Our 2018 OT student cohort shares stories

Please enjoy this post from our students, accompanied by photos of them working with our professional team members!

The “big picture” from a second floor balcony

Hola from Lima!

We’re the ten occupational therapy students from St. Catherine University who are partnering with Eleanore’s Project this week. Today has been our third day with the project, and we feel like we have already learned so much! It’s been great to be mentored by veteran occupational therapists and assistive technology professionals and to get hands-on experience in such a beautiful setting.

Alan and students work on a frame

Today, we partnered with some amazing families to help position their kids in both night positioning systems and wheelchairs. We want to share some of these stories with you.

One teenage boy received his second Eleanore’s Project chair today. He received his first chair through Eleanore’s Project 9 years ago. Three years ago, he grew out of it and received a non-customized chair in his community many hours away from Lima. Last year his mother found us on the internet through the sticker on his outgrown chair. She brought him to Yancana Huasy in Lima to get new customized wheelchair because he experienced so much success from the first one. After being fully fit for the chair, his mom expressed her gratitude. She said that for the past 3 years, she was unable to bring her son out of the house because the standard chair was inaccessible in the mountainous region where they live. Now with the new chair, she is hoping that he will be able to go out to the community with her and will be able to move around the house with her as well. She seemed so excited that he would no longer be lonely but could spend time with people. His laugh could be heard throughout the clinic after being placed in his chair and being rolled around the room. She also went home with new knowledge about night positioning that will help her son stay in good shape!

Sewing straps, cushion covers and so on is often part of the process

Another child received his first chair today! He was a toddler who spent his time either lying down or being held by his mother. If he was sitting down, he was seated in a car seat. He would use all of his energy just to maintain his position and would cry all the time. When he got into the chair for the first time, you could see the transformation. He was calm and seemed immediately comfortable. His mom expressed gratitude to the Eleanore’s Project team. She explained that she always felt that she had bad luck, but with this chair, she felt blessed. She could envision the changes it would make for her family. Instead of the child always being held, he could face his family and friends and could actually play!

A third girl from today had very complex needs. This was her first chair ever. She was in pain every time someone would touch or move her until she knew that they were going to stop moving her. After lots of trial and error with custom seating and nighttime positioning, we were finally able to craft a chair where she did not express pain or tears. This was a huge accomplishment! It was incredible to see both the before and after.

By the end of the week students have learned a lot about “wheelchair wrenching”

Overall, this has been an amazing experience for our team! Our OT mentors have pointed out that seating a child all in one day isn’t something that can be experienced in the states.  At home the process typically takes months. The insight that our mentors have offered and the difference this project makes in the kids’ lives is truly a once-in-a-lifetime opportunity that we will never forget!

 

St. Kate’s OT Students, 2018

 

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Chairs are for moving!

Today we worked with children from Cebe Duato, a special education school in another part of Lima. Families from the school came to Yancana Huasy together with the occupational therapist from the school, who has been learning about wheelchairs and posture management, and will be monitoring the children’s wheelchairs.

When the Cebe Duato kids were finished there was time for a two more Yancana Huasy kids to be called in to receive their wheelchairs a bit earlier than was planned. Whether they moved themselves with their feet, one hand, two hands or were pushed, the kids today were ready to move. Check out Cesar, below!

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Busy days with happy results

What does a day in the Eleanore’s Project/Yancana Huasy wheelchair clinic look like?

We have 7 am breakfast at Centro Peyton, where we live while working at Yancana Huasy. Rufino arrives by 8 am to take the first van load to work, a ten minute ride. With 24 people it takes two trips to ferry all of us.

When we arrive at least some of the kids we will see are waiting with their parents. After the parent group meeting that begins the day, Rick checks them all in with name tags, “before” documentation photos, signing of photo/video releases and so on. Mat tables are set up in Our Lord of Hope parish sanctuary, using backless benches pushed together with therapy mats topping them. From Monday morning to Friday afternoon, the church space is devoted to wheelchairs. Each therapist or therapist team has a mat table where they work with their child of the day, beginning with a mat evaluation.

Sayuri is in the midst of the wheelchair fitting process with Elizabeth (OT) and Sandara (PT).

Mat evaluation assesses joint range of motion, strength, mobility and balance, posture problems and more while learning about the child and family’s environment, needs and goals. The therapist determines whether the wheelchair assigned to the child will work well; if not, it is time to go shopping among the extra wheelchairs in storage. We do our best with referrals but kids grow, needs change, and we gain more information in person than from afar.

Searching for the right wheelchair accessory

With six mat tables going you can imagine there is a lot going on! Wheelchair frames are being modified, foam cushions built and covers sewn in the workshop that is usually an auditorium for the church. Lunch time comes at 1 pm, when we take a break and so do the families – often they have brought food with them and feed their kids while we go upstairs to a delicious lunch prepared for us by the cooks at Centro Peyton.

Audrey and Chloe (OT students) work on wheelchair frame modifications

 

 

 

 

Daniella and Hannah (OT student) share a moment

 

 

Daniella and Jose Luis are neighborhood friends, Today they rode in a taxi together and both received new wheelchairs!

