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Monday, May 6, 2013

Therapy Dream Team

A few weeks ago (right before getting my second bout of Typhoid) I had the wonderful opportunity of having a “Therapy Dream Team” at the Miriam Center. For the first time in my 7 years of working at the Miriam Center we had a Speech Therapist, Physical Therapist, and Occupational Therapist at the Miriam Center at the same time. It was pretty FANTASTIC to say the least!

Molly Welsch is a Speech Therapist (ST) I met during my travel working stint in Philadelphia. She is an AMAZING ST who has a heart and passion for working with children but also has a lot of experience with feeding/aspiration. She came to Haiti for 2.5 months to help set up a ST program and help in developing/training in better feeding/nutrition.

Jennifer Clause is a seasoned pediatric Physical Therapist with a wealth of knowledge. She has been to the Miriam Center on 2 previous occasions but was always there when I was in the states. 2 years back she completed Physical Therapy Evaluations on 15-20 of the children that have been helpful in guiding my treatment of the children. To say the least I was excited to finally meet her in person and get the opportunity to learn

What a huge blessing to work alongside both of these amazing women and to pick their brains for ideas and treatments for the children. One thing I learned quickly years back when I started working at the Miriam Center is that I wore many hats…I played the role of ST, PT, behavioral specialist, feeding specialist, hand therapist, etc. because we did not have one. Me doing something was better than nothing even if it wasn’t the ideal.

Jennifer collected supplies from my wish-list and I was so superduper excited when I found out that she collected enough small therapy ball that I will be able to provide one to each of my outreach families for in their homes. This will be a huge blessing to encourage carryover of the therapy throughout the week outside of their 1 day a week. My hope is to do more training on the specific ways they can use the therapy ball with their child prior to providing them with one in their home.

Jennifer also collected old AFO’s that children in the states had outgrown. Throughout the week we were able to fit various children with AFO’s to increase stability at their feet/ankles needed for standing and walking.

One of the projects I was in the middle of working on was creating knee blocks for many of the severe/profound Miriam Home and Outreach children to provide the stability needed to work on standing and weight-bearing through the arms. Both important for increasing strength and proper bone development.

Many of the Severe and Profound Children at the Miriam Center really require 2 people (4 sets of hands) to provide good quality therapy that works on what they need to work on. It was so wonderful to work together with Jennifer and see so many of the children working in positions and on skills I was never able to work on with them because I didn’t have enough hands. It brought so much joy to my heart knowing the potential and the future. I have 2 OT students coming this summer which means more hands and equals more intense and better quality therapy for the severe and profound.

As I was praying over how to best utilize the time I had Jennifer in Haiti, I really felt picking her brain for ideas to make some new therapy training handouts was a beneficial way. The need for handouts that addressed more individualized areas was brought to me last fall by Presidue (the Haitian that runs my outreach program). I had been wanting to make some new handouts and had started to scan some pictures into the computer but really wanted a PT perspective and ideas specifically for crawling, standing, walking, etc. Throughout the week Jennifer and I brainstormed categories (activities to promote extension, activities to promote flexion, activities to increase core-strength, activities to promote rotation, activities to encourage hand use, etc.). After all the categories were made we began locating pictures that demonstrated each activities. For activities we could not find a picture for we had her husband take pictures of us doing the activity with one of the children. We then wrote a brief caption to go along with each picture. I then took all that information and made it pretty through the program “Publisher”. Once I had an English version of the handouts I had Nahum translate them into Creole. While I am back in the states regaining my strength I am typing in the Creole and getting the handouts printed, laminated, and 3 hole punched ready to go back into Haiti and start training!!! In total we created 13 new Handouts.

The week went by so fast and unfortunately I started getting sick Jennifers last 2 days in Haiti. I am so thankful for the time I had to do Therapy with this “Dream Team” hopefully God will align for us all to be in Haiti at the same time again to do it again!

