Craniofacial Awareness Month (a day late!)

September, Craniofacial Awareness Month, quickly slipped away from me. But I didn't want to not talk about my sweet cleft baby! So just pretend it's yesterday.

We had no idea that Timothy would have a cleft. Sometimes, you can tell on the ultrasound. Since his was and incomplete cleft, and because we didn't get any full face shots, it was impossible to tell in utero.

You can imagine our surprise (and that's a nice way of putting it!) when, immediately following his surprise birth, the first words we hear are, "He has a cleft." Though this was about the time I got some really big drugs to keep me from totally freaking out, I believe I looked at Curtis and said, "Are they kidding?!" Surely, I hadn't delivered another baby with a birth defect! I felt totally overwhelmed. A large part of that was because of his surprise delivery at 35 weeks and the very tough c-section I was in the middle of. Just minutes before I had been worrying about his lung development. Now I was worried about that (he had quit crying and was turning some fun shades of blueish gray) AND the cleft.

While the neonatologist was working on Timothy in the OR, he told us that his palate was unaffected. I knew that was a good thing, but I wasn't even entirely sure what that meant.

After Timothy and Curtis left to head to the NICU, I remember feeling very nervous about seeing him. Though I had a quick peek at him before he left, I couldn't remember what he looked like (thank you drugs!). As they wheeled me to the NICU, I remember feeling like a really bad mom. Would I immediately fall in love with him? Would I only be able to see the deformity? Would he be okay? What would all this mean for my family? I was scared.

The moment I saw him, I don't remember seeing the cleft.

The love of a mother is an amazing and mysterious thing. The moment you see the child you've been carrying, there's an overwhelming and overpowering love. Though you've only just met this little person, you've known him for months.

The love of a mother of a child with an obvious deformity is even more mysterious and amazing. When I see pictures of other cleft babies, there's always a moment of shock. I see their cleft first. But that's not how it was with Timothy. I saw him. The cleft was just part of him, kinda like the fact that he had 10 fingers. Without a second of doubt, fear or hesitation, I was madly in love with this little person. Our immediate concers for Timothy had nothing to do with his cleft. There was the concern of his preemie lungs, the blood in his stomach and stool, the horrible jandice that almost kept him from leaving the hospital with us and almost put him back in the hospital. I just about forgot about his cleft lip.

I do remember having a conversation with Curtis while we were still in the hospital about his cleft. Though there were a lot of unknowns and I didn't like the thought of surgery, we quickly decided that we would repair the cleft when possible.

When Timothy was a few weeks old, we started seeing a plastic surgeon. With him, we learned so much more about Timothy's cleft, and made a plan to repair it.



Though I wouldn't choose to have a cleft baby, I quickly fell in love with his wonky lip! This caused lots of emotions when it came time to "fix" it. I share some of these thoughts in this previous blog.

While Timothy was in the NICU, we heard lots of different scenarios for what would happen during the repair, including one that involved a couple stitches, that's it. Timothy's surgery lasted three hours. The doctor not only repaired the cleft, but he also moved the base of Timothy's nose. There were layers of stitches in his lip and up to his nose. The surgery and the recovery were hard, and painful for Timothy. But God was so gracious! We left the hospital less than 12 hours after Timothy got out of surgery. We had been told to expect to stay in the hospital for 24 hours.

Timothy has continued to see the plastic surgeon in the months following his surgery. As of his last visit, it looks like he won't have to have any more surgeries! There's a possibility that we'll have to redo the surgery when he's 5, and we won't know till then if that's going to happen. It all depends on how the scar extends as Timothy grows. Then, when he's 13ish, we'll look at the possibility of rhinoplasty.

As with Benjamin, we are so thankful for how God guided the hands of the surgeon in Timothy's surgery! It's easy for me to look at the things Benjamin and Timothy (and Curtis and I) have had to go through with these deformities, and get discouraged, frustrated, and annoyed with the plan of God. But it's impossible to feel that way when I look back and see how tenderly and graciously God has cared for the boys and us during those tough times. Though it hasn't been fun, and I wouldn't have chosen to walk the roads we did, I'm thankful for them.

Flashback Friday AND Craniofacial Awareness

The moment you first meet your baby, face to face. Those first few snuggles, and kisses. Trying to soak in every detail of this sweet little person. He's perfect!! He's beautiful!!That's how I felt right after seeing Benjamin for the first time. Had there ever been such an amazing baby?! How blessed we were!
Then the screaming started. He was about 3 weeks old, and had just finished a hospital stay for viral meningitis. No matter what we tried, no matter how much he ate, no matter how many times I took him to the doctor, he kept on crying. My mommy intuition told me something was wrong. I would hold him, pray over him, and cry, knowing something was wrong but not knowing what.