 

 

 

 

 

 

 

The afternoon flies by. Occasionally a wheelchair has been completed or nearly so before lunchtime, but most of the time intense work is happening in order to finish chairs by the end of the day. More often than we would like, those days extend into evening. Rick is taking “after” documentation photos, Yancana Huasy paperwork is being reviewed and signed and the end of the day is in sight. Happy kids, parents and the teams who created their wheelchairs take photos together. Finally Rufino drives us “home” to Centro Peyton where another good meal awaits. And the next day we do it again.

Sayuri’s chair is finished and she poses with her team!

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Lia Gets Her First Wheelchair!

Lia is 3 years old and just received her first wheelchair yesterday. The process began months ago when her mother, Doris, took the first step and requested a wheelchair for her daughter at Yancana Huasy.

Even when she was awake, Lia could not sit well in her stroller.

Lia was seen by an occupational therapist who took measurements, assessed her posture and obtained information about her developmental and medical history. This evaluation was sent to us in the United States to help us select a good wheelchair for Lia. Doris also agreed to attend required classes. There she learned about basic wheelchair seating, parts, and care, and night-time therapeutic positioning. Sleeping in a well-aligned position at night can protect Lia from secondary complications like dislocated joints and scoliosis as she grows bigger. This can often be done with simple household materials.

Finally the big day arrived! Doris met with other parents of kids getting wheelchairs and a psychologist, to discuss emotions and adjustments to life with disabilities. She and Lia together with three other families then proceeded to mat tables arranged for them with materials to provide postural support. Now came a bit of a test – everyone was asked to position their children using principles they had learned in the night positioning workshop. While everyone had attended a class, most had not yet had individual tutoring and this was their chance. Elizabeth, the occupational therapist who taught the workshop, went from mat to mat, checking positioning, tweaking and giving advice. If kids needed a specially carved foam leg pillow to support their lower limbs she created it for them during the day.

Lia relaxing in a supported lying position while her mother sings and plays with her. A comfy waiting place!

At last Lia and Doris could see the wheelchair that traveled from the United States to Peru with Lia’s name on it – only she had grown a lot! It was too small and not the best style for her. It is hard to get it right from a long distance! Not to worry, there are always extras so we found something just right – a Hope Haven Kid Chair that provides plenty of postural support and gives the option for Lia to begin learning about mobility by reaching and moving the wheels.

After several more measurements and re-fittings Lia’s wheelchair was done! She loved the tray on which she can now play with toys. Doris reviewed and signed paperwork with Elizabeth; a contract stating that she will care for the wheelchair, use 24 hour posture management with Lia, and return every 6 months for a follow-up appointment. In fact she left with the first appointment already scheduled.

Playing with toys is so much easier with a tray!

Lia and her wheelchair team.

 

 

 

 

 

 

Time to go home – but how to transport the wheelchair?  Lia and Doris rode off to their home with the beautiful new wheelchair tied safely on the back of a mototaxi. A fun end to a big day for a 3 year old!

Taking Lia’s wheelchair home!

 

 

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Posture, wheelchairs and AAC

We worked with kids today – a challenging and rewarding time but a long day. After a parent group session led by a psychologist, families were asked to demonstrate how they position their children for sleeping at night. They had all attended classes on therapeutic positioning but for many of them this was a sort of “test” as Elizabeth, the OT observed them. She then spent time coaching each family, working through individual issues.  Only then did we begin evaluating them for their wheelchairs.

Parents implement what they learned in a therapeutic positioning workshop at Yancana Huasy.

The second floor perspective.

 

 

 

 

 

 

 

 

 

The workshop was a busy place starting out the day!

Our workshop became a busy place as therapists assessed the wheelchairs set aside for kids after assessing the kids themselves. We try our best to send an appropriate wheelchair frame for each child. But given the infinite variety of kids, growth rates, conditions and needs we do not know about until we meet them – what we brought for them may or may not work. Confirming that the wheelchair frame will work for a child is the first step; after that the seating system (seat and back cushions and other posture supports) can be worked through.

And why do we work so hard to make a seating system that works for kids? So they can do stuff! Over the years we have been privileged to see children who move themselves in a wheelchair, feed themselves or simply eat while not being held in a parent’s arms. Promoting alternative and augmentative communication strategies for kids who are non-speaking is a part of Eleanore’s Project mission that has been dormant for the last few years. But it came alive again today when we offered Geraldine symbols for “yes” and “no” on her tray. Heavy duty cardboard angles, a magic marker, packing tape lamination and she was good to go.

Geraldine and her mother exchange glances across her tray, which supports yes/no symbols.

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Friends Arrive and Preparing for Kids

For the last week there were just three of us – Sammie, Vania (interpreter) and Tamara. Over the weekend our team grew by seven people for a total of ten. We are small but powerful and will work together all week, until we expand next weekend. We are: Rick Aldred, Alan Donaldson (OT), Maren Nelson (OT), Trish Toole (OT), Scott Valentine (tech), Ed Looby (tech), and Michelle Nicolalde (interpreter). We arrived this morning to an assembly for the first day of school at Yancana Huasy. The wheelchair kids are all ready for school as the Yancana therapists assessed and fit their wheelchairs a couple weeks ago.

