What Can I Do To Help?

I love this question simply because I love that people love people & that people love to help other people. I'm also so comforted by the fact that my answer to this question is, "Just Pray" because HONESTLY we are so well taken care of that praying is the BEST thing anyone can do!

September is Craniosynostosis Awareness Month.  I find this ironic because a mere 12 days ago I wasn't even aware Craniosynostosis existed and now here we sit a week away from Grant's surgery. 

In honor of September being Craniosynostosis Awareness Month I thought maybe I could elaborate on my answer to the question, "What Can I Do To Help?" Because even though we're directly taken care of, there are many ways to help indirectly as well as help those in a position less fortunate than we are. 

Here's what I've come up with....

1) Go donate blood.

Confession time. I've only given blood one time in my life. I was so bruised afterwards that it deterred me from doing it again. Well, guess what? I'm a changed woman. Blood saves lives. My blood will most likely save my son's life. This will not be the last time I do it. 

2) Help out a really fabulous organization called Cranio Care Bears.  Started by two moms whose sons both had surgeries for Craniosynostosis, they send packages all over the world to families whose children are enduring skull surgeries. Monetary donations, items for the care packages as well as making prayer chains they include in their packages are all needs of theirs at this time. A detailed list of care package items, directions to make prayer chains and their PO Box address  can be found here -

http://craniocarebears.org/current-needs-and-prayer-chains/

3) Support Lurie Children's Hospital. 

Luries is AMAZING. A friend referred to it as "The Disneyworld of Hospitals" and that's so accurate!  Eric & Kathy from 101.9fm will be in the lobby for their yearly (sob fest) telethon the morning of Grant's surgery. Plan on tuning in and consider supporting their efforts. Contact me if you're looking for a more specific way to give to this fabulous place. 

Keep the prayers coming. We feel completely embraced by them!

"Flawless"

These days, DJ Mallory & DJ Trevor tend to rule the music in our family's mini-van. This morning, a little tired of the standard rotation, I declared our ride to church, "Mommy's Choice". My goodness, I'm happy I put my foot down because the song "Flawless" was exactly what I needed to hear this morning. Thank you, MercyMe for the good cry. 

"Flawless"

There’s got to be more 

Than going back and forth 

From doing right to doing wrong 

‘Cause we were taught that’s who we are 

Come on get in line right behind me 

You along with everybody 

Thinking there’s worth in what you do 

Then Like a hero who takes the stage when 

We’re on the edge of our seats saying it’s too late 

Well let me introduce you to amazing grace 

No matter the bumps 

No matter the bruises 

No matter the scars 

Still the truth is 

The cross has made 

The cross has made you flawless 

No matter the hurt 

Or how deep the wound is 

No matter the pain 

Still the truth is 

The cross has made 

The cross has made you flawless 

Could it possibly be 

That we simply can’t believe 

That this unconditional 

Kind of love would be enough 

To take a filthy wretch like this 

And wrap him up in righteousness 

But that’s exactly what He did 

No matter the bumps 

No matter the bruises 

No matter the scars 

Still the truth is 

The cross has made 

The cross has made you flawless 

No matter the hurt 

Or how deep the wound is 

No matter the pain 

Still the truth is 

The cross has made 

The cross has made you flawless 

Take a breath smile and say 

Right here right now I’m ok 

Because the cross was enough 

Then Like a hero who takes the stage when 

We’re on the edge of our seats saying it’s too late 

Well let me introduce you to grace grace 

God’s grace 

No matter the bumps 

No matter the bruises 

No matter the scars 

Still the truth is 

The cross has made 

The cross has made you flawless 

No matter the hurt 

Or how deep the wound is 

No matter the pain 

Still the truth is 

The cross has made 

The cross has made you flawless 

No matter what they say 

Or what you think you are 

The day you called His name 

He made you flawless

He made you flawless

No matter the bumps 

No matter the bruises 

No matter the scars 

Still the truth is 

The cross has made 

The cross has made you flawless

How Are You?

How am I?

