Where is home?

We're home! Well, sort of. We arrived in Brazil a few weeks ago and have been settling in again in Soytown. We really enjoyed the last 6 months in the States, but there was definitely a transitional, non-permanent feel to it.

Knowing that our time in the States was limited, we really noticed and appreciated the little things (like being closer to family, church services in English, nursery, speaking in English, carpeted floors, clothes dyers, dishwashers, central air conditioning, asiago cheese bagels from Panera Bread, Mexican food, frozen vegetables, pop-biscuits, chocolate chips, restaurants that open for dinner before 7:00 at night, Walmart, second-hand stores, smooth roads, taking a walk with a double stroller and not being stared at, changing seasons, hot water from the tap for washing dishes, toilets that flush toilet paper, etc). We also began to miss things about Brazil (like tile floors, singing at church in Portuguese, speaking in Portuguese, picanha (a cut of beef), farofa (manioc flour), good coffee, atacadão (a huge bulk grocery store that always has the best prices), receiving virtually no junk-mail, the community pool and having summer year around, Mali (our dog), not feeling a desire to watch much TV, less commitments, more freedom to do things spontaneously with friends, etc). We feel split between two homes and two different worlds -- the U.S. and Brazil.

Not that I'm complaining. I think we have the best job in the world, even if it means moving and traveling a lot. Mike and I counted that we had lived in eight different cities by the time we were married five years! Here is a quick list of the places we've lived in the last six years. The places in green I consider real moves as we had to pack up everything we owned to move there while the rest are places we've stayed for two months or longer for coursework, furlough, medical, etc.

Grants Pass, OR (3 months)
Klamath Falls, OR (9 months)
Dallas, TX (6 months)
Holland, MI (6 months)
Cuiaba, Brazil (8 months)
Rubbertown, Brazil (1.5 years)

Brasília, Brazil (2 months)

Zeeland, MI (6 months)

Soytown, Brazil (6 months)

Dallas, TX (5 months)
Soytown, Brazil (June 2010-present)

This doesn't include stays at the mission base for Emily and Lydia's births or other extended stays for meetings, workshops, etc. In case you're wondering, packing is not one of my favorite things to do!

Packing the truck to go back to Soytown

Our "job" also requires us to travel around the U.S. to see our partners. Although this is a blessing to be able to reconnect with people, it can also be exhausting, especially traveling with kids! We realized that Emily had been in 17 states by the time she was 17 months old! In Brazil we live more than 10 hours from the nearest airport, so at times it seems as though the car is one of our second homes!

Our little traveler -- Emily at 15 months

Thankfully we've been blessed with two very adaptable girls who also are great travelers. However, it is hard to answer Emily when I tell her we're going home and she asks, "Where's home?"

I recently watched a movie about a couple that moved a lot. The wife lamented to her husband, "Where is home?!" and the husband answered, "Home is where we are." I feel that this really sums up our family. My hope is that what determines our home is where our family is and not where our house is located. One added advantage of moving a lot is that it helps us remember that earth is not our home, but heaven.

~Kelli

P.S. This was the verse from my devotional yesterday -- how appropriate!

Numbers 9-17-18

"Whenever the cloud lifted from above the Tent, the Israelites set out, whenever the cloud settled, the Israelites encamped. At the Lord's command the Israelites et out, and at his command they encamped. As long as the cloud stayed over the tabernacle, they remained in camp."

Our daughter -- the artist.

We've found that Emily has a flare for art. Well, sort of. A couple months ago we were getting ready to have guests over for dinner when Emily found us and dragged us into the dining room saying, "uh'oh." This is what we found:



In case you're wondering, dry erase marker comes off with antibaterial hand gel.

In honor of Earth Day, we found that Emily has turned to renewable resources. I had put Emily down for a nap and about 45 minutes later I was sitting in the living room and there was suddenly this strong odor. Strangely, it smelled like poo. After investigating I found that Emily was indeed not taking a nap, but had taken off her diaper. Unfortunately it was filled with little poo pellets which were now scattered all over the floor. I immediately said, "nooooo" but then I looked up. There were dark markings all over the wall. It took me a minute for it to register that she had used her poo as a crayon and decided to decorate the wall! After I got over the shock, I thought it was totally hilarious. Mike did not. Probably because I had to leave at that point to take Emily to speech therapy, and he got to stay home with the mess (and the smell). Sorry sweetie!



Do I hear a develish little laugh at the end? When we returned from speech therapy, Emily did very well about cleaning up (and we did give her a bath afterwards). I actually think she enjoyed it and so it wasn't quite the punishment we had hoped.



