Wanna help???

     Going there and participating in the program made me really want to be part of it. What those people do for the kids is vital and absolutely wonderful. They change those kids' lives. 

    However, the program runs on donations, so I though the best way to help would be to start a fundraiser to help with their constructions in Pérez Zeledón. This new project will enable them to reach and aid more kids in the area, as the infrastructure will be improved immensely. 

    I have been researching the best way to do the fundraiser.  It will most likely be through a website, so it can reach more people. I will post the link here shortly!

Kisses, 

Mariana

Don Esquivel, the donor of the plot of land where the new constructions being built, and us

 

   

The group

     Now that I've told you about all the kids we spent time with, I will talk a bit about the group of professionals who make this program possible with their arduous effort.
     



     As we arrived in their facility in San Jose, Laura was the first one to receive us.  She is very active in the program as the coordinator of the San Jose center.  She is always seeking the kids' happiness and trying to make the atmosphere at the "Albergue"as cheerful as possible without losing it's efficacy.

     Maria de los Angeles, who is the president of the program, is now working twice as much. In addition to the supervision of the "Allbergue" in San Jose, she has been taking care of the constructions of the new facility in Pérez Zeledón. 

     In both regions, the field team of professionals that work with the kids, consists of a psychologist, a nurse and a physician.



     Doutor Irola has studied abroad and is very qualified in the area of Palliative Care (see one of his published papers at http://ajh.sagepub.com/content/27/7/456.full.pdf). He is amazingly calm and assuring to the patients and their families.  Along his classical medical work, he keeps seeking alternative ways to do therapy with he kids, such as art workshops and activities with dogs, which seem to really benefit the children.


    Angelita, the nurse of the Pérez Zeledón facility, is a very happy young woman.  She communicates very well with the kids and their families, and is always smiling and seeking the positive side of things, being incredibly generous and cheerful.  The week after we left, she donated 30 cm of her own hair to a cancer-fighting campaign.  She often drives the truck to the children's houses. Angelita thinks that the process is more complex than simply helping the kids, and she know that help comes from changing some of their habits.  In the Indian tribes, for example, she was the one talking to the parents about the need of taking birth control seriously and to the girls about the need of trying to avoid starting having kids at very early ages.




    Marlene is the group psychologist, andalternates with Angelita on the driving, which certainly is a very tiring and stressing job.  She joined the program after she opened her house's doors to a friend's daughter, who had cancer and passed away shortly after right there in her house.  During that period, her husband and her created such a strong bonding with the girl that she afterwards felt the need to help those in similar conditions.  She wanted to give the affected kids better conditions of living, as she did to that girl.  Marlene is very thankful to the girl for bringing her into the Palliative Care program. 

   Doutora Alejandra is the physician of the group, and she keeps the group's good spirit joking with Angelita all day long.  That joyful facade becomes one of efficiency as soon as she approaches her patients.  She tirelessly interviews the parents and grandparents, patiently explaining the specifics of taking care of their special kid.  And she always ends the day with the same energy she had started it with.  And then she goes home to start her second journey at her house, taking care of her twin daughters!

     Sonia, the secretary of the Pérez Zeledón facility makes sure to keep the Albergue in order while the doctors make the domiciliary visits.  She was very welcoming to us the whole time, making sure all our needs were met.

    The group is much bigger than this, of course, but these are the people we most spent time with the most and made our stay very special. I can only imagine how special they make those kids lives. 

    Every visit we made with them, no matter if they had never seen the family before, it always seemed as if they had had a long lasting relationship with them.  And after that first encounter, they were always able to know each kid individually, even though that is nearly impossible since they help nearly a thousand patients.

On our last night at Perez Zeledon we could again witness the generosity of the Costa Ricans: we were offered a great diner at Angelita's house, prepared with the help of all of them.  We are so grateful to them for making our experience there in Costa Rica so complete.

Kisses,

Mariana

Still on the mountains...

     We felt the generosity of the people again during the second visit.  When we arrived at their house, they had already had lunch but as soon as they found out we hadn't eaten, they insisted on cooking us a homemade meal. 

     While we examined the boy, the women at the house worked together to prepare us a delicious meal.

     J. is 20 years old and has had brain palsy since birth.  Even though each one in the family has stablished roles and duties, they rotate to make sure J. is getting the care he needs and deserves. 

     Scattered through the walls, there were pictures showing the maturing of J.'s siblings through remarkable events.  Of J., however, there were not as many.  It was evident how limited his life has been.

     Shortly after the consultation, we had a late lunch at the house before we headed back to Pérez Zeledón. The journey back was long but with a beautiful view of the hilly countryside.

Kisses, 

Mariana

Another Los Angeles

 

    On our last day, we drove more than 2 hours to the pueblo Los Angeles, which is situated on top of the mountains West of Pérez Zeledón. 

     To find the first boy's house, we had to drive up a very steep and curvy hill, where the car often skidded on the rocks and dirt. 


      When we arrived, we saw that, again, the grandparents were the ones taking care of the kid.  M. is a boy of 14 who has progressive arthritis. 

