Sunday, May 17, 2015

Wada Wada Wada

Friday is the day we have feared for over a year. Another Wada test. 

The events of last year's failed test are ever present in all of our minds, as are the faces of our precious neurology nurses who were truly scared Wyatt wouldn't survive. 

Last Sunday I had such a sweet Mother's Day as K&A took me to dinner and then to get dessert from Cheesecake Factory which we ate on our tailgate overlooking the city. We could have talked about anything, but these sweet girls wanted to talk about Friday. They asked all of the hard questions that darkness somehow makes it easier to ask, as I prayed...

"Lord please take away any fear or anxiety they have. Let them know you've got this". 

Maybe that prayer was really for myself. 

This past Friday Wyatt turned 12 years old. His birthdays are always special...On his 5th birthday we learned he had horrible eyesight & he got glasses. We learned he was having seizures a few weeks shy of his 6th birthday & on his 6th birthday he suffered a major concussion and spent most of the day at Children's with post-concussive headaches. He was baptized on his 8th birthday. His 10th birthday was spent in Uganda. This boy of ours has always kept us on our toes! 

But I completely expect Friday to be uneventful. -Surely lighting won't strike twice, right?- for now the knot in my stomach remains, and probably will until we are home and Wyatt is safely recovered. 

Lord help my unbelief. Give me greater faith. 

Very sweet friends of ours are battling their daughter's cancer, and just this week she had to have unexpected surgery to remove a brain tumor. Her mother's prayer before the surgery was from the song 10,000 Reasons, "let me be singing when the evening comes". 

As our sweet boy and tons of other 1st-6th graders sang this same song at our worship service this morning tears poured down my face. 

I ask for the same, Lord please let us {still} be singing when {Friday} evening comes. 

Thursday, April 9, 2015

Little Man Update

 Since we returned from Uganda (almost 2 years ago! Crazy!) we have been working with numerous doctors at Children's and UAB's epliepsy & neurology departments in Birmingham to figure out the best way to help Wyatt and stop his seizures. 

We knew within days of returning that epilepsy surgery, the only currently known cure for epilepsy, might be our only option. Since then we have gone through a myriad of tests, procedures , and medications (and yes we know about the marijuana trials for epilepsy but Wyatt's seizure type is not one that responds to this treatment. We do, however completely support this, and any other research, that gives families in this situation relief from this condition.) to determine the best plan for our little man. Who really isn't that little anymore, he will be 12 next month!!!

Right now Wyatt is on a combination of medications to try and keep his seizures to a minimum. There is no growing out of them, and there is currently no medication on the market that will completely stop them. So what now?

Today Wyatt had a series of scans done to give the epileptologists and neurosurgeons a "map" of his brain and structures. We spent almost an hour talking, asking questions, and gathering information from our neurosurgeon at Children's, Dr Blount. Dr Blount explained to us that because Wyatt's seizures are medically resistant, if we aren't able to do surgery we can expect his quality of life to continue to decrease. Surgery is his best chance for a seizure-free life. There is a new technology in epilepsy surgery called SEEG. SEEG is mapping of the brain using depth electrodes that are placed by a type of GPS-like guided technology called ROSA. Dr Blount, and our epileptologist, Dr Goyal, both feel SEEG would be a good option for finding Wyatt's seizure focus...the area where his seizures originate. Once the focus is found, we can then determine wether surgery to remove this area is possible or not. 

In the next few weeks Wyatt will undergo WADA testing to help determine his memory and speech areas of the brain. If this sounds familiar, it is because we tried this test before...and it didn't go well. Many changes have been made as to how the test will be administered this time so we are hopeful it will be more successful. 

While we love and are confident in our doctors at Children's, we have prayed alot and have decided to contact the Cleveland Clinic Epilepsy Center this coming week to inquire about them reviewing Wyatt's case as well.  

In the midst of all of this, Wes and I have been preparing to lead a team for two weeks to Uganda in June. We knew going into this planning that Wyatt's medical situation might prevent us from going, but because no one really knows when and if Wyatt's surgeries might happen, we do not want to tell God "no" when we hear him saying "go". Now, as always, it's up to Him to work it out! :) 

We are so thankful to our amazing families and awesome friends that have supported us, prayed for us, and carried us through this journey. We need you now more than ever! 

