The Final Countdown

It is hard to believe we are writing you in our last 2.5 weeks here in Mbale.  We are overcome with so many emotions as we prepare to leave.  God has been beyond generous to us and has given us enormous peace about leaving.  We look back over the last 6 years together here and 10 years for Derek on the continent with incredible fondness and thankfulness.  We are leaving a country that we love and people we love even more.  Our days have been filled with remarks of “ we will miss this..” or “ we wont miss this…”  In all of the emotions, we are really excited to be starting a new chapter of life together.  

We leave Uganda on June 30th and arrive in Boston on July 1st.  Ironically, this is exactly to the day, 10 years from Derek initially stepping foot on the continent in Egypt. Pretty cool.  We will be in Boston for a few short days before heading to Catalina on the 4th of July for some needed time with family and unplugged from the world.  We are praying for this time that it will be filled with times of reflection, prayer and anticipation for what is next.  We want to reflect on all God has taught us and shown us throughout our time in Uganda but to do so in a healthy manner.  After a week (Derek) and two weeks… or so ( Julie and Nathan) we will fly back east to begin our shift to PA.  There are still a lot of unknowns ( housing ect)  but we are confident it will all sort itself out. 

We want to express how much we have appreciated you walking through these years with us.  We are thankful we were in Africa during a time where internet was often available :)  Thank you for praying with us, encouraging us and supporting us.  We do not say it tongue-in-cheek, we truly could not have done this without each of you.  We are humbled to have so many incredible people in our lives who have showered us with love.  Thank you so much.  

We pray this next chapter allows us time to see you more often.  Please feel free to find us in PA (the Harrisburg area).  We would love to host you ( once we have a house) or have you for meals/coffee.  We want to thank you in person for the influence you have been on this journey and our lives. 

We would love for you to continue to stand with us in prayer as we end this final time.  We know it is easy to get antsy to be in the next place, but there is so much still going on here that we want to be all here.  We want to be fully invested and appreciate our last few days in Uganda.  Please pray that as we shift back to the states we will really bloom where we are planted.  That we will invest in those around us and that we will not allow our minds to wander to regrets or longing to be places we are not.  We are so confident God is calling us to PA for this time, we want to glorify Him in our attitudes and how we adjust.  We KNOW there will be lonely, hard days where Uganda seemed so much easier, but we also know that is true with change no matter what.  Instead of getting stuck in those places, we pray to grieve different losses and celebrate the new life.  

Speaking of new life, as of November 9 (ish) we will be welcoming baby number 2 into our family.  We are excited and felt like why not bring all the changes at once… Please pray for this little one as it grows and we begin preparing a not so good sharer, Nathan, for his new sibling.

More prayer points; 

- Nathan’s adjustment to the states:  His best friend here is a Ugandan kid who lives on our compound.  Uganda is really what he knows and loves.  He is probably more comfortable with Ugandans than Americans at this point and speaks with a bit of a Ugandan accent.  There will be so many adjustments for this little guy, pray for grace on him and wisdom and grace for Derek and I as we navigate new waters with him. 

- Our marriage:  Pray that in the stressors that come with change we will unify together as a team. 

- Housing: Derek will go east to find a rental while Nathan and I play on the island… Pray for a good set up.  We are hoping to just rent as we get a feel of the area and find a house to buy.  

- Tim:  Derek’s replacement as he gets settled.  His family has never been to Africa.. lots of changes in store. 

- Our staff:  Probably the hardest part of leaving Uganda is the staff that has become our family here.  Change is hard and so we pray they are blessed through the changes of Derek to Tim.  We will miss these friendships but are humbled to have them.  Uganda isnt too far away is it? 

- Flights/travel home:  Not my favorite part of living here… and so I ask for lots of prayer for peace and grace while flying.  That Nathan sleeps a lot and there are not any complications.  

Thank you again and again.  May God reveal to you how thankful we are for you, I am sure words do not convey the depth. 

