Benjamin's Blog

The End?

2009-04-08T16:28:00.007-05:00

It's been over a year since Benjamin's diagnosis and surgery and almost one year since he graduated out of the helmet. I've kept this blog up to record memories for Benjamin to have one day. But thankfully, we are at the end of his cranio story.

If you look back at posts from May of 2007 you will see the anxiousness of a mother as she awaited the arrival of her new son.

Not long after that, you will see the exhaustion of motherhood taking over, as well as the frustration of having a difficult baby.

In November and December of 2007 you will see the uncertainty of a family as we faced a never before heard of diagnosis and the doubt and fears of a major surgery on our sweet six month old.

There are times of joy, or praise, of thanksgiving too.

One of my prayers is that through this blog, you will see our faith. A faith that carried us through the hard, dark, and uncertain times. A faith that made our joy and praise richer than ever. Look past the doubt of this mother, and see the hand of Benjamin's Creator as it moves through our lives.

My other prayer is that this blog would be used as a resource for parents who have children facing the same diagnosis as Benjamin faced. It's scary! Craniosynostosis is a big word that I had never heard of. If you are a parent of a cranio kid, you're not alone! On the sidebar of Benjamin's Blog is his story, as told through this blog. And the best part is that there's a happy ending!

And if you have a cranio kid, please feel free to contact me at kierstynkrajca@hotmail.com for more encouragement. Or just leave a comment, so I know you were here.

This picture was taken today, of my beautiful, blue eyed, cranio kid!! How far God has brought us and I praise Him for how good He has been to us!

Thank you to all our friends and family who have supported and encouraged us on this journey. You mean more to us then we can express!

God is good all the time, all the time, God is good!!!

Benjamin's Story of God's Faithfulness

2009-02-09T22:58:00.004-06:00

I posted on our family blog about my new "hobby", making books on-line. My first attempt at making a book came after I got word that Snapfish was giving away a free book. I jumped on, confirmed the information, and decided I wanted to make a book of Benjamin's journey. Obviously, he won't remember any of the things he went through, as we dealt with his cranio. I wanted him to have something tangible, something that contained some of my thoughts and prayer. A place where I could record some of the scripture I prayed over him. One place where I could record the song I sang to him while he was in PICU. I had toyed with the idea of putting it all in his scrapbook, but didn't want the whole cranio thing to be the main focus of his first year.

It was hard to put all those things in one place. It was hard to go through all the pictures again, and have the memories flood my thoughts again. I laughed, I cried, I prayed, praising God for how well Benjamin is now.

Finally, I was happy with the end product, and I went to order it, only to find out that I had missed the deadline for a free book by one day. I was so upset!! This wasn't just any book, this was my heart. But it was a month before Christmas, and I wasn't about to pay full price for something I didn't need.

Well, my Mom, being ever so sneaky, figured out how to get onto my Snapfish account, and ordered the book for me for Christmas! I was so excited! And it's beautiful. I love the way it all came together. It really meant to world to me, and I was so thankful that once again, my mom saw a need and met it for me.

So here's parts of Benjamin's story book.

the cover

One of my favorite pages, the grandparents with Benjamin.

Gotta love the helmet pictures!!!

And the verse that comforted me so much, the verse that I prayed over Benjamin, and the verse I claim for him... Psalm 71.

Though the book was really hard to put together, I'm thankful for this book. I'm thankful for the reminder of God's love, goodness, grace, peace and most of all, faithfulness. He took something so very scary, so very hard, and worked it for His glory and our good.

The last page of Benjamin's book says, "God is good all the time. All the time, God is good."

Amen, and amen!

A good report

2009-02-05T10:20:00.002-06:00

Isn't this a sweet face???
Yesterday we made the familiar trek to Austin to see Dr. Aronin, Benjamin's neuro surgeon. We have to go every six month, just to check in, make sure the hole in his head is closing up, make sure his development is on track, share any concerns, all that good stuff. Benjamin's appointment went very well. He is doing great, is on track, has a shrinking hole in his head.... life's good! We'll go back again in August, just to check in again.

At this stage in the game, we expect to hear good reports. But we never take them for granted. There are so many things that could have gone wrong, that could still go wrong, and we are thankful that God has given Benjamin such a remarkable recovery. He is so good to us!

Right Back

2009-02-01T21:17:00.002-06:00

As I'm driving, on the same road I drove to and from Austin so many times, I get hit with that old familiar feeling, and I'm right back where I was.

While standing in church, training the two older kids, the words of a song will penetrate, " All my trust on Thee is stayed, All my help from Thee I bring; Cover my defenseless head With the shadow of Thy wing." and I'm right back where I was.

A picture.

A conversation.

Getting a glimpse of his scar.

Any of these things can take me right back to where I was. To those hours in the waiting room, when all I could do was pray, hope and wait, longing to hold my baby. To those moments in the PICU when I was so scared, so worried, so overwhelmed with emotions. To the moment when we got to go home! When we received good report, after good report. To all the exhausting trips to Austin and back. So many moments. Some good, some bad.

The road we've traveled has not always been easy (isn't that just life?). This road hasn't always been filled with the joy that I long for. But this isn't a road we've had to walk on alone. Every step of the way, our Savior has been with us; guiding us, protecting us, encouraging us, strengthening us. And that makes all those other moments worth it, knowing that I am now walking a closer walk with my Savior.

One year

2008-11-27T22:32:00.001-06:00

Thanksgiving 2007

Thanksgiving 2008

My, what a difference one year and cranial surgery can make!

Happy Thanksgiving

2008-11-27T10:12:00.002-06:00

Happy Thanksgiving!!!

Not only is today Thanksgiving, but it is also one year since Benjamin got his diagnosis. How far God has brought us all!

My hope was to write several posts about all the things I'm thankful for, but that didn't happen. So, I'm just going to list several of the things that I am thankful for.

I'm thankful for Benjamin's health. It hasn't been an easy road, but today, he is a perfectly healthy little boy! That's more than I could say a year ago.
I'm thankful for God's protection and provision. He protected Benjamin during surgery and recovery. He protected us during several trips to and from Austin. He provided for all our needs... physical, spiritual, monetarily.
I'm thankful for my parents and for Curtis' Dad and his Dad's wife Melinda. Their love, prayers, encouragement have meant so very much to us.
I'm thankful for our siblings who have been there for us as we've walked this sometimes rough road.
I'm thankful for our dear friends the Findleys, who have joined us in the middle of all our drama, including driving to Austin to be with us after Benjamin's surgery.
I'm thankful for all our friends who have supported us with prayers, food, babysitting, listening ears, and just loving us in every way possible.
I'm thankful for the Word, and how the Spirit has comforted.
I'm thankful for Kenny, Lindsey, Adam and Andrew who helped, comforted and strengthened us by their faith.
I'm thankful for Kris, Andria and Zak, who can related to our struggles.
I'm thankful for the great medical care that Benjamin received.
I'm thankful our church, who cared for us like family.
I'm thankful for the people who stopped what they were doing to hold us, hug us, and pray with us.
I'm thankful for prayer.

God has been so good to us! We have so much to be thankful for this year. Last Thanksgiving, we still didn't have Benjamin's diagnosis. We were still in a state of worry, confusion and prayer. And now look at where we are! It hasn't always been easy, but by God's grace we've made it.

Thank you again, to all of you who have lifted us up in prayer, who have encouraged us, who have loved us so well!

Thankful for Curtis

2008-11-14T16:50:00.006-06:00

As I reflect on the people who have been there for me and our family as we've walked down this crazy road with Benjamin, the very first person who comes to my mind is, of course, Curtis.

From the moment he became a father, Curtis has been an amazing father! What an amazing process to watch him become even better at a job he already excels at, as we add more children to our family.

In the above picture, Curtis was telling me, "I know you can't tell, but I'm smiling! A lot!" Benjamin's birth was such a joyful day for us. Despite the surprise of the pregnancy, despite the post partum depression that we dealt with while I was pregnant, it was a wonderful day! Curtis was nothing sort of incredible during my pregnancy with Benjamin.Benjamin was a beautiful baby. Curtis and I spend the afternoon he was born, before all our company arrived, just staring at our beautiful new son.

During the really trying days, when Benjamin didn't sleep, when he cried for hours, without being consoled, Curtis was my support. I could call him, totally freaking out, and at the end of my rope and he had a way of making it better, of calming me in the midst of the most chaotic moments (and there were many).

Once Benjamin received his diagnosis, and we started down the road of surgery and recovery, Curtis was there for him and for me. There were days where I was so scared, so overwhelmed, and so angry, that emotions spilled out, and Curtis took it. We fought, we cried, and at the end of the day we were so thankful for each other.

Curtis, thank you for walking down this road with me. Thank you for calming me, for pointing me back to Christ. I look back at the past year, and I really don't know how we made it. But I know that the love we share has made it possible. Thank you for loving me, and our children so much!

Can you believe it's been almost a year?!

2008-11-12T14:09:00.004-06:00

I was just going through a few old posts, from this time last year. This was about the time we were wading through the insurance mess, trying to find out what to do, what doctor to see, and praying that Benjamin didn't have this head "thingy" (I still didn't even know how to say craniosynistosis!). I spent as much time as possible reading up on this head deformity, taking pictures of Benjamin's head to compare to the pictures on line, praying, reading scripture, and just worrying.

My how long ago that seems!

As I look back, I am flooded with many emotions. But mainly, I am overwhelmed with thankfulness. I am so thankful for the protection that God showed Benjamin! To think how he was, and to see him now is like night and day. God lavished his protection, grace, and healing on Benjamin. I am so thankful!

There are also many people to who we are forever thankful for. As I begin to prepare for the holiday season, I'm going to take time to remember just a few of the people I am so thankful for. So, stay tuned!

"I prayed for you!"

2008-10-29T16:35:00.002-05:00

Today, after my young mom's bible study, I was talking with a couple of the ladies. I made a comment about what Benjamin had been through, and one of the sweet ladies asked, "What happened?" I started telling her about how Benjamin was born with a rare head deformity and she stopped me saying, "I prayed for him!"

Those words were some of the most powerful words I have ever heard. I thanked her, and I hope she understood how truly thankful I was. And I know that she wasn't the only stranger that lifted Benjamin, Curtis and I before the throne of God. How thankful I am to all the people, those who we love, and those who we don't yet know, who prayed for us. And I know one day, probably in Heaven, I will get to meet every single person who prayed for us.

Knowing how blessed I was by prayer, I am asking again that you lift up another family who is facing the same thing we did. Here's a picture of Anderson (Ande) and his momma, Kim.

I spoke with Kim earlier this month, and just haven't taken the time to share her and Ande with you all. But please join me in praying for Ande! I believe that he has already had his surgery, and I hope to have another update soon.

Thank you!

More about sweet Zak

2008-09-15T10:49:00.003-05:00

Last night, Curtis and I were blessed to be able to spend some time with Kris, Andria and Zak. Even though I have been through this I was still SHOCKED to see how great he looks! He was playing, "talking" to us, and just being as sweet as he could be. Praise God for his great goodness and love!

Andria was telling me how full her heart feels, and how she can't stop smiling. And I know that feeling! The feeling of praise, of joy, of thankfulness. And it's been even more amazing to see that Kris and Andria are praising God.

Thank you for your continued prayers!

Zak

2008-09-11T17:06:00.002-05:00

I just talked to Kris, Zak's dad, and Zak is doing pretty good. Everything went as planned, and I could hear sweet Zak crying in the background. Our conversation was very brief, but they seemed to be doing well, and were praising God for his rich blessings!

Praise the LORD, O my soul;

all my inmost being, praise his holy name.
Praise the LORD, O my soul,

and forget not all his benefits-
who forgives all your sins

and heals all your diseases,
who redeems your life from the pit

and crowns you with love and compassion,
who satisfies your desires with good things

so that your youth is renewed like the eagle's.

Psalm 103:1-5

Prayer Request

2008-09-01T20:11:00.008-05:00

This is Zak, Benjamin's new cranio kid friend!

Please join our family in praying for Zak. Last week he received the same diagnosis as Benjamin did, craniosynostosis. He will be having surgery next week, on the 11th.