     If a 4x4 car had a hard time going up the hill, imagine a little boy with that condition doing that at least twice a day.  Because it is so hard to reach their house, the boy had to stop going to school, and barely walks around in the village anymore.

     M. is a handsome boy, and seemed to be well taken care of.  When Alejandra asked him in a scale from 1 to 10, what level of pain he was feeling, he said 1.  His grandmother said that some days he runs around back and forth for a long time before he starts complaining. But unfortunately, his condition is progressive. 

     Even though their house was tidy and clean, we could tell they struggled to make a living. But that didn't prevent them from giving us plátanos on our way out.

Kisses,

Mariana

Indian community, conclusion

    Like so many other families, and certainly not different in the Indian community, A.'s grandmother was the one taking care of him.  She had not taught Spanish to him or to the other kids Spanish, only their dialect.  Only the grandparents and three little kids were at the house.  The parents were off to work.

    A. is a shy little boy who has congenital skin conditions.  If he was being treated at a hospital, it would already have been difficult to take proper care of him, now imagine doing so at a small timber-plank house with no running water, located 3 hours away from the city. The conditions there were far from ideal. The people at Cuidado Paliativo are following him since shortly after his birth.

    That cute little boy seemed to be a little scared of us.  When I gave him toys, he looked at his grandma, with a bewildered expression.  He did not understand what was going on, and my talk in Spanish wasn't helping... Marlene insisted again with the grandmother to teach him Spanish, so he could relate more with people.  Although tradition and culture are very important, the survival of the Indian community there in isolation would be very difficult, an some integration is necessary.

    This was our last visit in the Indian reservation.  We headed back to the long road back to Pérez Zeledón era longo. (see more pictures of our visit below).

Kisses,

Mariana

Back we go!

 Grandma is helping even on the way to school...

Coming back from school.

 Not-so-easy way.

Amigos!

Indian Community, continued...

    When we left the first house on the Indian reservation, it seemed that the whole community had spread the word that we were there.  Finding the second house demanded the help of Mauricio, the father of the first patient, though.  He rode with the Palliative Care car until we reached M.'s house, leading the half-an-hour trip. 

    A small crowd already expected us at the house while the grandmother was taking care of the boy.

    Temperature, heartbeat, oxygenation, and body weight.  Then a lengthy questionnaire about what the boy had been eating and how much, the medicines he had been taking, orientations specifics to his case, to finally schedule the next visit. This was the professional's basic approach, as we had already gotten used to by now.  

    When we were leaving, the kid's mother had heard about our visit and appeared from nowhere, rushing to the house. 

    Another aspect of the Palliative Care staff's work came into play.  The child's mother seemed to be in her late teens, although she could not recall her age,neither could she read.  She was completely bewildered when the nurse Angelita mentioned birth control to her.  

    Cultural barriers became as evident as the need to cross them.

    I had a chance to talk to the psychologist of the group, Marlene, about the difference in culture that they encountered so often and how it affected their work.  How can that relate to Palliative Care? How subtle do they have to be in their messages without losing effectiveness but not bringing antagonism? Isn't that essential to maintaining contact with and therefore be able to help the patients and their families, after all? 

    I could now see that the group has to work together, and make efforts towards building a relationship of trust, not only with the patient and his/her family, but also with the entire community that surrounds them.

    Mauricio, who seemed to be influential in the community, well understood the importance and impact of the professionals' work.  He would share his perceptions throughout the community, assuring that the kids get the care they so well deserve.

Kisses,

Mariana

Forth day!

     We started early to go to the Indian reservations on the border with Panama and visit the patients of the Palliative Care over there.  We took the Carretera Panamericana for three and a half hours before we left it and turned to a rough unpaved road suitable just for a 4x4.

     We lost count of how many times we had to stop at difficult passages of that road (trail would be a better description, maybe) to ponder about the best strategy not to get stuck.  Only after an extra very-shaky one-and-a-half hour have we started seeing the first pueblos, mostly with just a couple of houses each.  

     Then, the routine became familiar again: "Do you know M. Santos?  Do you know where he lives now?" The nurse Angelita has to ask these questions in almost all of their visits, because many of the families move without communicating it to them.  But certainly, they always take all efforts to make sure every kid gets checked once in a while.

   Those questions were again asked to multiple people before we finally reached a wooden house with the expected abuelos and their numerous kids and grandchildren  in the house.

     What was completely unexpected, however, was to find on the lap of the gradma a very healthy looking baby with a tracheostomy and a pediatric colostomy bag on his side.  He was born with cardio-respiratory and intestinal malformations but was doing amazingly well, specially on the conditions he was living in.   By then we had started to get used to not being surprised with how caring these families can be with their special kids and how that care could revert into better living conditions to them.

     All the families we visited had to walk for hours to attend a doctor's appointment, and they had to leave home very early in the morning for that.  The nurses and doctors going to them instead truly made a difference, and enables he parents and grandparents to save the trip to the city just for special occasions (undergo more complicated procedures, for example) and still feel cared for.

    Well, that was the first visit of the day, we still had a couple more kids to visit before heading back!

Kisses, 

Mariana

Something familar to the Indian community!