Our high tech spray glue hood.
Yesterday was our last clinic day at Yancana Huasy, and we needed to clear out our space in the church so they could prepare to use it for the weekend. This meant finishing work by 4 pm to start packing up. Several kids will have their wheelchairs completed next week by the Yancana Huasy team, who will continue to fit many more wheelchairs in the coming weeks.
A typical scene in the wheelchair workshop where fabrication takes place.
Stefany hangs out with volunteers in her postural care arrangement.
After the packing we had a wonderful night out at Kasa Mama, a traditional Peruvian buffet, celebrating a week of hard work and lots of personal and professional growth for all of us.
This morning we head south to Nasca, a 7 hour drive counting the lunch stop in Canete. There will be time to rest, re-group and view the famous Nasca Lines before we start another round of education and clinics with Equip KIDS and their partners, the Lions Club.
Ed is looking forward to saying goodbye to the flight of 18 steps he has ascended to our lodging at Hostal El Caminante every night!
We are fortunate to have some volunteer students translating for us. Several days this week we have had two students from St. Edward’s University in Austin, Texas. They are on a three week service trip to Peru. These wonderful young women interact well with the families and children that come to our clinic. One of the women, Jordan, had some extra nail polish, and when I suggested that the young girls waiting for their wheelchairs to be finished might appreciate getting their nails painted, Jordan lit up.
One beneficiary of their efforts was Stefany, a nine year old girl with significant needs and an engaging smile.
Students Jordan and Christina with Stephany.
Stephany showing her painted fingernails.
Today our team member Chie had a birthday. Barb, the faculty advisor had one earlier in the week. We decided that it would be fun to have a birthday cake for both of them. I hatched a plan with our Peruvian friend Margot. She went out and purchased a beautiful chocolate cake complete with cherries and candles. We kept it a surprise until our lunch time – about 1:30. At that point, we got the cake out to everyone’s surprise. Chie blew out the candles. We sang “Happy Birthday” in English and in Castellano, the Spanish spoken in Peru. Then our Peruvian friends insisted that their custom was that the birthday person have a bite of the cake before cutting it, “La mordida”. Below is a picture of Chie taking a bite of the cake!
Chie bites her cake
Happy Birthday Chie!
With many complicated children and therefore complex wheelchairs, it was a long and exhausting day. Our wonderful Spanish speaking OT/ATP, Betsy, is putting in long training hours with the Peruvian therapists. Here are a few photos of the day…
Kelsey (OT student) and Ana (Yancana Huasy OT) work together to modify a wheelchair frame
Tiny Jose Antonio, whom we visited at home last week, received his first wheelchair – here being pushed by his brother.
All bundled up and ready to leave at the end of a long day.
At the end of the day we had the fun of seeing a tiny boy, age two, experience the freedom of moving on his own for the first time. Pedro arrived early this morning, and it took all day to complete his chair. He required a very special back support that was constructed from scratch and other modifications. By late afternoon he was the only child left. While he had been placed in and out of his wheelchair numerous times for various fittings, he had not propelled it yet.
It was after 6 pm by the time the last stitches were made in his back cushion cover and the last piece of velcro was in place. At last Pedro was able to sit in his wheelchair, and with encouragement from everyone began to move on his own!
Our team member Ed is a wheelchair rider himself. It was a wonderful sight to see Pedro’s eyes light up as he began to follow Ed and then play “bumper cars” with him! And the eyes of Pedro’s mother were lit up as well – with joy. What a fine way to end the day.
Ed and Pedro having fun together
Today we were greeted by a banner welcoming us to this week of work at Yancana Huasy. The first day of clinics is usually challenging as we unpack and organize materials, tools and wheelchair accessories. Today was no different.
Welcome banner at Yancana Huasy
All of the children who attended today were from CEMDIS, and under the age of 6 years. At that age and stage parents are discovering their child’s unique combination of challenges and capabilities. One such little girl named Juliette surprised her mother today. Laura was entertaining her with a musical toy as she was lying well supported on her back while Pam and Karissa worked on her wheelchair. As Laura held the toy within her reach, Juliette reached out with her fisted hand and pushed the button to play the music. Her mother had never seen Juliette do anything like this before and was astonished as she watched her daughter repeatedly play the music by hitting the button! Today Juliette and her mother both learned something new about her capabilities.
Juliette surprised her mother today!