God is so amazing! Through friends, an aunt, and the boys' neuro surgeon, our families were put in touch. This evening, we had dinner with our new friends. For Curtis and I, it was a very special time to encourage fellow believers facing some of the same fears that we have faced.

So, to all our faithful prayer warriors, please pray for Zak and his parents Kris and Andria! Curtis and I know first hand the power and blessing of prayer, thanks to all of you who so faithfully lifted us up! Kris and Andria check this blog frequently, so feel free to leave prayers, Bible verses, words of encouragement here. (Watch out Kris and Andria.... I'm going to be leaving lots of comments of my own with all the amazing scripture that helped us!!)

Father God, I praise you tonight for your faithfulness. Thank for being our God and a God to our children. Your promises are true, and we claim them, knowing that you are faithful.

Father your Word says that we are perplexed, but not driven to despair. I pray that Kris and Andria would not feel despair. Lord, I pray that you would hold them, comfort them, encourage them, and grant them peace. It the hard times, in the scary times, in the moments when they don't know how they will do this, I pray that you would sustain them. Grant them perfect peace, as they wait on you.

Lord, your Word also tells us that you have a plan to prosper, and not harm us. I pray that you would fulfill this promise to Zak. I pray that through all this, you would draw him closer to you. I pray that you would protect him and sustain him. Lord, would you prosper him, and grow him into a man who loves you. May he one day declare the marvelous deeds that you have done!

Father, I again thank you for all that you have done for my family! Thank you for bringing us together with Zak, Kris and Andria. Please be with our friends, protect and keep them.

Amen.

Thinking back

2008-08-24T22:20:00.003-05:00

Tonight, we had our first night back at Covenant Kids. This time last year, I would take Benjamin to the nursery, drop him off, and leave, knowing that even though he was screaming his sweet little head off, Ms. Hannah would love him and take care of him. Curtis and I would go to Dairy Queen and read, enjoying a little break. It was such a tough time! Benjamin wasn't sleeping during the day, and was up at least twice during the night. He cried incessantly! Nothing seemed to help him. It was exhausting, frustrating and just made life tough.

This evening, Hannah and I were talking about what a difference a year has made in Benjamin's life. And I again found myself praising God for all the love and grace he has shown our family!! I also found myself even more thankful for all the friends who helped us during those tough times of sleeplessness and crying. God has been so good to us!

Scrapbooking

2008-08-13T22:25:00.002-05:00

I love to scrapbook! It's a little hobby that my friends sucked me into while I was pregnant with Elizabeth. And to feed this horrible little hobby, I've even become a Creative Memories consultant, to get my stuff at discount, of course!

I currently have three, almost four, albums going. My family album for 2007, my professional pictures album (the very first picture is our engagement picture!), our wedding album and Benjamin's first year.

I've put Benjamin's album on hold for a couple reasons. One, I really need to get the other albums finished since CM is changing their pages and I have all old pages in these albums. But the main reason is that I just don't know what to do in his album next. I'm just about to his surgery, and I'm a little stuck.

Christi gave me some good advice. I can look at it two different ways. One, just give the facts, include some pictures, but just stick to the basics. Or, I can go the highly emotional route and include every detail of every emotion that I was feeling.

And I'm sure you can guess which one I tend to. The emotional one!

And that about sums up how life post surgery and post helmet has been. I often find myself wanting to just stay in that emotional place, where I think about all the thoughts, feelings and emotions that surrounded us. I find myself looking at old blogs, pictures, and just being a big weepy mess!

But that's not where God has called me to be. He's given me grace for today. And that's where I need to rest and stay.

I am so thankful for the story that I have to tell! It should be interesting to see how I portray the whole story in Benjamin's album. And even though it is a pretty amazing story, I don't think that this will be the greatest story that I tell about Benjamin. God is just beginning to work in the lives of my children!!

Outstanding!

2008-07-24T21:34:00.002-05:00

That's what Dr. Arronin had to say about Benjamin when we saw her yesterday. Outstanding! Everything is going as planned, just like it should. He is healthy, and will have no long term problems from all this. Praise God!

Long term.... we will go back in six months (January). Then, we'll go back six months after that. Hopefully, if all continues going as it is now, we will then only be going once a year. She said we would be doing that while his head grows at such a rapid rate. Once his head growth slows, we should be done. Not sure exactly how long that will be.

We are so, very, thankful for another good report! God has been so good to us!

In My Arms

2008-07-17T15:58:00.003-05:00

I heard this song on the radio today, and thought it was beautiful! The song triggered some memories, which then triggered a thought process, which of course led to this blog. :-) Funny how that happens!

Here's the first part of the song and the chorus.

Your baby blues
So full of wonder
Your curlicues
Your contagious smile
And as I watch
You start to grow up
All I can do is hold you tight

Knowing
Clouds will rage in
Storms will race in
But you will be safe in my arms
Rains will pour down
Waves will crash all around
But you will be safe in my arms

There have been so many instances where I have held my baby, looking at their sweet face, knowing full well that they are sinners, born into a sin marred world. A world where they will fall down and get hurt, where sickness is inevitable, and where people will hurt them. Even though they are very loved, and even though Curtis and I vow to do everything possible to shelter and protect them, we know we can't. But in that moment, as I look into their sweet face, they are safe in my arms.

I remember holding Benjamin for the last time before his surgery, as Curtis and I prayed over him. And then the doctor came, and I let him leave the safety of my arms. And even worse, I knew what he was about to undergo. It was the hardest part of the entire day for me, to have my baby leave my arms, probably the hardest thing that I have ever done. I know that the only way I was able to do that without completely losing it was to know that my arms aren't the safest place for him, or any of my children. Try as I may, I can't protect them from the trials they will encounter. Even though I did everything "right" during my pregnancy, I couldn't protect Benjamin from his deformity. And even though I love my children, so very much, I know that they are loved by Someone who can keep them safe. And so, at that moment when I let my baby leave the safety of my arms, I thought about the ONE who was holding him.

After the surgery, I went back to the recovery room to be with Benjamin as he woke up. Coming out of anesthesia isn't fun, especially when you are six months old! I was nervous about seeing him for the first time, unsure of what to expect. But the joy that I had seeing him, doing so well was immense! Never mind the cords, the wires, the beeping, or the massive bandage. God had protected him, and kept him safe in HIS arms.

"We don't usually let Mom or Dad hold their baby right after surgery," the nurse told me. "But Dr. Aronin gave special instructions to let you hold him." I was so thankful!! It was quite a challenge to maneuver all the wires and cords, but of course we managed. And when he was placed back into my arms, I had more joy and thankfulness than when I held him for the very first time, after he was born.

Later, during the middle of the night, Benjamin struggled some with pain. We were able to manage it with morphine, but in order to get out of the PICU, he had to be off morphine. I was the only one up there with him, and rather than sleeping, I was watching him sleep. As he started to struggle with some pain, and his blood pressure rose, I asked the nurse if I could hold him (so strange to have to ask permission to hold your own baby!). She kindly told me that sometimes the best thing is for them to just get rest and not to be messed with. She also told me that she was a mom, and knew that sometimes moms just need to hold their baby. I wanted to do what was best for him, so I just loved on him and let him rest. But his blood pressure wasn't going down. The nurse suggested that we go ahead and let me hold him and try to nurse him (another requirement to get out of the PICU). The second that he was put in my arms, his blood pressure dropped to normal, as did his heart rate. The nurse just smiled, and said, "Well, you were obviously right, and knew just what he needed!" The safety of my arms.

Thank you, Heavenly Father, for holding us all in your arms! Thank you for loving us, for protecting us, and for showering your us with your grace and mercy. Once again, I place my children back in your arms, knowing that you alone can keep them safe.

What to do

2008-07-13T00:12:00.004-05:00

I started this blog to share the news of our pregnancy with Benjamin. During my rather uneventful pregnancy, I used this blog to share little stories, updates, ultrasound pictures and of course, belly pictures!

After Benjamin's birth, the blog was used for all those baby pictures... you know the ones... where the baby looks the same since all he does is sleep, but he was wearing different clothes! I almost used the blog as a scrapbook or journal, to record little milestones and memories I was afraid of forgetting in my sleep deprived state.

When Benjamin was about five months old, I started thinking about wrapping this blog up, and just posting on our family blog.

But then we had that unforgettable visit to the doctor.

For the second time, I used a blog to ask prayer for my baby. Rather than cheerful updates and cute pictures, I was posting about head deformities and possible diagnosis's and treatments. I used this blog to write out my thoughts, to pray, to find comfort in God's word. The prayers of the people continued, and every day I heard from someone new, someone who was praying for us.

After Benjamin's surgery, I was able to keep all our faithful prayer warriors up to date. Words will never be able to express how thankful I was for the prayers, the e-mails, the comments, the phone calls that we got during our time in Austin. The blog served as a tangible reminder of all those prayers.

I continued to use the blog to let people know how Benjamin was doing and progressing. Our prayer has been that Benjamin will one day say the words of David:

But as for me, I will always have hope; I will praise you more and more. My mouth will tell of your righteousness, of your salvation all day long, though I know not its measure. I will come and proclaim your mighty acts, O Sovereign LORD; I will proclaim your righteousness, yours alone. Since my youth, O God, you have taught me, and to this day I declare your marvelous deeds. (Psalm 71)

God has done marvelous deeds in Benjamin's life, and in our lives. I prayed that this blog would declare those might deeds, that it would be a place where we could tell of the righteous acts of God.

So now what? What should I do with this blog now?

I thought about continuing to post until Benjamin was released from the neuro surgeon. I thought about making this my final post. But then today I was talking with someone who was going to be able to give a friend this blog as a source of encouragement since her friend's daughter will be having similar surgery soon. God has given me a couple opportunities like this.... opportunities to help and encourage other parents facing the same thing we've been through.

So for now, I'll keep posting, and telling of the marvelous acts of God, because there are so many!

198 days later....

2008-06-17T14:18:00.006-05:00

(thanks for the title Shannie!)

before surgery, front (notice how his forehead bulges)

before surgery, top (notice how long his head was)

before surgery, side (you can really see the way his head bulges in the back)

AND NOW...... after 164 days in the helmet.... 192 days since surgery.... 198 since diagnosis.....

"Bless the LORD, O my soul, and all that is within me, bless his holy name! Bless the LORD, O my soul, and forget not all his benefits, who forgives all your iniquity, who heals all your diseases, who redeems your life from the pit, who crowns you with steadfast love and mercy, who satisfies you with good so that your youth is renewed like the eagle’s." Psalm 103: 1-5

I literally cannot look at the "before" pictures with out tears. It breaks my heart. And I can't look at the "after" pictures without a huge smile! And the verse above is the verse I keep hearing in my head. I heard it during the tough times, during the good times, and now, I hear it again! God has been so good to us! He has lavished His faithfulness, mercy, and grace on our family. I hope that as you have observed Benjamin's story unfold, that your heart has been pointed to Christ. We are so thankful to all our friends and family who have loved us, supported us, encouraged us, prayed with and for us, watched our older children, brought meals... words will never express our gratitude! Thank you! But most of all, we thank Christ for the mighty act that he has done in our family. We thank Him for healing Benjamin, for restoring him to health. God is good all the time, all the time, God is good!

So, now what?

2008-06-15T22:21:00.002-05:00

We are loving life with our helmet graduate! So far, we've been able to avoid any major falls, but all the little falls still have me a little jumpy. The first night without the helmet, Benjamin woke up a couple times, and would only back to sleep while being rocked with his hand resting on his forehead. So sweet! It was like he knew something just wasn't quite the same up there. This morning I asked him where his helmet was, and he rubbed his head looking perplexed.

It's been weird to NOT be stared at! No more questions, no more looks... it's odd. But as I said earlier, we are loving it!

So, now what? Well, we have an appointment with Dr. Aronin, the neurosurgeon, late next month. And that's all I know for now. I think I remember hearing at one point that we would need to follow up with her for a year after surgery (every three months or so....) but I'm not positive. As of right now, we're not getting the soft helmet. The orthotist basically left it up to us, saying that if we wanted to call and talk to Dr. Arnonin about it, we could. I decided to give it a few days, and see how things played out. Things have played out beautifully, so right now my plan is to just wait and see what Dr. A says next month.