We love you and see you very soon, 

Derek, Julie and Nathan

A season of waiting

For many reasons, Derek and I decided we didn’t want to know the gender of our baby beforehand.  We felt that very rarely are we really surprised by good things in our culture, and we felt that it would help us enjoy the pregnancy more.  However, I (Julie) do not like waiting.  For anything: waiting for food to be served, test results, email replies, outcomes of movies… So as you can imagine, waiting to find out the gender of our first baby was tough. I’ve even been known to Google outcomes of ‘based on true story’ movies just so I would know how it ends, i.e. The Perfect Storm.  Waiting to find out we had a boy, welcoming Nathan into the world, was one of the best experiences for me.  In Scripture we are so often reminded to wait patiently on the Lord and to only focus on today, for we do not even know what tomorrow holds.  Waiting is a spiritual discipline I continue to work on.  So, God in His wisdom, gave us another opportunity to wait upon Him.

Every year Derek and I take time to pray about our future and the year to come.  More specifically, evaluating our time in Uganda and discerning if this is where He wants us.  About a year ago, we both felt that we were in our final 18 months in Uganda.  We thought that Derek had accomplished most of what he set out to do. This year marks 10 years for Derek on the field with CURE. We both feel that we need to be mentored in our different professions and we believe that the hospital is in a good and healthy place to transition out, and to bring someone else in. Derek, in his humility (Julie is writing this J ) felt like his eyes had become so used to the hospital, it may benefit from a new set of eyes.

We recently gave CURE notice that in the next 12-18 months we were ready to move from Uganda.  In a God-orchestrated way, we learned that a family, whom has been with CURE for a number of years Stateside, desired to serve abroad. Long story short, God provided the ideal successor for Derek at the hospital.

On June 30, 2015, Derek will be transitioning out as the Executive Director of the CURE Children’s Hospital of Uganda. To say this has been hard would be a dramatic understatement.  Derek and I met at the hospital in 2009. Many of the staff who were there then are still serving with us. For two and a half years, we dated long distance, making semiannual trips to Uganda to be together.  We married in 2011 and, six months later, relocated as a family to Mbale. My whole pregnancy with Nathan was here and he was brought back at 7 weeks old. In summary, Derek and I have never dated while living in the States, nor have we lived there as a married couple.  However, that doesn’t seem as daunting as the fact that the staff that walked through each stage with us is here, in Mbale. Our friends here have been through each chapter with us, praying us through them. Informing them about our departure has really torn us up.  To say goodbye to people who have become a part of us and our story is heart wrenching.

And now the waiting. What is next? Derek will likely stay with CURE, if there is a good fit for him and for the organization. If so, central PA will likely be our landing spot next summer.

Just the other night, I said to Derek that a lot of this feels like waiting to meet Nathan. It’s premature to shop for household items, look for jobs, cars, houses because we don’t know, with a high degree of certainty, where we will land.  So, it allows us to fully love and live exactly where we are. What a gift!  It’s not easy for me to not know, but I am learning the incredible gift it is to just focus on today.  To live today to the fullest, to love people well where we are, so that when we get back to the States there are no regrets of time wasted, mentally living in the States while we’re here.  Thank you God that you are so kind to us and teach us these lessons. During this time, I pray that I learn to ask for only our daily bread, and not try to plan 12 years out J

In all of these changes we would covet your prayers.  The truth is most days we don’t emotionally want to leave Uganda. BUT we have peace about this decision and believe it is what is best for us and for the hospital, and ultimately, His sovereign preference. Meanwhile, we want to be fully engaged through June.  We want to give 100 percent to our work and relationships.  It must be a defense mechanism to check out, mitigating the pain so it hurts less, but we are praying that God keeps us from this.  Although it will not be easy, it was worth it with Nathan, and it will be worth it in June.  We humbly request your prayers because we haven’t lived in the US as a married couple.  I’ll look for work as a PT. I haven’t worked in the States since graduation.  Also pray for us to have grace. Because this was our decision and we’re leaving “in a good way,” people may not think this is hard for us. It’s the opposite.  It is hard. Inasmuch as we’re making an effort to not check out, please also pray that those around us don’t check out on us too early either. So, please don’t hesitate to ask us how we are doing or pray specifically for us about this. Transitions are never easy; especially when what’s on the other side is completely new and unknown.