It's always fun for me to follow the thought processes of kids. Things we never think to point out (such as don't draw with poo) seem totally logical to them. Ah, life with a two-year-old! We're looking forward to seeing where her curiosity will take her in the days to come!

~Kelli

Lydia's Helmet Therapy

Before Lydia's surgery, the surgeon who performed the endoscopic procedure told us that 50% of the treatment is the surgery and 50% is the helmet therapy.  Since the brain is normal in craniosynostosis, but the skull is not, the brain continues to grow, but if it isn't allowed to grow in one direction, then it will grow in another.  The surgery reopened Lydia's fused sutures and the helmet helps mold the head allowing for places that overgrew previously, to be held and places that weren't able to grow, to grow extra.  Since over two-thirds of physical brain growth occurs in the first year of life, wearing a molding helmet (or cranial orthosis) as much as possible early on is essential.    

Being fitted for her first helmet

It's now been almost two months since Lydia started to wear her helmet.  I have to say, it really doesn't bother me as much as I thought it would.  I was first disappointed that so many of Lydia's baby pictures would be of her wearing a helmet, but it's become such a part of her now that we hardly notice it.  I've actually kind of enjoyed being able to decorate it every few weeks with different stickers.

                                             

1st decoration -- Butterflies and dragonflies

2nd decoration -- Hearts

3rd decoration -- Tulips

4th decoration -- Apple blossoms

Five weeks after surgery, I took Lydia in for her first helmet adjustment.  They took a scan of her head and gave me a printout.  The most change can be seen in her forehead which is what we were hoping for.  

  Profile change after 5 weeks.  

Birdseye view after 5 weeks.  (the hole is part of the the imaging and not her soft spot)

Before surgery her cephalic index was 91%.  A normal index is between 78-80%.  After 4 weeks in the helmet her new index is 88.5%.  We're getting closer.  Lydia is schedule to get a new helmet the end of April.  I'm eager to see on paper how close she is getting!  We'll keep you posted!

~Kelli  

God's Provision!

We have to share with you God's great provision!  Just a few months ago we were feeling totally overwhelmed as we faced unexpected travel, medical, housing, and tuition costs.  We didn't know how in our own strength our costs would be met.  Fortunately, God is known for showing His strength when we are unable to do things on our own (2 Cor. 12:9).  From gifts from people we have never even met to medical costs being slashed inexplicably, we are just in awe!  We believed that God would provide, but it is still exciting to see how things are coming together!

Medical
*Hospital (one night in the pediatric ICU): originally $14,796, we paid $991  (Over $11,000 was written off!)
*Anesthesiologist: originally $1778, we paid $85!
*Cranial helmets: originally $3700 each (totally outrageous for a piece of nylon!), we pay $400 each (covered by a generous gift from an individual!)
*Surgeons: originally $15,600, waiting for insurance to process to find out our responsibility

Tuition
*40% off tuition scholarship
*$1000 grant
*Remaining paid by a generous individual donor

Housing in Dallas
5 months rent: generous gifts from family

Travel
*Initial flights to the States: love-offering from Kelli's home church
*First trip from Dallas to San Antonio, lodging during the week of surgery, and some food costs: Children's Crainofacial Association financial assistance grant
*Return to trip Brazil and future trips to San Antonio for Kelli and Lydia: awaiting costs

We may still some significant unknown costs, but we are confident that God will continue to provide in amazing ways!

~Kelli

Why not us?

I've been wanting to write this post for a while, but I finally have a few minutes when both kids are sleeping and I feel I have my thoughts better organized.

As a little background, our daughter Emily was born with a cleft palate (soft palate only; type: pierre robin sequence) and our second daughter Lydia was born with craniosynostosis (premature fusing of some of the cranial plates).  In the days after Lydia was diagnosed I hesitated to send out an update because I was concerned people would start thinking, "Wow, what's wrong with them?"  I have to confess that during the first few days I had this thought as well.  How did we get so "unlucky" to have two children with "problems?"  Why us?  However, the more I think about it, the more I think, "Why not us?"

Here are some statistics about birth defects (thanks to the March of Dimes and Center for Disease Control and Prevention):

Cleft lip/palate: 1 in 700 births
Craniosynostosis: 1 in 2,000 births
Down Syndrome: 1 in 800 births
Spina bifida: 1 in 2,500 births
Cerebal Palsy: approx: 1 in 500 births
Autism: approx. 1 in 150 births, (1 in 58 boys)
Heart defects: 1 in 100 births

In the United States, a baby is born with a birth defect every 4.5 minutes.  1 in 33 babies born in the United States has a birth defect.