Thursday, May 2, 2013

Jezi Konnen...(Jesus Knows)

As I sit here processing through the last 5 weeks of health battles the words that keep resurfacing in my spirit is a Creole saying that I just love...Jezi Konnen which means Jesus Knows.

I won't lie...And I am not proud of it BUT...there have been many times I have prayed and asked God "WHY?" over the last 5 weeks.
~Why Typhoid?...
~Why didn't the treatment work the first time?...
~Why did I have to fall in the 20-30% that the Typhoid shot did not prevent me from getting it?...
~Why did it hide in my gallbladder and come back with Vengence?...
~Why didn't the second round of IV antibiotics kick it?...
~Why all the other symptoms and possible Dungue Fever or Malaria?...
~Why couldn't I get better in Haiti...Why did I have to be flewn back to the states?...
~Why didn't the hospital in Miami find anything and now the dr. in PA is?...
I could go on and on...

I tried to overcome my "Why?" questions by renewing my mind with the truth. I listened to many podcast sermons, christian music, when I felt up to it read scripture/christian books. I also tried to take my mind off of things watching movies. Those who know me well, know that I have a really hard time resting and tend to be a workaholic. Needless to say being bedbound for 2-3 weeks was extremely hard. I really wanted to learn whatever lessons God wanted me to learn so I could get out of that bed ;-) I did work on a few Miriam Center projects on the computer and putting snaps on cloth diapers....

For those of you who are not on facebook and thus may have no idea what I am talking about, I will give you a quick rundown of my health battles the last 5 weeks...

About 5 weeks ago I got Typhoid. I was up all night sick 1 night and it took everything out of me. I started oral antibiotics and rested for ~2 days. I felt well enough to return to my daily activities. Morning continued to be rough and my stomach was still working through Typhoid but the medicine was helping. I continued my antibiotics for 12 days. (In the week I was healthy I had a Therapy Dream Team (a Speech Therapist, Physical Therapist, and me an Occupational Therapist) all in Haiti at the same time. It was pretty AWSOME! (Future blog to come with details about the Dream Team ;-)

About a week after finishing up the Antibiotics I started to get sick again. The first day I was just very tired, weak, headache, back pain...the next day it was worse and a fever, stomach pain, diahrea/vomitting. They thought I had either Dungue Fever or Malaria. Since their is not treatment for Dungue Fever they treated me for Malaria. After finishing the entire Malaria treatment I was still sick. They ran labs and thought I might have a stomach virus since typhoid came back negative. I was started on IV for dehydration as it had been about a week at this point since holding food in. The dr. also gave me some medicine to treat the symptoms of stomach pain and heartburn. They started me 2 days later on IV antibiotics and I had another round of more intensive labs done. The labs came back with my liver counts being a little off, definite typhoid, low iron, gastritis, and low white blood cells. They switched the me to 1 different antibiotic. I remained on those antibiotics for 5 more days along with receiving IV fluids. I was still unable to keep food in.

By this point I was beginning to get frustrated...I did not feel well...I did not feel like I was getting better...I was tired of running to the bathroom especially at night with a flashlight, waiting for all the coachroaches to scatter, hoping their was toilet paper and that the toilet would flush...at times I felt like the 3 Haitian Drs. who were doing my treatment were not communicating...I felt like information was getting lost in translation...started questioning towards the end if they really new what was going on...or if they were stumped...I was emotionally done...I wanted to feel better...I wanted to get back to working with my kids...I wanted to get back to working with Molly on setting up Speech Therapy Program in the Miriam Center and Tackling the Safe Feeding...I wanted to hold my kids (not just hear them or watch them from a distance)...