I'm going to try to get some before and after pictures up soon. It's unbelievable the change that has taken place! I praise God for everything, but most of all, for his love and faithfulness!

We're DONE!!!

2008-06-12T15:30:00.005-05:00

We had Benjamin's FINAL helmet appointment today. Everything looked great, and we are DONE, DONE, DONE, DONE!!!! Here's our day in pictures.Snoozin' in the carseat on the way to Austin.
On 290, on the way Austin.
In the waiting room.
Come on Bud!!
Doing a few measurements. Ben's head is 1 cm wider, 1 cm longer, and 3 cm bigger in circumference.

Benjamin and our orthotist, Bud. Bud said that we were one of his favorite patients, and he was sad to see us go. We have loved working with the people at Hanger!
Outside the orthotics office
Let's GO Mom!!

Daddy and Benjamin outside the Pediatric Specialty Building

What a cutie!
eating lunch after our appointment
That way to home
Heading home on Hwy 21
Wohoo! No more helmet!

When I see Benjamin.

2008-06-11T06:58:00.004-05:00

About two weeks ago, Benjamin didn't have his helmet on when Curtis and I took him to lunch. It was very strange NOT being looked at (whether it was because Ben wasn't wearing his helmet, or because we only had one kid, I don't know). The past few months I've grown very accustom to the looks, the questions and everything that has come with the helmet. When people would look at Benjamin and smile, I wanted to tell them, "He's not just your average cute baby! You wouldn't believe his story, and what he's been through!" But I didn't. I just smiled back as Benjamin waved. The whole experience gave me a glimpse at what my life with a helmet graduate will be like.

It made me think about the way people have looked at Benjamin, and what they see. When people look at Benjamin I think they see....
a helmet.
a little boy who has a problem.
his big blue eyes that pop when he wears the helmet!
something they aren't familiar with.
their child, who also had to wear a helmet.

We have been very fortunate, and haven't gotten any horribly tacky comments. We have gotten lots of stares, lots of questions, but also lots of smiles and encouragement.

When I look at Benjamin, I see...
my beautiful son.
his crazy smile that makes me forget about the tough times.
his mess of blond hair, that flips out over his ears.
a child who has endured a lot for a 12 month old.
a testimony to God's faithfulness.
evidence of grace.
a little boy who is very loved.
a little boy who has received more prayers than I will every know.

Tomorrow might be the big day! Curtis is coming with Benjamin and I to Austin, and we are hoping and praying that we will be done with the helmet! Please pray for safety, for good news, and peace to rest in God's will (even if that means more helmet time or another helmet).

gettin' antsy

2008-06-05T14:03:00.002-05:00

Is it next Thursday yet? I'm getting so very anxious, excited and very ready for our next appointment with the orthotist, where hopefully we will get the official "you're done with the helmet!" I'm so ready to be done!

Sure, in the big picture, this whole head think will be a minor part of Benjamin's childhood. But right now, it still feels so major! I sat down the other day and figured out that we have been dealing with this in one way or another for over seven months! And that's since we've had a name for it. There were the months of crying, not sleeping, and me knowing something was wrong, but not knowing what, before that too. And I think all that is the main reason I am ready to be done. I'm ready to close that chapter of his life, and move on to the next thing that God has in store for Benjamin and for us.

Stay tuned! Maybe the next time I post it will be before and after helmet pictures!

2 weeks!!!

2008-05-29T13:38:00.002-05:00

Benjamin and I just arrived home from our latest trip to Austin. And we have BIG news!

The orthotist said that at our next appointment, which is in two weeks, Benjamin will probably be out of his helmet! Yay! Of course there is never any guarantee that we'll actually be done in two weeks, but just knowing that we are so close to the end is very exciting!

I am still a little concerned over the hole in the top of his head. Though it is much smaller than it was, it is still obviously there, and still a concern for the mommy of a busy, walking everywhere, one year old with two older siblings who like to wrestle with their baby brother. There is a possibility that if the neuro surgeon thinks it necessary, Ben would go into another helmet. This helmet is a soft helmet, made of rubber. When I saw it, I thought of the old, leather football helmets. So, we'll see what happens with that. Part of me wants it, just to be on the safe side. The other part of me is ready to be done with any form of head stuff.

We are so thankful to see the end! God has been very loving, gracious and faithful to us over the past several months. Last night at our community group, I was thinking over the "hardship" that we have been through, and how God has used it to make me stronger, and to exemplify his power and goodness. Our group was talking about God's power to remove our struggles, our weaknesses and our "thorns of the flesh". So often we don't pray expecting our great God to deliver. Yet we are told it Eph. 3:

"20Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, 21to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen."

I prayed that God would spare Benjamin from this deformity. I prayed knowing that He was powerful enough to deliver Benjamin from the road that he's been on, but also trusting that even if he didn't, all things would work for our good. When Benjamin still had to undergo surgery and all these months in the helmet, I didn't doubt God's strength. But what I am now seeing is that God has brought all of us through this to grow us, to make us more dependent on Him, to draw Curtis and I closer together, to remind us of his grace. At the beginning, I thought the mighty thing God could do would be to heal Benjamin of his deformity. I now see that God did immeasurable more than I asked or imagined with the work He has done in me and my family! To Him be the glory forever and ever!

To make you laugh

2008-05-25T14:47:00.000-05:00

Tubes

2008-05-21T05:14:00.002-05:00

This morning, Benjamin will be getting tubes put in his ears. We are very positive about how it will help him, and aren't too nervous about the day. One of my main concerns was if he woke up after midnight and we weren't able to give him anything to eat. But, God answered my specific prayers, and Benjamin has been snoozing well all night long. What a testimony to God's love!

Please pray that all would go smoothly, that we would be able to come home later this morning and that the older children would be obedient to their babysitter.

The big ONE!

2008-05-17T21:30:00.001-05:00

Make video montages at www.OneTrueMedia.com

That same old feeling

2008-05-14T14:35:00.002-05:00

Earlier today, I got a call from one of my dearest and oldest friends, Kristy. She was taking her daughter Parker to Texas Children's Hospital to have some tests run. The doctor is concerned that there is a neurological problem of some kind.

And that same old feeling hit me again. The feeling of doubt, of fear, of anxiousness. The questions resurfaced.... How could something be wrong with my baby? And the prayers began... Lord, please protect my baby! Lord give me strength, because I can't do this alone. My mother's heart hurt for Kristy because I knew what she was going through. I know all to well the feeling of complete and total panic that threatens to over take you as you drive to the ER.

Please pray for my friend Kristy, her husband, Jack and for sweet Parker. We don't know anything yet, but I will try to update once I know something.

This time last year

2008-05-12T22:38:00.004-05:00

This is me and my friend Erin, exactly one year ago at my baby shower. Three days later she and her hubby would welcome Will into their family (on my birthday!). Three days after Will's birth, we welcomed Benjamin into our family. And here are the boys now!! Old enough to fight over a soccer ball, but still best of buddies.
My, what a difference a year makes!

Erin, please still be my friend, even though I put a picture of you 9 months prego on my blog, without asking. Love you! :-)

A little update

2008-05-12T22:28:00.003-05:00

Today, Benjamin and I made our way to Austin and back for another helmet check. Thanks to Ms. Carol for keeping the big kids! The appointment went very smoothly, praise God! The helmet was, again, tight on the back/top part of his head, which is where the bone is growing in. How amazing technology and the medical field are, but not nearly as amazing as our God! Bud, the orthotist, said that he really doesn't think it will be much longer till Benjamin is done. Now, we're not sure exactly what that means as far as exactly when, but we know it means we are continuing in the right direction. Yipee!!! The warmer it gets, the more uncomfortable I see Benjamin getting. And let's not even start about the smell!

Tomorrow we go to the ENT for a follow up from his last ear infection. That's the ear infection where the doctor told us that his ear drum hadn't burst... yet. This is also the same ear infection that required over two weeks of two different antibiotics, and I'm still not sure he's 100%. So, we'll see.

And of course, Benjamin's birthday is this Sunday!! We are very much looking forward to celebrating his first year. What a year it's been! I'm hoping to blog a bit over the next few days about his birth.

Until then, here's one of my new favorite pictures. Benjamin has learned a new "trick", hugging! Doesn't get much better than this!

Benjamin's thoughts

2008-05-06T10:54:00.003-05:00

Benjamin would like everyone out there to know:

1. He's very tired of the bumper in his crib. So, it came out yesterday while I was trying to organize his room.
2. Benjamin's room is becoming less of a baby's room. I removed all baby blankets, burp rags, Boppy covers, and soon the changing table will be leaving as well.
3. The mobile that until yesterday hung in his crib, is no longer there since it was being used to practice his batting skills.
4. Walking is by far the best form of transportation!
5. The helmet is getting old, for everyone. Benjamin has learned how to take it off by yanking at it and by pulling on the velcro.
6. Stubborn should have been his middle name.
7. Benjamin is pleased to let everyone know that he will be in the helmet till he outgrows it, which is about 1 - 3 more months! There's a light at the end of this tunnel!
8. If you have a tub of baby wipes in your home, Benjamin would like you to know that he is cabable of pulling the wipes out, and either eating them or making trails of them through your home.
9. As any little boy must do, Benjamin has learned how to wrestle with his older brother, and has succeeded in pinning him. Unfortunately, Benjamin has not learned that his big brother is indeed bigger and can easily get out of the pinned position and sit on top of him.
10. And to make a nice even 10, Benjamin is pleased to announce that he no longer drinks formula!

Thoughts on my cranio kid

2008-04-23T09:26:00.004-05:00

Benjamin's first birthday is in just under a month away!! It's been a crazy year, to say the least. As I began working on his one year montage (it's just not a birthday in blogging land without a montage!) I found myself focusing on the craniosynostosis part of his first year, which seemed a little silly. Sure, it was a major part of his year, and will be a part of his life. But I decided that's not the main thing I wanted to focus on.

So, I'm going to focus on it here! :-)

Did you know.....?
Did you know that only 1 out of every 5,000 babies are born with sagittal cranio?
Did you know sagittal cranio is the most common?
Did you know that boys are more likely to have cranio than girls?
Did you know that cranio is listed as a "rare deformity"?
Did you know it's also listed as a birth defect?

As I typed the last two "did you knows" I couldn't believe that I was typing them about Benjamin. When he was born, Curtis and I thought he was perfect! Another beautiful, healthy baby! How could my beautiful baby have a rare deformity and a birth defect? Looking at him now, it's so amazing to see where God has led us! The change that he has under gone is truly amazing! But not nearly as amazing as the grace of God!

With the March for Babies coming up, I've been even more aware of the grace and goodness God has shown us. Just sitting in the doctor's office yesterday, I was reminded of God's grace when we met a family whose little girl had cranio. She's 18 months old, and hasn't been able to have surgery yet due to insurance problems. We met another little girl who was 22 months old and wasn't walking yet, due to hydrosephalis. When her mommy saw our 11 months old walking, she reminded us what a miracle it was.

"Why us?" is a question that I've thought over the past several months. Why do we have a son with these problems? Why has God chosen this path for us and Benjamin? Why couldn't we have caught this sooner? Why does God think I can handle this? Yesterday, I was reminded that my question should be, "Why us, Lord?" Why is our son doing beautifully? Why have you shown us your grace and favor? Why are we so abundantly blessed?

I have often heard our pastors say that the more we learn about God's grace, the more sinful we realize we are. So true!!! The more I see God's mighty hand, His righteous acts, and his hand of salvation, the more I realize I am totally unworthy! Praise God for his rich love, abounding mercies and saving grace!!

Another trip to Austin

2008-04-22T20:21:00.002-05:00

Benjamin was put into the car seat again today, and we made the now very familiar trek to Austin. This time it wasn't for a helmet check, but rather, an appointment with Dr. Aronin, Benjamin's neuro surgeon. (Can I just take a moment and say how CRAZY it is to know that your child has a neuro surgeon!)

Our day started out with a little bump. Both boys had to be seen by the ENT for ear infections. Micah's is fairly mild, Benjamin's was fairly severe. The doctor prescribed two weeks of antibiotics for Benjamin, and in three weeks we will go back to look at the possibility of tubes. That would be a blessing!

