Finishing up in Peru

Friday was our last day at Yancana Huasy until next year, although their staff will continue the good work throughout 2019. Five people were scheduled, one local man and four children from a provincial area three hours away. The families all traveled together and got up at 2:30 am to arrive by 8 am. They participate fully in the program that Yancana Huasy has established, involving 24 hour posture management and returning every 6 months for follow-up visits. The day was made more challenging by a power outage on our side of the building. But not to worry, Rufino was creative in getting sufficient power to keep our essential tools going!

With daylight through windows, and extra long extension cords our team kept going!
The final group photo for 2019 – Yancana Huasy, Eleanore’s Project and St. Kate’s OT students all together!

Centro Patricio Peyton is a community center associated with Yancana Huasy, and is our “home away from home” while we do our work here. We stay in the third floor residential area. Centro Peyton is a lively place! As I write there is a choir rehearsing for a concert tonight, volleyball practice on the sports court, traditional dancing class happening close to where I sit, and various other music lessons. During the weekday evenings yoga, tai chi, and aerobics occur as well.

Centro Peyton from the inner courtyard, third floor at dusk. Residential rooms are on top with 2 brightly lit floors below.

During our stay we are provided with delicious Peruvian home cooked meals. The cooks contract with Centro Peyton and over the years have gotten to know us and appreciate our work. They cater to us in wonderful, loving ways, asking our preferences and making our favorite Peruvian dishes. We are so grateful to them for taking care of us and making us feel at home!

Our last breakfast together this morning, with our friends the cooks. Tonight we all head home in different directions to our regular lives. It feels a bit like ending summer camp!

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Hola Todos – from our 2019 OT students

Thursday was our fourth day and our week is coming to a close. Over this past week we have learned valuable information from OT professionals, ATP technicians, and the families of children who we have been fortunate to work with. Thursday posed some complex cases, but we felt more prepared to take on the challenge and fit the children appropriately in their wheelchairs.

Hayley in action with the drill

Emily and Megan at the sewing station

Kyla and his dad work on the wheelchair for a sweet boy named Jesus

Emily and Kara prepare a wheelchair for its new owner

These are the top 32 things we have learned in the past 32 hours of work.
1. Respecting the different culture and viewpoints when providing care
2. Understanding that we are here to support the sustainability of this program
3. How to move an axle on a wheelchair to make it easier to self-propel
4. How to assemble and disassemble a Kid Chair
5. How to change casters
6. How to customize a back rest
7. Always buy Pringles
8. Foam in Place
9. How to use a hot knife
10. The multiple uses of a turkey carver
11. How to take wheelchair parts that do not belong together and make them work
12. How to use an interpreter properly
13. How to educate parents on how to care for the wheelchair and 24-hour postural care
14. Different saw blades for different materials, wood versus metal
15. How to countersink
16. How to sew small, medium, and large wheelchair accessories
17. How to complete a mat assessment
18. How to properly measure the child to make adjustments on a wheelchair
19. How to utilize limited resources
20. Don’t forget your water when you brush your teeth
21. Integrating specific Spanish phrases to more effectively communicate with other therapists and families
22. The importance of rest breaks
23. Interpersonal communication
24. Collaboration across all professionals
25. Spray glue is cool and has many uses
26. How to make chest straps
27. Knowing what questions are important to ask about occupations and wheelchairs
28. Look at the ability instead of the disability
29. Understanding the importance of professional volunteer perspectives
30. Importance of parental views
31. Being comfortable with being uncomfortable
32. Elevate your feet at night


The six of us have learned so much more than this list, but the practical information that we have learned will continue to help us in our future careers.

Emily D, Emily H, Megan, Hayley, Kara, & Kyla
The St. Kate’s OT Students

**33. Do not feed the birds

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Teamwork – it takes a village

The St. Catherine University occupational therapy students have hit the ground running! Everyone pitches in, students and professionals alike, to get the job done.

Hayley and Kara move back canes forward on a wheelchair frame.
Andy, Mary Beth and OT students Emily H and Emily D work concurrently to get the job done.
Megan and Kyla work on a creative frame project
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Monday, with the team doubled

The rest of our group arrived over the weekend – everyone who is coming is now here, including six occupational therapy students from St. Catherine University.

The whole group after Sunday night supper, before our team meeting

And now, meet Juan. He is a delightful 15 year old who remembered Sammie and Tamara from a past wheelchair fitting. Juan has really tight hamstring muscles – the big muscle that crosses both the hip and the knee joint. This means that he cannot straighten out his legs when he lies down, and in order to sit tall he must have his feet tucked under him a bit.

When Juan lies on his back his legs fall to one side because they can’t straighten out. Over time this is hard on his hips and his spine.

Today Juan and his parents learned about this dynamic with assistance from Hammie, our new teaching tool. Hammie is a simplified anatomical model that can demonstrate posture problems related to tight hamstring and hip flexor muscles in sitting and lying.

Hammie and Juan stretch out together on the mat

We had a chat with Juan about learning to sleep a new way at night, to help stretch out his legs and keep his back straight – he is a clever guy and agreed to work with his parents on this. We were able to refurbish his tilt in space wheelchair with new seating and a bunch of adjustments, and sent him on his way with his parents looking great!

