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