Cadanino Guatemala 2009 What we are doing- Update!!

The ministry that we have started is called, “CadaNino” which generally means each child. We chose the name because we believe that God values and loves each and every child. We believe that every child is worthy and needs individualized love and attention. CadaNino is the US based organization that supports our work here in Guatemala at the government run residential center, “Centro Residencial Neurologico y Psiqiuiatrico” or CRPN. Currently, Cadanino has retained a physical therapist and two nurses aides to work physical therapies with the children of the center.

CRPN- is owned and operated by the Guatemalan Government. Their version of human services, Bienestar Social, is the operating entity that funds and manages CRPN and several other similar centers. CRPN is a mix of psychiatric hospital and orphanage for profoundly developmentally challenged people. There are currently 52 residents ranging from 6 years of age to 46 years old. Approximately half of them require extensive psychiatric and neurological medications. A little more than half the residents also wear adult diapers. The intellectual impairments range from downs syndrome to low intelligence from birth defects and malnutrition. Many resident suffer from a wide range of epilepsy and autism. Less than 10% of the residents have a family member who is able to visit them. Several of the residents have little biographical history on file; many people have only approximate birthdays and birth years. CadaNino staff of 3 (plus jkw sometimes) are technically volunteers to the center. Though our ministry is explicitly Christian, we are non-sectarian and non-denominational in our initiatives.

Our objective is to be of help where the government resources may not be currently available. Also, we attempt to have candid discussions with senior directors of CRPN about our desire to not expand our role beyond the limited project. Currently, the government of Guatemala has done an excellent job managing and improving the quality of care for the residents. In the past seven months there are significant improvements in the areas of nutrition, medicine and education. The initiative has focused on the developmental needs of the four children that have been living in the infirmary. They are complete invalids and are not able to live within the general population. They are Anahi -6, Ingrid-9, Susi-12 and Angel-13. With seven months of physical therapy the younger children, Anahi and Ingrid have started crawling and are able to put food in their mouths about 50% of the time. Susi and Angel have much more profound challenges and we have been happy with some movement and improved muscle tone. The known abuse of these children prior to their arrival in the institution is mind boggling. The fact that a couple of them lived through early childhood illnesses is quite amazing. CRPN is nearing completion of a new wing for the center. The new section will house the woman’s dormitory and bathroom. It will also provide a room for physical therapy and an office to the psychologist.

We have been using the therapy room with temporary carpets and the results for the four aforementioned kids is phenomenal. The ability to play,crawl or roll around on the floor is a vast improvement over the continuous restrictions of their beds and wheelchairs. The past seven months have required flexibility and creativity. The Director of CRPN, Celadonio Soto, has become a good friend and is thoughtful about the appropriate level of participation for our ministry. He cares a great deal about the kids and is realistic about what they can expect in the way of government support. To be clear, the small project that we have in place is nothing compared to the economics and management of a 50 bed hospital like setting. The cost and logistics of food and medicine (to say nothing of expensive adult disposable diapers) is enormous. I describe the government support as, “three hots and a cot.” That is to say that they are well cared for in the basic needs of nourishment and shelter, but that some of their personal individual growth opportunities may not be fully recognized.

I’d like to briefly profile the clinic kids – Anahi is the youngest and she is adorable. We believe her father is also her Grandfather. Let that thought sink in for a few moments. She is 6 years old and has profound autism and limited neuromuscular development. Because she is young, she seems to be physically strongest. She is able to crawl and stand up in her crib. With an adorable face and beautiful eyes, she has a nasty scar across her forehead which is presumed to be related to the type of autism where she rocks incessantly back and forth and will hit her head against walls or any hard surfaces.

Ingrid is 9 years old and has progressed well also. Her arms and legs are severely curved near the hands and feet as the result of fractures in infancy. The fracture bones were never set and thus the bone increased and grew, but with a warp. One leg is also significantly shorter than the other because it was also fractured at the thigh. She was misdiagnosed with osteo-imperfecta which is essentially a fragile bone syndrome. She arrived at the center two years ago, severely malnourished and absolutely unable to use her limbs and hands for anything. In addition to the good food they provide her, she was consuming a good amount of high protein infant formula and is now at full weight for her height. Because her hands are of little use, she has become overly accustomed to retrieving sustenance through the bottle and we are weaning her from the bottle now at 9! A lack of stimulation and education has left her eye hand motor control to that of a 4 month old child. I believe that her eye hand coordination is improving and that within a reasonable period she will be able to feed herself.

