Saturday, February 25, 2017

Ti-willy Birthday Party!!!!

Everyone deserves a day that is all about them. It was so fun to see Ti-willey's sponsors throw him a birthday party. Ti-Willey had a BLAST and so did all the other children. :-) It was a super fun day! My highlight though was watching Ti-Willey's face throughout the day



Preparing for STAND is always a little crazy and busy. Packing up all the pediatric supplies from my clinic and taking them down to PdP. We had 2 truck loads this year. I always feel like the Grivswolds. 

The Miriam Center Therapy Staff always look forward to partnering with STAND for 2 weeks 3x a year help run the pediatric portion of STAND.  We were blessed this year to have 4 pediatric therapists come through STAND the first week and 3 the second week. We were able to see over 180 kids during the 2 weeks and do 2 days of outreach to Northwest Haiti Christian Mission to do some education with the outreach families, fix wheelchairs at the Miriam Center, and work with the Gran Moun. I tried to do a daily update on facebook because I knew that by the end of the week I would forget details because the weeks are so crazy!

Sunday before we started the first week of STAND we went over to the island of Tortuga to a beautiful beach. It was a perfect day full of relaxation, meeting the new team, enjoying time with old friends catching up, and just a chance to stand in awe of God's beautiful creation all around us!

The water was the bluest water I had ever seen. 
The beach looked like a beach out of a magazine. 
This is the boat we took across the ocean. 

Beautiful Sunset that night as well!

Week 1- Day 1
Today we saw and helped 20 kids. We entered 5 new children into outreach. 4 kids were entered into the new vitamin program I am starting for bow legs. We made a lot of equipment including 5 standers and 1 adapted chair. All 20 kids were evaluated, parents educated, and folder treatment plans updated. WE got a new microcephaly/club foot baby name Sammi. He is the cutest little thing. We placed his first set of casts, got him a bumby seat, and got loved on a lot! So many highlights I don’t know where to start. We have an Awsome team! Excited to see what the next 2 weeks hold if all this happed day 1.

The new building area STAND build for the pediatric clinic to build all of our equipment for the kids. 

Week 1-Day 2

Today we woke up to rain & a lot of wind. Though the day started slow with a few patients it quickly picked up pace around lunch. By the end of the day we saw 15 kids. We built 6 PVC pipe walkers, made 2 adapted Haitian chairs, fit/adapted countless pairs of AFO’s & shoes, made 2 custom hand splints, educated families, loved on kids and had a great day!

Day 2 ended with a very long day of re-organizing the entire pediatric clinic thanks to STAND installing new shelves for us today. Literally the shelves went up in an hour while we ate dinner. The last picture is the clinic at 6 and the rest of the pictures are us organizing getting ready for tomorrow. Life will be so much easier finding supplies especially braces! And sidenote all the braces on the shelves are matches!!! Braces without matches are now organized by size and by Left and Right.

Week 1-Day3
We saw 25 kids but it felt like a slow day believe it or not. The kids we saw today we’re not as involved nor did they require as much equipment to be built. A few highlights from the day.
11. My first kiddo of the day had a broken fibula/tibia & the cast given was not good. So we took it off and replaced the cast with 1 that would be more durable & provide better protection. So glad we were able to love on this sweet boy.
22. We got to give Nikaela her new stander (which was a 2 day project to build as we worked to make a new design which enabled us to prevent hip flexion).
33. Seeing a scoliosis girl progress from moderate scoliosis to slight over the last year with the homemade back brace made out of casting material at Phoenix Rising.
44. Seeing a boy with a 1 inch leg difference get a new set of shoes that allow him to walk better and run!
55. Seeing so many parents educated and poured into.

Nikaela and her new stander
The boy with a 1inch leg difference.

Week 1- Day 4
We had a great day seeing around 23 kids. We built a lof of equipment including an awesome walker that was adapted for a sweet girl with Athetoid Cerebral Palsey. Below are just a few highlight pictures. We worked into the night completing some of the projects. 1 family was here from 9AM till 5 and waited so patiently. So much time & love went into quite a few pieces of equipment. 

Thursday Night we had a surprise birthday party for Morgan at a local bar. It was so much fun! Morgan has a heart of gold and is 1 of the founders of STAND. So wonderful to spend the evening celebrating her!!!!!

