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!