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.
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)