At this point it had been 14 days since I had really held much food in and I had lost 15lbs...There was a team of American Surgeons in at the Mission for surgery week. They came and looked at me and recommended I seek further medical help either in PAP or in the states. I was torn...I did not know what to do...part of me wanted to go to PAP that way I could return to the Miriam Center sooner but that still leaves the language barrier and a Haiti hospital and what could they do for me that I didn't already have done in Haiti already...going to the states would be more expensive and longer recovery but it would mean better testing, family, friends, food, and luxuries. I could not decide and so Maureen and the doctors decided that I needed to go back to the states.

Last Wednesday I started an all day adventure out of Haiti to a Miami Hospital. It was the extra adventurous package. Justin was gracious enough to take the trip with me (as we all knew I was not well enough to do this trip on my own). We left the mission at 8:00AM by tap-tap to the PdP airport (about an hour away) to get on a small 4 passanger MAF flight. So thankful that Jody was able to set up this flight as the other option was the 8-9 hour off-roading bus ride (Thank you Jesus!). We flew to PAP where we learned my insurance company needed me to see a dr. in PAP to clear me as stable to fly and say I needed to be taken to the states. We drove ~30-40 minutes to a small clinic and waited to see the dr. The dr. wrote me a few perscriptions and said I should go back to the states. She told the insurance company this but also stated I should be able to fly on a commercial flight. Justin and I were both shocked as at this point I could barely stand & walk. So back off to the airport and the insurance was working on getting us on the 3:00PM flight from PAP to Miami. I managed to make it through security with my IV port in and made it to the waiting area where I quickly laid down and fell asleep. I remember boarding the plane and from then on is a blur. I guess I had a wheelchair/car transport off plane & through airport, Justin filled out customs paperwork and he held my hand to sign, stretcher waiting on other side of customs and ambulance ride to ER. I remember about 3 hours into ER visit. All I can say is THANK YOU...THANK YOU...THANK YOU Justin!!!

My Mom Flew into Miami Thursday Night. I spent 2.5 days in the hospital in Miami. Since they did not know what was wrong they had me in isolation room in the ER and a private room in hospital. They ran tons of tests and bloodwork. Their conclusion was that the typhoid had hidden in my gallbladder and I was very dehydrated. They rehydrated me and all the tests came back negative. They felt like the last round of IV antibiotics had gotten the typhoid. Since I was holding plane rice and chicken broth down without diahrea or vomiting they were releasing from hospital with instructions to follow up with my primary dr. Of course my first question to the dr. was "When can I go back to Haiti?" and My mother did not like his response because she knows me oh too well..."Whenever you feel up to it." Well my mother knows I would say tomorrow...It was decided probably 2-3 weeks. The next day I was flewn back home to finish recovering, gain weight back and see my primary dr.

The trip back to PA took everything out of me. I was still very weak and not tolerating being upright for more than a few hours at a time. Luckily I had w/c escort through the airports because I don't think I would have made it without it. By the time I got to PA and in the car I was done...I laid across the back seat and slept all the way home. Woke up long enough to walk inside and fall into bed...

I went to the dr. 3 days after getting home. I was still struggling to hold food other than foods on the BRATTY diet. He ordered a slew of bloodwork and labs to be run. I went yesterday to have those labs drawn. I got a call this morning that he needed to discuss some of my lab results...My heart dropped...Never good when the dr. calls you on your cell when he can't get you on the home phone to talk about results. He reported that all my labs had not come back but some did and that he had some concerns. He stated that my liver counts were still a little off and my pancrease counts were off by a little over 200. He stated he would consider admitting me back to hospital but it is really borderline and thinks for a few reasons it is best if he doesn't admitt me. He said I needed to go back to clear liquid diet till further testing is done. I go for some more tests on Monday and back to see the dr. on Teusday. Praying for answers and healing but also that I would embrace this season God has me in, rest in Him, allow him to minister to my heart/spirit, allow him to heal me not only physically but spiritually and emotionally. Jezi Konnen...Jesus knows...He knows why all this happened and is happening and will happen. He is in Control...He is the great physician...I TRUST IN HIM!