I was very anxious about this appointment to see Dr. Aronin. I had this feeling that something was wrong. Benjamin hadn't been himself the past week or so. He wasn't sleeping well, eating well, and was just seemingly out of sorts. So hearing that he had a massive ear infection was actually a relief. A reason for the tears, the sleeplessness!! After everything we've all been through with him, I feel like I'm just waiting for the next shoe to drop, to find out that something else is wrong with him. Praise the Lord for the timing of the ear infection! Something was wrong, but it wasn't any big deal and it's something that we can easily take care of. Isn't His timing perfect?!?

We were very blessed with two wonderful men, Josh and Eric, who watched the big kids for us so that Curtis and I could drive to Austin together. Thanks guys!

The appointment went perfectly! Benjamin's head looks great, the hole is closing up just like it should, and we just need to continue what we're doing. Yay!!! Again, praise God for his grace and goodness!

Benjamin will continue to wear the helmet till he "out grows it." That essentially means until they can't shave any more out of the inside. We're not sure exactly how long that will be. But we're going to the orthotist on Monday, and hopefully we'll get a few more answers then.

How can I keep from singing?

2008-04-12T09:59:00.003-05:00

Below is a video of what has become one of my favorite songs. The chorus says,
"How can I keep from singing Your praise
How can I ever say enough
How amazing is Your love
How can I keep from shouting Your name
I know I am loved by the King
And it makes my heart want to sing"

This is exactly how I feel right now! This past Thursday Benjamin went to Austin for another helmet check. It's become so routine, that I almost take for granted a good check up. But there was something about this trip that made me rejoice, and sing the praises of my King. Maybe it was because I had two loving friends caring for my older children, and I was peaceful about where they were and the care they were getting. Maybe it was because God gave me the entire drive to Austin to reflect on his love and goodness. Maybe it was because Bud, the orthotist, seemed especially pleased with Benjamin's head and the progress her is making. Maybe it was because I could see the hospital where Benjamin had his surgery, and it reminded me of all the love and prayers that were showered on us while we were there. Maybe it's because I remember very vividly what it was like the day of his surgery and the days following, and I am so thankful for where God has brought us. I'm not sure why I was so joyful this time around. But I was! And I wanted to share my joy with all of you who have been so faithful in prayer for us.

"I will lift my eyes
In the darkest night
For I know my Savior lives

And I will walk with You
Knowing You'll see me through
And sing the songs You give

I can sing in the troubled times
Sing when I win
I can sing when I lose my step
And fall down again
I can sing 'cause You pick me up
Sing 'cause You're there
I can sing 'cause You hear me, Lord
When I call to You in prayer"

We go back to Austin on the 22nd, to see the neuro surgeon. I'm really looking forward to again hearing how wonderful Benjamin looks, and how much great progress he has made. Most of all, I'm looking forward for another opportunity to sing, to praise God for his amazing love!

On The Go!

2008-04-08T13:58:00.004-05:00

Here are a few pictures of Benjamin's latest helmet decorations. The front says, "on the go" and the back has his name along the bottom, and stickers of different forms of transportation (cars, trucks, planes.... and more!). Benjamin, smacking his mouth while eating hot dogs.

Last night before the softball game.

We have a helmet check this Thursday. I'm anxious to see the orthotist because Benjamin has a rub spot. Not only is it red, but it gets really sweaty. It's gross!

In non-helmet related news, Benjamin has been taking a few tentative steps. He's been doing this for awhile, but not consistently, so I wasn't counting those first few steps. But as of late, he's really been becoming braver, and today he took SIX steps! Once my other two kiddos started walking, that was the end of crawling! Benjamin on the other hand, has been much more cautious. If he doesn't think he can make his destination is about four steps, he'll just crawl. Such a silly boy! I was talking to a friend last night, and we were laughing about the thought of Benjamin having to adjust to walking without the helmet. Poor guy's going to be running into walls!

Marching for Ben (and Adam and Andrew!)

2008-04-02T15:29:00.003-05:00

In just over a month, our family will be marching with Adam and Andrew in the March for Dimes March for Babies. Adam and Andrew were born very early, and we have been praying for them since before they were born! What blessings they are, and what amazing parents they have! Check out their blog for their amazing story.

Not only do we want to walk because of Adam and Andrew, but also for Benjamin. The March of Dimes has done research and donated money to others who are researching craniosynistosis, which is what Benjamin had. We are so thankful for how amazing Benjamin is doing, and know that it's only because of God's goodness to him. We are also thankful for how God used the medical profession to help Benjamin make such a wonderful recovery. So not only are we walking for Adam and Andrew, but for Benjamin, who too has received benefits from the March of Dimes.

If you can, please help us reach our goal, as we walk to give each baby a chance at a healthy start!

Turtle Helmet

2008-03-22T16:45:00.000-05:00

A new helmet design to match his Easter outfit.

Lollipop

2008-03-22T16:41:00.001-05:00

Spring Break?

2008-03-15T00:38:00.002-05:00

Not for the helmet baby! Thursday morning we left bright and early... scratch that... at 6:45 am when it was still dark outside, and headed to Austin for a helmet check. It was another uneventful visit to the orthotist, had more of the helmet shaved out, and got a great report. Praise God! Benjamin was super sweet to everyone there, and did lots of waving and kiss blowing.

After leaving Austin, we headed north to Kansas to spend our spring break with my family. We're having a great time, and Benjamin has enjoyed showing of his, "new head" (as I like to call it).

Mostly Irish

2008-03-08T18:33:00.001-06:00

Helmet says, "Kiss me, I'm mostly Irish."

Three Months later

2008-03-01T09:44:00.002-06:00

On Monday, it will be three months from when Benjamin had his surgery. We desire to tell everyone of the wonderful goodness God has shown our family, for the protection and healing He has given Benjamin, of the love and support we have received from family and friends, and of the covenant family who has blessed us. So this is my feeble attempt to share with others the great and mighty hand of God, as we have seen it in the life of Benjamin. Please praise God with me for all he has done!

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

"lucky"

2008-02-29T09:37:00.003-06:00

I just finished reading a friends blog where she vented about some of the comments she receives from people when talking about the premature birth of her sons. In no way have I had to deal with all that she and her boys have been through. But I could relate to what she was saying.

In conversations about Benjamin, I often hear, "Oh, you're so lucky to have a baby with a helmet! I'll bet every mother wishes her baby had a helmet."

Here are my thoughts (and vent) in response to that.

Are you kidding me?!?!

Sure, the helmet does give me a certain peace of mind now that Benjamin is becoming mobile. But I wouldn't wish to go through this again.

Yes, I'm sure every mother wishes she had to make major medical decision like we did. We were lucky to get to sign tons of paper work listing all the possible risks that our son could encounter during surgery. It was a ton of fun to get to sit in a waiting room for four hours, knowing that my baby was having having major surgery, losing blood, having a transfusion, and all the while I wasn't with him. He woke up to strangers, not me.

We were lucky to spend three full days in a hospital, two hours away from our other children and our church family, getting about three hours of sleep a night.

We are lucky to have made almost a dozen trip to Austin in a three month period. We are lucky to have to spend the money on food, gas, and of course medical bills.

I'm sure every mother wishes she could go through all that, just to have the reassurance that a helmet might bring.

I know people don't intend their comments to come across that way. I've often thought, "What would I say to a mom or dad if I saw them with a helmeted child, and didn't know why he was wearing it?" And I don't know what I would say. So, I would say nothing. And sometimes, I wish strangers would just say nothing too.

I don't consider myself, or Benjamin to be lucky. However, we are very blessed. We are blessed to have caught his craniosynistosis when we did. We were blessed to see a wonderful doctor, and be in a wonderful hospital. We are blessed with family and friends who have surrounded us with their love and prayers. And most of all, we are blessed with the daily grace to walk down this road and continue on this journey. It is truly amazing the grace that we have been showered with!

You're right Lindsey, that does feel better. :-) Until the next comment.

Look familiar?

2008-02-25T21:09:00.003-06:00

Stolen from Mr. Matt's blog.

Isaiah 59:17 He put on righteousness as his breastplate, and the HELMET of salvation on his head; he put on the garments of vengeance and wrapped himself in zeal as in a cloak.

1 Thessalonians 5:8 But since we belong to the day, let us be self-controlled, putting on faith and love as a breastplate, and the hope of salvation as a HELMET.

Melmet Check

2008-02-21T18:30:00.005-06:00

Just for the record, this is a happy face. A very happy face! And if you click on it, you can see a bigger version of his new teeth. Usually babies get their front two bottom teeth first. Benjamin got the tooth next to the front two bottom teeth first. The two bottom teeth are making their appearance now, as is one of the top ones.

This picture was taken this morning as we were loading up to head to Austin for a "melmet check" (as Micah calls it). Before I get to the details of the trip, the doctor's report was another good one. Benjamin's head has continued to get wider, and the circumference is bigger. The orthotist is very pleased!

You know how you have trips where lots of little things go wrong making it feel like everything is going wrong? That's kinda how today was. My friend Ashlee had graciously offered to ride with us. But her sweet daughter got sick. Normally I wouldn't care, but it seems that several of the kiddos in our church family have been sick. So far, we've avoided it so I thought it best to just go on my own. Curtis thought that the idea was pure craziness, and took the day off to come with me.

Before we had even started this morning, we found out the DVD player for the van was broken. The Elizabeth's Leap Pad started acting up. The boys were supposed to sleep on the way to Austin, but didn't. They did quickly fall asleep on the way to lunch though, making lunch a challenge. On the ride home, the baby did sleep, but somehow Micah stayed awake. Elizabeth feel sound asleep when we were about 15 minutes from the house.

So, Benjamin is already in bed, Micah is about to go down, and Elizabeth will probably be up till 10:00, which will be about the time Ben wakes up. Sigh. Good thing we love these crazy kids of ours! Oh, and did I mention that Micah has been up since 5:30 am?

All that aside, we are so thankful for how well Benjamin is going. Praise God for how smoothly things are going right now for him, and for how well his little head is healing. God is good!

"On him we have set our hope that he will continue to deliver us, as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many." 2 Corinthians 1:10-11

"I will give thanks to the LORD with my whole heart;

I will recount all of your wonderful deeds.

I will be glad and exult in you;

I will sing praise to your name, O Most High.

But the LORD sits enthroned forever;

he has established his throne for justice,

and he judges the world with righteousness;

he judges the peoples with uprightness.
The LORD is a stronghold for the oppressed,

a stronghold in times of trouble.

And those who know your name put their trust in you,

for you, O LORD, have not forsaken those who seek you.
Sing praises to the LORD,

who sits enthroned in Zion!

Tell among the peoples his deeds!"

Psalm 9:1-2 and 7-11

Grace

2008-02-15T18:03:00.002-06:00

So often, as a Christian raised in a Christian home, I quote scripture without really letting the full weight of what is being said sink in. For example:

"And we know that in all things God works for the good of those who love him, who have been called according to his purpose." Romans 8:28

During the time leading up to Benjamin's surgery, and in the days following, I kept telling myself, "All this is for my good and HIS glory." But I struggled to really believe it. How could all this work out for my good, the good of my husband, the good of my other children and most of all, the good of Benjamin? Nothing that was happening seemed good! It was far from good. I had to hand over my six month old son, and watch as strangers carried him down a hallway to have a major surgery where he would have his head cut open, and part of his skull removed. That didn't sound good to me. That moment when I would have to hand Benjamin to the doctor was one that I dreaded. When I tried to think about it, I couldn't. I literally couldn't handle it.

People kept asking me how I was doing, how I was holding up. And truthfully, I was shocked at how well I was doing. In the back of my mind though, I was a wreck. The thought of surgery, of handing my baby over, terrified me.

The day before surgery was providentially a Sunday. I received more hugs that day! And I kept hearing, "It's going to be okay." "We'll be praying." And I knew those words to be true. I kept telling myself, "For my good and HIS glory." Then a sweet elder in our church, Mr. Moehlman, came up to me. He asked me how I was doing, and I replied, "Right now, I'm okay." And he told me something that helped me through. "God gives us daily grace. Don't worry about tomorrow, because when it gets here, you will have the grace to get through it." Again, words I knew to be true, but words that weren't quite sinking in.