When he was about five months old, we finally started putting some of the pieces together. Maybe all this crying was due to his oddly shaped head. A doctor at our pediatrician's office told us that perhaps Benjamin had craniosynostosis.
We learned that his oddly shaped head was caused by the premature fusing of one of his soft spots. Only six days after his official diagnosis, he had surgery.
A month after surgery, Benjamin went into a helmet to protect and reshape his head. He spent 6 months in this helmet, and our family spend a lot of time in the car going to and from Austin every two weeks to have the helmet adjusted. Looking at Benjamin today, you would never know that this lively three year old once had a rare birth defect, causing a rare head deformity. We are thankful for the care of the doctors and the orthotist who cared for him. We're even more thankful for grace that God showed us and Benjamin during this time.

Recently, I read an article about parenting children with special needs. It likened the journey of parents with special needs kids to a journey to Italy. You get on a plane, prepare to head to Italy, learn Italian, and buy books about the cities you'll be visiting. When you get off the plane, you realize that without warning you are in Holland. It's a nice place, but it's not what you were prepared for. You are suddenly learning a new language, and rapidly trying to adjust to your new culture. The article was written for parents who had children with long term special needs. And while I am SO thankful that I'm not a parent who is in Holland forever, I can completely relate to some of the author's points.

As a momma, I was so in love with Benjamin, even before he was born. The moment I saw him, I knew I would do anything for him. He was beautiful. Then I was told that no, my son was deformed. His deformity would only become more and more pronounced the older he got. His brain was being squashed, and we could face some very severe medical problems because of it. I had been in Italy. Then suddenly, I was on a plane, having just landed in Holland. Rapidly, I had to learn a new medical language, I had to prepare myself for my son's major skull surgery, and a PICU stay (which was hell). And one of the hardest things was that while I found myself in Holland, my other children were still in Italy.

Little research has been done on how or why children are born with craniosynostosis. We've recently learned that Benjamin might have had this birth defect because of some medication that I took during my pregnancy with him, but we're not sure. And we may never know. I do know that everything we went through, and everything that Benjamin went through was for a purpose. I hope that while we were on our journey, we glorified God, and showed His love and the hope we have in Him to others.

Parents who face having a child with a craniofacial issue face some hard stuff! Which is why I want to take some time talking about it this month. There was an emotional drain on us, it took a toll on our marriage, our family suffered, it was a financial burden that was are still trying to recover from. But how very thankful I am that all is well!! And that's what really matters.

Craniofacial Awareness Month

September is Craniofacial Awareness Month. And since I have two boys effected by craniofacial issues, I thought it would be a perfect time to talk a little bit about it.

What is a craniofacial disorder?

A craniofacial disorder refers to an abnormality of the face and/or the head. Craniofacial differences can result from abnormal growth patterns of the face or skull, which involves soft tissue and bones. A craniofacial condition may include disfigurement brought about by birth defect, disease or trauma.

Benjamin had craniosynostosis. That particular deformity causes the sutures of the head (soft spots) to close too early, leaving the rapidly growing brain squished. Benjamin's head was growing, but not the way it should. His head wasn't growing any wider, it was just growing out, causing his forehead to protrude.

Timothy, as I'm sure you all remember, had a unilateral incomplete cleft lip.

We were unaware of either of the deformities till after the boys were born.

Though the process of dealing with the deformities has been a tough one at times, our family has much to be thankful for. Not once were the boys in life threatening situations. Though Benjamin's squished brain could have caused a host of issues, it didn't. Timothy's cleft could have been so much worse, but it wasn't. Both boys have undergone major surgeries to fix these deformities, and have done very well through surgery and recovery.

While we are abundantly thankful for God's protection, it's been hard. It hasn't always been an easy or pleasant journey. So this month, I was to take time to share with you my thoughts and experiences in hope of shedding more light on these issues.

Lights of Love

Yesterday was the big day! At about 2 in the afternoon, we loaded up our hats, mittens, coats, long undies and blankets and headed to Austin. Once we got there, we picked up our race packet and headed to the Family Christian bookstore to do some shopping.

After lunch at Witch Which (YUM!) we headed to the starting line! The boys, bundled up, ready to head to the race!
The girls, also ready to go!

The Krajca family, nice and toasty. Team Cranio Kids.

Ronald McDonald was at the starting line, passing out high fives to all the racers.

The race went well. At about mile marker one, I started the pregnant lady waddle. The longest part of the race for me was between mile marker one and mile marker 2. It was at this point that my loving husband pointed out that there was a gentleman with a cane who had passed us. Shortly after that, we saw the police car, bringing up the end of the race, directly behind us. Oh well.

We walked through a neighborhood that was close to Dell Children's Medical Center (which is where Benjamin had his surgery). Many of the people who lived in the neighborhood were out singing, cheering us one, and ringing bells. The police standing along the route were also cheering, waving and giving high fives. It was a lot of fun!

Thanks to the patience of our team members, Team Cranio Kids crossed the finish line one hour and three minutes after the start of the race!

Our Cranio Kids To add to the ambiance, fake snow had been placed around the finish line. After all the snow hype that central TX got yesterday, it was fun for the kids to actually get to play in "snow".

We had a great time at the Lights of Love! Thank you to everyone who supported our team. Together, we've raised $770 for Ronald McDonald House Charities!

Wohoo!!!!