Nearly everyone has arrived in Lima, some quite late and with tales to tell about flight delays. One person arrives tonight and then our Lima team will be complete. Here is the list of these great folks and where they come from:
April Pate – Minnesota
Laura Miklautsch – Montana
Ed Looby – Washington
Betsy Burgos – Florida
Pam Richardson – Alberta
Kim Davis – New Hampshire
Sammie Wakefield – New Hampshire
Scott Valentine – New Hampshire
Barb Gilbertson – Minnesota
Kelsey Noah – Minnesota
Karissa Hanson – Minnesota
Chie Yang – Minnesota
Natalie Williamson – Minnesota
Mary Beth Long – Tennessee
Our group still gathered around the table after breakfast this morning.
We left our lodging early on Friday morning to spend the day at Aynimundo, not knowing what to expect. They have invited us to visit for several years, but the scheduling has never allowed. This year we committed to Friday and had a wonderful time.
In the morning we made home visits to see 3 families who are involved with Aynimundo. The first child we met was a tiny 12 year old who is primarily cared for by his older brother. He has never sat and was not even able to bend at his hips because of extremely high muscle tone and contractures. After 9 months of work with Aynimundo therapists and follow through by his brother, this little guy now is able to bend enough to make sitting in the wheelchair he will receive next week possible. We will need to be very careful in seating him, because he is so very thin and will be at risk for developing pressure ulcers. We hope that he will be able to eat more easily and gain weight once he is supported in a sitting position for meals.
A tiny 12 year old practicing lying with bent hips and knees in preparation for getting a wheelchair.
At the next home we saw Wilmer and Kael, two brothers with the same genetic diagnosis. Their wonderful mother opens the home to several other kids with disabilities in the neighborhood so that the Aynimundo therapist can see them during one trip. They both received wheelchairs last year and were familiar to us, but they had grown and needed adjustments to their chairs.
Sammie adjusts Wilmer’s pelvic belt.
Finally, we went to the home of a young man with a spinal cord injury, who we learned had been admitted to hospital with serious pressure ulcers. His mother and all of us traveled to see him. He has struggled to find meaning in life with no role models of active people with spinal cord injuries from whom he could learn. We are hoping he will gain strength and health sufficient to see us next year for an appropriate wheelchair to protect him from further injury, give him mobility and independence.
Access to the home of a 24 year old man with paraplegia.
After the active morning out and about we enjoyed a wonderful lunch in celebration of the birthday of Veronica, director of Aynimundo, before spending the afternoon observing and consulting during therapy sessions. It was a great end to a good week!
Veronica’s birthday lunch, surrounded by the Aynimundo team.
Today we spent the morning doing home visits with Yancana Huasy therapists, meeting kids and families who will attend the wheelchair clinic next week. The particular interest was in postural care for these young people, who are all at risk for problems like scoliosis and hip dislocation or already have those complications. Many families live high on the hillsides in homes that are accessed only by trails or in better situations, by long staircases. Today we climbed such a stairs to reach Martel’s home. Somehow his mother carries Martel, age 25 with complex cerebral palsy, up and down these steps.
Beginning the ascent to Martel’s house
Entering Martel’s home
Later we visited David, a great fan who loves to watch any sports, especially boxing, on the family TV! His parents are working on postural care with him to help keep his hips from dislocating.
David’s mother demonstrates how she uses a stabilizer to support his legs at night
Tomorrow we are visiting Aynimundo, to wrap up the week!
Each year we share an education day with our colleagues at Yancana Huasy, and for the third year today’s focus was on Postural Care. The Clayton/Goldsmith Approach to 24 hour postural care was developed over the last 30 years in England, by Liz and John Goldsmith and Sarah Clayton. Through understanding the effects of gravity and asymmetrical positioning on the human body, therapeutic support can be applied to protect and improve a person’s body shape. This is wonderful news for children with motor disabilities who are at great risk for developing complications like scoliosis and hip dislocation, because in many cases these can be avoided or limited with proper postural care.
Isabel and Edward analyze the finer points of their colleague’s lying posture
Today we began with a workshop for 13 occupational and physical therapists. Plenty of time for practice and discussion of potential issues filled the morning. The afternoon brought 10 families with their children to learn about postural care.
Camila looks relaxed in her night-time postural care set-up.
Tamara started the session but soon gave it over to Elizabeth Balboa, OT, who did a wonderful job of explaining the concepts and engaging the parents.
Some of the parents and children waiting for the session to start.