MUSTARD SEED ORPHANAGE

HEROES AT HOME AND ABROAD:

Local Therapists Journey to the Mustard Seed Orphanage in the Dominican Republic

For the past few years, SRT Prosthetics has invited local physical and occupational therapists to travel to the Dominican Republic to work with the children and staff at a special needs orphanage in Puerta Plata.

That invitation has been enthusiastically responded to by Sue Tribolet, Physical Therapist at Possibilities NE in Fort Wayne, Indiana, Jennifer Houston, SLP, Mark Berron, Assistive Technology Practitioner, Denise Sparks, Physical Therapy Assistant at RehabCare in Fort Wayne, Indiana (who also serves as the translator), as well as Deb Guebard, Physical Therapist and Sandra Vance, Pediatric Occupational Therapist at the Turnstone Center for the Disabled in Fort Wayne, Indiana and husband, Dr. Bruce Guebard, MD, a physician at Parkview First Care in Fort Wayne, Indiana. Over the past two years (and two seperate trips) this experienced group of medical professionals have made their journey to the Mustard Seed Orphanage, and both were documented by Physical Therapist, Sue Tribolet.

 

The 2014 Trip

This is the third year that we have made the trip to the Dominican Republic to assist the children in the Immanuel Hogar Mustard Seed special needs orphanage.  There have been significant changes since last year, including new buildings and new kids.  Our group included our wheelchair specialist, Mark Berron, Denise Sparks PTA and translator, my 15 year old daughter, Julia, and myself.
Several new buildings have been completed down the hill from the original building.  The largest building houses a dining and kitchen area, laundry room, therapy room, and a second floor for the administrative staff.  The other building houses the children with two large bedrooms and two large bathrooms.  There are plans to construct another building for more children as well as a church.  Currently there are 21 children who reside in the orphanage.  When the new buildings are completed, the orphanage will be able to house up to 50 children.
Another addition to the orphanage is Delphine, a Dominican trained physical therapist.  He has done a great job with the use of massage on the children which has helped tremendously with their severe tightness.  He has been using the books we made for the staff the past two years that have recommendations for positioning and exercise.  He was very welcoming and interested in any suggestions we could give him to help the kids, especially in positioning in their wheelchairs.
Some of the older kids include Miguelina, 24 years old, Jessica, 21, Johnnie, 18, Lovely, 18, Maciel C., 19, Wendy, 17, and Maciel D., 19.   Miguelina was full of smiles and laughter.  She will repeat some phrases in English and considers this hilarious.  She was able to walk short distances with a wheeled walker in a crouched posture, although it appears that she has had a stroke as her left arm and leg are weak and tight. Because she can walk, she is allowed to attend school. Johnnie is also able to walk and, therefore, attends school as well. Johnnie liked hanging out with Mark, stealing his tools, but quickly returning them. He is non-verbal, but sweet and full of smiles with a touch of orneriness thrown in.
Lovely can walk on her knees around the orphanage. She is a bit aggressive with new people but responds well to the staff. Maciel C., Jessica, and Wendy are all in wheelchairs as they do not walk. Maciel C. and Jessica have severe scoliosis (curvature of the spine) and many joints that are contracted in a flexed position. Most likely one or both hips on these girls are dislocated. The staff works hard on keeping them comfortable.  They are often placed on a mat in the common area to relax but also to enjoy the companionship of the staff and other kids. Wendy also has scoliosis but does tolerate sitting in her wheelchair for a couple hours at a time.