Some specific ways you can pray:
- First pray that we would keep our eyes focused on Jesus and that we would bring Him glory every step of this journey. Most days we fail miserably but we still want that to be our focus. 
- Pray for the upcoming WADA test, that Wyatt would do wonderfully and that the doctors would get a clear result of exactly what they needed. 
- This is kind of weird, but please pray that Wyatt's speech and memory are predominantly on the right side of his brain. If they are solely on the left side that drastically reduces Wyatt's chances for a successful surgery that doesn't affect his speech or memory long term. If they are on both sides, his chances for a favorable outcome are a little better. If they are only on the right they shouldn't be affected at all. It would be a miracle if they were solely on the right side, but that is what we are asking for!! :)
- Wyatt is very informed about all that is taking place. Please pray for his precious heart and that God would remove any stress or anxiety. 
- Pray that sweet friends that would encourage and support him would come into his life. Because he has so many seizures at school, other students tend to either avoid or tease him. There are exceptions of course but this momma's heart would love it these exceptions were the norm! :) 

This weekend Wyatt and I will be gong with Hunter Street's 5th & 6th Grade Choir on their weekend long mission trip. One of our key verses for this trip is from Isaiah 54:17. The kids will sing this as "no weapon formed against me will prosper". Right now the biggest weapon I feel we are under attack from is fear. We will be praying this verse for our family and so many others this week. 

Much love. 

Thursday, November 27, 2014


I know it's been a long time since we've posted, but today I wanted to share our thankfulness. Over the past year + since we came home unexpectedly from Uganda, we have struggled STRUGGLED.

I know I need to lift my eyes up
but I'm too weak
Life just won't let up
and I know that you can give me rest
so I cry out with all that I have left

But in the past few months we've felt the heavy sadness finally starting to lift from our hearts. Through the love and support of so many people, we have started to focus our eyes back on Christ and away from our circumstances. Some things have changed, but many things have not. The next year is again going to be hard, but for the first time in 15 months, our hearts are turned back to seeking God's will for our lives and our family. For that, and many other things, I am so thankful.

Thankful that God will never leave me or forsake me
Thankful that despite my circumstances, His promises are true
Thankful that He's given me a wonderfully flawed partner to do life with
Thankful for daughters that constantly challenge me to dig deeper, one intellectually, one emotionally
Thankful for a son who gives me a reason to smile every day
Thankful for a city with amazing medical care options
Thankful for a family that knows when to love on me and when to give me space
Thankful that when I could barely keep my head above water, He did.

His grace abounds in deepest waters

Friday, July 5, 2013

More On Wyatt…

Many people have been asking about Wyatt and how all of this started so I thought I would try to write about it here.  I apologize in advance for its length!

Wyatt was diagnosed with epilepsy after having several complex partial seizures 5 months before he turned 6 years old.  We were blessed that the first medication we tried worked for him and with the exception of breakthrough seizures now and then, we thought his epilepsy was well managed.  There were a few concerns I had and brought to his neurologist's attention, such as nighttime and memory issues, but I was assured they were nothing to be concerned about and we continued on our way.  In preparing for our trip to Uganda, our very first step was to meet with his neurologist where we were assured that he was no more at risk of seizure issues there then he was here.  Even with everything that has happened since, we still believe this to be true.  In the months leading up to our trip, Wyatt was having more breakthrough seizures but we were assured that he was going through a growth spurt and that we merely needed to increase his medication to get them back under control.

A few days after arriving in Uganda Wyatt had a small seizure. We were used to this situation. We called his doctor and then upped his meds. Same ol' song and dance. A few weeks later Wyatt had his first "hallucination". Obviously this was different then what we were used to seeing with him but he has had issues with overheating in the past so we thought that maybe it was related to the heat of Uganda and that maybe he wasn't getting enough water.  We spoke with his doctor, took him to the clinic on the ranch (where he tested negative for several tropical illnesses) and started him on a rehydration solution that we gave him several times a day, everyday for the next month.  He continued having these episodes every couple of days but other than that he was typical Wyatt!  He played soccer just about every day with his new Ugandan friends.  He helped the mission teams that visited with every project we had going on including mudding a school, repairing a playground and sharing the gospel.  We had no reason to believe, and his neurologist at home did not believe, that these episodes were related to his seizures or that there was anything worrisome going on with his health other than needing to stay hydrated.  Regardless, we made an appointment for June 15th with a great & very well respected british doctor in Kampala, under the advice of Wyatt's neurologist, just to ensure that his episodes weren't related to some illness that we had missed.