Week 1- Day 5
The pediatric team split. Wendy, Maggie and I went to Northwest Haiti Christian Mission where we were able to do some wheelchair repairs on 5 Miriam Center kids wheelchairs and Tara & Nahum were able to treat 7 Gran Moun. Vickie and Miriam stayed back at STAND and kept seeing our pediatric patients there. They entered 4 more kids into the Rickets vitamin program, built some equipment, and saw a lot of kids. I got to make bi-valve casts for a club foot kid that I thought came from to far to do casting so that his foot did not get worse till he could get surgery in October. But his family in the end said they would drive 3 hours each way for 8-10 weeks so that he could receive casting. I also got to teach another family about simply thick and how to use it to help prevent their child from aspirating. There are so many other stories and highlights I could share….

 We are providing these kids with Calcium and Vitamin D for a year to see if we can make a difference. Praying we can help these kiddos. By the end of the 2 weeks we enrolled 20+
 kids! The plan is that these kids will come 1x a month to the mission to get their next months supply of vitamins. 

WEEK 1- Pediatric Crew!!! We rocked it this week!!!!

Week 1- Entire STAND TEAM 
Adults and Pediatrics. We had an AMAZING Team of volunteers from all over the united states. 
So thankful I got to serve alongside each and everyone one of them. 

Saturday early morning we headed over to the Island of Tortuga for a tropical paradise get away after a long, busy, stressful week. We had 24 hours to enjoy God’s creation. The adventure there included a boat ride across the ocean, 20 minute off roading truck ride straight up a mountain with breathtaking views to a quiet bed & breakfast. Only plans for the day were rest, enjoy friends, & explore caves.  Saturday afternoon we did go on a 3 hour hike and explored some caves. It was really fun adventure.

Sunday the crew headed back over the island of Tortuga to the beautiful beach we went to the week before but Wendy and I decided to head back to my house so that I could go to church with my kids and get a few things done at the Mission that I needed to.

Week 2- Day 1

 We had a slow start that turned into a CRAZY busy hectic day! The pediatric team rocked it & saw 21 patients! We built 1 stander, 1 walker, 1 Haitian adapted chair, 1 adapted wheelchair, took off casts, performed club foot casting, casted fractures, fit club foot bars, made post surgery plans, did a lot of parent education, and loved on a lot of kids.
Highlights from the day
1~ A young SCI (Spinal Cord Injury) Patient I was able to help get into an inpatient rehab facility returned & I got to see him walk for the firs time. Not going to lie it brought me to tears.
2~Seeing 1 of my clubfoot kids finish casting and walk for the first time independently
3~Seeing a severe club foot surgery boy’s foot almost healed. Seeing his foot straight verses completely turned sideways. Knowing in just another short 6 weeks he will be able to start walking and running.
4~Getting to love on & evaluate 2 young adults 18 and 28 with pretty severe disabilities who had never received any type of treatment. It is never to late to start. We were able to educate the families on stretching/massage, made chairs, made hand braces, etc.
5~Daniel’s parents brought a wheelchair & asked us to adapt it to him! This sweet boy is so loved by his family.
6~Seeing the therapists step out of there comfort zone and try new things & learn some Haiti adapting tricks.

Honestly I could keep going on with highlights. The point being we have an AWSOME pediatric team for week 2!

Daniel is small enough to be carried everywhere but his family brought in this wheelchair
and asked if we could help adapt it for him. So we did. A lot of outside the box thinking and creativity went into making this wheelchair. 
1 of the 2 young adults we saw for the first time. We were able to make him a chair, fit him for day hand braces and night splints to help prevent further contractors. We educated the family and just loved on this young man. 
Sebastian is getting so BIG! I made little foot braces out of hand splinting material when he was
just a few weeks old to help correct his club feet. He has done the club foot casting program and later in the week
were able to do an achilles tendon release for him. 
Meet Sammy our newest microcephaly and club foot baby. 
Our friend who back in October had major club foot surgery. He had to be taken back to the
operating room 3 times. He is healing well. It has been a long road but hopefully 6 more weeks
in a cast and he will be free to walk flat footed for the fist time!!!!

Marc Rony the young man who fell out of a mango tree that we were able to help go to
Cap Haitian to get in patient rehabilitation for 4 months. This was the first time
 I saw him since his rehab and I was brought to tears watching him walk and be able to put
his own shoes, socks, etc. on. 