After reading the section in What to Expect the First Year about common birth defects, I came to the realization what a true miracle it is to have a completely healthy child.  When you think of all the conditions that have to be just right for a baby to even be coceived, much less the millions of connections that happen in order to form an intricate person that can move and talk and think and feel; it's truly amazing.    
 
I guess it surprises me when people just assume that they will have a perfect child (or children) and look questioningly at those who don't.  Although we seem to have gotten more than our fair share as far as the statistics go, there's never a guarantee that your child will be normal.  Just ask the parents of Nick Vujicic (born with no limbs -- www.youtube.com/watch?v=K5Of0JlUstk&feature=related ) or Juliana Wetmore ("born without a face" -- www.julianawetmore.net/story.php).  Although each has faced difficulties, God has used them as an incredible witness for Him.  

We look forward to seeing how God will use Emily and Lydia's "problems" for His glory, especially among the people we work with in Brazil.  Typically in their culture, a baby born with any type of problem is not given a chance to live.  What a great witness our girls can be to show these people the value of life!

So please don't pity us or look down on us, but rejoice with us in our two girls who were perfectly created for His purpose.

~Kelli

"Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life."  -- John 9:2-3

Lydia's Surgery

As I write this, Lydia is sleeping and her monitors are beeping away here in the pediatric ICU.

  Lydia after surgery

It's been sort of a roller coaster ride since yesterday morning, but we are so thankful to have the surgery behind us and we're praying that she will have a quick recovery.

The day before the surgery we went in for Lydia's head scan.  It's really amazing what they can do with technology these days.  In two seconds a little red light went over her head and within seconds the image of her head was on the computer screen.  

Lydia's first head scan

Aren't I cute?

After the scan, we met the parents of the three other babies that would have surgery the next day.  It was neat to meet other parents who were facing the same procedure and were going through the same emotions.

After we signed release forms allowing research to be done on the bone that would be removed during the surgery, we met with the the surgeon and were told that surgery would be at 11:00a.m. and to come to the hospital by 9:00 the next day.  That evening we got a call that said that the surgery was going to be at 8:30 and that we needed to be at the hospital at 5:30a.m.  So, we figured there was a change in the scheduling of the four babies having the endoscopic surgery.

After we arrived at the hospital, we were told that the call we received the night before was a misunderstanding between the hospital scheduling and the craniosynostosis surgical team.  We were reassured that Lydia was still to be the third baby of the four to have surgery.  At 10:00 there was an unrelated emergency surgery within the hospital, so our surgical team lost one of their operating rooms.  This put them behind schedule.  Finally at 12:00, the anesthesiologist prepped Lydia for her surgery.

People must have been praying, because despite not eating since 4:00 in the morning, Lydia napped and wasn't too fussy for the eight hours before the surgery.  This was truly amazing as she typically likes to eat every 3 hours, even at night.

At 2:00, we got the word that the surgery was over and that they were sewing up her incisions.  A little while later we met with the surgeons and were told Lydia did great and that they were pleased with the surgery and that we should get a very good result.

   Dr. Jimenez (pediatric neurosurgeon), Dr. Barone (pediatric plastic surgeon), "Wai" (RN)

Shortly afterward we were taken back to see Lydia.  Her head was pretty swollen, especially the areas where the bone was removed.  She had two 1-inch-long incisions, but no bandages.

 1st Post-Op close-up

Lydia with Mommy and Daddy

At first Lydia was really fussy.  She'd dose for about 20 seconds, then start crying again.  They gave her some morphine and that helped slightly, but she still seemed like she was having a lot of pain.  It was so hard to see her like that and not be able to do anything.

The nurse was quite concerned because Lydia's heart rate was between 200 and 230 beats/minute and even when she was calm it was between 180 and 190 (normal 130-150).  She said the high heart rate could be due to pain, dehydration, or a loss of blood.  They took a blood sample and her hematocrit came back as being 26 (it was 35 before surgery, 31 immediately after surgery).  They said if it got down to 17 they would have to do a blood transfusion.  They also started monitoring the size of her head to see if her fast heart rate could be an indication of internal bleeding.

 Trying to find out what's wrong

Finding out that the nurse was concerned and that there might be a chance of internal bleeding made our stomaches drop and we both almost broke down and cried.  Later a team of doctors came in and tried to determine what could be the problem.  They concluded to wait two hours to see if Lydia would have a wet diaper so that they could rule out water retention.

Just before the two hour limit, Lydia had a wet diaper, which was reassuring.  The nurses worked to get Lydia to relax and fall asleep and her heart rate slowed down to 170 bpm.