On June 14th we were hanging out in our den after Wyatt had gone to bed when we suddenly heard strange noises coming from his room.  Wes & I entered his room and found Wyatt in the middle of a generalized tonic clonic (GTC or grand mal) seizure that lasted about 20 minutes and required diazepam to bring him out of it.  The next morning we left early for Kampala.  I had a small bag packed for Wyatt & I along with our passports, just in case we ended up staying in Kampala in hospital or getting on a plane for home.  We met with Dr. Stockley and determined that Wyatt was completely healthy & that there were no known illnesses responsible to his condition.  There were only two things that had changed for Wyatt recently: 1)  he came to Uganda and 2) he began taking Doxycycline as a malaria preventative.  The doctor recommended that before we made plans to leave, we should take Wyatt off of the doxy for one week and see if maybe it was causing his episodes.  This coincided with Wyatt's neurologist's recommendations that these episodes were not seizure related and that they must be caused by something environmental.  Although we were both worried for our son, we were at peace with giving him one more week, without doxy and with another increase in his seizure meds, to see if this got rid of his episodes.

One week later, on June 20th Wes had gone to Kampala with the mission team from Mobile and I was at home with the kids. Wyatt wanted to sleep with me so we were watching movies in our bed as we went to sleep.  Around 5:00 am, June 21st, I was woken up by Wyatt having another GTC event.  This time I knew God was telling us it was time to get Wyatt home. After several teary eyed calls to Wes and hours on the phone with Delta & KLM, we got approved to fly home early.

In a total God moment, after being told we needed to get a letter from a doctor in Uganda saying it was medically necessary for Wyatt to go back to the US, Wes was able to see Dr. Stockley who knew exactly how to word his letter to get us home quickly and with as little cost as possible, while also making sure it was understood that Wyatt was medically sound to fly…because Dr. Stockley is the board physician for KLM in Uganda.  Of course!

Once we got back to the US, we went straight from the airport to the neurologist's office where we were told to check in to Children's Hospital the next morning.  After 24 hours of EEG we were told by the epileptologist (a neurologist who specializes in epilepsy) that Wyatt was having an uncountable number of seizures at night and that the episodes we originally called hallucinations were indeed seizures.  While this was not what we wanted to hear, it was definitely a relief to know that there was nothing we had introduced to his environment, including taking him to Uganda, that was causing Wyatt's seizures.  The doctor believes that it is possible that the stress of living in such a new and different environment might have contributed to the number of seizures, but that based on the number of breakthrough seizures Wyatt was having even before we left, that this event was a long time coming.  Over the next 2 days of continuous EEG monitoring Wyatt was given a new seizure medication and his blood levels were monitored carefully. Unfortunately he continued to have multiple seizures, especially at night.  After those 2 days another medication was added, more blood was taken, and we continued to wait to see what the EEG would show.  Again, we were disappointed to hear that he was still having seizures at night and that because now three different medications had failed to control his seizures, his condition was now labeled "intractable epilepsy".

With this new diagnosis our options for Wyatt's treatment have dwindled.  Over the next month or so he will undergo a series of tests to determine if he is a candidate for epilepsy surgery. While the prospect of brain surgery is terrifying to us as parents, we understand it is possibly our only remaining option and possibly the best opportunity for Wyatt to be cured of epilepsy.

The first of these four tests was an MRI.  He completed his MRI on Monday July 1st and it was clear.  This is a good and bad thing.  Good because they didn't find a tumor or any other growth but bad because abnormal brain activity with no known cause is much harder to treat.  On Wednesday July 10th Wyatt will have test #2 , a PET scan, and on July 29th we will check back in to Children's for a 6 day stay of EEGs and hopefully test #3, a SPECT scan.  Test #4 is a neuropsych eval to help determine where there might be gaps to help identify where his seizures are originating.  Right now it is scheduled for Oct 15th, but he is on the cancellation list and we have been assured that this date will be sooner then scheduled.  After these tests are concluded Wyatt's case will be presented to the nuero surgery group conference and they will make a recommendation either for or against surgery.