Maciel D. pleasantly surprised us this year when she walked out of the sleeping area by herself.  Last year when we were at the orphanage, she needed assistance to walk. She walks with one foot flat and the other up on her toe. She does not attend school, possibly due to her poor cognition. Her mother came to visit her while we were there and it was sweet to see the interaction between mother and daughter. Most likely, her mom has not been able to keep Maciel at home as she cannot be left alone and her parents must go to work.
The mid teens include Eduardo, 15, Marcia, 16, and Bernardo, 14.  None of these kids do not walk and are in wheelchairs throughout the day.  Eduardo can sit by himself if placed on the floor, although unfortunately, he often fusses and yells for lengthy periods and the staff feels that he does not like to be touched. Marcia has very contracted leg muscles which make positioning difficult; however, she smiles frequently and appears to be content.
Bernardo is the most physically involved child in the orphanage. When picking him up to hold or position him, he is fixed in total body extension. In other words, picking up Bernardo is like picking up an ironing board. It is heartbreaking. However, since the first time we went to the Dominican three years ago, the staff has been positioning Bernardo on the mats in the common area and he seems much more comfortable, smiling frequently and even laughing at times.
The preteens include Juan Carlos, 12, Maria, 11, and Samuel, 10. All three of these kids use wheelchairs throughout the day. Juan Carlos and Samuel are both very sociable and love any kind of interaction, especially with each other. If they are lying on the mat beside each other, they will reach out to the other and make noise and laugh.  They are good buddies and have been since we started going to the orphanage.
Maria is a pretty young lady who usually has pigtails and a huge smile, although she can be a bit ornery. When told to smile for a picture, she will start to smile, then move her head out of camera range. This is consistent enough to know she is teasing even though she is non-verbal.
The young kids include Braelin, 5, Jorge, 5, Francesca, 6, Selena, 6, Junior, 7, Joel, 8, Fausto, 8, and Steven, 9.  Braelin has Down’s syndrome and is very active. He walks, runs, jumps, and generally moves at warp speed. He goes to school and we were told that he is now receiving speech therapy. The staff is also potty training Braelin. He is generally referred to in the orphanage as “jefe”, which means boss.
Jorge is very small for his age. He is also quite cute and cuddly. My daughter, Julia, instantly fell in love with him and held him very frequently while we were at the orphanage. When she would put him in his wheelchair, he would fuss for several seconds and cut his eyes over to her so she would pick him right back up. It got to be such a pattern that the staff just started handing Jorge to her.


Francesca does not yet walk, but appears to understand quite a bit. She is the only non-walker at the orphanage who goes to school, probably due to her good cognition and her ability to knee walk and crawl. I taught Francesca how to pull up into standing and walk (cruise) while holding on to a ledge in the common area. After only one demonstration, she was able to try this on her own, and the staff was very excited for her. Francesca most likely had a stroke as she has poor use of her left arm and leg.
Selena and Fausto are the newest additions to the orphanage. Selena has been there about 8-9 months and Fausto arrived about a week before we did. Little is known about these two children. Selena sleeps frequently even when she is in her wheelchair. Fausto has a cast on his left leg for a broken tibia. Julia commented that Fausto seems so scared and uncomfortable. Neither Selena or Fausto are verbal and both require a wheelchair.  Fausto has a very good appetite as evidenced by two huge lunch bowls I fed him one day we were there (I would have stopped at one but he screamed very loudly and the staff handed me another bowl to feed him).
Junior and Joel are generally two quiet little boys. They both use wheelchairs as they do not walk or crawl, but both enjoy lying on the floor or being cuddled. These boys as well as most of the kids at the orphanage are very thin even though they are fed large portions of food. My theory is that they are burning excess calories with their poor movement patterns and overall high muscle tone which makes them very tight.
There was a disappointment with the wheelchair situation this year and Mark and David (a Dominican volunteer who lives near the orphanage) worked very, very hard to position the kids for maximum comfort and alignment. This is a difficult task as the 17 kids who are in wheelchairs are very contracted at their joints and many of them also have scoliosis. In addition, the elements, such as rainy weather and sea air, can cause the chairs to deteriorate quickly because they are stored outside.
Toward the end of the trip, Delphine, the on-site physical therapist at the orphanage, made an unusual request. He wanted help in measuring the neighbor next to the orphanage for an artificial limb.  When we finished measuring him, there was another gentleman waiting to be measured as well. We found out that these two men had been on a scooter together and were hit by a vehicle. The damage to both of their left legs was extensive and required above knee amputations. Their hope was to send measurements to the capital city for donated prosthetics. Fortunately, Sam Santa-Rita, CEO of SRT Prosthetics, was on the trip with us. He went the next day, re-measured both of them, and returned in March with custom prosthetics for each of them.
These last three years of working with the kids at the Mustard Seed Orphanage has been an amazing experience. The kids are all so sweet, they love the attention and the staff is very appreciative of all our help. It has been fun learning a bit of Spanish and experiencing a different culture and although the Dominican people are very poor, they are happy, kind and very loving.  And the 85 degree sunny weather is also a plus!