As I sit back and reflect on the past 5 weeks I can see how blessed I am
1. That I have such an AMAZING mission family who took such good care of me! They checked on me frequently... Helped me to the bathroom... helped me around with my IV pole and even helped me name it (pokey and slim jim!), they prayed with me and for me...They went to the onestop to get me juice, crackers & ice cream...located ice for me. They encouraged me...loved on me...and reminded me I needed to focus on me getting better because I am not good to the kids or the Miriam Center sick. Maureen got me all the medicine & IV fluids I needed. They all went out of their way to care for me. THANK YOU Stephanie, Molly, Maureen, Justin, Caitlin, and Ashley!!!

2. That we do have such great Hatian Doctors to coordinate my care and access to the prescriptions, IV equiptment, and fluids I needed. That I never did have to go to Hatian Hospital and received great care. Thank you Dr. Simon and your intern doctors for going above in beyond to make sure I was taken care of.

3. That I do have missionary health insurance that got me out of Haiti and to the hospital in Miami...even if it was the extra adventurous package.

I could go on and on recounting the blessings and the ways I saw God at work the past few weeks. A few scriptures He has really been laying on my heart has been

"There is a time for everything,

and a season for every activity under the heavens:

A time to be born and a time to die,

A time to plant and a time to uproot,

A time to kill and a time to heal,

A time to tear down and a time to build,

A time to weep and a time to laugh,

A time to mourn and a time to dance,

A time to scatter stones and a time to gather them,

A time to embrace and a time to refrain from embracing,

A time to search and a time to give up,

A time to keep and a time to throw away,

A time to tear and a time to mend,

A time to be silent and a time to speak,

A time to love and a time to hate,

A time for war and a time for peace."

Ecclesiastes 3:1-8

God Has reminded me that I am in the Season on HEALING...

"The LORD will fight for you; you need only to be still."

Exodus 14:14

THANK YOU for all your prayers, support, words of encouragement the past few weeks. I truly appreciate them. I do ask that you would continue to pray for my health...pray for wisdom and guidance for the doctors...pray that I would be able to rest and heal...that God would speak to me and fill me up spiritually and emotionally. Pray that I would be able to return home to Haiti soon but also that I would embrace the time I have here at home with family and friends. Pray that I would embrace this season of HEALING.

Thursday, April 4, 2013

One Stop

Yesterday Erin and I took Stephenson our oldest boy in the Miriam Center who is 25 years old down to the one stop to teach him how to use his hard-earned money. Stephenson’s main disability is seizures and mild MR. He is such a hard-worker and has recently started working in the new central kitchen at the mission and receiving a salary. He always has eyes open to anyway he can help ANYONE. His #1 characteristic is hardworking. We realized that He is making all this money but had no idea how to spend it. Yesterday was our first attempt at teaching him. He loves to eat and eats BIG portions…so yesterday afternoon Stephanie explained to him in Creole before we left that “you work hard for your money and you are gong to go into town and if you want a drink you buy 1….if you want some food., you buy some.” He was so EXCITED. And thus we headed downtown. Stephenson bought Erin and I ice cream and himself 4 Pate and a drink. We could not believe he ate ALL that food after he had just eaten a humungous plate of beans and rice for lunch 2 hours before. We had a nice meal sitting at the “tiki bar” at the one stop. It was a wonderful experience. We then took him inside to help us buy catch-up for dinner. We got the idea of setting up a small store at the mission and teaching him how to buy the items he needs like soap, shampoo, toothpaste, etc. (but actually putting the $ back in his folder after) This would help teach him $ management. Stephenson has been requesting his own room stating “I can’t live with those boys anymore…they don’t respect me or my stuff.” He is growing up & we need to start considering more seriously his future. Yesterday was another step forward in helping him! I feel blessed to have gotten the opportunity to be apart of it.

