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!