Safe Haven

Apologies: the third blog entry in this series has been delayed.  We just got back a few weeks ago from a wonderful but exhausting trip to South Africa, Zimbabwe and Zambia.  We will save that for the next blog.  As for where we left off:

We have talked about the shunt vs ETV procedure, which is central to the hospital.  However, there are a few other things that are as central: our faith and faculty.  We have talked before about the stigma that is attached to Hydrocephalus and Spina Bifida. Like other disabilities, many people view children with Hydrocephalus and Spina bifida as curses and that their mothers did something wrong during pregnancy to have a child like this.  Can you imagine? 

I cannot. 

Many women have been abandoned by their husbands for giving birth to such a child. Her family will not take her back because they have already been ‘paid’ for her. So here she is with her new born baby, alone, abandoned and often times, abused.

Somewhere in all of that, the mother is referred to the CURE Children’s Hospital in Mbale.  In some cases, like those with Spina bfidia, the mother has traveled the day she delivered, sometimes up to a 12+ hour bus ride… the day she gave birth… ouch.  From the moment the mother enters the gates at CURE she is greeted by 100 full-time hospital staff members who love her and her precious child.  She is welcomed on the ward, where there are 30 other moms who have babies with the same exact condition.  The doctors explain that this is a physiological condition and not a curse.  She sees nurses holding her baby, touching her baby’s feared ‘big head.’ She sees Jesus in every smile, touch, word and deed.  Not too long ago I walked by the ward and saw one of our maintenance workers holding one of our little patients. He’s not a nurse or doctor and didn’t need to; he wasn’t expected to; but he did.  Why did he do it?  Because he knows that these babies are truly created in the image of God and are worthy of love and worthy to be treated with dignity. 

I think that is why going to work every day is exciting.  It’s not the research that is being conducted (which is fun…nerd alert); it’s not because it is in Uganda; it’s not because its neurosurgery; it’s because each day we walk into a facility with men and women who get the heart of God.  And not only do they get it, they live it out and share it.  They know that spiritual healing and physical healing go hand in hand.  They know that this world is not our home.  They know, far better than I, that this world can be a cruel, dark place.  They have encountered Christ in a real way.  Not what others say about Jesus, but Jesus.  They have seen suffering in a way I have never experienced, and yet they can sing “My God is Able” from a pure, dependent heart.  That’s what makes this place inspiring. 

Ill leave you with a little excerpt of an email we received the other day.   This is to give Glory to God for what He is doing here.  We are honored to be a part of it but realize every day that God is at work; it is nothing that we are doing.  May we continue to love people well because of His incredible love for us and as we love, may we always give a reason for the hope within us. 

In an effort to sustainably disciple the mothers and families of our patients, our spiritual ministry team holds Christianity Explored classes for pastors throughout the country. This testimony is from two weeks ago, about an hour north of the hospital.

We meet 34 pastor, and had two of our moms give their life experience.

After  giving an over view why we invited the pastors for the meeting, mama Jesse shared  a very touching experience that moved the pastors to cry and repent.

Mama Jesse said that she was rejected by her friends, neighbors, in-laws, church members and even her pastor due to Jesse’s sickness. “The only friends I remained with were CURE staff who used to welcome me, counsel me, welcome me, pray with me and even loved and carried  Jesse. I looked forward to Jesse’s follow up review to meet those who loved me and my child. I was born again but left my church due to the stigma. Pastors we need you. If it was not for the counsel, prayer, and  love showed to me by the CURE staff, I don’t know if I would still be alive.”

As mama Jesse was sharing her experience, I saw pastors shed tears.

At the end of mama Jesse’s sharing I was led to ask one of the pastor to come and repent on behalf of Mama Jesse’s pastor and other pastors who are not caring for their flock. Before I ended the call, one pastor got up and said that if I had not called upon them he was convicted to come and repent on behalf Mama Jesse’s pastor and others. He asked for forgiveness and as he left, another pastor raise up his hand, came in front, knelt down asking for forgiveness while cleaning tears from his eyes.