At just after midnight, the day of surgery, I nursed Benjamin for the last time before his surgery. I was dreading him waking up, hungry and wanting to nurse, knowing that I wouldn't be able to nurse him. Then, at about 4am, he woke up. And surprise, surprise, God gave me the grace to handle Benjamin's sadness and hunger. After Curtis and I got him back to sleep, I just laid in bed, thanking God for that grace, and praying that I would continue to receive it.

While we were in the waiting room with Benjamin I couldn't hold him. Poor guy was so hungry, and just wanted to eat! And at six month old, there was no explaining why Mommy couldn't feed him. So Curtis held him. When they took us back to the prep room, Benjamin kept reaching for me, crying to be fed. It was heartbreaking! The thought of handing Benjamin over to the doctor kept coming to mind. I was so afraid that I wouldn't get to hold my baby one more time before that moment. Not knowing what else to do, I started crying. But I didn't lose it like I thought I would. Again, God's amazing grace!

As Curtis and I were putting Benjamin in his hospital gown, he kept reaching for me, and I finally took him, not knowing how well he would do, being with me but not being able to eat. I held him, sang to him, and we prayed over him. And he fell asleep. Nothing but God's wonderful grace!!

The doctors came, and I handed Benjamin over to them, putting him in their care, but more importantly, I again handed my son over to his Heavenly Father. And that was it. The worst moment was over, and I was still standing.

God's grace and peace continued to wash over us through out the day. The moments I had dreaded passed because of the loving care of my Father. 24 hours after surgery, and I hadn't lost it! I say this not to boast in my ability, but in the power of my Savior! Today, when I think back over the day of Benjamin's surgery, it breaks my heart. I can't look at pictures from his time in the hospital without being brough to tears. God gave me the grace that I needed for that day, and for those moments.

"No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord." Romans 8:37-39

Because it's been awhile.

2008-02-07T14:21:00.000-06:00

Nothing much happening here. Thank goodness! We needed some "nothing happening" time.

Benjamin did have a helmet appointment on Monday morning. Everything looked great! The doctor hadn't seen Benjamin since he had his initial helmet fitting in January, and was very pleased with how well Benjamin's head is looking. The back of his head is just about perfect, so we are now working on the forehead area. Even though there is still room to improve, we are so thrilled with how well Benjamin is doing! Praise God!

We don't go back to Austin till the 21st, which is still two weeks away! It's nice to be on a more spaced out schedule.

Thank you to everyone who is continuing to lift Benjamin up in prayer. Your prayers are felt, and encourage us greatly! Please continue to pray that his recovery would go as well as it has so far.

New helmet design

2008-02-01T15:07:00.001-06:00

"My Life is a Zoo!"
front
back

Before and After

2008-01-28T19:24:00.000-06:00

Before surgery, front
Now, after surgery, front
Before surgery, top
Now, after surgery, top
Before surgery, profile
Now, after surgery, side

Isn't it amazing to see the change?!? A lot of people haven't been able to see the change since he wears the helmet all the time now. But last night at church, I took off his helmet to show off his new head. There was literally, and audible gasp. You can really tell a difference! Praise God for how he has worked in Benjamin's life, for bringing Benjamin to where he is. How good God has been to us, and how unworthy we are for all the grace he has shown.

Construction a HEAD!

2008-01-24T11:08:00.000-06:00

My onsie says: Construction Ahead

Look how big I am! Sooooooo big! Grandma taught me this new trick.

Our trip to Austin

2008-01-23T07:35:00.000-06:00

Yesterday we were in Austin for Benjamin's six week post of check-up. Everything looks wonderful! Praise God for his goodness and grace to Benjamin!!

Benjamin's head is now 1.5 cm shorter (from forehead to the back of his head) and 2.5 cm wider! Amazing! His cephalic index (CI) was 61% before surgery. A normal CI is between 70% and 80%. His CI now is 78%!!

We continue with the helmet till, as the doctor says, "He grows out of it." We'll go back to the neuro-surgeon in three months, which at this point seems like forever!

Thank you for all the prayers and support! Please keep them coming as we continue to walk down this road. Things can be challenging at times, and going to Austin every week this month has been a little exhausting. But God is good, and we are so thankful for how well Benjamin is doing!

Back in the Helmet Again!

2008-01-17T14:13:00.000-06:00

(Title to be sung to the song "Back in the Saddle Again")

Benjamin had a great appointment with the orthotist. Here's the deal with the whole knot on the back of his head. There is a triangle bone on the back of the skull. When the skull is moving, in this case do to remolding, that triangle bone is one of the first to move. When this bone moves, it pokes out. So the bump wasn't the "bad" thing. The "bad" thing is that Benjamin now has a callous where his helmet had rubbed on the bone. So they shaved a little out of the inside of his helmet, we watch to make sure it's getting less red, and that's it!

I asked the orthotist if I would still have to come and have his helmet check next week. She said that as long as The Bump is getting better (mainly less red) then we don't' have to come in till our appointment after that, which is Feb. 4th! Please be praying that the rubbing on Benjamin's head would stop and that his callous would improve so that we don't have to make the two trips to Austin next week.

Things are looking good! We are thankful that this was an easy fix, and that all this is caused by his skull moving, which is exactly what we want!

Back to Austin

2008-01-15T09:18:00.000-06:00

I talked to Hanger, the helmet place, a little bit ago and it's back to Austin for us on Thursday. And the really fun part is that our appointment is at 9am, so we'll have to leave here super early. And the fun just keeps on coming.....

Drama!

2008-01-15T07:30:00.000-06:00

There are some evenings that are calm, quiet, productive and very enjoyable. Then, there are the evenings where lots of little things go wrong, and all you want to do is go to bed and try again the next day. Yesterday was one of those evenings.

We had a great morning, followed by a nice lunch with Daddy and a visit from Gracie Mae and Ashlee. The boys began their naps, at the same time, and I was planning a quiet afternoon for Elizabeth and I. Benjamin pulled on of his old tricks and only slept for about 45 minutes. He spent the rest of the afternoon/early evening crying. Loads of fun!

Curtis had a meeting so I was bracing myself for a long evening with hopes that his meeting would be short. He left, and I got the big kids in the bath, while Benjamin was content to watch them and made happy screams at them. So far so good. Then, I took his helmet off. There was some blood on the inside of his helmet as well as on his head. Lovely! Upon further inspection I see that he has a sore on his incision (or is it a scar now?) which is oozing blood and puss. And upon even further inspection, I see that he has two such spots. I call my Mom who calls Ms. Terri, my parents best friend and a nurse to boot! She said call our pediatrician and be prepared for a light over reaction. I called the nurse hot line, and half an hour later, they call me back saying I need to call the surgeon. If I can't get a hold of Benjamin's surgeon, I should take him to the ER. Even though I knew that wasn't necessary, it still kinda worried the Mommy side of me which is already on high alert with Benjamin. I get a hold of the surgeon, and she says clean it four times a day, put Neosporin on it, leave the helmet off, and call her to let her know how he's doing. If he doesn't begin to improve, it will be a trip to Austin.

We've also been watching a red spot on the back of his head. Every time we take the helmet off, there's the red spot, but it quickly goes away. The rule is if it goes away within half an hour, it's of no worry. Well, it was still there after several hours AND there's a nice knot on his head to go along with the red spot. So I get to call the helmet place and odds are, end up in Austin for that.

And the icing on the cake is the Benjamin has what I think is some serious allergy problem. His nose his running non stop! And he has the cough, sneezes and watery eyes to finish his pathetic little face.

So, there's how our evening went yesterday! Here's hoping for a better go around tonight!

Prayers

2008-01-14T09:59:00.000-06:00

Yesterday, I was reading over some old blog entries, before we knew Benjamin's diagnosis, when everything was up in the air. I asked the readers of our blog to pray that Benjamin would not have craniosynostosis, or that if he did, he would be miraculously healed before surgery.

Today, I was reading a friend of mine's blog, and she was talking about God's sovereignty, even in the times that doesn't follow what our hearts would desire. Her blog reminded me of those prayers that I had prayed, asking God to spare my son from this deformity and from surgery. God told me no. My prayers didn't go unanswered, they just weren't answered the way I would have chosen.

So now, as we continue to deal with Benjamin's craniosynostosis, do I doubt God's sovereignty? Not at all! I'm still not sure why all this happened, and why God ordained these events for our son and our family, but I know that whatever God ordains is right. And what comfort I draw in knowing that that God loves me, he loves Benjamin, and all this is in his control, working for our good and his glory.

Because my Mommy thinks I'm cute

2008-01-12T19:58:00.000-06:00

Helmet Blooper

2008-01-11T18:54:00.000-06:00

When the orthotist drilled holes in Benjamin's helmet, she was very careful to avoid the stickers when possible. However, she was unable to avoid the "r" in "under". Every time I look at it, I think of "undies" and crack up. Today, I have managed to pick off the rest of the letters from "under". In my free time tomorrow, I'll move the word up. In other words, Benjamin might have a helmet that just says "construction" till it's time to redo it!

Helmet update

2008-01-10T21:23:00.001-06:00

Benjamin and I made the trip back to Austin for his helmet adjustment. All looks great! We weren't able to see our regular helmet guy (he just had his neck fused.... slacker!), but he had a very nice fill in. She said that everything looked good. There didn't seem to be enough pressure on Benjamin's forehead, so she added a little pad in. The whole point of the helmet is to keep continual pressure on the forehead and the back of his head to help skull growth.

She also drilled multiple holes into the helmet. I thought this was to help with ventilation, but really, it to help them test the helmet. The stick these little probes into the holes, and that determines if the helmet is touching in all the right places. Right now it's just guess work based on the pink spots on his head when the helmet is removed.

Something else I learned today.... Benjamin's head has been becoming less and less sweaty. The orthotist said that his head has learned a new normal temperature, and now his body can better regulate that temperature, thus causing less sweating. Cool! (literally!)

On the down side, we weren't able to get our next helmet check appointment for the 22nd (the day we have Benjamin's 6 week post op appointment). Bud, the orthotist, isn't in the office on Tuesdays or Wednesdays. So we called the neuro surgeons office to see if we could move that appointment. Nope, she's only in the office on Tuesdays and Wednesdays. Dang it! So we will be going back to Austin on the 22nd to see the neuro surgeon and on the 24th for the next helmet check. Oh the miles we will be putting on our van!

After Benjamin's appointment, we went to a sandwich shop, which happens to make GREAT Oreo shakes, so that we could get a bite to eat before getting on the road again. I was feeling a little tired, and frustrated with having to do all this driving, and was just worn out in general. Providentially, I struck up a conversation with a couple, after I noticed their hospital bracelets. They had a daughter in the hospital where we had Benjamin's surgery. They were very sweet, asking about Benjamin, talking to him and making him smile. I asked why their child was in the hospital. "Open heart surgery." Wow! Open heart durgery on their six month old who is the size of a newborn. And I was complaining about driving? I took that moment, praised God for how "easy" we've had it with Benjamin, and had a much better attitude on the drive home.

A Cutie

2008-01-08T22:13:00.000-06:00

I took this over Christmas. I think he looks so sweet. And a little bald.

Things I'm learning

2008-01-08T18:20:00.000-06:00

Nursing a baby with a helmet is like nursing a bowling ball.

The helmet stinks. I had been warned, but I didn't know how quickly it would start or how terrible a seven month old can smell just due to BO. Poor Benjamin, I keep checking his diaper, that's how bad the smell is.

So far, only children have been bold enough to ask "Why is he wearing that?"

Wal Mart sell really sticky velcro.

My older kids LOVE helping clean the helmet.

Mod Podge can be used to help seal a helmet, or glue a puzzle.

Day 2 and decorating the helmet

2008-01-05T14:13:00.000-06:00

Day 2 in the helmet is going fabulously! Benjamin actually slept in his helmet ALL night long! And only woke up twice! Yay!

He's been wearing the helmet almost all the time. We take it off every couple hours to check for rubbing, but all looks great so far.

We went out with him in the helmet for the first time. It wasn't nearly as bad as I was imagining, which is typical for me. We did get several looks, but no one asked us about his helmet or head.