Juan looking good in his wheelchair, refurbished to work well for him awhile longer.
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The importance of follow-up

Yesterday was wheelchair follow-up day at Yancana Huasy – their follow-up clinic happens every Friday and for the first time we saw them in action. The process of procuring a new wheelchair at Yancana Huasy includes parents (or users) signing an agreement – they look after the wheelchair well, use night and day therapeutic positioning, and return every 6 months for follow-up. This is where growth adjustments, repairs and determination of whether a replacement wheelchair is necessary takes place. Regular follow-up is crucial in responsible wheelchair provision – they require care and maintenance like any technology, and kids outgrow wheelchairs like they do clothes. Several therapists staff the clinic and Rufino is on hand for repairs or replacement parts as needed. Check out the scene yesterday!

Working on a seat cushion while its owner waits in the background.
Lowering a footplate to accommodate growth.

Meanwhile, Sammie and Tamara had the pleasure of working with Lucia and her family, whom we had met a few years ago. A different kind of follow-up because we are always interested to see how kids we know from past visits are doing now. They arrived with Lucia and her sleep system in tow! We decided that Lucia wins the prize for a beautiful sleep system, with custom covers made by her creative mother, Roxana. Lucia’s chest symmetry was measured in October and then again more recently – we are happy to report that her measurements improved in just a few months! Her parents are committed to following through and if they do, Lucia can look forward to a well-aligned body as she grows.

Roxana made the sand bags and velcro straps for her upper body, and made a custom cover for the foam lower body support fabricated by Elizabeth, her OT.
Lucia in her new wheelchair – same style as last time but bigger to accommodate her height. This one will grow with her for the next few years.
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Making stuff

What do you do when you have a wheelchair frame that is sound, but the seating system is worn out/wrong size/poorly configured/ lacks features that your person needs? And you can’t just order up a replacement?

You make stuff! Check out what some of us made today for a darling little girl named Dara…

Thank you Motion Concepts! For donating wonderful foam seat cushions including some huge ones that can be used to create back cushions for small girls.
And another Motion Concepts seat cushion, trimmed to a smaller size to fit Dara.
When you have a metal bracket that is not what you want, change it!
Our high tech spray booth!

Of course the best part is seeing the final results. With new back and seat covers, a new belt, chest harness and head support Dara was ready to try her new chair.

Dara waiting to try her new chair!

The goal reached – Dara in her wheelchair and ready to go home!
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Saving Noemi’s shoulders

It is not typical to be concerned about shoulder overuse injuries in a child. For most of us such problems occur much further down the road in our adult lives. But it is different if you are an active young girl with a wheelchair for legs, like 5 year old Noemi who worked with us today.

Noemi is a busy girl with spina bifida, for whom freedom means a wheelchair. She was, her family thought, getting around just fine in the wheelchair she already had. At first they were not excited about getting a different one – how could it be any better? We hoped we could raise their expectations of what an appropriate wheelchair for Noemi could look like!

Noemi sitting in her old wheelchair, next to the proposed new one.

Alan, the therapist working with her took the lead but most of us got involved in one way or another during the day. Here is Alan with Noemi showing how much easier she can reach the wheels without hurting her shoulders from propelling her wheelchair all the time. After all, she has only one pair and they need to last her a lifetime!

We cannot upload videos here but wow – once Noemi got going it was priceless to see her fly, and turn herself in circles saying “whee”! When we wanted a photo of her sitting in her old wheelchair after she had the new one she started to cry…that says a lot. Needless to say everyone was happy with the change.

It is a rite of childhood – turning in circles until you feel dizzy. Here is Noemi doing it!

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Yarsi gets a wheelchair

Yesterday was productive as we spent it unpacking and organizing our wheelchair clinic workspace. “We” is now Alan Donaldson, Mary Beth Long, April Pate, Laura Miklautsch and Rick Aldred – who joined Sammie and Tamara over the weekend. With everything set up and ready to go, we had the fun of working with three wonderful kids today and Yarsi was one of them.

Yarsi is 6 years old and spent most of the day with us as we completed a very special wheelchair for her. Her most common expression was smiling, and when asked if she is always like this her mother’s response was “she’s a good girl”. During the day Yarsi had all kinds of experiences while waiting for her wheelchair to be made just right. Noemi the speech therapist worked with her on swallowing and made plans to introduce alternative and augmentative communication. She had a reunion with Stonehill College students who worked with her family two years ago. Elizabeth (OT) made Yarsi a special foam leg rest for when she is lying down and she loved playing bubbles with Laura. Toward the end of the day Yarsi’s body symmetry was measured by Elizabeth (OT) and Sandra (PT), who are practicing this skill after learning it from Tamara. These measurements provided valuable information for Yarsi’s night and day postural care plan. She was a star the whole time.

Yarsi was so patient while Tamara, Sandra and Elizabeth discussed measurements.

When she finally got to sit in her new chair Yarsi was all smiles! With good support she can sit well and see everything and with her tray she will be able to touch and play with things – a special request from her mother. Not only that, but with good positioning outside of her wheelchair Yarsi’s body can stay in good shape as she grows.

Completing a wheelchair for Yarsi was a group effort and here are the folks who did it – surrounding the star of the show!

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The Yancana Huasy team in Camana

During this week the Yancana Huasy team from Lima provided high level wheelchair services in Camana. This trip involved delivery and fitting of wheelchairs for kids who were evaluated last fall. Much of the work was highly complex, and the results were wonderful. Check out the photos!

Rufino has amazing skills; he can make or fix just about anything!

 

Traveling to Camana from Lima – a long trip.

Education is crucial – how to use and care for the wheelchair for the best benefit.

A happy result – the first wheelchair for a complex client!

Creating a custom foam-in-place back support – everyone has a role to play.

The finished custom back support in use.

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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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