The 2013 Trip

For the second year in a row, SRT Prosthetics & Orthotics sponsored three therapists to work in a special needs orphanage in the Dominican Republic.  In addition to the therapists, a rehab tech joined us to help fit wheelchairs to some of the kids.  Returning this year was Denise Sparks PTA and translator, and myself, Sue Tribolet, PT.  Along with us was Jennifer Houston, SLP and Mark Berron, Assistive Technology Practitioner.


It was great to see the children and staff at the orphanage again.  All of the children were there from last year except one child who had gone home.  There was a new child to take his place, though.  Some of the staff from last year were still present and greeted us with open arms.  There are a total of nineteen special needs children at the Hogar Immanuel Mustard Seed Orphanage.  Ground had been broken next to the orphanage and work was starting on new facilities to eventually house a total of fifty kids.
Of the nineteen children at the orphanage, only three are functional at walking.  Most of the kids are severely disabled.  Therefore, this year we brought seven wheelchairs with us.  This was no small feat traveling with wheelchairs from one country to another!  The airline staff was not thrilled, although they had been forewarned, but they did a pretty good job getting the chairs to the Dominican Republic intact.


On our first day at the orphanage, we were pleasantly surprised that many of the children were on pads and mattresses on the floor.  The staff had obviously followed through with our suggestions for positioning from last year.  However, wheelchair fit and positioning were still a big issue.
While the therapists moved and played with the kids on the covered porch with the nice breeze, Mark (“the wheelchair guy”) started work on the first wheelchair in the hot sun between two buildings.  We decided Mark should work on Jessica’s chair first as she had the worst positioning secondary to severe scoliosis.  It was very exciting to see Jessica in a tilt chair with her trunk supported in a fairly upright position.  She was smiling and laughing (probably because she was finally able to take a breath deep enough to laugh).
While Mark was working on the wheelchairs, Jennifer (speech pathologist/feeding specialist) was learning how the kids were eating.  The general consensus both this year and last is that most of the kids have significant swallowing issues and would be using a feeding tube here in the states.  However, in the Dominican Republic, this would require nursing care for the kids 24 hours a day, and is generally not done.  All but a few kids have to be fed by the staff.  They are given large portions of food, but unfortunately much of that just ends up on their bibs.  Jennifer worked throughout the week educating the staff on modified techniques in feeding the children as well as the use of various cups.  Feeding and swallowing are probably the biggest issues in the orphanage.

Throughout the week, many friends of the Santa Rita’s came to play with the kids, hold them, bounce them on the ball, and feed them.  The kids literally soak up the love and attention they receive.  We had many laughs and smiles and gave lots of kisses and hugs.  Julie Cardman, a friend of mine, came from Pennsylvania for the week to help with the kids.  She was initially very overwhelmed as she has not experienced an orphanage or special needs kids.  But the kids were adorable and quickly melted her heart.  She, along with the other visitors, jumped right in and helped in all areas with the kids.
In addition to seating Jessica in a new wheelchair, we also worked on wheelchairs for Samuel, Juan Carlos, Massiel C, Joel, Bernardo, and Maria.  All of these children responded nicely to being more fully supported in these donated wheelchairs.  Many of the chairs tilted, allowing for the child to be fairly upright but still well supported.  The majority of the wheelchairs were donated through vendors that ATG Rehab uses.
Highlights of our trip this year include:
+ Trip to La Sirena, the Dominican version of  Wal-Mart
+ Trying to explain what a bean bag chair is to a La Sirena employee (attempting to purchase a bean bag for positioning at the orphanage).  “Material/bag that holds frijoles”
+ Feeding sour suckers to some of the kids with resultant “juices flowing” (slobber)
+ Playing with balloons
+ Seeing Massiel D get off her chair and crawl to get a balloon (did not realize she had that much movement)
+ Watching Denise have her hair “styled” with a crayon by 3 year old Braelin
+ Assisted walking with 3 year old Francesca, then watching her and Braelin “dance” together
+ Observing the staff using the shower chair that was constructed for them last year
+ Using Mark’s really nice camera to take multiple pictures of him holding the kids (grandpa Mark)
+ Four women (Denise, Jennifer, Julie, and Sue) ordering Mark around (we called ourselves the sister wives)
+ Singing with Miguelina
+ Seeing many speedos on the beach (okay, that really wasn’t a highlight).