And I finally decorated it!! Here's the end result. (If you can't see what the helmet says in a few places, just click on the picture to get a close up) front
left
back
right
Benjamin showing off his cool helmet.

Helmet, Day 1

2008-01-04T12:22:00.001-06:00

As you can see form the pictures below, Benjamin is adjusting quite well to his new helmet. I was a little concerned last night, when he was wearing it for the first time, and he began screaming and smacking his helmet. :-)

Our orthotist (the helmet doctor) has Benjamin on a 4 hour cycle schedule to help him get used to the helmet. It goes like this.
Day 1: 1 hour in helmet, 3 hours out.
Day 2: 2 hours in helmet, 2 hours out
Day 3: 3 hours in helmet, 1 out.
Day 4: 23 hours in helmet, one hour out for cleaning.

Benjamin has been wearing his helmet for about an hour and a half at a time so far today. The orthotist said that he can wear if as long as he wants, but wanted me to know that he didn't have to start out wearing it full time.

So by Monday, he should be wearing it full time (23 hours a day). He hasn't had to sleep in it yet, and that's one of my biggest "concerns". Those of you who know Benjamin well know that he doesn't like to sleep. At all. We were just starting to make some progress at nap time, and I'm worried that we'll be back at square one. Good thing God is sovereign, right?

Benjamin has had some crawling issues in the new helmet. When he moves from a sitting position to a crawling position, he usually ends up doing a face plant. When I tell him to try again, he just lays on his back, and looks at me like this is all my fault. I guess that's better that crying!
He's ridden in has car seat with it on, and that doesn't seem to effect him too much. He really is doing super!
Elizabeth and Micah are totally excited about Benjamin's new helmet. They want him to wear it all the time! There are moments where Benjamin gets a little frustrated with the helmet, and Elizabeth has been especially sweet with distracting him.

All in all, I would say day 1 is going much better than I was anticipating! I'm going to try to get his helmet decorated sometime today or tomorrow. I'll do that in my "free time"! Ha!

Helmet info

2007-12-28T20:47:00.000-06:00

This is not Benjamin. :-) But this is a pretty cute kid! I've had a hard time finding a picture of the kind of helmet that Benjamin will be wearing, so when I finally found one, I had to share! Here's the web site where I got it.

Helmet and head shots

2007-12-27T21:26:00.000-06:00

Lookin' good, isn't he? We're very impressed with how nice and round the back of his head is. Now, it's time to work on the front! Here's the info on the helmet.

On the 21st, we went in for Benjamin's helmet scanning. It was so easy! Bud, the orthotist, put on this stocking cap, cut our his face and ears, and used a scanner like you would see at a store, and scanned his head. He "swept" the sides, front, back and top and POOF there was a 3D image of Benjamin's head. Bud will send the image to the helmet place, and we'll pick up the helmet on the 3rd.

Benjamin sporting his stocking cap. Doesn't he look adorable?

Seeing is Believing

2007-12-26T20:38:00.000-06:00

When people see Benjamin, I hear a lot, "It's just so good to see him!" or "I knew he was doing well, but can I hold him, just so I know for sure?" or "Can I hug him?"

While we were at my in-laws' church, I heard this a lot. I heard this a lot because everyone there was praying for us. There are times when I hear that someone is praying for Benjamin, but I KNEW these people were praying for us. And it was such a blessing! It was such a blessing to have the pastor point Benjamin out during announcements, and praise God with us for how well Benjamin is doing. It was a blessing to have people want to hold him because they felt connected to him, and wanted to hug him. So a huge thank you to everyone at Central Christian Church in Wichita Falls. Thank you for loving us, praying for us, and praising God with us!

Back to Austin

2007-12-19T12:02:00.000-06:00

For our first helmet appointment! We'll be leaving here at noon on Friday, our appointment is at 2:30, and will take about an hour to an hour and a half. Once we're done, we'll hit the road and head to Wichita Falls to see Curtis' family.

This morning Curtis and I were talking about how it would be perfect to have our appointment on Friday afternoon, since he only has to work a half day and we could just get on the road. Once again God is showing us his great grace!

Another exciting fact that we just discovered is that Benjamin won't have to have a head molding. There's new technology that allows the doctor to just do a scan of his head along with a few measurements. Not that I was dreading the molding process, I'm just thankful it will be a little easier.

From what I've heard, we will be getting the helmet about two weeks after our initial appointment, which works out perfectly with our holiday traveling. We really couldn't have planned things even better, which just goes to show that it really isn't our plans to begin with.

God is so good!

ready for Christmas

2007-12-18T22:51:00.000-06:00

Taking a break from thinking about the whole head thing, and just enjoying my sweet baby boy's first Christmas.

Or at least trying to.

Numbers game

2007-12-17T14:49:00.000-06:00

Here are a few numbers from that past few weeks.

3 trips to Austin
3 hours of sleep the night before surgery
185 hits to our blog the day of surgery
131 visitors to our blog the day of surgery
10 different countries represented in our visitors
7 friends and family members waiting with us during surgery
4 1/2 hours from the time we left Benjamin till we talked to the doctor
3 IVs
4 monitors
1 drain for his head
80 stitches
2 1/2 lbs gained from swelling
countless prayer!

In the strangest places

2007-12-15T16:23:00.001-06:00

During the whole process of Benjamin's surgery and now recovery and as we look to the next phase (helmet) I have found encouragement in different places... songs, random strangers, friends of friends. I've also found encouragement in some not unusual place...scripture, God's people, family and friends.

While we were driving to Austin for the surgery, there were many emotions running though my heart and mind. We had just left our oldest two, and even though were very comfortable with the care they were being left with, it was still hard. We were on our way to a town we hadn't spent much time in, where we didn't have family, our church, and we were going to be putting our son through major surgery. One minute I would be fine, the next moment I would be crying. I was overwhelmed, to say the least. I heard this song, and the part I've bolded really touched me.

Breath Of Heaven

I have traveled many moonless nights,
Cold and weary with a babe inside,
And I wonder what I’ve done.
Holy father you have come,
And chosen me now to carry your son.

I am waiting in a silent prayer.
I am frightened by the load I bear.
In a world as cold as stone,
Must I walk this path alone?
Be with me now.
Be with me now.

Breath of heaven,
Hold me together,
Be forever near me,
Breath of heaven.
Breath of heaven,
Lighten my darkness,
Pour over me your holiness,
For you are holy.
Breath of heaven.

Do you wonder as you watch my face,
If a wiser one should have had my place,
But I offer all I am
For the mercy of your plan.
Help me be strong.
Help me be.
Help me.

Breath of heaven,
Hold me together,
Be forever near me,
Breath of heaven.
Breath of heaven,
Lighten my darkness,
Pour over me your holiness,
For you are holy.
Breath of heaven.

As many of you know, or can assume from the words, this is a song sung by Mary. Now, I'm not trying to compare the thoughts and emotions that Mary must have gone through as she carried and gave birth to Jesus to the emotions that I was feeling. But I can relate to the emotion that this song portrays.

The lines, "Hold me together" became a prayer of mine during Benjamin's surgery and the days in the hospital. God was so gracious! As I look back, and relive some of those emotions, I don't know how I did it. How did I not completely lose it as I watched my son lay in an ICU bed with seven wires coming out of his little body? How did I keep any kind of calm while I watched him go through pain before his next dose of morphine? Because God was answering my prayers, holding me together, and being forever near me.

Praise God for his comfort, for his love, and for answering the prayers of his people!

Helmet Time!

2007-12-12T19:42:00.000-06:00

It was back to Austin for Curtis, Benjamin and I today. He had his one week post of appointment. Everything looked GREAT! The doctor was very pleased with all the progress Benjamin's made. She did however, want to put Benjamin in a helmet to help his head shape the correct way. So, that's the next step in this journey. we'll be jumping through more insurance hoops. :-)

Praying for Joshua and Elijah

2007-12-11T18:33:00.000-06:00

I received this post a few days ago, and I was truly touched by this father's heart and prayer. I had noticed that we had a visitor from Australia, and it was so neat to have him post. Please keep this family in your prayers, as you continue to also pray for Benjamin.

G'day. My son Joshua(4) was born with Sagital Craniosynostosis.He had his first operation @ 3 months, 2nd @ 12 months, 3rd @ 18 months and last at 2yrs 2months. My wife and I just had our 3rd, Elijah(6 weeks) and it appears he may also have cranio synostosis.We also have a butiful daughter Amanda who is 6. Can you please pray for them both as Joshua's titanium plate in his head appears to be bending under the skin and he has a screw loose(no pun intended)and the Doctors don' want to repair it and Elijah's back seutuers have started to overlap. I know God can intervene and repair or even heal both yours and our boys. I believe that the more prayer He hears,(in Jesus name) the greater the chance of healing. I Love God with all of my heart and I can tell from this Blog that you do to. Even though you are on the other side of the Pacific Ocean we can pray together for our beautiful boys and our families.May God bless you and guide you forever. With love in Christ Jesus. Amen.

My funny head

2007-12-10T21:03:00.000-06:00

Looks normal, and cute.
A bird's eye view. We can tell a HUGE different in the back of his head.
A side view. Lookin' good! We are amazed at how well the incision looks.
We've begun noticing that Benjamin's head is a little lumpy in a few place. It's amazing to see how much his head has changed in just a week! If you look at the top part of his head, towards the front, it looks like there's a big bump (you can see it in the picture above this one). Actually, it's where his skull starts again! There's a dip where the skull had been removed. Crazy!

We continue to be amazed and so thankful at how well Benjamin is doing. I praise God for all he has done for Benjamin!

Six Days after Surgery

2007-12-09T16:53:00.000-06:00

The issue of swelling was one that I was very worried about. We were told that the swelling could get so bad that his eyes would swell shut. It never got that bad, and we are very thankful for that! Here's a kind of progression of Benjamin's head. Tomorrow, which will be one week since surgery, I'm hoping to post some before and after pictures. We'll also get to remove all the bandages, and give him his first hair washing since surgery!

Night before surgery.
A few hours after surgery, in the PICU.
Tuesday morning, almost 24 hours after surgery. Notice the left side of his face is more swollen. He slept with his head tilted to the left and the swelling "migrated".
Getting ready to leave the PICU, just over 24 hours after surgery. This is about when his swelling peaked.
Wednesday afternoon, over 48 hours after surgery.
This morning, six days after surgery.

Benjamin is doing great! I am amazed at how gracious God has been to him, and to us. I'm not surprised, just amazed. How undeserving we are of all that he has given us, and how good He is!

Here are a couple answers to some FAQ.

We go back to the doctor on Wednesday. At that point, the neuro surgeon will determine if a helmet is needed. Before we left the hospital, she said that she is so pleased with the progress his little head is already making that we might not even need to do a helmet. That would just be the icing on the cake!

If Benjamin does need a helmet, she will write a prescription, and we will take it from there. We don't even know where we will be going for the whole helmet fitting. It might be back to Austin, or it might be in Houston. I don't think we'll be able to stay here. We'll have to wait and see where our insurance sends us. It's so comforting to know that we can trust in God, and know that he will lead us just where we need to be.

Tomorrow, when I wash his hair, his stitches will just come out. They are absorbable, and will have absorbed as much as they need to. So you may get your first peak at his scar tomorrow!

Even though Benjamin's doing better than we could have imagined, we are keeping him out of any nursery type environment. It's easy for me to forget that he had major surgery and a blood transfusion, since he's doing so well. So please don't take offense if you come to visit and I ask you to wash your hands. I really don't think you're dirty! :-)

Things at home seem to be going as smoothly as expected. The older kids are being very loving to Benjamin! Elizabeth is retesting every boundary at the moment, so we are praying for more grace and patience to show to her.

Again, thank you all so much for your prayers! I can't tell you how many times this past week I stopped and thought to myself, "Why am I not freaking out yet?" Only by your prayers, and the grace of God!

Going home pictures

2007-12-06T14:04:00.000-06:00

Home!

2007-12-06T10:41:00.000-06:00

Wanted to let everyone know that we got home last night! Yay!! We got in about 10pm, got some good sleep, and are ready to get back to normal.

