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.
This morning the team participated in their first delivery to standing frame users. Twelve families arrived to pick up their frames, and each child was fit into their device by our team and Hope Haven’s physical therapists. We began to fit patients at around 8:30 this morning and were busy with them until around 1 o’clock. Some families traveled as much as 12 hours to pick up their standing frame! Throughout the fitting process and until about four o’clock, Dr. Cheff, Jan, and Thomas continued to manage the open clinic. They treated 26 patients today, more than double yesterday’s count! The patients included residents of Xenacoj and families who came to pick up their standers.
In the workshop, the team is finalizing the manual. They’re working on gathering photos of each part of the construction, assembly, and usage of the stander. In the process of documenting each part that makes up the stander, the team found new parts from local vendors at less than half the cost that we previously paid! We’re making strides in reducing the cost of the stander, which will make it easier for us to reach more and more children in need.
Our first weekday was a busy one. After meeting with the Hope Haven staff and sharing a morning prayer, Dr. Cheff, Jan, and Thomas opened the clinic for the first time. They treated 11 patients in total today, including factory workers, their families, and residents of Xenacoj. Jan managed incoming patients, while Thomas and Dr. Cheff worked directly with patients. The workshop team, comprised of Riley, Emory and Scott Sr., welcomed Trey to the workshop today as they improved and updated our standing frame design and production process. They made several strides today in cost reduction and are planning on updating some tools with Riley’s new library of CAD drawings and designs. Riley and Scott updated Erick, our Shop Technician at the Hope Haven workshop, on new ideas they’ve had since they were last in the workshop. We’re hopeful that these new improvements will boost our production and help us reach even more children who need standing frames!
In the evening, we all pitched in to prepare for our conference on Thursday. We worked together to create forms for physical therapists to fill out to gather more information and data on our standers after our patients receive them. Tomorrow, we’ll be able to communicate directly with patients and their families to refine the information we gather. We’re looking forward to delivering standers to eleven families tomorrow morning and continuing to run our clinic!
The team welcomed a delayed start to our last day of preparation before the full fury of a busy work week sets in tomorrow. We briefly met at breakfast to outline our tasks for the day before separating into our groups. Riley, Emory, and Scott Sr. worked on cataloging and documenting the Stand With Me workshop. Their goal is to provide a model for new workshops to emulate what we’ve built here in Guatemala. Thomas and Trey worked on the digital face of Stand With Me in the form of the website and our various methods of communication with our donors and followers. Jan and Dr. Cheff, meanwhile, prepared for the open, free clinic we will be running throughout this week here at the Hope Haven factory. Scott managed to help every one of us in some fashion, although he spent the majority of the morning chipping away at the workshop guide with his father, Riley, and Emory.
In the afternoon, we visited Xenacoj again. This time, our destination was the church “Jesús, El Buen Pastor” where we danced along to a typical Sunday service. At about three hours long, the service was an emotional release for all in attendance. The pastors delivered moving sermons on the Word of God and danced and sang along with the in-house band and choir. Each parishioner seemed to experience intense emotion in some way; for some it was grief, yet for others the dance, song, and sermon were elating. At the service, we even came across Darline, Stand With Me’s first recipient of a standing frame made in Guatemala back in 2015. Scott and his mother, Jan, held and danced along with Darline and her family. After the service, we visited several food kiosks in the center of Xenacoj to try local food. A few “borritos de pollo” and “bananas fritas” later, we headed back to the factory to rest.
We began our first full day with an unexpected early start at sunrise. Riley and Scott expertly prepared scrambled eggs for the group before our first morning meeting, wherein we laid out our plans for this week. Scott explained how we will go about hosting a conference with 30 physical therapists this Thursday, our plan for updating and streamlining the production process for the standers, and our goals for expanding the project in the future. After our breakfast, we moved on to learning about the resources we have already available to us and those that we will be developing to bring Stand With Me to new heights.
After a detail-packed morning, we began getting to know the area and traveled to the nearby town of Xenacoj! There, we visited the local markets and bought locally-grown lychee, watermelon, and pineapple. We spoke to some locals about their farms and businesses, learning about the crops they plant and the land around us. We also traveled to San Lucas to pick up some supplies for the week. At dinner in San Lucas, we even bumped into some acquaintances of Dr. Cheff from Bangor! Back at the factory, we watched the transformational film “Brother Bear” while snacking on Riley’s famous brownies before turning in. Tomorrow, we plan on returning to Xenacoj to attend a church service and preparing for the busy week ahead.