Our plan for today was to split up. Three of us went to see patients, while the other three stayed in the workshop and finished our plans for new CNC router molds.
Emily, Riley, and Thomas traveled to Fundabiem Escuintla to meet with several families with standers. They traveled with Sergio to follow-up with seven kids. The first family we met with received their stander about four months ago. Jaury is only three and a half years old and has mild cerebral palsy. Before starting therapy with our standing frame, his legs couldn't bear his own weight even with support from his mother. Now, he's able to walk with a little help and can stand on his own! Our stander is a great fit for Jaury as he's able to use it for upwards of two hours a day! He really enjoys his time in the standing frame, which is when he gets to play with his favorite toys and interact with his mother and siblings more easily. Sergio was able to get pertinent information from each patient, which will help us track their progress over the next few years.
Back at Hope Haven, Emory, Trey and Scott traveled to San Lucas to finally get our updated molds done. They found a CNC shop nearby that could make every change we needed! They asked for a great price and should be able to finish the molds within the next few days. The updates to our design should allow Eric to build standers even more efficiently.
To celebrate a successful day, we baked another batch of brownies before heading to sleep.
Our mandate for this Sunday was to conquer Pacaya, one of three active volcanoes in Guatemala. We arrived at the base around mid-morning where we met our guide, Roberto. He took us all the way up to the first peak along the trail at the edge of the treeline. From there, we could see the barren landscape that resulted from the eruption in 2010. Roberto told us about the thundering cascade of rocks and lava that he saw that day. The people had to evacuate their homes and leave their fields. For two years, farmers couldn't plant their crops under the mountain. Now, the fields are strengthened by the minerals that the lava deposited in the soil and the local corn, bean, and coffee harvests are back to normal.
Just below the first peak were several tunnels carved into the igneous rock. The black volcanic rock formed a three-meter-tall opening in the ground, nearly 25 meters deep! The team traveled to the end, facing the darkness head-on. The second tunnel was much taller, nearly five meters high with a few openings in the ceiling. At the far end, there was a smaller opening just the right size to climb through. Scott, Trey, and Riley flung themselves through the fissure. Next, Roberto brought us to a natural oven! We came prepared with hot-dogs and marshmallows and enjoyed our lunch, cooked over flowing lava. After our lunch break, we began our descent. Spearheaded by Roberto, our group swiftly made its way down the mountain. Incredibly, as we passed another group ascending the volcano, Emily was recognized by an acquaintance of hers! She’d worked with him in New York City, and he happened to be climbing Pacaya just as we were passing by and spotted her in the crowd.
Back at the factory, we finished Hercules and got plenty of rest to recover from our long morning.
We expected and planned to visit Antigua today, although we hadn’t figured out how to get there. Yesterday, we decided that would be a problem for this morning.
Somehow, Scott managed to convince Mark, who runs Hope Haven here in Guatemala, to bring us to Antigua early this morning. We were all roused unexpectedly and packed into Mark’s van. On our way, we stopped at a shop to see if there were any interesting cowboy boots. Emily bought a pair of handmade leather shoes, built right in the back of the shop from locally-sourced leather. We made our way into central Antigua a few minutes later, parking just outside a huge open market filled with more handmade goods. Mark brought us to his favorite local joint, Toko Baru. We ate a mixture of Indonesian, Mediterranean, and Central American dishes at a restaurant run by a Dutch man. We shared our most interesting stories with Mark, who enraptured us all with his own accounts of his youth. Our next stop was a hike above the city. Mark brought us up to an overlook of Antigua and even gave us all an in-depth history lesson about Central America and its history in Antigua.
Mark ended his morning chaperoning shift and dropped us off in central Antigua. We waited out the rain in a small restaurant. After waiting much too long, we decided to venture into the town square. Within about 15 minutes of leaving the safety of the restaurant, the downpour began. We found refuge in a nearby Wendy’s for the duration of the rain. Next, we picked up a quick dinner before catching a ride on some chicken buses, the local public transport. The buses got us near the factory quickly, but we did have to walk the last mile home. Back at the factory, we only managed to watch half of Disney’s Hercules before we absolutely had to get to bed.