While we don't know or understand why all of this is happening now, or why God sent us to Uganda for 2 months only to call us home early, or what surgery means for Wyatt's future…we are more confident now than ever before that God is soooo in control!  Even though we are sad that we didn't get to accomplish all that we set out to do in Uganda, we know that whatever it was that God wanted done through us must have been done, or we would still be there.  Right now it is hard for me to think about anything other than my son but I am comforted by the absolute knowledge that there is someone that loves him more than I could ever dream of & that He knows exactly what is best for him and can make it happen.

It would be remiss of me to close this post without praising the awesome people that have lifted us up and carried us through all that we have gone through so far this summer.  First and foremost, our families have been beyond supportive, sending us care packages, sending endless text updates on everything going on at home, making doctor's appointments for us when we got home, researching medications and syndromes, helping us unpack and do laundry, while listening to us, holding us and loving us through it all.  Secondly, our church family has truly shown us what a "church body" really looks like.  They have called, texted, emailed, mailed and face timed through our whole time in Uganda and fed, cleaned, visited, laundered and loved us through our time since we've been home. We have been overwhelmed by how they've loved us. Thirdly (is that a word?) we must thank our friends all over the world that have checked in on us, texted us or sent us a message on Facebook just to let us know they were thinking about us or praying for us.  We truly truly consider ourselves so lucky to know and love everyone of you! Thank you!

Sunday, June 23, 2013

Hey guys,

It is with a heavy heart that I have to inform you all that we will be
cutting our trip thirty days short. You may already know by now that
our son Wyatt’s health has been deteriorating since arriving in Uganda
in early May. What started out as spells with some hallucinations
every once in a while has turned into full on grand mal seizures so
strong that only a shot of diazepam will bring him out of it. We
originally believed they were a result of the heat and dehydration but
they recently got worse. We have taken him to the clinic here on the
ranch, have seen a highly respected doctor in Kampala, have consulted
with a therapist and have spoken directly with his doctor at home
numerous times.  None of their suggestions or recommendations has
worked.  At this point in our trip Wyatt is having about twenty
episodes, as we call them, a day. The diazepam seems to be doing very
little now in the way of controlling them and Alicia and I have come
to think that the episodes he has been having are in fact just little
seizures that build up to a much bigger seizure event. It has been
recommended to us by his doctor here in Kampala that we get him home
to see his neurologist as soon as possible. The doctor also suggested
that we keep him heavily sedated until we can get him home. His reason
for this is that if Wyatt were to have an episode in the airport
before leaving, or while in flight, the airline could ground us
wherever we are until he is stable enough to fly.  Please be praying
that doesn’t happen!!

As you can imagine all of this has left us pretty heart broken. No one
in our family is ready to say good-bye. The whole community here that
we have been working with seems to be heartbroken as well. I believe
that they have fallen in love with our family just as much as we have
them, which makes all of this that much harder.  It’s crazy how much
our family fits here. I find myself more confused now than ever
before.  I keep thinking, why only two months? What purpose can us
leaving early possibly serve? And While I know God doesn’t owe me an
explanation I pray with all my heart that he will be gracious enough
to give one. Maybe he’s already given it? Maybe because I’m so close
to it I can’t see it?

I have been struck with an overwhelming since of guilt about the
reason for our early departure. Why are we so blessed to have the
option to leave the country and seek the best medical care in the
world? What makes us so special? I can’t help but wonder what the
Ugandans think about all this. They don’t have the ability to leave.
They have to stay where they are, in their sickness, in their pain, in
their distress. I’m sorry for rambling or if it seems as if I’m
whining. The burden I feel for the people here as well for the health
of my child are each so heavy that I feel as if I might suffocate
under the weight of it all.

Before I end this update I would like to thank you all for your
prayers and for all of the letters of support we have received while
in the field. Everyone here is in total awe of the group of supporters
we have backing us up. We have been posting your letters up on a wall
in our house. Most, if not all, of the people who stop by the house to
visit (which is many every single day) end up standing in front of the
wall reading your letters. Your letters have been an awesome testimony
of the unity that should be seen in the body of Christ. Your letters
have encouraged us as well as all those who have read them, Muzungu
and African alike.

