teamwork, and helping people take part in meaningful occupations. This hands-on and creative experience teaches us more than a classroom ever could, and has provided us with relationships and knowledge that we will carry with us for years to come.

Ciao!
Brittany, Kristin, Hayley, Allison, Leslie, Cassie, and Theresa

Rio Tambopata as seen from the wheelchair clinic area

Today we seemed to hit our stride in Puerto Maldonado, being more familiar with the space and set up. Our work space at the Don Carlo Hotel has a beautiful view of the Tambopata River, part of the headwaters of the Amazon River. The building is tropical style construction with open windows and metal roofs, but our rooms have screens and air conditioning. I am not usually a fan of AC but here, after working long days in the heat and humidity I am grateful for the coolness in which to sleep.

We can see boats on the river, homes of regular folks, and there is a plethora of motorcycles and mototaxis but relatively few cars. At the moment we are in hour two of a huge rain storm complete with thunder and lightening. January, February and March are the rainy months in this part of Peru, and while the rain cools everything down, it also brings everyone to a standstill. As I write this at 7:15 p.m., a mother and her son are downstairs waiting to go home with his new wheelchair. The taxis are not responding to calls, and so they wait.

This week we are working with Equip KIDS and their new partner, the Lions Club of Madre de Dios. The Lions Club has made a commitment to facilitating long term follow-up for the wheelchairs in this area, including creation of a developmental center in Puerto Maldonado. This would be a wonderful addition in this area which is lacking in services for individuals with disabilities. Only the most basic of folding and “lawn chair” wheelchairs have been available in Puerto Maldonado until now and we are glad to be part of this big step forward for people with mobility impairments.

Diego enjoyed playing with a toy computer while sitting upright in his wheelchair

Today we worked with a wide variety of children and teenagers. Diego (age 5 with spina bifida) goes to a regular school for kindergarten but got around by crawling until today. He had never had a wheelchair before but by the time his ultra light chair was fit for him he was ready to roll. Diego’s left side is weaker than his right and at first he was awkward in propelling the chair. But after one hour of practice we could see him using his left side more than he was before and expect his continued improvement with mobility as motivation.

Mitzi is 15 years old and spent the entire day with us while a very special chair was created for her by a large team of people. I also spent time with her and her mother developing a postural care plan for positioning while she sleeps. At the end of the day she and her mother went home in a mototaxi. I watched as her wheelchair was carried down the 17 step entrance to the hotel. As it was lashed onto the back of a mototaxi I ran inside to ask Rick to take a photo. We all agreed that it is easier to transport a wheelchair this way than by disassembling the chair and putting it into a regular taxi – as long as it is not raining!

Mitzi and her mother observe as Mitzi's wheelchair is readied for the ride home.

Mitzi's chair is ready for the trip home - lashed to the back of a mototaxi

Seika (right) with Kristin, one of the St. Kate's OT students

Today we had one of those rare privileges that sometimes come our way on an Eleanore’s Project expedition. We got to see someone move themselves for the very first time.

Seika is a very bright and willful 15 year old young woman who got her first wheelchair ever today. She was able to propel it by herself.

We who are able bodied so take for granted the freedom that self propulsion gives us. We can choose to go there now. Or not, as we please. Seika was given that opportunity for the first time today. It was such a joy to see the look on her face – to watch her very carefully not go where others wanted her to and to see her determination to explore new places that were previously off limits to her. I tried to get video of her, but for some reason, my camera did not get it. Rats! All I have is a picture of her running away from me, and somehow, that is as fitting a picture of Seika as one could have.

Chris tries out the new Featherweight 221 donated to the Yancana Huasy OT department

After packing we took a photo of the full team, then went to our guesthouse to clean up before our traditional Eleanore’s Project/Yancana Huasy team dinner party. At our favorite buffet of Peruvian food we enjoyed each others company as a group for the last time this year. Rick, Sammie and I will be at Yancana Huasy again on April 2 before we return home, but for everyone else this was goodbye. We were all pretty exhausted after a long but satisfying week.

The entire team after a week of work together

I am writing this now from the jungle – where Puerto Maldonado is located. Scattered over three airlines and 4 different itineraries we all made our way here today. Landing in the midst of the jungle was an amazing sight, described by Laura as “a sea of giant broccoli”! We all started our malaria medicine a few days ago and with mosquito repellent in hand (this is also a dengue fever area) we are ready for the coming week. Our clinic will be set up here at the Don Carlos Hotel, starting Monday – but we are all looking forward to a well-earned day off tomorrow! Before starting the new week, we will post a slide show of Yancana Huasy highlights.