With the help of several of you, Team Cranio Kids has met our fundraising goal for the Lights of Love! Thank you to everyone who participated! I know from experience how amazing this charity is, and I know your donation will bless a family during a very hard time.

If you haven't had a chance to donate, but are still interested, it's not too late!!! We've met our goal, but now let's exceed our goal! Every donation, big or small, helps. Only 10 more days till the Lights of Love 5K. Don't let this wonderful opportunity pass!

Two Thanksgivings ago, I was packing and getting ready to go to Kansas, just as I have today. It was a great trip, but I knew at the end of our trip we would pack up and head to Austin to meet with a neuro surgeon. To say that there was a dark cloud over the holiday is a huge under statement. We've been able to "redeem" the holiday, and now, rather than a cloud, we truly have something amazing to be thankful for!!! Our little boy is healthy. But there are other families who can't share in that sentiment. As you count your blessings this Thanksgiving, take a moment to think of those who are spending the holiday in a hospital with their child. This is your opportunity to help them!

Three more weeks!

Only three more weeks till our Lights of Love!

And I'm sure if your life is anything like mine, it's going to be a busy three weeks. With Thanksgiving less than two weeks away, Christmas plans already starting, and just the general business of life, it would be easy to let the opportunity to help raise money for families with children in the hospital, slip right by.

I'm very excited to see that we are already half was to our fundraising goal! Thank you so much to all of you who have donated! Every little bit makes a difference for these families.

If you haven't donated yet, please consider taking the time and doing that today. Every donation, big or small, will make a difference! Consider making a donation in someone's honor for a Christmas present. Or maybe you or someone you loved has been helped by this charity. Donate in honor of that family.

Thank you again to everyone who has already given us their support!

To help you remember.....

Please see the post below

Make an on-line slide show at www.OneTrueMedia.com

Remember where we've been?

In four weeks, our family will be walking in the Lights of Love 5K to help raise money for the RMHC. As I do all the preparations involved, I find myself taking moments to remember what we've been through. How blessed we are! Our son is healthy, no longer deformed, active and loved. What more could we ask for??


But as I take time to remember, I remember the emotional roller coaster that we were on. I remember the dark hours, where I let myself think that maybe he wouldn't make it. Then I think of the families who are right now facing those same fears. My heart breaks for families who have had to stay or are staying in a RMH. But I'm so thankful that they have an option. I'm thankful we had the opportunity to stay close to Benjamin, but also have a place to go to when we needed.


As you watch the above video, please rejoice with me at God's goodness!! But also consider how you can help families who are facing the dark times of having a child in the hospital.

Our RMH story

For many of you, this isn't a new story. But as we kick our fundraising into full gear, I wanted to share with you all how blessed we were by the Ronald McDonal House (RMH) and hopefully you'll see our motivation to help them raise money.

We received Benjamin's diagnosis of craniosynistosis on November 27, 2007. Though we knew that it was possible that Benjamin would under go this major surgery, we really didn't think it would actually happen. We were praying that Benjamin would be healed, or that maybe this was all one big medical mess up. After receiving the news that our 6 month old had this rare deformity, and that in six days he would be undergoing major head surgery, all we could do was remind ourselves to breath. Breath in, breathe out.

When I woke up the next day, I found myself in a whirlwind of planning. Family had been notified, prayers were already being lifted up, there was cleaning, cooking, packing and child care to take care. I also found myself spending hours on line, trying to find every bit of information I could on the surgery. And though it wasn't a high priority, I knew I needed to make sure Curtis and I had a place to stay, to call home, while we were in an unfamiliar city, without our support system.

Our neuro surgeon refereed us to the RMH in Austin. It was such a weight off our shoulders to know that there was one less detail that needed to be taken care of! One less thing for me to plan, to arrange, to worry about.

We arrived in Austin, the evening before Benjamin's surgery, we checked into the RMH. They were kind, caring, and very warm. It was so nice to have a place to call home, while we were away from home.

After Benjamin's surgery, he spent 24 hours in the PICU. Only one parent could sleep in the room with him, and since I was the food supply, I pulled out the fold out couch and settled in for a very long night with very little sleep. Curtis, however, was able to go back to the RMH, sleep in a comfy bed, and get a shower the next morning (the PICU didn't have showers). Once Curtis got back to the hospital, my dad took me back to the RMH to shower. It was refreshing to get out, to have somewhere to rest and get cleaned up.

We only spent 3 nights in Austin, at the RMH. But what a difference it made! Though we had people offer to pay for a hotel during our time in Austin, I was thankful that the RMH was there for us, and we only had to pay $10 a night! Other than the low cost, there are also many other benefits to staying at the RMH; a family room, a play ground for other children, eating quarters with meals provided.

I know how greatly the RMH blessed us during a very hard and stressful time. I can only imagine what a blessing it is to families who have a child in the hospital for longer amounts of time.

Please consider how you can help the Ronald McDonald House Charities. You can donate to our team, by clicking the link on the right hand side of the blog. You can also join our team, and walk with us as we raise money and support this amazing charity. If you're interested in joining our team, click on the link. Then go to the link that says My Team Page.