Today was mostly a travel day. We only met with one patient, Amy, whose family was familiar with our frame. The therapists from Adisa were able to fill out our follow-up form on their own thanks to Sergio’s instruction yesterday. Amy’s mother usually used the stander with Amy, so we decided to teach two other members of her family how to properly stand Amy in the frame. We allowed the Adisa therapists to handle most of this visit, and they showed that they understand exactly what information they need to successfully follow-up with a standing frame user.
After meeting Amy’s family, we set out for Xenacoj. Around four hours into our six hour drive, Scott and Riley ventured into the Guatemala City traffic and managed to snag several Subway sandwiches for everyone. We made it back safely and quickly headed to sleep.
After a comfortable rest at Casa Myrna, we made our way over to Adisa Jocotán at 8:00. We met with each family that came to follow-up in phases. First, the parents would meet with Sergio and a few Adisa physical therapists who were learning how to apply our standardized follow-up forms. Next, they met with Riley and Emory who taught a second group of physical therapists how to properly place and remove a child into and from the standing frame, emphasizing certain things like unfolding the stander so that it lays flat on the ground. Afterward, Emily and Thomas conducted a few short interviews to find out what the stander has meant for each family and how it has improved their child’s daily life.
The last patient we saw today was Alan, who received one of our standing frames about two years ago when Scott, Riley, and Emily traveled to his home. Emily and Thomas interviewed Alan's mother after checking up on his stander, and she demonstrated her deepest gratitude for the change our frame has affected in her family’s daily life. While Alan hasn’t improved as much as other patients due to his specific condition, the frame has relieved his family of a lot of stress. With the frame, Alan is able to comfortably be on his own for more than just a few minutes, providing much-needed respite for his hard-working mother. Before the frame, in order to keep an eye on Alan, she rarely was able to leave the house, but now she’s able to leave him with his favorite toys, especially his radio, and take the time she needs to herself as his caretaker. Alan's most notable improvement, in fact, is his ability to handle objects. He now has several favorite toys and is more attentive, specifically when listening to his favorite songs on the radio.
After a long morning meeting with patients, we took a swim in some springs to relax. The team, including Sergio and Eric, unwound in the natural hot springs before heading back to Casa Myrna for dinner and rest.
We began today with an early breakfast. Today was our last morning with Scott Sr. and Jan, who will fly back home to Maine tomorrow afternoon. We said our goodbyes before loading our belongings and bodies into the van. We greatly appreciate all the work and support Mr. and Mrs. Mitchell have put into Stand With Me these past two weeks. Around 7:30, we set out for Chiquimula with Sergio and Eric. We arrived at our destination at 2:30, picking up two Adisa workers along the way.
In Chiquimula, we met with three families in a classroom just down the road from Adisa Chiquimula's physical therapy center. Oskar, Manuel, and Angel brought their standers with them. Despite being almost two years old, all three standers were in excellent condition. Emily, Thomas, and Trey met with each family to discuss their child's progress and story. All three children improved in mobility and strength, now able to crawl on their own, draw, and feed themselves while in the stander. Sergio and the therapists from Adisa used our new standardized forms to gather more information about each child's improvement, experience with our stander, and goals for future treatment.
We traveled to Jocotán and posted up in a local hotel. After telling a few supposedly-scary stories on the roof, we headed to bed to rest before a busy day following up with more families.
Some of the team was anxious to get started today, so Emory and Riley ran a workout session with Scott and Emily joining them. They got out on the roof at 5:45 and met with the rest of the team for breakfast about an hour later. This morning, Scott and Scott Sr. met with Hope Haven to better outline and define the relationship between Stand With Me and Hope Haven, streamlining the sharing of resources and materials between organizations. The rest of the team worked on finding and applying for grants. We contacted several other organizations involved in funding medical non-profits like Stand With Me. Intermittently, we worked on creating modifications to the stander and the template we’re currently using in order to make our construction process even more efficient.