A couple things you could be praying for:
Benjamin's continued recovery.
Gentleness for Elizabeth and Micah.
Smooth transitions for all five of us.
Rest.

Our day (so far)

2007-12-05T12:42:00.000-06:00

Today has been a very busy one. We had another good night with Benjmain and I got sleep! All the nurses are saying "Later today, when you go home....." Yay! Things are looking really good for us to be out of hear this evening. Of course it will all depend on what the doctore says today.

This morning I got a lesson in incision care. Yuck! But, I managed. We'll have tot clean and redress his incursion every day, twice a day for another week. The worst part is when we take off the tape, which is somewhat in Benjamin's hair, and he screams.

After Incision Care 101, it was bath time! Sponge bath, that is.

"I'm not so sure about this, Mommy!"
"Being clean feels good!"
"Yummy towel!"

After his bath, we got him dressed in some snuggy clothes from Grandma, and went to the cafeteria. He was quite the hit! Everyone talked to him, smiled at him, and was very sweet as we maneuvered his wagon around the halls and elevator.

"Since Mommy and Daddy forgot my pacy, I guess I'll use this thumb!"

Wireless!

2007-12-04T19:44:00.000-06:00

Today has been a busy, but very good day. Here's a little recap. Benjamin woke up this morning after an okay night. He was up at 5 am, happy talking, smiling, and pretty swollen. He had laid on his left side, so you can see in the picture, the left side of his face is a little more puffy. We think he looks more like Micah now!
I stayed in the PICU with Benjamin, while Curtis went to the Ronald McDonald house. He came back at 6 am, at which point my Dad came to take me to get cleaned up. As a bonus, I got to have some nice time with him and a yummy breakfast. When we got back to the PICU, Benjamin was sleeping, but woke up very happy. In the picture above, he was talking at the camera.
Papaw and Memaw came for a visit before heading back home. At this point, we were still in PICU. Not too long after they came, we were able to move to a regular room! Yay!! Before we left the PICU, they took out his arterial line.
Once we were in our regular room, Benjamin lost two more wires when they took out the IVs and we took off the monitors. They left the IV port, just in case he might need it later (one in his hand, one in his foot). He also still had the blood ox monitor on his toe, and the drain in his head.
Now that he was a little more wireless, we all enjoyed some time holding him, and loving on him. Grandma was very smart, and put a sock on Benjamin's foot which allowed one less wire to be dragging around.
Our best friends the Findleys made the trip here to see us. What a treat it was to see them, and have their love and support. Mom stayed with Benjamin while we went to the cafeteria for lunch. A nice treat!
Once we got back from lunch, things got a little exciting. I started to nurse Benjamin, only to have Michael point out that there was blood on my shirt. Of course I immediately thought it was from the drain in his head, and I kinda freaked out a little. But, somehow, Benjamin had pulled out the IV port in his hand, even though he had a sock taped on. By the time we got his cleaned up, I was a mess. I handed him to Curtis, and Benjamin quickly threw up on Curtis. Special! After all the excitement, he was ready for a nap, so we put him in some comfy clothes, got a wagon, and Daddy took him on a ride while Mommy and Grandma got a change of clothes.
What a sweet boy! He was quite happy this afternoon. I think it was because of all the good loving that he got from our friends and family in the morning.
More smiles!
Grandma ran to get some dinner for Curtis and I. She came back with dinner AND some toys AND some clothes that will work with his tender head and IV port in his foot. The Findleys also brought him a toy. He had fun playing in his crib this evening.

Finally, after much waiting, our doctor came to check on him. She took out the drain, and gave the okay to take off the blood ox monitor on his toe. He's now wireless. She then removed the dressing, and we got our first peak at his incision. It wasn't bad! Poor Benjamin cried and cried, mostly because the hair that was left was being pulled.

Then came the best part of the day. Our doctor told us that if Benjamin has another day like today, she might let him got home TOMORROW! So pray that we would all have a good night, and that Benjamin would have a good day tomorrow so that we can head home.

Thanksgiving

2007-12-04T03:06:00.000-06:00

"You will keep in perfect peace

him whose mind is steadfast,

because he trusts in you.
Trust in the LORD forever,

for the LORD, the LORD, is the Rock eternal."

Isaiah 26:3 and 4

Father God, you are the perfect peace! You are faithful, and I praise you for your faithfulness to our family. God, you have been so good to us! You grace has been more immense than I could have imagined. Even during the hardest part of my day, you were there giving me the peace you promised.

Father, I thank you for the gift of prayer, and for Christ our mediator. Even when my heart didn't know how to pray, even when there were no words, you heard the cries of my heart. I praise you for your love! And I thank you for the prayers of your church. May all the prayers offered to you on our behalf bring you ultimate glory.

My heart is full of thanksgiving! Thank you for graciously bringing Benjamin through his surgery. Thank you for attending to our every need. Thank you surrounding us with family. Thank you for our friends, who support and encourage us. Thank you for your church universal, for all the saints who were praying for our family. Father, you are good! Your steadfast loves endures forever!

"I will extol the LORD at all times;

his praise will always be on my lips.
My soul will boast in the LORD;

let the afflicted hear and rejoice.
Glorify the LORD with me;

let us exalt his name together.
I sought the LORD, and he answered me;

he delivered me from all my fears.
Those who look to him are radiant;

their faces are never covered with shame.
This poor man called, and the LORD heard him;

he saved him out of all his troubles.
The angel of the LORD encamps around those who fear him,

and he delivers them.
Taste and see that the LORD is good;

blessed is the man who takes refuge in him.
Fear the LORD, you his saints,

for those who fear him lack nothing.
The lions may grow weak and hungry,

but those who seek the LORD lack no good thing.

The eyes of the LORD are on the righteous

and his ears are attentive to their cry;
the face of the LORD is against those who do evil,

to cut off the memory of them from the earth.
The righteous cry out, and the LORD hears them;

he delivers them from all their troubles.
The LORD is close to the brokenhearted

and saves those who are crushed in spirit.

A righteous man may have many troubles,

but the LORD delivers him from them all;
he protects all his bones,

not one of them will be broken.
The LORD redeems his servants;

no one will be condemned who takes refuge in him.

Psalm 34: 1-9 15-20, 22

Good night

2007-12-03T21:54:00.000-06:00

After my last post, we had a ton of wonderful visitors! Our pastors came up to visit. Past Jon had been here all day, and Pastor Wade drove from the Dallas area to be here. What a blessing! Then it was time for the grandparents to come and say good night. And thank you Northern Krajcas for the great picture frame! So sweet!

During our time with all our visitors, I was able to hold Benjamin. Yay! Then Curtis got a turn, but Benjamin wanted Mommy, or rather, Benjamin wanted to eat! So I was able to feed him. After we got him and all his cords (he has an arterial IV, two regular IVs, the drain in his head, and two different monitors) in bed he was sweet and even made a few little smiles for us.

So, enjoy the smile! Good night from the PICU!

Our day in pictures

2007-12-03T19:03:00.001-06:00

Okay, this was actually taken last night at the Ronald McDonald House. Poor guy didn't know what he was in for.
This picture is for Michael and Charles A, we may not have gotten Big Macs, but we could get McDonald cookies!
Daddy and Benjamin in the waiting room.
Mommy and Benjamin in the waiting room.
Grandma and Grand-Daddy with Benjamin in PICU. (We didn't get a picture of Papaw and Memaw, but they were they, and we'll get pictures of them tomorrow!)
All hooked up. Notice the pacy!
Daddy time.
Mommy time.

Resting well.

Mommy's Update

2007-12-03T18:43:00.000-06:00

THANK YOU! Your prayers have been felt, and God has been so gracious to us! We praise him for His love and grace that he has bestowed on our family.

I am currently sitting in Benjamin's PICU room. God answered some very specific prayers, and we can have three people in the room at a time. Originally, I was told it would only be one person at a time.

Right now Benjamin is resting. He is still very sleepy from the surgery, as well as the morphine they are giving him to control the pain. Overall, he's done beautifully! There have been a couple times, right when it's time for more morphine, that he gets upset, cries, his blood pressure goes up, as well as his heart rate. But for most of the afternoon, he's been resting well.

Right after he woke up in recovery, I was able to go back and hold him, and try to nurse. He's been too sleepy to eat, but it made this Mommy's week to get to hold him. I was alone when I saw him for the first time, but he looks GREAT! The peace that I felt at that moment was unreal. Truly, and answer to prayers.

Thank you again for all your prayers! Please keep them coming as we walk through the rest of the recover process. We will be in the PICU till sometime tomorrow, as long as Benjamin is doing well. Then it will be a few days in the regular recovery room. He's doing great, and we pray that it will continue.

Praise God for His Blessings

2007-12-03T13:21:00.001-06:00

Greetings to all our dear friends...this is Kierstyn's dad, Marlon reporting.

The doctors informed us about 12:45pm that the surgery was complete and Benjamin was in recovery. Everything went well and as the doctors had planned. Shortly after 1:0pm, Kierstyn was called back so that she could see and nurse Benjamin...something that I think they both were looking forward to!

While we are thankful for the skills of the doctors, staff and everyone who has tended to Benjamin through this process, we are first thankful to God for his grace and mercies that sustain us daily as well in instances of our specific need. Secondly, for all the saints who interceded on behalf of Benjamin with us and friends and family around the world. This has reminded us afresh of the many blessings of family and the Church.

Thank you for your love and support.

For all of us,
Dad

In Austin!

2007-12-02T21:56:00.000-06:00

We have made it to Austin! Even though our afternoon was a busy one, we accomplished everything we needed to, left the kids in good spirits and in loving care. Here's how you can pray for us.

Peace during the surgery tomorrow.

Safety for Benjamin during the surgery.

Protection from infection or other complications.

Obedience for Elizabeth and Micah.

That in everything we do, Curtis and I would bring honor and glory to our Savior.

We'll keep you posted!

The plan

2007-12-01T07:41:00.000-06:00

"Many are the plans in a man's heart, but it is the LORD's purpose that prevails." Prov. 19:21

Here are our plans for the next few days. Please pray that in all things, even are plans, we would honor and glorify God.

Benjamin, Curtis and I will be leaving for Austin tomorrow evening, about the same time the kids will be going to Covenant Kids at church. My Aunt will be coming into town to take care of the big kids for the first couple of days. Curtis' Dad and his wife are going straight to Austin tomorrow afternoon, and we will meet up with them there. My Dad is with us now, helping us work through all the final details. My Mom will be coming in at some point tomorrow, though we're not sure if she will come here, or to Austin. Curtis and I are hoping to stay at the Ronald McDonald house for our time in Austin, but won't know for sure if that's going to work tomorrow morning.

Monday morning we have to be at the hospital at 6:30. The surgery starts at 8:00. we're not sure if that means they are going to take Benjamin back at 8, or if the actual surgery starts at 8 so they'll take him sooner.

The surgery will last between three and four hours. Our parents will be at the hospital with us, as will our pastors, and some wonderful friends who live not too far from Austin.

After the surgery, Benjamin will be in the PICU for 24 hours, most for observation. If he is eating well and doesn't spike a temp, we will be moved to a regular room in the surgery recovery wing on Tuesday. Tuesday is also the day our parents will be heading home, provided all is going well. My Mom will be heading here to relieve my Aunt of kid duty. And she is staying with us indefinitely after we get home.

We are anticipating coming home on Thursday.

As far as long term plans, we really don't' have any. At this point, we're totally focused on making it through the next few days. We know that we will be in Austin more for follow up appointments, but we don't know when or how often. We know that he will be put in a helmet to train his head how to grow correctly. But we don't know when and where all that will happen, or how long he will be in it.

Please continue to keep us in your prayers. Every day when I wake up, I know we're one day closer to Benjamin's surgery. Every day the reality of the situation becomes more real, and I become more nervous. Praise God for His peace! Praise God for the prayers of his people!

The details

2007-11-30T08:50:00.000-06:00

There seems to be a high interest in the details of Benjamin's surgery. So, for those of you who have the stomach for this kind of stuff, here are the details of Benjamin's surgery. (Lee Nickles, stop reading now!)