The older two children are amazing cases as well. Susi has a smile that melts my heart and captivates all who see her. Her facial expressions are the only thing she is able to use to communicate. She arrived at CRPN a year ago weighing only 20 pounds at 11 years of age. Her legs and arms were in a semi permanent fetal position and of little use. Apparently, a grandmother had tried to take care of her because her prostitute mother was unable to provide for her. Susi’s very low brain function keeps her from being able to swallow any food or chew anything. All food needs to be liquefied for her and then slowly poured down her throat with little help from her swallow mechanism. Meals are slow and messy. Nevertheless, her weight has doubled this past year and she continues to make huge strides in physical therapy. She can hold her head up for 30 seconds unassisted and can roll over on flat surfaces. She also has a severe curvature of the spine that has delayed the development of one of her lungs. Part of the difficulty in feeding her is that liquids tend to get coughed up because of the stomach lung connection (how’s that for a non-medical non-scientific observation).

The oldest child is Angel and he is perhaps the most enigmatic. He appears to be far deeper in his autism and low intelligence. We don’t know much about him except that he was apparently severely abused for much of his childhood. He has scars all over his torso and the nurses indicate that his anal sphincter has signs of sexual abuse. He has little interest in food or activities, but is improved since he was put on an anti-depressant that stimulates his appetite. He is quite tall, but shows little desire to use his extremities.

The other 48 residents are fascinating and special children as well. Each one touches my heart and is worthy of God’s love. I have been appreciative of the time that I have had to get to know people individually. There are several people on staff that have become close personal friends. They are saints and heroes to me. The average salary for most of the nurses aides (neneras) is about $200 a month. Many of them are single head of household parents. They are also an important part of our ministry. My role today is pretty much player-coach. I try to have my hands in everything, but then step back and assess where there is need and where we can have impact. Jesus has been my guide these past seven months and stood by me even during the periods with our mis-steps.

I believe I have seen God’s face in the smiles of some of the children. Not just during our photo ops, but during those quiet periods when not much is going on. Suddenly they notice, “hey somebody is paying attention to me and playing with me.”

I rent a small room in a nearby hostal. It is very clean and comfortable. I have internet and cable television and live a fairly normal day to day life. Staying close to the center, I am able to come home for lunch many days and catch up with the news and emails. I hit my knees in the morning and evening to thank the Lord for his many blessings and challenges.

My Church in Summit, Renaissance Church has been very generous with donations of clothing. Each month I have distributed 100-150 pounds of clothing to people that I know are needy and put them to good use. It’s always fun to see a resident wearing a Pingry, Newark Academy or Dartmouth t-shirt.

At present the plan is to continue spending most of each month here in Guatemala. Though my ability to predict much about the future is questionable, I am very committed to this center and this group of children. Lizzie and I have rented a small house in Summit. I think that will still be "home base" for me the next few years. I love telling people about what we are doing down here and look forward to telling you more soon.

Cheers,

Jamie

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Back in Guate... Rock n Roll

Great first day back. Much to catch up and do. Kids are great. Susi holds her head up much better than I would have imagined 12 days ago. God is awesome.

The volunteer clowns came to visit and are always a huge blessing.

Fascinating Kids school - Part boarding school part assistance

Has a wonderful visit to ASOL with a group called "Unidos por Amor"

Very dynamic and interesting philanthropy-

Independenca Day Celebration September 15th

Lot's of activities...

First days Back Catching a body and Hed lice.

I arrived here yesterday and had a great visit with the kids. There are lots of Flu viruses and colds going around. They also had short haircuts because of an epidemic of head lice. Although it is a bit masculine, they really look better with the short hair.