Thank you God for what you are doing.  Not to us, but to YOUR name be all the Glory and honor.

Approaches for treating hydrocephalus

Hydrocephalus part two J

There are two different approaches for the treatment of hydrocephalus that we will describe.  These are very brief descriptions and not written by a neurosurgeon.

Shunt:  The shunt is more or less a drainage system.  A shunt is an engineering device placed into the skull with a tube that travels down into the abdomen.  The shunt then passes the CSF from the skull into the abdomen to be absorbed.  Shunts are the first line of treatment in the US.  They have been essential in treating hydrocephalus for many years.

ETV/CPC:  Endoscopic Third Ventriculostomy/Choroid Plexus Cauterization: ETV is a procedure that has been around for a number of years.  The basics are that there is third ventricle in the brain.  The ventricle has an opening where cerebrospinal fluid (CSF) is to normally pass through. CSF cushions and protects the brain and spinal cord.  One of the places it is produced is the choroid plexus in the third ventricle of the brain. Traditional, stand-alone ETV uses a ridged endoscope to pass through a small hole in the skull, into the third ventricle and create an opening in the floor of the ventricle to allow the CSF to flow. This procedure has been employed for many years, but with limited success, especially for children less than a year old.

When Dr. Ben Warf came to Uganda in 2001, he saw a lot of children with untreated Hydrocephalus. Knowing the problems that come with shunt placements (failures, infections) Dr. Warf employed the ETV procedure. However, after a couple of years, he noticed a good number of young children returning with failed ETV’s, only to receive shunts. Dr. Warf combed over old publications and literature and explored the possibility of combining the ETV procedure with cauterizing the choroid plexus, a combination never before performed. In order to combine the two procedures, Dr. Warf had to employ the use of a flexible endoscope to go into the third ventricle, create the opening and then cauterizing the choroid plexus.  In other words, he created a drain and then slowed down the secretion of the fluid.  This doubled the success of the ETV procedure to nearly 80% in children less than a year old.

Why this so important in our setting: As we have said before, shunts are a foreign object in the body.  As any foreign object, they can be rejected, are prone to infection or become blocked.  When something goes wrong with a shunt, you have 48-72 hours to get treatment.  For the average Ugandan or individual in a village, this is unattainable.  By the time the parent recognizes the problem, sorts out funds and transport… often it is too late.  When Dr. Warf began to couple these treatments it allowed children to be shunt-free! A truly incredible discovery.  

It is so revolutionary and transformational that it is drawing attention of surgeons in the United States and other western countries.  We believe that it is the most ethical way to treat hydrocephalus. In this last year, eight pediatric neurosurgeons from the US have come to Uganda to learn the ETV-CPC procedure.  They are currently doing a study to see if they have similar results with babies and children in the US, and thus far they have. 

Why are we not shunt-free?

            Shunts will always be needed.  There are children whose anatomy does not allow for a successful ETV.  And, there are ETV’s which fail, resulting in shunt placement.  More than 35% of the children we treat in Uganda will receive shunts this year, but most will go home without a shunt and without the need for additional surgery.

           

 Stay tuned for the next entry on what makes CURE Uganda a truly incredible place.  

What we are doing here

Its almost the weekend!   We hope you have some fun plans to enjoy the last few weeks of summer! We had an amazing weekend last weekend but that will be for another blog! 

I am introducing a new idea for our blog for the next few weeks.  Last week we had a wonderful friend come and visit us and the hospital.  After seeing the hospital she remarked what an incredible place it was.  She continued to ask a number of great questions about what we do and why we do it.  It reminded me that we get to be involved in a pretty incredible story, with amazing people; however,  we may not tell that story to too many people! So, the next few blogs will be about what we are doing here and who we are doing it with J  If you know a lot about Hydro, you may want to skip the next few blogs!  Feel free to ask questions!

What is Hydrocephalus?