Once he's out (a process which will take about an hour), the doctor will make a zig-zag cut across the top of his head, from one ear to the other, kinda like a head band. She will the roll back the scalp, exposing the skull. Then she will give Benjamin the soft spot that he doesn't have by removing a strip of skull on the top of his head. Then she closes him up, and he goes into the PICU. The whole surgery will take three to four hours. I'll be finding out later today the details of when we need to be there, and when they will take him back.

During the surgery, he is expected to lose a lot of blood, and will probably require a blood transfusion. After the surgery, we have been told to expect a lot of swelling. The swelling will peak about 24 hours after surgery, and his eyes might swell shut. There is also the probability of bruising.

On a less depressing note, I've heard from several people that babies usually come through the recovery process very easily. We hope and pray this is the case with Benjamin.

Hospital info

2007-11-29T10:58:00.000-06:00

I've had several people ask, so here's some info about the hospital.

Benjamin's surgery will be at Dell Children's Medical Center. Go here for direction and parking info.

If you're interested in coming up to the hospital, we would love to see you! The first 24 hours after surgery he will be in the PICU. Right now, it looks like we won't be able to have anyone but Curtis and I visit him while he's in PICU. And only one parent can be in there at a time. So, it might not be best to visit on Monday or early Tuesday. But don't worry, we have LOTS of family and friends already coming. :-)

We are hoping to leave on Thursday. We'll try to keep everyone posted through the blog on Benjamin's progress.

All that to say, we would love visitors if you can make the trip. But if you can make, plan on coming on Tuesday, Wednesday and maybe Thursday, depending on when we are leaving.

Thanks for all the love!

my prayer

2007-11-28T22:29:00.000-06:00

"Rejoice in the Lord always; again I will say, Rejoice. Let your reasonableness be known to everyone. The Lord is at hand; do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus. Finally, brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things. What you have learned and received and heard and seen in me—practice these things, and the God of peace will be with you." Phil 4:4-9

Father, I pray tonight that you would help me to rejoice. I have so much to rejoice in, you have been so good to me! You are the only source of true joy. Your gift of salvation makes me rejoice! Thank you for sending your Son.

I also pray that you would grant me the peace which surpasses all understanding. Help me to not be anxious, but to trust in you, and rejoice in the promises that you have made to me.

And finally, I pray that you would help me to meditate on you. Guard my mind from thoughts of doubt. Remind me of your love, faithfulness and help me to reflect and think on you and you attributes.

Amen.

Breathe in, breathe out.

2007-11-27T21:41:00.001-06:00

That's what we're doing right now. Trying to just breathe in and out.

Today we had Benjamin's appointment with the neuro surgeon. Just by an examination, and some measurements, the doctor determined that Benjamin does indeed have craniosynostosis. He will be having surgery on Monday morning.

Things are going very fast right now, and we are feeling slightly overwhelmed. I will try to fill in more details when I've had more that four hours of sleep, and that's not tonight!

Thank you to everyone who was praying for us today. I've talked to several people who all have said, "You seem to be holding up pretty well." And I (we) are. But I know it's only because of all the love, prayers and support we are getting for all of you. Thank you!

Really?!?!

2007-11-20T12:36:00.000-06:00

While reading some information for parents who are looking at the possibility of cranio surgery, I found a list of things to do. Here's one of them.

"Use prayer support through your church. Research shows that patients who are prayed for do better than their counterparts who aren't."

Really?!?! I'm shocked! (Note sarcasm).

What a blessing it is for Curtis and I to know how prayed for we are! Thank you to everyone who is waiting and praying with us.

An update

2007-11-19T14:51:00.000-06:00

We have an appointment with the neuro surgeon! God is good! It's for next Tuesday, at 10:45. She will assess Benjamin and see where we need to go from there (as far as tests... x-rays, CTs).

We are driving straight to Austin on Monday night, rather than coming home home from our Thanksgiving time in Kansas. Our friends, the Gallaghers have graciously opened there home to us, and offered to babysit the big kids while Curtis and I take Benjamin to the doctor. Praise God for the covenant family!

Thank you for your prayers!

Psalm 71

2007-11-19T14:27:00.000-06:00

Be my rock of refuge, to which I can always go; give the command to save me, for you are my rock and my fortress.

For you have been my hope, O Sovereign LORD, my confidence since my youth. From birth I have relied on you; you brought me forth from my mother's womb. I will ever praise you. My mouth is filled with your praise, declaring your splendor all day long.
But as for me, I will always have hope; I will praise you more and more. My mouth will tell of your righteousness, of your salvation all day long, though I know not its measure. I will come and proclaim your mighty acts, O Sovereign LORD; I will proclaim your righteousness, yours alone. Since my youth, O God, you have taught me, and to this day I declare your marvelous deeds.
Your righteousness reaches to the skies, O God, you who have done great things. Who, O God, is like you?
I will praise you with the harp for your faithfulness, O my God; I will sing praise to you with the lyre, O Holy One of Israel. My lips will shout for joy when I sing praise to you— I, whom you have redeemed. My tongue will tell of your righteous acts all day long.

This is the prayer we pray, and this is the pray we hope Benjamin will pray someday.

Psalm 71: 3, 5-6, 8, 14-17, 19, 22-24

Father, may your praise ever be on our tongues! May our children ever sing of your marvelous acts and of the mighty deeds you have done!

Praying

2007-11-16T22:57:00.000-06:00

Heavenly Father, I come to you tonight because you are the only source of truth, life and hope. You know every details about my son, and in that, I draw my hope. Thank you for the promises that you have made to Benjamin: to prosper, not harm him; to work all things our for his good and Your glory. And I pray that is what would happen. Father, I pray that through all of this you would be given the glory. Use my son, my family, and me to bring you the honor and glory that is due to your name.

Father, I pray that your will would be accomplished in my family. Even when I don't understand, I know that no plan of yours can be thwarted, and that your will is perfect. You are good, God! I praise you for your faithfulness. I praise you that you are all knowing.

Tonight, I pray that you would be my comfort and my portion. Sustain Curtis and I as we are going down this road. Draw us closer to each other, not letting the emotions and stress of the day distract us from you. We love you, Lord! I pray that we would be you glory in the daily walk of our lives.

If it's your will, please help Benjamin to not have these problems. Help him to not require the surgery, but rather a less invasive solution. I pray that you would work mightily in his little body! And Father, if it's your will to have Benjamin undergo the surgery, I pray that you would protect him, watch over him, and keep him safe. Use these events to draw him to yourself.

Thank you for being a mediator who can sympathise with us. Thank you for making away to the Father!

Amen.

Funny

2007-11-16T22:53:00.001-06:00

When you become a parent, you try to saturate yourself with information. After we bought a pregnancy test that came back positive, we bought pregnancy books, I scoured the Internet trying to find anything and everything I could about pregnancy and babies.

As a mom, there are things that you worry about. SIDs, your baby falling, nursing well/enough, car seat safety. Caraniosynostosis is not one of the things that I worried about.

Funny. Something I had never even heard of till a week ago is now all I can think about.

A little update

2007-11-16T14:58:00.000-06:00

I'm so thrilled that I can actually give an update! Yay!

This morning, I decided I should call Scott and White in Temple to see how the referral process was going. Long story short, we find out (after several phone calls) that there isn't a pediatric neuro surgeon at Scott and White. We could see the regular neuro surgeon, but we really wanted a pediatric one. Curtis talked to our insurance rep, and she said just got to Texas Children's Hospital. But that ended up being a dead end too (insurance wouldn't cover it after all). Finally, we found Central Texas Neurosurgery for Children in Austin. And the great thing is that we will be getting in for our consultation this month!! Beat waiting till the end of December!

So, we have to wait just a little bit more, then we should start getting some of the answers we want and need.

More info

2007-11-15T22:27:00.000-06:00

Just so everyone knows, this info is almost more for me, but just in case you're interested...
check this web site, which has lots of practical info.

source of encouragement

2007-11-14T12:13:00.000-06:00

Romans 5:1-5 "Therefore being justified by faith, we have peace with God through our Lord Jesus Christ: By whom also we have access by faith into this grace wherein we stand, and rejoice in hope of the glory of God. And not only so, but we glory in tribulations also: knowing that tribulation worketh patience; And patience, experience; and experience, hope: And hope maketh not ashamed; because the love of God is shed abroad in our hearts by the Holy Ghost which is given unto us."

My friend Lindsey (check out her blog for the amazing story of her boys, talk about FAITH) sent me this verse. I can't think of anything that encourages me more that to know that the saints are praying for all of us, and pointing us back to our Father's Word.

Keep the verses coming everyone!

Dr. visit

2007-11-13T10:45:00.000-06:00

Today, we had Benjamin's six month well visit. Curtis and I were very anxious to meet with our regular pediatrician to have some of our concerns addressed, and maybe get a little comfort about this whole situation.

Our doctor reassured us that even though craniosynostosis (cranio) is still a possibility, he doesn't think it's the main possibility. He told us that there were two other diagnoses he thought were more likely. One being extra fluid around the brain, which is very normal for a child Benjamin's age and wouldn't be a cause for concern. The other is that he has a preemie head, and would wear a helmet to correct his head shape.

The possibility of cranio is still there, and our pediatrician wants us to continue the process of seeing the neurosurgeon. He did tell us that since Benjamin's head is still growing, we aren't in any rush to get to the neurosurgeon. That was a huge relief! He told us what we already know, that if Benjamin does have cranio, then he will have to have surgery. He went on to tell us that it's not a fun surgery, and we really don't want to have to deal with it. But of course, if we have too, we was very reassuring that the doctor we would be using is a good one.

So we left feeling encouraged that there are other possibilities our there, ones that are much less severe. I was made a little more nervous about the possibility of surgery, since he made it sound like such an unpleasant thing (not that I was thinking it would be pleasant :-)).

Here's how we are asking you to pray:
*Benjamin wouldn't have craniosynostosis. But rather, it would be one of the other problems.
*That the whole referral process would be quick, and that we would get in to see the neurosurgeon as soon as possible.
*That Benjamin's head would continue to grow at the same rate, and no other signs of cranio would appear.
*Most of all, pray that Curtis and I would continue to wait on God's will, and in His peace.

Thank you!

Praying

2007-11-12T17:43:00.000-06:00

Father God, I praise you for being the great Creator! You alone are God, and I praise you!

Father, I thank you for Benjamin. I thank you for how you created his inmost being, how he is made in your image, and how he is loved by you! Thank you for your faithfulness to me and my family. Thank you for your promise to be a God to me, and my children.

Tonight, I come to you with a heavy heart. But I also come to you knowing that you are good, and will always do things for your glory and our good. I pray for Benjamin. I lift him up to your throne, acknowledging that he is mine, but for the moment. As much as I love him, I know that you love him more. Thank you for you love! I pray Father, that you would work in Benjamin's little body. You created him, you know his inmost being, and you know what's wrong with him and what he needs. I pray that if it's your will that you would make all this just a mistake, and that when tests are done that they would show nothing to be wrong with Benjamin's head. But if that's not your will, I pray that you would protect and keep Benjamin. Help his to go through this whole process well and without any complications.

I love you Lord. Thank you for hearing the prayers of this mommy.

Amen.

pics

2007-11-12T15:23:00.001-06:00

More info

2007-11-12T11:24:00.001-06:00

This link has a great definition of Benjamin's possible diagnosis.

I'm no doctor

2007-11-12T10:49:00.001-06:00

I'm no doctor, but I'm learning a lot. Apparently, there are several different kinds of craniosyntosis. Here's the one I *think* Benjamin might have. Notice I said think! And of course, he might just have a funny shaped head....

What is sagittal synostosis?
The sagittal suture runs from a spot at the front of the head to the back of the skulI. Fusion of the suture results in a long, narrow skull with or without bulging of both the front and back of the head. Surgery of sagittal craniosynostosis involves removing the suture and widening the skull by opening up the coronal and lambdoid sutures on both sides of the head. Sometimes bone grafts are placed to keep the out-fractured bones apart.

Source of encouragement

2007-11-12T07:43:00.000-06:00

But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us. We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed; always carrying in the body the death of Jesus, so that the life of Jesus may also be manifested in our bodies.
2 Corinthians 4:7-10