On my morning walk, I crossed the street where a body was in a body bag. Apparently, the young man who helps the Bus Driver with the money and communicating with the riders had jumped off a slowing bus too early. He was run over and killed by both sets of
tires. Very sad. The bus is the 83 bus that comes through our neighborhood and likely that

we would have ridden with him sometime recently.

Fotos from CRPN

It's funny how something fairly simple can really help. We discovered three rolls of carpet in a closet and set up a temporary outdoor play area for the invalids that live in the infirmary. The small amount of extra free space is amazing. Anahi is really crawling. The other three are visually stimulated and enjoy the fresh air.

Potty Training...

Is it just me, or is a large number of children learning to use the potty a very funny thing?

Health care... Free Goverment clinic

We took Ingrid and Mingo for some new diagnostics. Lot's of waiting
lots of fairly sick people.

Pueblo near Volcano

Pasamos la tarde en un pueblo. Mucha gente indigina..

Very nice people

First Few days back!

Relative calm and progress. Some new photos of the kids...
The construction really is nearing completion... waiting for Godot...
We need the open space that will be freed up

The Wading pool

Even though the construction has continued, we were able to set up this wading pool. The response was phenomenal and the kids were clearly stimulated.

Special Olympics...

While I was away, we participated in the Olimpicos Especiales. Needless to say, we excelled in every event and came home with a ton of medals.

Teleton Guatemala 2009 cerca CRPN

Ninos especials ayuda con Teleton 2009. Pollo Campero da mucha apoya a Teleton. Es una compania muy generos con buena comida.

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June 20 Flight to Newark

Flying home today after three weeks here. I am settling into a routine with all the attendant benefits and liabilities. Most days, I spend the majority of working hours at CRPN working with the kids. Our two employees, Carmen and Rosario are there and working hard. Carment has broadened her work to stimulate the arms of Pascal and Mario. We also have wrist braces to help them with strengthening excercises.

Our new psychiatrist, Alexandra is wonderful. More precise diagnosis and medications have been a huge improvement in freedom and mobility for several residents. There were a few of the boys who had some "crabby" days during their change in meds. Also, vecause the new construction is nearing completion, we are cramped into even smaller quarters during the day.

The new girls dormitories and too common rooms are so close to opening. We also get a small yard and some avocado trees back as the construction finishes.

Wednesday we celebrated Father's Day. Very nice luncheon meal with small gifts and lots of laughter. Sonia gave me a great keychain holder and a male cardboard figure with a) Bowtie and b) two razors. I can only surmise that she channeled the bowtie thing and the razors is because I skip shaving many days. There are about eight males working at the center and I could not ask for a better group of guys. Yestrday, we hoisted the basketball backboard and rim into place. Not sure Bob Veila would approve of the approach or durability of our efforts.

Lot's of small benchmarks for progress. Ingrid can stuff a cooie in her mouth (eventually) and is drinking from a child's sippy cup. Anahi is almost starting to crawl. One day she had the sniffles and just wanted to be held. For ten minutes she clutched me and nuzzled my neck. That ten minutes she was not doing her autistic rock and endless monosylabic chant. Suzi is growing and putting on weight. She understand what we say to her. She is blossoming. Angelito has put on some weight and was actually laughing when we set up the wading pool. Just two months ago he was hospitalized for malnourishment and dehydration. The anti-depressants give him some appetite and that is huge.

Employee turnover has been disruptive, but long term beneficial. Some wonderful new folks have been hired and we are optimistic about the future.

En El Nombre de Jesus

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CadaNino Back Ground June 2009 CRPN

                                              CadaNino   (each Child)  

 

In early 2008, the US and Guatemalan government implemented the international treaty governing international adoptions known as the Hague Convention.  Previously, US Citizens were adopting children from Guatemala at the rate of approximately 4000 kids per year. With a tiny population, Guatemala trailed only China and Russia in the total number of US adoptions. Though a theoretically conservative, Catholic country, Guatemala was known to have an accommodative adoption processing capabilities that was believed to be bordering on fraud and human trafficking.