Week 2 Day 2
Our team had another great day. We saw around 20 kids. We built a ton of equipment today: 2 bucket chairs, 2 Haitian adapted chairs, 2 PVC standers & 3 walkers. We also entered 7 new kids into the outreach program, did a lot of parent education, and as always loved on some super cute kiddos! Today would not have been possible without our AWSOME TEAM!

Week 2- Day 3 & 4
Day 3 pediatrics saw 20 children and Day 4 they saw 15 children. We made some pretty awesome pieces of equipment. Some Highlights….
1~ Seeing a sweet girl that came all the was from PAP. She had Spina Bifida & we were able to make her a cool stander, fit her with HKAFO’s & AFO’s and hook her up to get a tendon release tomorrow. Seeing God provide just the perfect braces to adapt was pretty awesome. We were able to set her up to get surgery tomorrow at the mission for a club foot tendon release. I will take her casts off in 2 weeks when I am in PAP.
2~ Making a really cool bucket chair with a desk attached for a sweet girl.
3~We have entered over 20 kids this week into the vitamin D & calcium Rickets program I set up for kids with bow legs.
4~We had a sweet girl with a femur not growing. We adapted an AFO to make a standing post and made her a PVC stander.
5~Wednesday I was at NWHCM & was able to do a quick Achille’s tendon club foot release on Ernie after he had surgery to fix a triple hernia. It was a success
The pediatric Team has been rocking it this week.

Week 2- Day 5

This morning Wendy and Laura headed to Northwest Haiti Christian Mission (Home for Me) for the day. Lauren worked in the Gran Moun (our elderly home) providing therapy to the most in need. Wendy did parent education with about 50 parents while I did 3 club foot Achilles tendon release surgeries. In the afternoon they worked on fixing some of the kids wheelchairs at the Miriam Center. The pediatric Team that stayed back at STAND to treat kids had a slow but good day seeing about 8 patients & building equipment for them. We ended the day tearing down & packing everything up to head back home to the mission. It was a CRAZY but AWSOME day of ministry!


The highlight of my day was working with Moise & his family. Mom brought him at 9AM and stayed till 4:30PM. He has only been apart of the program for a month and had not received any equipment yet. Today he received a custom built chair that will not only provide better positioning overall but specifically for feeding. One of the first things we noticed was that he aspirated on liquids  & was malnourished. The malnourishment was because he could not eat well not because his parents were not trying to feed him. We spent a good hour educating mother on aspiration and feeding/drinking techniques. We then sent someone out to buy powdered milk & baby cereal so we could demonstrate the techniques. Throughout the day we saw mom carry through these techniques! Mom was so patient and loving towards her son. We also made him hand splints. Dad came during the afternoon& waited with them. The following Friday dad came to the Miriam Center to get simply thick to add to all his son’s liquids to help prevent aspiration. After we gave him the supplies & demonstrated how to use it His father went on how much his son loves his chair. How he cries when they take him out of it. How his hand are looser since he has his hand braces. His father went on and on in excitement (he had only had the equipment for 3 days). Sunday dad returned to the Mission with Moise to get an evaluation done by the ENT Dr. that was visiting to make sure anatomically there were no problems. Then Teusday of STAND’s second week they returned for us to fit Moise for AFO braces for standing and a to make him a PVC stander. I absolutely love watching this family interact with and love on their son. They truly do have a special bond!