Our spray glue hood, strategically placed below a window for ventilation

Sammie and Trish confer over a sewing project

 

 

 

 

 

 

We spent today unpacking materials and assembling wheelchairs in preparations for seeing kids beginning tomorrow. By lunchtime the parish auditorium had been transformed into a wheelchair workshop, complete with two sewing machines, power and manual tools, foam and tools to cut it, and a “hood” to contain spray glue fumes and splatters. After lunch we identified the wheelchairs assigned to the children we will see this week, unboxed and mostly assembled them. This is harder than it may sound, as we searched through large boxes that in some cases were stacked so the name labels were not visible. Wouldn’t you know – several were way at the back or the bottom of a stack but in the end we found them all. And shoving boxes around is good exercise!

Maren and Ed assemble a Kid Chair

We left in good time today and look forward to seeing kids and families in the wheelchair clinic tomorrow.

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The Arrival!

Anticipation was high when we arrived at Yancana Huasy this morning at 11:15. The truck hauling a trailer with our wheelchair filled container was on the way! Police came to handle any possible conflicts with disgruntled drivers or others when the avenue was blocked by the huge truck. We waited for first sight of the truck through traffic as our friend Rufino guided the driver after he got lost finding our location.

Waiting for word on the truck

Breaking the container seal – sealed since January in South Dakota.

 

 

 

 

 

 

 

 

 

At last it arrived. I felt so excited to see the safe arrival of equipment and materials that are so precious to those awaiting them! A cadre of parents waited to unload and carry the boxed wheelchairs and accessories through the market safely to their destination. The families of kids receiving wheelchairs through Yancana Huasy are very involved; in addition to attending education on wheelchairs, 24 hour posture care and other topics, they volunteer time to clean and prepare storage space. And today, unloaded and moved boxed wheelchairs and other materials as we sorted them. What an amazing team of families and Yancana Huasy staff!

Strong women

Everything is in!

 

 

 

 

 

 

 

It took 35 minutes to completely unload the truck. Preliminary sorting has taken place and everything is safe inside Yancana Huasy and Our Lord of Hope Parish (where their large space will become a wheelchair clinic next week). We are tired but happy, and gratified that everything went so well. By Sunday there will be 10 of us here to work the first week. We will spend Monday assembling wheelchairs and setting up the workshop space, then work with kids starting Tuesday. It’s all good.

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Changing schedules and capacity building

Our schedule keeps changing as we await our shipping container from customs. It was originally expected to be available yesterday; but our bills of lading (important, negotiable, original documents) took a circuitous DHL courier route to Peru. They should have arrived on Tuesday, February 27. Instead, they were found in Cincinnati, Ohio on Friday, March 2 and arrived here on Monday, March 5 – almost a week late. Our shipping agent has never known this to happen before!

Matching wheelchair frame types to individual needs. Never one type fits all!

Meanwhile, today was education day for the professionals at Yancana Huasy. The occupational and physical therapists, technician and a speech therapist attended as we discussed posture and positioning for children with disabilities, and matching wheelchair frame styles to individual evaluation results.

We expected to unload wheelchairs from the container this afternoon but it did not happen. There have been false alarms – first the container was arriving at 2 pm, then 6:30 -7 PM, now it is changed to late morning tomorrow. It will be quite a production as the truck with the container will block traffic on the main avenue by Yancana Huasy while we unload it. Stay tuned for tomorrow’s report on that adventure!

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Climbing Mountains in Lima

Hiking is fun, but the climbing we did today was entirely different as we made home visits to see Yancana Huasy families. And what if the hiking involved carrying a child on your back not just for fun, but because it was the only way to travel?

Today we rode as far as possible with Rufino in the Yancana Huasy van, with Elizabeth (OT), Sandra (PT) and Margot (social worker). When we could go no further we began to walk up the mountain, on cement steps, until they ended in a dirt path that took us to our destination.

Beginning the climb

Many more steps after these, followed by a path.

Almost there

 

 

 

 

 

 

 

 

Entrance/exit way to the home

 

 

 

 

 

 

 

 

It was the home of an 11 year old girl whose mother carries her, on her back, up and down the mountain when she leaves home. Obviously leaving home is a lot of work for her mother, who has two other children as well, so it does not happen often. She receives home therapy once per week with a Yancana therapist. Because her mother has embraced the value of 24 hour posture care she is benefiting from therapeutic positioning throughout the day and night.

As we climbed up and down we saw positive signs of development in addition to the steps – installation of water and sewer lines is happening! We are told that neighborhoods on the mountainside begin without such benefits but over time the city provides them. Today we saw men hard at work bringing these amenities to the families whose homes cling to the mountainside.

Workers installing water system

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Happy Birthday Eleanore!

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

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