The absence of posts for the last few days has been related to exhaustion! The first part of the week was very intense, with extremely complicated children and young people who, in all cases, had never before had a wheelchair with proper seating of their own. We are replacing many white plastic wheelchairs that are shipped into Peru by the thousands, because these kids cannot sit in them. Dislocated hips and severe scoliosis abound, and complicate the seating process because of the special adaptations required to accommodate and support uniquely shaped bodies. In some cases this has required an entire day to complete one chair.
At home in the United States, the fitting process would be accelerated because the equipment would have been ordered to suit and adaptations easier to accomplish. Here, we have done our best to bring the wheelchair frames and seating materials we believe are most appropriate but it is difficult to predict everything. Especially in cases where we were not sent photos in advance, as happened with one new center we served on Tuesday. That was the night we worked past 8:30 at night. We are also short on rehab techs, with only one experienced person on the team for our first week in Lima. We have great general volunteers and students who have been learning everything they can from him, but it is still a challenge considering that we had four techs with us last year!
So…highlights of the week:
Day 2, Tuesday March 15 – CEMPDIS is a new community based rehabilitation (CBR) program in Lima, who referred 9 children and youth for wheelchairs. This is our first time working with them and because of communication glitches, the measurements we received were inaccurate and photos non-existent until last week in the warehouse. We were glad to be able to provide good seating and wheelchairs for these kids but it was probably our hardest day. The results were good, and the kids and families were happy, but we were exhausted!
Day 3, Wednesday March 16 – Aynimundo brought 9 kids to the clinic for new chairs. We worked with Aynimundo (another CBR program) for the first time in 2009 and it was good to connect again. Because the previous two days were extremely long, we told them up front that we might not complete everyone that day. In fact, we did better than I expected – 6 children went home with their chairs, 2 left without chairs that needed completion, and only one girl had to return on Friday. The Aynimundo team was great – they jumped in and worked with us enthusiastically, learning a lot about the chairs in the process. We always try to involve parents and local professional as much as possible, since they are here for the long term and we are not.
Several kids in this group had potential to propel their own wheelchairs actively. I brought them in early so we could do their chairs and give them the rest of the day to wheel around and practice skills taught to them by Eleanore’s Project and Yancana Huasy team members. We were all won over by a little boy named Angel who wants to play basketball now that he has a wheelchair!
Day 4, Thursday March 17 – For me this day began with a meeting at the National Institute Maternity Hospital, a government facility where 30,000 babies of high risk pregnancies from around the country are born each year. The meeting was arranged by our colleagues Rossanna Rivas (healthcare planner/economist) and Luis Vilcahuaman (biomedical engineer) of the CENGETS Technopol at PUCP (Pontifical Universidad Catolica Peru). The purpose – to discuss early intervention for the 80 per 1,000 babies discharged from the hospital who have cerebral palsy and other complications.
I described the complicated situations we see in children and youth with disabilities, and made the case for early positioning and seating strategies as a means of addressing some of these problems. Dr. Portello is using telemedicine to develop expertise in four regional hospitals outside Lima, and was quite interested in pursuing further discussions. With PUCP to follow through, this could be the beginning of something good. We met our PUCP colleagues in 2008 because of our common interest in promoting manufacture of a variety of good wheelchairs in Peru.
The rest of the day passed quickly as we worked with Yancana Huasy kids including 2 girls who never even made it in the door on Monday. I hate the rare occasions when families wait for an entire day and we never even get started, but that is what happened to Rosa and Betzy on Monday so they were priorities when they returned on Thursday. Several kids also came in for consultations and in some cases we determined that they did not need new wheelchairs, only adjustments. Our colleagues here in Lima are great, but are still learning how to adjust some backrests and so on to accommodate growing children rather than putting them in a bigger chair.
Day 5, Friday March 18 – We worked with one Aynimundo girl and a bunch of Yancana Huasy kids. Carolyn had opportunity to fit a beautiful little girl named Tania with a beautiful little donated TiLite wheelchair that she brought with her on the plane from Halifax! We are still not sure how she managed to get it through customs without paying taxes but we are glad she did. I worked with twin girls, born 2 months early at the maternity hospital mentioned earlier. We chose the same chair for both girls to make it easier for their mother to learn the mechanisms, but adapted the chairs differently. Other kids took much more work to create unique seating system for their unique bodies but at the end of the day the results were good.
Partway through the morning I met with Yancana Huasy administrators about a new collaboration between us. Thanks to a generous donation secured by Sammie Wakefield, we are contracting with Yancana Huasy for manufacture of positioning components to be used in next years wheelchair clinics. Chest harnesses, abductors, seat belts, trays and foot straps will be fabricated by workers with disabilities and parents, modeled after prototypes and using materials available in Lima. These are items that we run out of every year and this is another step toward local production of seating supports that are necessary for children with motor disabilities. We also discussed a possible pilot project of building a collapsible special needs stroller, that would make it easier to parents to transport their kids. Many taxi drivers and buses refuse to stop for families with bulky wheelchairs.
In the afternoon we said goodbye to Steve Fox, who was a huge asset to our team all week. He not only worked hard himself but did a great job of teaching others on our team. After many years of working with Sunrise Medical wheelchairs, I learned several new tricks from Steve! We finished the day at a restaurant with a huge buffet of Peruvian specialties, toasting the week of collaboration between Yancana Huasy and Eleanore’s Project, and the children we served together.
Look for a slide show to be posted soon. Now, on to Arequipa!