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.
Friday night was a wonderful social evening hosted by Yancana Huasy as a gift to Eleanore’s Project. We enjoyed typical Peruvian food prepared in the traditional manner and a lovely evening with our colleagues with whom we worked hard all week before walking back to Centro Peyton for our last night.
Thank you banner for us from Yancana Huasy
Margot (social worker), Elizabeth and Sandra (OTs) at the party
The next morning we got up bright and early to be met at 8 am by our hired bus for the all day drive to Nasca. We traveled through a wide variety of scenery after leaving Lima – after the hour and a half it took to leave the huge city. These mototaxis in San Juan de Lurigancho as we were leaving are a small demonstration of the busyness of this place.
Mototaxis jocky for space
Many hours later we arrived in Nasca and got settled in Hotel San Marcelo, where we will live and work this next week. Today we saw some sights, including ancient aquaducts dating back to 500 BC. Only three countries in the world have aquaducts – Italy, China and here, in Peru. We also visited Paredones, the sight of a fort and palace where the Nasca valley was controlled by the Incas after they conquered its inhabitants. This was followed by a visit to the famous Nasca Lines. This evening is some time for relaxation before starting in again tomorrow.
Group shot sitting on the wall at Paredones
The hands – Nasca lines
Today we worked with children from Aynimundo, including a 16 year old young man named Martin. He received a wheelchair in one of our clinics about 5 years ago. Although we did not see the chair, his mother said it had not been adjusted since then.
Team Martin – Brian, Emma, Tamara and Rachel
Martin has a type of cerebral palsy that makes him very stiff and more relaxed alternately. His muscle tone is spastic and he has incredible difficulty controlling his body. The effort to smile or use gestures to communicate just makes it worse.
After assessing Martin and determining that he could not tolerate more typical sitting posture, his therapy team decided to create a unique seat. It had to stabilize him enough so he would not injure his limbs on metal parts or fall out, while allowing him the freedom to move. Throughout the entire process he was consulted to be sure that each change was acceptable and comfortable for him. Although he cannot speak, Martin made his approval or dislike very clear.The finished product had soft seating with “wings” at the sides to protect his legs and arms from becoming caught and injured. Any metal part that could potentially hurt him was covered.
Check out Martin in his very unique wheelchair…we last saw him being pushed through the market outside Yancana Huasy on his way to the bus hired by Aynimundo to transport all the families and wheelchairs home.
Martin with his mother and the team who created his new chair
Last Friday Sammie and I had the pleasure of visiting 4 year old Lucia in her home. Lucia and Roxana, her mother, sat in the front row at the Yancana Huasy conference last week. The very next day we were met with warm hospitality by her mother, Roxana, who loves to sew and is very skilled. We admired the hand sewn sleep system she had created and it was great to hear that she has seen improvement in her Lucia’s body shape since beginning postural care.
Lucia is content when supported in the sleep system her mother made for her.
All that was missing was a wheelchair and today was the big day for Lucia to receive her first wheelchair! She has been using strollers that her family adapted for her. Now she will be using her new wheelchair to go to school! She will be able to lie and sit in healthy posture, 24 hours per day.
Rick, Roxana and me with Lucia in her new wheelchair!
In our wheelchair clinics, we are witness to countless special moments: the first time a parent sees their child sit up independently; the joy of a sibling pushing their sister or brother; the tender way a father holds his daughter while they patiently wait. One of the most exciting events is when we seat a child in a wheelchair and they propel themselves for the very first time.
Watching a child discover that they can propel a wheelchair by themselves is like watching an able-bodied toddler begin to walk without holding onto anything. There’s a tentative beginning followed by increasingly rapid progress as the kid realizes that they can move under their own power, no assistance necessary. Both parents and child know that life will never be the same.
From left: Mayumi’s OT Emma (left), translator Claudia, Mayumi’s father Victor, and wheelchair tech Scott Valentine.