While we end this trip with sadness, we look forward to seeing what
God has in store for our family here at the ranch. Even though God has
chosen to end this trip early, none of us feel that he is closing the
door to us serving here.

Once again thank you all so much for your love and support.

God Bless you all,
The Wilbanks family.

P.S. We just did our Jesus Calling devotional today and we wanted to
share it with you…

Let my love stream through you, washing away fear and distrust.  A
trusting response includes me in your thoughts as you consider
strategies to deal with a situation.  My continual presence is a
promise, guaranteeing that you never have to face anything alone.  My
children teethe on the truth that I am always with them, yet they
stumble around in a stupor, unaware of my loving presence all around
them.  How that grieves me! When you walk through a day in trusting
dependence on me, my aching heart is soothed.  Gently bring your
attention back to me whenever it wanders away. I look for persistence
– rather than perfection – in your walk with me.  Psalm 52:8;
Deuteronomy 31:6; Ephesians 4:30

Thursday, May 30, 2013

Down The Red Dirt Road

Showing the Jesus film in a nearby village
It never hits me (the effects of what God is doing in my life that is) until I stop to type an update. This is the main reason I don’t do them very often. Like a child stomping his foot at the correction of a parent, I stomp a mental foot at God, the last attempts of desperate
man to keep his emotions inside the box.

I like my box. I have many of them...cut part of a thumb off, put it in a box. Get hit in the face
with a bolt from a garage door spring, put it in a box. Take my family over 4 thousand miles, away from everything they’ve ever known, only to have the airline change one of our flights, then loose ALL of our luggage, then to have the house that we are supposed to be living in
still be under construction, and the house we do stay in for the first four days flood, TWICE!  That’s fine I can deal with all that stuff going wrong. I fold it up nice and neat and I put it in a box. And, while I may get a little frustrated, I don’t get mad. I box up all the emotions that come with all the different things I’m faced with and put on my blinders and I make it happen. I get busy making it "Do what it Do." As I begin to shut everything else out except for the fire that’s in front of me, God just smiles and then turns up the heat. As soon as I think I’ve got a handle on one problem He drops a sack full of other problems in my lap. Then He continues to rain down problems on my head until I give in and surrender. Surrender my pride, my control, my stubbornness...He crushes me under the weight of my circumstances until I hit my knees and cry out in total submission for the rescue that only He can give.  He recalibrates my thinking and forces me to fix my eyes on Him. To walk one step at a time. To depend solely on Him and His provision. He shows me that the portion He gives me is enough and to be satisfied in Him and Him alone.

As I type and reflect on all that has happened in our first three weeks in the field I can see how all the issues our family has faced since our arrival on the ranch, and before, were all designed by God to break us, stretch us, and strengthen us. As I type my soul rejoices
in the mercy and grace of my Lord. Who are we to warrant such attention from the creator?  Fixing my eyes once again on Christ has allowed me to fall in love once again with the people that He has called me to serve.

On a lighter note a gecko just fell about fifteen feet and landed on my keyboard which almost sent me backwards out of my chair..  And, for good measure a bat, that I assume was friends with the gecko, just dropped a present on my keyboard splattering me in the process☺ Man I
love this place!!

The team from Hunter Street Baptist Church arrived last week and has been doing a great job! They have started the refurbishing of the playground at the primary school on the ranch and they have also provided the funds and some of the labor to repair a well in a remote
village. This well had been down for six months and the villagers had been gathering water from a nearby swamp. I cannot overemphasize the importance of this repaired well to these people.  In appreciation for the teams work, the village members presented them with a mess load of matooke and one very scared rooster. Last night they showed the Jesus film in a nearby village and saw 26 people come to a saving knowledge of Jesus Christ. God is so good!!

Alicia is doing great! She has been talking with the headmistress of the primary school on the ranch about teaching dance motions and is also going to start teaching computer classes to some of the ACM staff. She has been working hard on team schedules and coordinating
activities through the various departments and ministries and hopes to begin a bible study with some local friends soon.

The kids are also doing wonderful and are making lots of new friends. The girls will be working at the primary school helping students to learn English and will also be working some in the secondary school where they have already begun making friends. Right now they are jumping in with the team and have helped with the playground restoration, sorting clothing and helping with the children's department. Wyatt is doing very well just being Wyatt. :) He draws a crowd of children around him everywhere we go. He has been a great bridge for the rest of the family to get to know our new community.