I am going to copy and paste my fellow missionary friend Susan's blog. She is the one who brought Lordjina to STAND.
"Lordimg_20170201_1450121181jina is two years old and first came to our clinic in October.  This child is super sassy, and I fell in love with her instantly.  Lordjina could not flex her feet and could not stand.  Not knowing how to best help her, we kept her information and she left our clinic.
I showed her photo to Autumn, an occupational therapist who works alongside the mission, and she encouraged me to bring her to STAND in Port-de-Paix.  However, I would have to wait until January!
January finally came.  I worked with Autumn to set up the appointment and made all the travel arrangements before presenting the idea to Lordjina’s mother.  I did not want to get her hopes up in case we could not work it out or find funding.  So many people came together to make the trip possible – Autumn made the appointment, Jody helped arrange a truck, Caitlin helped me plan finances, and Fresnel gave us a place to sleep!  When I finally sat down with Lordjina and her mother again to present my idea one week before planned departure, her mother cried.  She was so overwhelmed that so many people who do not even know her came together for her child.  She has gone to many clinics, asked many people for help, and said that she ran out of people to ask.  Of course she agreed to the travel and we planned to go together the next week.
When we finally were ready to leave and sat waiting for the truck, both of us were pretty anxious.  We hardly knew each other, were about to travel together, and there were no promises of how STAND would be able to help.  We made small talk and loved on Lordjina together to pass the time.
Did I mention Tom Snivley was here?  He was, and not really knowing what he was getting into, he was about to travel with us!
We made the four hour tap-tap ride to Port-de-Paix, with Tom and Lordjina in the front and me and her mother in the back.  By the time we got there, I made a new friend and so did Tom!  Lordjina absolutely LOVES him.
That night while Lordjina’s mother and I talked before bed, she made a comment.  She looked at me and said, “You love people a lot.  You love all people.”  I was caught off guard.  I told her that I love all people because that is what Jesus did.  She just shook her head and said that not everyone is like that.  She explained that after Lordjina was born, her father left them because the child was not normal.  Lordjina’s mother has been left raising 3 girls alone.
My prayer for this trip then changed.  I was no longer praying for Lordjina to get help to be able to stand, but for God’s love to be shown to this family.
The next day we went to STAND.  We were all shocked when within the first 20 minutes after arrival we were told Lordjina’s feet could be fixed with a simple surgery that next morning at the mission.  We spent the rest of the day making equipment and fitting braces to her legs to be used after surgery.  (Not to brag, but it turns out I have some duct tape skills.)  The family was educated and given so many resources!
The next morning at the mission, the family met the visiting surgery team.  They were cared for and prayed over as they got ready for surgery.  Autumn performed a Achilies tendon release, and they received excellent loving care.  Tom and I stayed with them every step of the way!
When we were getting ready for them to leave, Tom was playing with Lordjina, a nurse was double checking they had what they needed, and Lordjina’s mom looked at me and said, “You are not the only one who loves like Jesus.”  SCORE – Prayer answered!!
Saying goodbye to this family, not knowing when I will see them again was very hard.  Pretty sure Tom would have kept this little girl if he could have!  Hopefully when they come back to St. Louis for therapy  I will be able to visit.  I cannot wait to see this girl walk!!!
This trip could not have been possible without God.  He got so many people working together.  Each staff member, the STAND employees, the surgery team at NWHCM, and the generous ones who donated to make this trip possible.  What are the chances that the day we plan to go to STAND, Tom is here to make Lordjina laugh and take away her fear, and there is currently a team in St. Louis allowing us to do surgery the very next day?  Only with God!"


These pictures are from the day of surgery. She had a double Achilles Tendon Release

FOLLOW UP IN PAP TO GET HER CASTS OFF. We stopped at a hotel in PAP where a group was staying and cut the casts off in the hotel room. We then tried on her KAFO's and AFO's. She wasn't a huge fan but was happy to say goodbye at the end. lol. 

Marc Rony
Marc Rony (SCI young Man). Many of you may remember 4 months ago that I posted about a young man we were able to help get placed in an inpatient rehab facility in Cap Haitien. He originally came to NWHCM clinic with a broken arm & spinal cord injury. We were not equipt to meet his needs but were able to refer him to someone who could. Today I brought to tears as I watched him walk independently with crutches, take his foot braces off, go up & down stairs and hear that he can independently do bowel & bladder care. Seeing this young man smile ear to ear is such a big difference than last time I saw him where he felt hopeless & depressed! Praising God for his recovery. And I cannot thank Sibille & her rehab staff enough for changing this young mans life. Thank you to each of you who helped donate to cover his expenses and inpatient rehabilitation. At STAND we were able to fit him for AFO’s which will help him walk better & gave him a pair of loft strand canes which will increase his ease with mobility. Team effort from multiple organizations to change this young man’s life!
Marc Rony the young man who fell out of a mango tree that we were able to help go to
Cap Haitian to get in patient rehabilitation for 4 months. This was the first time
 I saw him since his rehab and I was brought to tears watching him walk and be able to put
his own shoes, socks, etc. on.