Such was the case today when Mayumi, age 6, came into our clinic. After waiting patiently all morning for her therapist team, Emma and Anna, to customize a chair to her measurements, it was finally time for Mayumi to try out the chair. Almost immediately, she reached down to grab the wheels. After a few hesitant pushes, her father beckoned to her, and Mayumi began to push herself his direction. As she got nearer, he backed up and she quickened her pace to reach him. A group of Eleanore’s Project volunteers watched as she zig-zagged across the floor in triumph until she bumped into a mat table. Without a doubt, this was a highlight of our day.
Mayumi’s team celebrate the completion of her wheelchair. (From left: Anna, Emma, Mayumi, Tim, Alan)
Once you learn, the knowledge always comes back. And so it is every year that we return to Peru. After the initial chaos of sorting through wheelchairs and unpacking boxes, we slip into the simple rhythm of the clinic. A church – emptied out and gifted to us for the week. Mat tables – one for each therapist/student team. Wheelchairs – selected ahead of time, one for each child. Families – eager and anxious to see their child’s new mobility equipment come together, piece by piece. Yancana Huasy – once again, welcoming us into their family. Even though it’s been nearly five years since I was able to join Eleanore’s Project, these things stay the same.
Yesterday, we fit wheelchairs for six kids, one of whom received a wheelchair from us a few years ago. Today, we’ll see another five. The clinic will be ready for them soon, and the Eleanore’s Project family will grow yet again.
Our wheelchair clinic on the first morning, shortly after children and their families arrived for fitting.
Here we are after dinner tonight, 20 strong! Ready to start the clinic tomorrow.
In the Centro Peyton dining hall after dinner
Counterclockwise from left front: Sammie Wakefield, Marcia Marsh, Rick Aldred, Mary Beth Long, Kim Davis, Barb Gilbertson, Emma Steven, Laura Miklautsch, Alan Donaldson, Claudia Moya, Carla Granja, Shelley Hunter, Tim Hunter, Rachel Vander Lee, Erica Buller, Anna Bernard, Scott Valentine, Brian Burkhart, Tamara Kittelson-Aldred, Julian Kittelson-Aldred.
These people hail from California, Ecuador, Minnesota, Montana, New Hampshire, Oklahoma, Tennessee, Virginia, and Quebec! They bring a myriad of skills to Eleanore’s Project and we are so glad to have them.
Yesterday we were able to do two favorite things – sharing training time with our therapy colleagues at Yancana Huasy, and visit the homes of three children we will see in the clinics next week.
I love the Spanish word capacitación, because it speaks to me of building capacity and that is what we are about. Not just doing service ourselves, but building capacity in our Peruvian colleagues and in the occupational therapy students who will join us from St. Catherine University tomorrow. Sammie did the math and between us we have 90 years of experience. It is a joy to share what we have learned with younger generations who can carry it on both in the United States and in Peru.
We focused on measurement of chest symmetry, a highly useful clinical tool for monitoring progress in 24 hour postural care without x-rays. The group practiced on each other, and later in the day Elizabeth Balboa practiced measuring a little girl during one of our home visits. Going forward the Yancana therapists will be able to do measurements and repeat them over time to see how the kids are doing in their postural care programs.
The occupational and physical therapy staff are ready to learn!
Carla interpreted for us and also volunteered for measurement practice!
After lunch we were taken on two home visits. The first family has two girls with severe cerebral palsy, ages 3 and 17; both will receive their first wheelchairs next week. They are using night postural care with sleep systems made for them by their mother. The elder daughter has a very complex body shape with severe chest and rib cage distortions and both hips dislocated – one out the back and one out the front. Even with these problems, her mother says she sleeps better at night since they began using supports. The little sister still has a symmetrical body shape. With 24 hour postural care starting early in her life, there is a good chance that her body will not become distorted like her sister’s. Her mother can have hope for a better quality of life for her little one – and that is a wonderful thing.
Rough terrain on the way to a home visit
Supported in bed so she can grow straight