Around 3:00 in the morning, after I tried feeing her I noticed a lot of blood and saw that her IV had come out.  The nurses tried and tried to start a new IV but didn't have any luck.  The nurse measured Lydia's head again and it had increased slightly.  She threw up her pain meds and later she started choking and then spit up some liquid.  The nurse took a sample of her blood and said that if her number went down, that they would do a CT scan of her head to look for internal bleeding.  I was so worried!

About 45 minutes later the results of the blood test came back and they were fine.  Her stats have stabilized and her heart beat is now in the 130s.  They are concerned that she hasn't really been eating.  She has quite a bit of swelling still, but when she's awake, her eyes are big and open.  Dr. Jimenez stopped by and said that she looks great.  He said that how she looks now would be after a whole week with the traditional, more invasive surgery.  Wow!  I felt like the recovery for this less-invasive surgery was hard enough!

A little while ago, another neurosurgeon stopped and said that Lydia's numbers look good and she should be able to go home today.  What a relief!

Lydia this morning (complete with an IV, blood pressure cuff, heart rate toe monitor, and electrodes)

We praise God that Lydia is doing better and we thank you for your prayers for Lydia.  Wow, it was so comforting to know there were so many people lifting her up in prayer.  Please pray that her swelling will go down, that she will start eating well, and that she will have a quick recovery!

~Kelli

Planes, Train, and Automobiles

We finally arrived in Dallas after three days of traveling.

Day 1
We left Anápolis, Brazil at 5:00 in the morning, drove an hour to Goiania for our 7:30a.m. flight.  Just after we got through security at the airport, Lydia had a "blowout," dirtying her sleeper and we forgot to pack an extra change of clothes for her in the diaper bag.  The bag we had planned on taking with us on board the airline insisted on checking.  So our little baby was semi-naked for a few hours.  Poor thing.  

The time for our flight came and went and at 9:00 we were told to go to the ticket counter because our flight was canceled.  Our new flight left at 12:50, so we had enough time to enjoy our $80 reais ($50 U.S.) meal vouchers (they counted us as four adults) and we were able to get some clothes for Lydia.  :-)

Lydia's first plane ride; Emily's already sick of it

Unfortunately our new flight not only got us into São Paulo five hours later, but it also got us into a different airport located a hour away from our original destination.      

On the go!

After arriving in São Paulo, we had to wait an hour for the shuttle bus to take us to the right airport.  The bus ride took a hour and poor Lydia dosed on and off the whole trip, waking up every time we stopped for traffic or a red light.  We finally arrived into the right airport and then had to wait nearly a hour for our shuttle van to take us to the hotel.  During which, moments before we were able to change Emily's diaper, she leaked all over her only pair of pants which she needed to wear for the next two days.  We hand-washed them at the hotel and then dried them with the hotel room hair dryer.  Are we having fun yet?  Arrived at destination 9 hours late.  

Day 2        
Left hotel at 6:00 in the morning.  Caught our five hour flight to Bogotá, Colombia.  Emily enjoyed the movies, especially because the wide screen TV for our section was right in front of us.  Lydia did well and liked sleeping in the bassinet.

Asleep at last!  Do they make one of these in an adult size?

Arrived in Bogotá and went through security.  Then tried to keep two children happy for our nine hour layover.  In case you were wondering, nine hours is a LONG time!!!  The airport was very warm, okay, hot.  Emily took a nice nap but Lydia stayed awake most the time.  Doesn't she ever need to sleep?!  Fortunately we met a neat Brazilian family who we chatted with for most of our layover.

At last we boarded our plane for a four hour flight.  Emily slept pretty well on the plane and Lydia finally conked out half way through.

We arrived into Miami after 1:00 in the morning and arrived at our hotel about 2:00 after going through immigration and customs. Besides a couple very short cat naps, we were awake for 25 hours straight.  What a long day! 

Day 3
Woke up at 7:00, got ready and took a taxi to the TRAIN station and took the Tri-Rail 10:20 train to Fort Lauderdale.  Our 12:50 flight actually took off at 1:50, making us anxious about our 40 minute connection in Austin, TX.  Three hours later we landed in Austin and found that our next flight had been delayed by 30 minutes and so we made it!  Our bags did too!  Poor Emily kept saying, "More night-night?" and Lydia kept saying that in the only way she knew how -- by crying.

More night-night?

We arrived into Dallas at 5:00 at night, 63 hours after we left home.  Good thing we saved enough money to make this trip worth it.  We're glad to be here safe and sound with our bags and to have friends who have winter clothes for us to borrow!  It's cold here!

~Mike and Kelli