One year

Thanksgiving 2007

Thanksgiving 2008

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

Happy Thanksgiving

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

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?!

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!"

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

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

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

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

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

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!

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

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

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....

(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?

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!!!

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.

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

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!!!

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

Tubes

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!

Make video montages at www.OneTrueMedia.com

That same old feeling

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

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

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

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

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

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?

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!

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!)

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

A new helmet design to match his Easter outfit.

Lollipop

Spring Break?

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

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

Three Months later

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"

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?

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

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

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.

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

"My Life is a Zoo!"
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