Noteworthy comments:
Mark – “The first morning at the orphanage was incredible.  It was wonderful watching the staff and volunteers interacting with the kids.  I am blessed to be able to share my expertise with these children”.
Jennifer – “It was heartwarming to see the love the staff had for these kids”.
Cindy (friend) – “An enlightening experience.  I have a new admiration for those that take their time to spend with the children.  Will not be forgotten”.
Lauri (friend) – “It is a very heartbreaking place when you go and then sad to leave”.
Teresa (friend) – “We will take this with us in our hearts”.
Julie (friend) – “Do you think Braelin would be up for adoption?”.
And the week was summed up with a quote from Denise – “Heart and soul overflowing today”.

 

 The 2012 Trip

DAY ONE
We drove on a very rough road through a somewhat residential area, then through gates at the orphanage, opened by their security guard, Pierre.  The building housing the orphans was fairly large and very clean.  It was 9:00 a.m. but none of the kids were quite ready and the staff seemed less than enthusiastic to have us there.  We found out later in the morning that a child had died prior to our arrival and the staff was very upset and not as organized as usual.  There are 19 kids total at the orphanage, most of whom have very severe physical disabilities.  The age range is 3 to 19 and only four walk (one on her knees).

It became obvious that our first priority was to get these kids positioned in their wheelchairs as appropriately and comfortably as possible.  We eventually realized that there were not enough wheelchairs for all the children, so some would have to take turns in appropriate wheelchairs.  All the kids were so cute, yet so poorly positioned that it was difficult to focus on one.  Deb remarked that she just wanted to

reposition all of them for comfort and a better view of life.  Dr. Guebard commented, “It was funny to see the therapists attacking the kids and chairs like sharks attacking fresh meat (in the best sort of way)”.

Sam and Julie Santa Rita were with us this first day.  Sam was able to purchase foam and naugahyde to help pad the wheelchairs.  Many pictures were taken in order to get to know each child as well as eventually make a book for the staff to refer to for positioning, feeding, and exercise.

Sandra was able to work with three children and three staff members with feeding techniques.  Most of the children are fed pureed food from a bottle with the tip of the nipple cut off.

Denise was very helpful and calm about translating for us, even when all of us were requesting her help at the same time.  We were very thankful for her “spanglish” as she puts it.

Two of the boys, Johnnie and Braelin, were having a great time exploring the suitcase of toys that we brought.  Dr. Guebard blew bubbles for the kids and they seemed to really enjoy this.

On the way back to our hotel, we saw a man transporting a full size mattress on his bike.  Apparently, this is not an uncommon form of transportation and one can often find animals being transported this way!

DAY TWO
We began instructions on feeding and positioning with a good response from the staff.  We started to see individual personalities come out in the kids, more smiles and laughter today.  We found out that Johnnie had dumped out all the bubbles that we had brought!
Sam and Dr. Guebard worked non-stop on modifying and padding wheelchairs.  The security man, Pierre, was drafted into helping as well.  Dr. Guebard remarked that Sam may have gotten a bit “high” on the contact cement fumes, but his padding looked great anyway.

It appeared that a number of the younger kids understood us fairly well.  None of them can speak, but were responding appropriately, hollering to get attention or to be picked up; teasing, and laughing.

One of the older girls, Migdalena, actually spoke well and even greeted us in English at times. Deb demonstrated sidelying position with many of the children.  This was well accepted by the staff.  More sound and movement was noted when the kids were positioned correctly.

DAY THREE
When we arrived on this third day, we saw that some of the children were lying on their tummy or side. Several of the children were placed on blow up pool rafts.  These worked especially well for two of the older girls, Massiel and Jessica, who had severe scoliosis as well as hip dislocations.

We played with many children on the mats and the large ball.  We met more staff today – the night shift who stayed to see what we were doing.  They followed through with the positioning, playing on the ball and mats. All the staff admitted to having fun playing with the kids today.  It was encouraging for the staff to see what the kids were capable of – like Eduardo who is able to sit on the mat without help, and Francesca who could belly crawl around the floor.

Friends of Sam, Dale Mason and Brent Wilson, were willingly drafted into coming this day and helping Sam and Pierre with wheelchair repairs as well as constructing a shower chair.

