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!
Today, we began a little later than usual in order to recover from yesterday’s busy day and to prepare for some light travel to Lake Atitlán. Our morning went smoothly, helping Hope Haven fit several patients into wheelchairs and standing frames! Dick, an American physical therapist who now resides in Guatemala, helped the Stand With Me guys modify and fit standers to several patients. We ended up giving out six standers today! Next, we convened for lunch and planned our shortened afternoon and our trip to Panajachel, a popular town on the lakefront.
Before setting out for the lake, we reviewed some fundraising information for the project and discussed our ideas for the future of the project at Kent School and teaming up with other, similar programs in Central America. Around 4 o’clock we boarded our van. Scott Sr. bravely brought us to our destination, testing the limits of his passengers, our vehicle, and even the roads themselves. We unfortunately ran into some slow-moving traffic in Chimaltenango which delayed our arrival by several hours. While waiting in traffic, Scott, Riley, Emory, and Trey ventured into the town. They scouted ahead and managed to find a restaurant that served takeout! They returned to the van food-in-hand and fed our party of eight as we trudged through the traffic.
Eventually, we turned off the Pan-American Highway into the department of Sololá. Unfamiliar with the route, we traveled down some apparently-unfinished roads littered with potholes and low-visibility speed bumps. Scott Sr. handled the van expertly, as if it were designed for difficult conditions, all the while retelling and reciting famous Mitchell family jokes and songs. After nearly six hours of driving, we arrived in good spirits, ready for a stationary, bump-less bed, and some local pie. We stayed at Hotel Kakchiquel, right on the lakefront, and returned to our beds only after tasting some local lemon meringue.
Quote of the day: "BumpBumpBumpBump!"
Our late-night preparation paid off. Today we held our conference with 33 physical therapists to teach them how to properly use our standing frame. Scott kicked off the meeting by introducing the Stand With Me team and its history and explaining the goals of our convention. Next, Dr. Cheff, with Thomas translating, outlined cerebral palsy, the complications it can bring forth, and the main treatment goals that physical therapists should aim for. Her concise explanation helped some of the less-experienced physical therapists and health workers better understand how children with CP are affected by it.
Next, Sergio, a Hope Haven physical therapist, went over the standers themselves. He discussed the three different types of standers, their usage and treatment applications. After Sergio, Patricia Duff, our guest speaker, spoke about the psychological effects and benefits of therapeutic devices like our pediatric standing frame. She explored the need for effective communication in children who can’t speak or write, stressing that they need a voice as well. In her presentation, she described several ways to communicate with children who can’t speak or write, such as tracking their eyes to interpret responses to questions or using printed pictures to allow the child to formulate ideas and basic sentences. Ilse gave her presentation next, describing the treatment plan for a patient in a stander and how to apply to receive a stander from Stand With Me. During the lunch break, our visitors toured the factory to see our workshop and facilities. Afterward, four families arrived who agreed to allow us to demonstrate the fitting process to the therapists. Scott, Thomas, Ilse, and Sergio each led a group of therapists. All four families gracious enough to allow us to demonstrate with their child received standing frames, and the therapists learned how to properly handle a patient in a Stand With Me standing frame.
By 4 o’clock, all four frames had been delivered and every therapist had been given their certificate of completion of our training course. To celebrate a successful day, the team traveled to Xenacoj one last time before they would depart for the weekend. They met some locals who were associated with Hope Haven in their former work and tried even more delicious local food. An early turn-in compensated for last night’s late-night preparations, but the success of the day was well worth it.
Today was our last official day of our clinic. Dr. Cheff, Thomas, and Jan treated about 20 patients today. Some of the patients were families receiving standers, of which there were 8 today. The clinic ran efficiently, with each team member having a specific task. Dr. Cheff and Thomas sat with patients to diagnose and treat them. Thomas used his Spanish-speaking skills to translate for Dr. Cheff, who used her 28-years’ medical experience running a family clinic in Oldtown, Maine to treat each of our patients. Jan interacted with and managed the patients in the waiting room. As they arrived, she would take down their name and place them in line to see Dr. Cheff. Jan’s Spanish-speaking ability has improved dramatically by speaking with incoming patients; she went from only being able to say a few words to carrying a basic conversation in just three days! Dr. Cheff and Thomas worked together to effectively communicate with, diagnose, and treat every patient. Their ailments ranged from simple, musculoskeletal pain caused by hard work to respiratory issues in children who would receive standing frames. The clinic was a great success, as we were able to help over 50 people by providing pertinent information and treatment!
The rest of the team continued to work in the workshop in the morning before heading to Guatemala City to look for new sources for parts. In the city, they located a CNC factory that will create an updated template that will save on materials and time. Our current templates are slightly outdated in relation to the design we use and require the technician to move and reset its position in order to create the layout we need, but the new version will be fully up to date. Another leap in cost efficiency will be the new hinges the team found in Guatemala City. The new hinges go for 30 quetzales less than the previous hinges! Overall, we reduced the cost of each stander by nearly $5!
Tomorrow, we’ll be hosting a conference for nearly 40 physical therapists who receive and give out our standing frames. Emory, Thomas, and Trey were in the workshop late, brainstorming case-by-case modifications that families or therapists could make to the standers. Scott and Riley joined them for some late-night preparation to ensure that the morning goes as smoothly as possible.