I have been invited to teach a basic electricity lab at CLA by a CLA student. I hope to start  that in the coming weeks and am excited to see where God takes it. There is a label here that is placed on kids who wish to learn trade. It’s a label that I’m all to familiar with.
It is one I think all of us "academically challenged" students are given and that is that we are stupid or slow. And because of that label, kids who would be better off learning a trade stay in school way longer than they should only to ether flunk out or drop out later, wasting precious financial resources and destroying their self-esteem in the process. I know to some that statement may seem harsh but it’s the truth and I am speaking from my own experience. 

When I was in school I felt dumb, slow, less than the other students in my classes, always in fear of being called on to read aloud or, even worse, that I would have to spell something on the board in front of everyone. I became the class clown to cover my fear of being found out. It wasn’t until I went to technical school that I excelled as a student. I know now looking back that for me to have continued my education would have been to waste a lot of my time and my family’s money. Every child needs a basic education but not every child needs or should seek a collage education. And that’s OK!! I make a very good living with my technical education, so does the carpenter that works out of ACM’s carpentry school here on the ranch. This man, who would love students and has a curriculum to teach, can't get students to come and learn his trade because of the "stupid" label. This is not just a Ugandan problem I might add.  Anyway, I have no idea where to even begin to change that type of mindset.  Any advice you all might have on the matter would be greatly appreciated.

Our family would like to thank you all so very much for all your prayers, texts, and for all the letters and goodies that you have sent. God has used all of it, and continues to use all of it, to strengthen us and embolden us in our toughest moments.

Prayer requests

1. For continued protection of our family for the rest of our trip.
2. For protection for the Hunter Street Baptist team for the rest of their trip.
3. For safe travel for Satsuma First Baptist as they join us on the field
4. For safe travel the Bennett team as they join us on the field
5. That will bless the areas of ministry that our family will begin in the coming weeks
6. That God will open the doors to new areas of services
7. That we will not allow ourselves to be distracted by the schemes of the enemy.
8. For a visitor on the ranch who is praying about extending her stay.
9. Lastly and most importantly, that God’s name will be glorified in all He does through us..

*Ssalongo Wes*

Friday, May 17, 2013

Update from Alicia!

Wyatt and friends

Home on the ranch

Some highlights from our trip to far...

  • Wyatt singing "thank you Jesus" in swahili on the plane with a young woman from DRC (he learned the song in choir at our church!)
  • Hearing Dolly Parton over the radio in the mall in Kampala singing "Joleen"
  • Susan, our helper in our house, cooking us an amazing rice & beans dinner our first night
  • Flooding Wayne's house...twice!
  • Sharing a lunch of PB sandwiches with Wyatt's new Ugandan friends, Caleb & Opia
  • Susan's chipatis!
  • From Katie Mae "I love that here, everywhere you go you see people's footprints"          (she meant because most of the Ugandans walk barefoot, but I think about all of the people who have made a difference in this place & have left their prints all over :)
  • Drinking hot tea on our front porch after dinner, admiring our amazing open area of green grass & crooked trees.  (The kids don't see what Wes & I find so amazing about it:)
  • The girls laughing every time Susan calls me "mommy"
  • Watching the cows get dipped
  • Ashley coming up with a bunch of great ideas for revitalizing the primary school playground. (Right now it is pretty unsafe, but that is one of the projects the Hunter St team will be working on week after next)
  • Long walks with the kids
  • Calling home & running out of minutes...again...
  • Homemade bread
  • Watching a baby cow be born on mother's day!
  • Long talks with Susan about the differences between America & Uganda
  • Language & cultural barriers galore!  Making for some pretty funny situations!
  • Praying with the blind man we keep running into
  • Walking to our friend's house to find Wyatt on the porch surrounded by Ugandan children playing UNO
  • Preparing for Wyatt's surprise birthday party feast with all of the mzungus on the ranch!
  • So many friends coming down with malaria...Carlos, Caleb, the clinic nurse Florence, and many Ugandan children.

Thank you all for your prayers!  Please keep them coming.  We love &
miss you all!!