The children today ranged in age from two years to teenage. Maximo, age 2, was my first kiddo of the day. I was greatly touched by his mother’s story as she described his preterm birth following an in-utero infection, and first several months in hospital. Elizabeth is a great mom, very practical and shared her experiences with loss of friendships and family support because of her son’s disabilities. We shared many common experiences and feelings despite our differences in language, culture and age. Maximo has never learned to sit, being accustomed to lying stiffly when he is not being held. He had lots of tone and was he strong! But he was also a social little guy who was full of smiles.

Maximo in Tamara's arms flirting with Brittany

Maximo was not keen on bending at his hips and knees but we talked about the importance of his learning to tolerate bending, and he looked great in his Kid Kart once it was fitted to him. Elizabeth said she was looking forward to taking him all over in the chair, including to his father’s soccer games!

Maximo in his new Kid Kart

Sammie spent all day working with Greysy, a lovely young lady whose twin brother, like her, was born deaf. However he does not have cerebral palsy as she does. Greysy had never before had a wheelchair that she could tolerate sitting in, despite her parent’s efforts. They had bought her a “clinical wheelchair” which is a basic folding wheelchair, and had tried to make some adaptations. Creating a wheelchair for Greysy was an all day project but the result was beautiful and everyone went home happy!

Greysy and her mother leave the wheelchair clinic on Thursday night after a long day of wheelchair fitting.

Toward the end of the day we said goodbye to team member Rosa, a native of Lima who now lives in Florida. She has been a huge asset to our work for the last four days as a translator. Translating is hard work, and we so appreciate all that she did! She says she will be back with us next year and we hope so. Thank you Rossy!

The final adventure of the day took place on the way home. Perhaps ten minutes from our guesthouse, the van developed a flat tire. With Rufino at the wheel we were all safe, but in Lima traffic there was no place to stop and the van had no spare tire anyway. Rufino drove slowly to our guesthouse and we arrived safely. Most of the group went up to dinner; I made a sandwich for Rufino and then Sammie, Kate, Rick and I stayed to watch over the van as he took off the tire, flagged down a taxi, took it to a service station for air, flagged down another taxi and arrived back with the tire. He put the tire back on in record time and was on his way but it was late after a long day.

By the time they arrived it was time for the Tuesday returnees to arrive as well and we still had kids going from the morning (three wheelchairs took all day to complete). Then another child from yesterday came unexpectedly with his mother needing changes because of problems they discovered overnight. Soon chaos reigned, with people, chairs and tools  everywhere and we were swamped.

I sent one child home, because he had grown, the wheelchair frame we set aside was too small for him, and I could not find a bigger one although I know we have one. Remember those boxes from the warehouse? They are still the bane of my existance, because the majority of the wheelchairs are in them and extras we did not use from the first two days were put back in the boxes so they are not easily accessible. I do hate those boxes.

Jackie's old chair had enough growth room for her, but needed lots of adjustments to make it work.

But on a positive note, today I was given the gift of working with Jaqui. Jacqui helped me teach the first Yancana Huasy wheelchair evaluation/seating class in 2008, and shortly afterward received her first wheelchair with foam-in-place molded seating at age 11. In 2010 she had grown and it was replaced. This year she arrived on Tuesday with no chair and reports that she had outgrown it. Somehow we could not lay our hands on the frame intended for Jaqui, and I questioned whether she had outgrown the frame or just the seating. Her mother agreed to bring her back for Wednesday clinic and sure enough – the frame was just fine but she needed a new seating system. It is hard for me to believe but Jaqui is almost 18 years old now.

Rachael our wonderful tech and Theresa, the OT student who is shadowing her this week worked hard to repair a brake problem, made frame adjustments and generally spiffed it up. After re-evaluating Jaqui we created a new molded back cushion to support and accommodate her kyphosis (severely rounded back) and found a new style head support that worked well. A custom made cover for the new back was fabricated by Sammie and Hayley, the OT student working with me this week. The whole process took many hours, requiring Jaqui, her mother and little sister Alesandra to hang out with us all day. But the result was worth it and made us all happy.

After some adjustments, updates and fixes, Jaqui's chair fit her again.

Brian came to us for a chair a few years ago, but it was stolen when his family had nowhere to store it securely overnight.

Sammie and I remembered Bryan from the past, and were surprised to see him slumped in a folding wheelchair with no postural support. His scoliosis looked worse. I asked some questions, and learned that what happened was robbery. Bryan’s family was living in rented quarters with no room to keep the wheelchair safe, so when not in use it was left downstairs until one day it disappeared. This is not as unusual as you might think – over the years we have learned that wheelchairs can be a lucrative commodity when people need money and other people with money need wheelchairs.

Bryan spent most of the day with Kim and at the end of it he looked so much more comfortable in his new tilt in space wheelchair! And his family has moved to different housing where there is a secure place to keep this wheelchair safe for Bryan to use.

Brian in his new wheelchair that supports and aligns his body properly.