 

   The Government in Guatemala, stopped taking new applications for international adoption at the end of 2007, but there remain approximately 2000 cases slowly winding their way through a new and somewhat obscure emigration process.  Though the strains on the social fabric and network of orphanages  has been tangible, the fears of widespread starvation of newborns and infants has apparently been avoided.  Poor diet remains a challenge for much of the poor in Guatemala, but the family friendly culture has largely absorbed any surplus of unwanted children.

 

  CRPN (Centro Residencial Psiquiatrico y Neuorologico) is  small hospital for  mentally handicapped children and young adults. Some residents have family, but their handicaps are too overwhelming for the family to address. In recent years, the government run organization has experienced significant turnover at the management level as well as in the social service areas of the government.  As an outsider who sees extreme poverty in many areas of the Guatemalan topography, these residents are well treated. They have nutritious meals three times a day, clean clothing, basic medicine and people who work hard and care about them. They have a variety of educational programs with excellent teachers, but not enough time or resources for continued individualized tutoring. Generally, individualized development and education is the area that CadaNino focuses. 

   A combination of cultural ambivalence toward mental retardation and a government that is frequently in flux, has limited the access and implementation of volunteer programming at CRPN. A variety of not for profits and Churches have helped from time to time, but currently there is not a lot of support outside the government.  CadaNino has two employees who are paid by the foundation, but who report to the Director of CRPN, Celedonio Soto.  The first  EV (employee/volunteer)  is a physical therapist and she has had remarkable success with a core group of bedridden children. The second EV,  (employee/volunteer) is a nurses aide who has just started a full time position working similarly to develop and engage some of the neediest cases on an individualized basis.

  Cadanino’s objective is to make a difference in the quality of life of these children.  Through the adaptation of management techniques we hope to keep each child’s development plan under constant review and revision. Progress toward independent and healthy living is the objective. For some children that may mean learning to crawl and maybe walk some day. For others, it means being able to feed themselves. Some of the others it may mean a refinement of anti-seizure medications and additional education that might lead someday to living with a family or a half-way house. The love of Jesus Christ and the Holy Spirit manifested in the love, time and commitment will reap  miracles and success stories. Though I have joked with staff that my expectations are that two of the kids should be attending Harvard in the fall of 2009, that is perhaps a lofty and unobtainable goal. However, I do think there are several diamonds in the rough that will surprise on the upside with proper care. I think of Helen Keller and how low expectations were for her prior to her communications breakthroughs. Pray for these people for surely they are loved by Our Almighty God.

 

 

Birthday Girls This weekend

Ingrid turns 9 today and Anahi turns 7 tomorrow. They are happy special little girls

Waterpark Adventure

A great, but exhausting day at the waterpark. We took a short bus ride outside of the capital to a beautiful waterpark. There were 27 kids and we were each assigned supervision of a few. I had the good fortune to be working with Lucas and Pascual. Lucas was very adventuresome and he learned how to hold his breath underwater. Pascual was fearful of the water and he felt a chill that he could not shake most of the day.

It was a great experience and several hundred photos taken.

Special Olympics

Alright now, no kidding around. We are in training for the Special Olympics. Yesterday, we worked out at the track and toay we are going to a pool.

It is the beginning of winter here and the weather is overcast more of the time.

Our friend William and Marie Theresa came to the hotel pool and then for some pizza... Their parents came with us. A great evening.

The fastest week in Guatemala

Progress and growth for all of us here. My bio kids had the opportunity to help at Fundaninos. In addition to playing with the kids a lot, they helped at the school and with basic child care. With 5 am wake ups, they also attended 6am Bible study and enjoyed the delicious high carb meals.

At the Government Center, I shared the clothing donated by Renaissance Families and participated with the Physical Therapist. Seeing her skillfully manipulate the childrens arms and legs gives me the hope that they are progressing and may enjoy some level of autonomy eventually. I delivered a radio walkman with headset to Beatrize and she is in heaven listening to music. Her teachers find it a reasonably good tool to get her to comply behaviorally. They with hold from her when she misbehaves...

this keyboard does not have normal punctuation so I apologize...