Definition:  Water on the brain

In the US:  Every year about 6,000 children are born with Hydrocephalus in the US, making it as common as Down’s syndrome and the leading cause of brain surgery for children in the US.  In the US the majority of children with HC are born with it.  Something occurs in utero ie fetal hemorrhage, causing hydrocephalus, the children who are not born with it, usually contract a viral or bacterial infection in the first few weeks of life which lead to hydrocephalus ( ie meningitis).  The second type of hydrocephalus is often referred to as Post-infectious (acquired) Hydrocephalus.   Currently in the US the first line of treatment for hydrocephalus is a shunt.  A shunt is a device that goes into the skull.  It has a plastic tube that inserts from the device down into the abdomen.  It works as a drain.  The fluid from the brain goes down the tube and into the abdomen where the body (ideally) absorbs it. 

In Uganda:  Each year there are 3,000 new cases of Hydrocephalus.  Unlike the US, 60-70 percent of cases that we see are Post Infectious Hydrocephalus.  This means that these children are acquiring some infection in the first few weeks of life which lead to hydrocephalus. Also unlike the US, the first line of treatment for our kids is not a shunt; it is a shuntless, endoscopic procedure.  We will describe this in a later post and how it is revolutionizing hydrocephalus care world wide.

Access to care in the US:  There are currently approximately 2,500 pediatric Neurosurgeons ( a ratio of 1:150,00). Ratio of about one surgeon for every two kids born with hydrocephalus.   Most families with kids with hydro are encouraged to live within one hour of  an ER.  This is so important because 50% of shunts fail within the first 2 years and nearly ALL within ten.  Once the skull has fused (~16 months), you have 48-72 hours to replace/revise a shunt that has failed.  Left untreated, the increase of intracranial pressure is often fatal. 

Access to care in Uganda:  There are currently two pediatric neurosurgeons in Uganda for a population of 35 million ( a ratio of 1: 17million).  Both surgeons work for CURE Children’s Hospital of Uganda. 80% of Ugandans live in the village, the vast majority are a day’s journey from the hospital.  So, if a child in the village has a shunt failure, by the time it is recognized, it is often too late to get to the hospital to received the care needed.  Dr. Ben Warf quickly recognized this problem and pioneered a new technique, a shunt less approach for treating hydrocephalus.

You cant make this up....

Every day Derek or I will be driving and will see something and say "You just cant make that up!"  Some mornings it is seeing a boda boda driver wearing chemistry goggles while driving, other days it is seeing the local camel being ridden through town while the rider is texting on his cell phone... or maybe it is this sign that makes us laugh.every.night.

Please note that this sign s directly in front of the Kindergarte (n).  Please read the location

Three months have passed

Six Months!

 It has been three months since I blogged...

I really have not had time to think about blog worthy ideas, but the main consumer of my time, is definitely blog worthy.  Since we haven't blogged about this guy in a bit, I thought it would be fun to let you know how Nathan is doing.

Brief summary of Nathan:  Seven Months Old!

- Weighs 16lbs, and measures at 29 inches long.  He is wearing size six month clothes and size two diapers.
- Recent accomplishments:
       - eating pureed: avocado, carrots, banana and pumpkin.  He has not found a food he doesn't like... shocking.
       - Commando crawling everywhere
       - Sitting, clapping, drooling, standing up in his crib to welcome us in the morning...
       -  Pulling himself up on the doors to get a better look at Lemon
       - Mesmerized by basketball...
     
 - Social:  He loves people and smiles a lot.  He is very interested in everything and loves looking around.  He does not like to sit quietly, but LOVES to tell LONG stories...
-  Hair:  This seems to need its own bullet point since it seems to be quite a topic of convo.  He comes by his hair naturally ( Papa Paul and Auntie Lili).

He is truly a joy to be around.  He still doesn't love to nap, but we may be making some progress.

Enjoy the pictures :)  We cant wait to see many of you soon!

Crawling

Everything is in the mouth

Hands are VERY interesting

Very good posture and dexterity with his binky. 

We love bath time and the friends we meet there.. and now insist on carrying them out of the tub

Smiling is our favorite.  And we always support Auntie Lili's team!

And when its hot, and our baby pool has a leak... we sit in our tub outside and watch the cows pass by. 

A look I think we need to get used to...