Around two o’clock this afternoon, we visited two patients’ homes to follow up with our standers. Our first visit was to Darline, Stand With Me’s first recipient of a standing frame in Guatemala. She demonstrated incredible progress, obliterating her original prognosis. Two years ago, no physical therapist who saw her believed she’d ever be able to walk. Today, she was able to walk with barely any help. She’s been able to help her mother around the house, as she can stand on her own with minimal support. She improved from a 5 on the Gross Motor Function Classification System to a 3! The picture below describes each level of the GMFCS. Her therapy has been a huge success, and we think she’ll be able to make great use of a walker to further improve her mobility. Our second visit was to José. We were checking up on him to make sure he was on track with the therapy he required before beginning to use our stander, and he should be able to start this Thursday! We're excited to hear back from José and his family to learn about his progress.
After some late-night preparation, we turned in to rest before our day of travel tomorrow. We'll be in Chiquimula until Friday evening, visiting patients and families.
Back at Hope Haven, we got to deliver another few standing frames. In total, eight patients came with their physical therapists. Only three patients needed to be fit for standing frames today, while the rest were here for a follow-up! We got some insightful information from them; two of the follow-up patients brought their frames that they'd been using for over a year, which are still in fantastic condition! We learned that our frames hold up even better than expected, hardly wearing down even after 14 months. Our proudest moment was meeting Jaquelin, who is learning how to walk thanks to her therapy with our stander! A year ago, when she received her stander, she couldn't bear her own weight on her legs. Today, she was able to walk short distances and even jump up and down! We are all so grateful to have met her; she is proof that our standing frame design can truly improve somebody's life in a meaningful, impactful way. The ability to stand or walk gives new perspectives and control to a child, and we're all ecstatic to be able to provide that to children who otherwise might not have that power.
After completing the deliveries, Trey and Scott worked with Sergio and other physical therapists to revise and improve our follow-up and intake forms. They used the information we gathered from patients today to tailor our data collection toward efficient, pertinent information. We made a few changes to our forms for therapists and families in order to better understand under what conditions the stander is being used, for what purposes or goals, and how effectively it meets those goals.
After a few brownies, the team hit the hay. Tomorrow, we’re looking forward to visiting patients in their homes in Xenacoj!
Sunday morning came late for some of us, but Emory, Riley, Jan, and Scott Sr. started the day around sunrise. Emory and Riley explored more of the town during the early morning while Scott Sr. and Jan went on a beautiful bird watching trip! Their guide was able to distinguish between species based on sound alone and entertained and educated his guests for three and a half hours. Scott Sr. and Jan saw 28 different species! Coincidentally, the entire team met in the hotel lobby for breakfast at the same time. From there, we split up into groups again to revisit our favorite shops. Thomas and Trey bought handmade blankets for their dorm rooms at Kent this coming year, while Scott bought a carving of a crab for his brother! Emory, Riley, Scott, and the interns all bought matching pants, as well.
In the afternoon, the team descended to the lake. Emory, Riley, Trey, and Scott tried out some diving boards before Emily and Thomas joined them and Scott Sr. in the water. After drying off, the team eventually set out to find dinner. On the way, we found Dick! He recommended a restaurant to us and joined us for dinner. The group briefly lost Trey in the developing rainstorm, but Scott braved the weather in search of the birthday-boy and they rejoined us just in time for dinner.
Our trip back to Hope Haven went smoothly and only took about two and a half hours. This time, we went the correct way and followed a fully-finished road, bereft of bumps.
This morning we met for breakfast before diving into the markets. We planned our day around what Dr. Cheff wanted to see and do, as she left this afternoon. We spent most of our morning browsing through the street-side shops, admiring the hand-made fabrics and works of art. Our main adventure was our trip onto the lake. We toured the northern coast of Lake Atitlán aboard a tour boat, where Scott and Riley took photos and danced with other passengers. Emory had a different idea of a good time and decided to captain the boat himself. When the usual captain of the vessel was told “Yo soy el capitán ahorita!” he kindly left the controls to Emory, who gracefully piloted the boat back to the boarding area.
Later this afternoon, we said our goodbyes to Dr. Cheff and welcomed Emily Donaldson back to the team. In the evening, we all went out to dinner together and formulated plans to celebrate Trey’s 18th birthday! We decided the only way to celebrate would be to return to our favorite pie locale for an entire lemon meringue pie! We feasted on our dessert before exploring more of the town at night for a few more hours. We met some locals and a group from Ohio who were happy to hear that Trey was celebrating his 18th in Panajachel!