JJ and Baila climbed the Mountain with the Boys

A typical Sunday afternoon here in San Jos Pinulla. I had committed to cooking the traditional Easter Spaghetti feast for 70, so Jamie Jr., had to lead the hike up the mountain. Took some great photos.

My kids arrived yesterday from the States and are a bit jet lagged. The cheap tickets had them flying at such weird times they vitually ulled all nighters getting here.
They are playing great with the kids and Baila is a good addition to the clan.

Alfredo eating... Yummy

Watch this and enjoy...

Here is the link to video 

http://www.youtube.com/watch?v=B3BiDaUqg34

The two kids that stole my heart

These two cuties are my very favorite children. The girl on the top is Ingrid and the other girl is
Ananin. They both have significant disabilities. They respond well to attention and
are very happy, well fed and healthy youngsters. My favourite activity is helping them at
lunch time. They have sweet good natured dispositions.

If a picture conveys a thousand words, you have read my novella.

Thnx Ren Friends Mision Pascua 30 hours till take off

Thank you friends from Renaissance. Around Saturday I panicked as I realized I would be heading down with empty luggage. Last trip I managed aslightly overweight 110 pounds of gifts and clothing. This trip exceeds my capacity to carry, but Lizzie and Rianna can carry the res on Saturday. You guys are the BEST ad I thank you on behalf of the chiquitos.... Bendiciones.

Looking forward to seeing Lucas

Lucas is a wonderful young man. He has a thirst for learning. He carries a notebook with him at all times. He stuff it into his shirt and pulls it out at a moments notice. He loved his visor with the Baltusrol logo on the side. He loves wearing my eyeglasses, but cannot wear glasses on a regular basis because they could be a bit dangerous. When I gave him my basic 1-2-3-4 finger eye test, he failed every time, but I was unable to distinguish if it was counting or eyesight.
Prayer for this special young guy. I can't wait to see him.

Fun Video about Fundanios

Friends in Mixco (neighborhood)

Marta works at the center in the laundry. She has had a run of misfortune and takes care of her younger sister, Beatrize. Beatrize nearly died from Meningitis at four and is now 45. Because of her ailments she stays in their modest rented home continuously.

Marta had three grown children. Her son was murdered four years ago in a case of mistaken identity. He drove a car similar to someone on the hit list of the Mara (local gangs). He had a good job, new wife and baby and was a devoted Church goer.
Shortly after his loss, her common law husband died of cancer/old age. Then her house
burnt down and she rented the current home. She pays about 500 Q a month which is
around $40.

Beatrize has a type of epilepsy and had insufficient funds for her medications. About a month
ago, she had a seizure while home alone. She is ok, but has a nasty scar on the brow above her left
eye.

Last week, I gave Marta some money for the medicine. When I saw the box of medication, the
price tag was 44Q or about $6.00 US. I'm not sure if the meds last two weeks or a month,
but needless to say, I was taken aback by the modest total cost.
They live in a neighborhood that was quite modest. I was eager to depart before sunset.
Please pray for Marta and Beatrize.

Sunset over the Capital!

Another beautiful day here. The weather is always the same: 60-75 degrees, mostly sunny , but a little bit cloudy. TV Weather people have and easy job- they only have to show up once a week.

Great weekend. Took some friends and some kids to play miniature golf. There were about 16 of us running all over the golf course. Tough to explain the rules, so we had a lot of fun just making a little progress. The older boys were frustrated because the amusement center also offered a go-kart course. Maybe I can arrange to take them when it is their birthday.

Moises was very cute. He ahd a lot of fun and managed to stay dry! The little rivers in the course caught many balls.

Slept last night with the guys at Fundaninos. They are really very well behaved. We all slept well and started the morning rituals at 4:45 am. Think we need to introduce revilie and some songs, but it was really cute. We watched a DVD and ate some "Chikies".

The sunrise here is great. The morning dew covers my car and the peace of the countryside is wonderful-

plj

OKAT

Extra Week Here.. God gave us a hand

Able to change the return date to USA till the 25th.

Amigos del otro lugar. Casa para ninos,