I went from an AMAZING experience yesterday at the one-stop to being in a place where my heart hurts after just returning from an ice cream outing to the One Stop. Erin & I got the idea yesterday on the way back up the hill yesterday with Stephenson that is would be so much fun to bring the severe and profound children down 1:1 to get ice cream & spoil them for an hour. Today we took Chamma & Rachel. After nap-time we dressed the girls super cute, packed a backpack with spoons/baby wipes and headed downtown. As we were leaving the gates Chamma mumbled “bye” to the momma’s. This is the first time I have heard her say any other words other than “ka-ka” and “Hi”. The girls were so EXCITED! As soon as we left the mission gates I would say 95% of the people we passed starred…stopped in their tracks and turned around to look at us. We enthusiastically said “Bonsua!” which means “good-afternoon” to each as many people as we could. The girls smiled at them and a few we even lifted the girls arms to wave. When we got the one-stop we immediately drew a crowd of people starring at us (mostly the one-stop workers…particularly the security guard). I left both girls with Erin as I walked into the one-stop to buy 3 little containers of ice cream (the girls shared). Chamma loved her ice cream she tried chocolate, strawberry, and vanilla! Rachel had a hard time eating it as it became liquid to quick & she was aspirating BUT she enjoyed the 1:1 time. I purposely ate off of the same spoon as Chamma to make an even bolder statement that these kids are not a curse and we can’t catch anything from them even eating after them as is believed. Before leaving I needed to run back into the store to pick up a few items for Stephanie. I decided to take Chamma in with me. I was surprised that the security guard ran in after me and watched me intently the entire time…along with the rest of the staff. This was so unusual…since moving here I have been to the one-stop over a dozen times and they have always been so friendly & nice.

On the way back to the mission Erin and I were talking about our feelings of what just happened…we came to the conclusion that though our hearts hurt deeply on how the Haitian society views children with disabilities that this activity is a great way to raise disability awareness and to practically do disability advocacy. We plan on going tomorrow again with 2 different kids! Since disabled children are hidden away…they are viewed so horribly/incorrectly…you are shunned from your community for having a disabled child…you are looked down upon…there is a severe lack of exposure. They need to see that the beliefs they have are not justifiable…they need to see us loving on these children…they need to see us being Christ’s hands and feet…They need to be shown the worth/value these kids have!

As I have been sitting here reflecting more I began to think what my parents must face 1x a week when they bring their children to outreach…how many looks do they get?...How many mean things are said to them or about their child?... How many are truly ostracized from their families and/or their communities?...How many feel no other choice then to keep their child inside other than 1 day a week?

The past 3 or 4 weeks God has really been laying on my heart the importance of doing more outside the gates as far as disability care and advocacy. A few things we are praying over include home visits to outreach families homes, in the summer doing VBS combined with disability advocacy in my outreach families area & bringing the disabled child/family and integrating them into all the activities, and now doing little outings to the one-stop. The thought of trying to change the view of disabilities in Haiti can seem so overwhelming BUT God is constantly reminding me that just like I say that I want to change Haiti 1 child at a time that the only way I am going to change the mindset/view of disabilities in Haiti is by helping 1 person at a time see the TRUTH!

Today we took Berto and Niaka down to the onestop for ice cream "their first date." We always joke that these 2 are boyfriend and girlfriend because they always sit next to each other. The other day I went downstairs and found them in the stroller with interlocking arms AND Berto does not like when anyone else sits next to him ;-) The security guard did not hang as close to us today and did not stare as much. We still had people stop and stare but the people who were there the day before did not. We realized this is a great way to do disability advocacy. Berto loved his ice cream but Niaka was not such a fan. It was a fun trip!

MY KIDS....

Thoughts as I laid in bed last night....
I admire my kids so much & the way they live EVERYDAY despite their disability. It challenges me to grow more into who Christ created me to be. I see Christ in each of them...the following are just a few ways I to be like my kids in Haiti & thus more Christ like...
1. Be HARDWORKING like Stephenson and Lovejinnie