Lydia is 1!

Where did this last year go? I am amazed that Lydia is already one year old! A lot has happened this last year -- Lydia's surgery, living in the States for almost six months, moving back to Brazil. However, now that her birthday is here, it seems as though the last year flew by.

I'm trying to keep up my mom's tradition of making a special cake for the girls' birthdays. As soon as I found a package of ladybug stickers for Lydia's helmet, I knew what I wanted to make for her cake. My mom found a dress with ladybugs for Lydia, so I knew there was no backing out!

I stayed up until 3:00 in the morning, baking the yellow and chocolate cake from scratch, making the icing, and decorating it, but I think it turned out pretty good.

Lydia's ladybug cake

We invited a few friends over to enjoy some cake and ice cream, but most of the pictures are ones we took before we cut apart the masterpiece.

Lydia and Emily

I had to add a couple pictures of Mike and me since usually our blog is limited to showing pictures of the girls.

Lydia and "Mommy"

Lydia and "Daddy"

I caught this one right before she scooped a finger full of icing from the cake

I had to add one picture of Lydia with her helmet that inspired that cake design. Although I think she was pictured-out by the time we put the helmet on.

Ladybug stickers on helmet, ladybug dress, and ladybug cake

Oooh, it's squishy.

Yay! I made a mess!

Lydia's mouth was sooooo red by the time she was done!

Happy birthday Lydia! It's been a crazy year, but you are such a trooper! You always bring a smile to our faces and we look forward to see what the next year holds!

~Kelli

Top 10 Helmet Comments

When we first did research for Lydia's surgery, we discovered that she would need to wear a molding helmet for a year to 18 months. I have to say, I wasn't looking forward to this, but I've found it hasn't been so bad. I actually think she looks adorable in it and I've found that I am able to spread awareness about craniosynostosis.

It is amazing how often we are approached with questions about the helmet. It really is a great conversation starter! Over the last 9 months, we've collected quite an interesting set of comments and questions. Here are our favorites. I've added some of the comments I would like to say sometimes in parenthesis.

10.

What's with the helmet?

(Sky diving accident -- said with a straight face)

9.

Does she wear that because she falls a lot?

(Yes, I am the worst parent in the world. Or just the most overprotective)

8.

She looks like a football player. or She looks like an astronaut.

(The competition is really tough these days -- you got to get an edge somewhere. or What? It's not Halloween today?)

7.

Where can I get one of those?

(Just go to your local orthotist -- they're on sale for a bargain price of $3,700!)

6.

Is that a motorcycle helmet?

(Who needs car seats? Now all you need is a helmet and your baby can ride a motorcycle!)

5.

Does she have to wear that?

(No, we're trying to start a fashion statement)

4.

Is that the new child safety requirements for riding on airplanes?

(Can you believe the child safety laws these days?!)

3.

My kid had a flat head too.

(As my one friend likes to kindly mention, well, this was a little more than a flat head, she had brain surgery!)

2.

Does she sleep with it?

(This is one of my favorites as it always comes after I say that she wears it 23 hours a day, as though sleeping would not be included in the 23 hours a day.)

and finally...

#1.

Oh, she's so cute. She looks like... like... an alien.

(This was said by the flight attendant on Delta. Now, I think she meant to say astronaut, but alien came out instead. I think English wasn't her first language).

It's been interesting having a baby who wears a helmet, but 99% of the time we forget she even has it on. It's so much a part of her that once in a while I'm surprised that people ask about it. Although we've been on the receiving end of some interesting comments, I feel that the helmet is such a gift that enables my baby to have a beautiful looking head.

However, as I'm asked about the helmet for the 100th time this week, some of these times I'll give my favorite quick answer -- she dropped from heaven but the landing wasn't very soft!

~Kelli

Lydia's Appointment with the Neurosurgeon

A year ago, we learned that Lydia had a condition called “craniosynostosis.” As a little background, this is condition in which one or more of the sutures (space between the cranial plates) fuses prematurely. These spaces allow the brain room to grow.

Fortunately, with craniosynostosis, the brain is normal and still wants to grow. However, it will grow in the path of least resistance. Thus, in Lydia’s case, since the brain couldn't grow forward like it wanted to, it instead grew wider.

Thus her treatment was two-fold. Part 1 was the surgery to reopen the closed sutures.

Part 2 is helmet therapy for 12-15 months to help mold the head to a more normal shape.

Many people think that the helmet is for protection, but rather it is to hold the areas that overgrew before surgery and allow her forehead to overgrow in order to catch up. It is so important to catch the condition early since almost 2/3 of physical brain growth occurs in the first 12 months of life! This is why the helmet is able to work so well.

We are really amazed at the results. The surgery that Lydia had has only been available for the last 6 years. There is another more traditional surgery that is available, but it is much more invasive and I believe the results aren’t as good. We were blessed to be able to have Lydia’s surgery performed by the surgeon that pioneered the new procedure!