While waiting for PVC pipe to make the shower chair, the guys cleaned out a storage area and found two more wheelchairs for the kids to use.  They also found a walker that was cut down to a pediatric size.  Francesca was able to walk forward with it and was fairly cooperative (not her norm).

Two days ago, Sandra had made some suggestions on feeding Braelin who has Down’s Syndrome.  As of today, Braelin is now independently feeding himself thanks to the staff following some of the techniques demonstrated by Sandra.

DAY FOUR
This fourth day was more of the same — posititioning, exploring the kids abilities with sitting, hands/knees position, standing, and even walking with some.  We have continued to train the staff with much success.  The kids are anticipating our arrival now and are making noises to get our attention.  There are lots of beautiful smiles and giggles today.  The children have touched our hearts.  Bruce commented “If only all kids had the same opportunities”.  We have come to realize that many of the children would have been fairly functional if they had the type of resources that we offer in the States.  We found out that the kids are sent to school, but only if they are able to walk.

The shower chair was completed today with great success.  The staff felt it would help their aching backs.  The staff could see how important the various positions were.  They also had great fun bouncing the kids on the large ball or the ride on toy.

DAY FIVE
Our last day at the orphanage.  We presented the therapy book to the orphanage assistant director, Yvelis.  It had many pictures demonstrating therapy, feeding, and positioning ideas with other suggestions as well.

We had been participating in the staff praise and worship time throughout the week.  We found out today that during the prayer time the staff had been thanking God for our help with the children.  There were many hugs and tears as we said our goodbyes.  We are grateful to Sam and Julie for the opportunity through SRT to work with these kids.  We know that God is blessing the children through the awesome, caring staff and the many missionary groups that come through.  All of the therapists felt blessed to be a part of these kids’ lives for the week.

If you are a physical therapist, occupational therapist or medical professional, and would like to take advantage of this life changing opportunity, or if you have any questions regarding this trip, please call

Julie Santa-Rita
419.633.3961

Along with therapy, the children of the orphanage are in constant need of items for daily living such as medication for pain, cold, cough, flu and allergies. They are also in great need of diapers and personal hygiene supplies such as baby wipes, sanitary towels, toothbrushes, combs, and toilet paper. For the past few years, SRT has been sending these supplies to the Dominican, and there are donation boxes in the lobbies of each office.

Medication Tongue Depressor Alcohol
- Pain Hand Sanitizer Childrens’ & Adults’ Shoes
- Cold Sanitary Towel Childrens’ & Adults’ Pajamas
- Cough Disposable Shavers Childrens’ & Adults’ Socks
- Flu Flashlights Scrubs
- Running Nose Batteries - Assorted Sizes for Adults
- Allergy - Assorted Sizes Belts for Boys & Girls
- Anti-Diarrhea Baby Bibs Hand Towel
- Anti-Acid & Chest Congestion - Large Size Bath Towel
Hydrogen Peroxide Braziers Wash Rags
Thermometer - beginners Sheets
Baby Food Underwear Blankets
Cotton - 24 mo – 18 yrs. old Bed Linen for Twin Size Beds
Milk Powder Kitchen Rags Pillows
Baby Wipes Kitchen Utensils Mosquito Net
Cotton Swabs Kitchen Towels Disposable Diapers
Nail Clippers Small Bowls - sizes 3 & up and adult sizes
Latex Gloves Plates Bath Soap
Disposable Mask - hard plastic Roll-on Deodorant
Shampoo & Conditioner Plastic Cups Toothbrush
Disposable Napkins Plastic Dishes Toothpaste
Paper Towel Electrical Extension Cords Body Lotion
Hair Accessories Bathroom Rugs Toilet Paper
Brush and Comb Assorted Toys Mouthwash
Vitamins for Children/Adults - Educational & Safe Toys Baby Powder
Protein Supplements Notebooks Baby Oil
Pens Coloring Books Vaseline
Pencils Post-its Diaper Rash Cream
Scissors Office Tape Birthday Decorations
Paper Clips Office Glue - Balloons
8 1/2 x 11 & 8 1/2 x 14 print paper Folders - Table Cloths
Office Supplies - 8 1/2 x 11 - Birthday Hats & Bags
Envelopes - 8 1/2 x 14 - Pinata
- Various Sizes Crayons Disposable Items for Party
Notepads Ruler - Dishes, Spoons, Knives, Forks, Cups, Napkins.

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