Lydia with Dr. Jimenez

Our 9-month post-op appointment went great. There is a ratio that the doctors take that measures the width of the head vs. the length. Normal is around 80% (meaning that a normal person’s head is somewhat longer than it is wide). With Lydia, she started out at a 91% meaning that her head was more like a circle. At Lydia’s 9-month post-op appointment she measured at an 80%! The doctors also give us a scanned image of her head showing the before and after images side by side.

Bird's eye scan, pre-op and 9 months post-op (the 'holes' are just part of the scanning and not her soft spot)

Side view scan, pre-op and 9 months post-op

At this appointment, the surgeon showed me pictures that he had taken the day before Lydia’s surgery. I was shocked. I hadn’t remembered how bad her head shape was! Here are her pre-op pictures and underneath how she looks to day. I think the difference is quite dramatic!

Day before surgery, side view -- notice the area around her eyes and how the top of her head had grown higher and how the back of the head was becoming flat

Today, side view

Day before surgery, bird's eye view -- notice how wide it had grown and how round

Today, bird's eye view

Day before surgery, front view -- notice how her eyes slanted downward and her uneven forehead

Today, front view

The doctor said that since Lydia’s head is looking so good, she will be able to end helmet therapy 3 months early! Thank you for your prayers! We praise the Lord for such wonderful doctors and medical care and how great Lydia looks. I know I will never take a round head for granted again!

~Kelli

Lydia's Trip to the States

It was almost three months since we returned home to Brazil, but it was already time to travel to the States to get Lydia's third and final helmet.

Our trip started with a 14.5 hour bus ride from "Soytown" to the capitol. Lydia did great, falling asleep after the first hour and opening her eyes every time we stopped, which was every hour or so, and only cried for maybe 20 minutes of the whole trip.

We were picked up at the bus station by some friends and stayed with them during the day. That night we took a 8.5 hour plane ride to Atlanta, GA. Fortunately, I had an empty seat next to me, so the flight was much more pleasant than I expected. However, Lydia did not sleep as much on this overnight flight as I had hoped.

Lydia on the plane

We had a four hour layover in Atlanta and Lydia and I had a great time touring all the terminals. Lydia was quite the hit with fellow passengers!

At last it was time to board our second flight. Lydia was not very happy on this flight. I had the privileged of sitting by someone who was NOT a baby person and every time Lydia's toe touched him, he let out a huff. Lydia screeched and wiggled for the first hour and I was ready to scream myself, but at last, she finally fell asleep. Two hours later we arrived in San Antonio, TX and were picked up by our friend there.

Now I have to tell you about our friends. The day Lydia had surgery, there was another young couple with a little boy who was also having the same surgery.

The day after surgery with our little babies

We immediately connected with this couple. He was a pastor and they had two little boys the same age as our little girls. They happened to live in San Antonio, and his mother graciously invited Lydia and me to stay with her whenever we were in town for Lydia's appointments! I remember the day after the surgery, she said to me, "when you come, don't worry about a place to stay, food, or a car!" Talk about an answer to prayer!

Every time, we're in San Antonio, we get together with Bre'anna and David (the little boy who had surgery and his mom).

Bre'anna and David, Lydia and me

As Bre'anna once said, David and Lydia will always be linked together in our minds.

Lydia and David -- 3 months post-op

Lydia and David -- 9 months post-op

It's been such a joy to be able to share this journey with them.

We had a great appointment with the helmet guy (or should I say orthotist?) and the neurosurgeon. More about her appointment in another post.

After a couple days in San Antonio, Lydia and I flew to Michigan. I got a great deal on Delta where I only had to pay $20 more to fly from Texas to Michigan! So I was able to spend a few days with my family. Even my sister flew in from California.

Grandma and Grandpa and Aunt Lesli soaked in their precious time with Lydia.

Lydia with Grandpa

Lydia with Grandma

Lydia with Aunt Lesli

I enjoyed time with my family, watching American football, drinking apple cider, wearing long sleeves, and going to Ikea for the first time. Mike, on the other hand, got to stay home and take care of Emily and our dog, Mali's 10 puppies.

Mali and her puppies

The day after I left, Emily got sick and was throwing up. It was so hard to be away from my little girl when she was sick, but I didn't envy Mike who was stuck with cleaning up the mess. All the while Mike continued work on our indigenous dictionary (thrilling, huh?). I think I got the better end of the deal despite having to do so much traveling.

My time in the States came to an end too quickly, but I was very ready to see Emily and Mike again. The flight back went pretty well. This time I brought a friend down with me, so I had some help with Lydia going through security, on the flight, claiming bags, etc.

Lydia and I had a great trip. Despite traveling for four days, Lydia did great. How did I get so blessed to have two girls who are great travelers?! I miss my family, but I'm looking forward to seeing my parents and my sister when they come to Soytown in February!

~Kelli

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