I get this question a lot. 

I'd rather hear it 100 times than have someone really care to know but be afraid to ask. 

When we first learned of Grant's diagnosis and impending surgery, Dr. Tomita's nurse looked me right in the face and said, "Listen. He's going to be fine and he won't remember a thing. YOU'RE going to be the one who is traumatized." It sounds kinda harsh when I type it out, but I knew exactly what she meant. 

I'm his mom. 

I carried him for 40 weeks. 

He's a part of me. 

I can be there to calm and comfort him but I can't physically take his pain away. I would in a heartbeat if I could but I can't. 

I think about last summer when I cut the tip of my pinkie finger almost all the way off and had 6 stitches to sew it back together. 

That was my finger. 

This is his HEAD. 

Stitches pull and itch. 

He won't be able to tell me if they're bothering him.

I think about what an awful time nurses have starting an IV on me because I have "valvey veins". 

And it hurts. 

It hurts a lot. 

What if he has the same issues?

The Internet can be a frightening place and Dr. Google can scare the pants off people. But in our circumstances, I am SO thankful for the resources I've found, the support available for parents going through this, and the moms I've connected with already in such a short period of time. I suppose there's a part of me that's waiting to hear some negative story, but every single "cranio mom" I've encountered, every blog I've read, every "before & after" picture I've looked at brings more reassurance that Grant really is going to be ok. 

So I'm educated, I'm aware, and I'm about as prepared as I can be. I think about the scary parts and then instead focus on moments I'm most looking forward to like the first heart warming Grant smile I'll see post surgery. 

(Mallory put one of her doll hats on him at bedtime. I love their sweet relationship!)

I'd like to think I'm facing this head on with some welcomed distractions. We sent our oldest baby to Kindergarten this week and our middle guy decided to start potty training himself which has provided quite a few laughs. More than one person said the exact same thing to me this week, "You CAN'T be sad with Trevor around." And it's true!

Music and scripture also help IMMENSELY. This song has been on repeat in my head all week...

And now that surgery is scheduled and we have a little bit of time to breathe, Psalm 46 brings peace and calm moments. 

And of course, our "village". The cards, emails, texts, & hugs. The amazingly awesome problem of having so many people offer to help that I'm a little overwhelmed by the options I have for the time we'll be in the hospital and the days and weeks following. 

I have one really specific prayer request that our family stays healthy in the coming weeks. Our timeline has been pretty great; not too soon, not too long of a wait. I would hate to have to postpone surgery due to illness. 

That's the long answer to the "How Are You?" question. The short answer is that  I'm doing ok all things considered but I'll be very happy when this is behind us. 

So What IS Craniosynostosis Anyways?

Let's get medical here for a moment. 

Mayo Clinic defines Craniosynostosis (kray-nee-o-sin-os-TOE-sis) or "cranio" as it's referred to by those touched by it, as a birth defect in which one or more of the joints between the bones of your baby's skull close prematurely, before your baby's brain is fully formed. When your baby has craniosynostosis, his or her brain can't grow in its natural shape and the head is misshapen.

Craniosynostosis can affect one or more of the joints in your baby's skull. In some cases, craniosynostosis is associated with an underlying brain abnormality that prevents the brain from growing properly. Approximately 1 in every 2000 babies is born with some form of Craniosynostosis. 

More specifically, Grant has Sagittal Craniosynostosis, also called Scaphocephaly. The literal meaning of the Greek derived word ‘scaphocephaly’ is boathead. Premature sagittal suture closure restricts growth in a perpendicular plane, thus his head will not grow sideways and remain narrow.  Compensatory growth occurs forward at the coronal suture and backward at the lambdoid suture giving respectively a prominent forehead, called frontal bossing, and a prominent back portion of the head, called coning. When viewed from sideways the resulting shape of the head looks a bit like a boat.

You can see the frontal bossing (which just recently made an appearance) when you look at Grant's profile. Dr. Tomita told us that even though he looks cute (and I tend to agree wholeheartedly!) it's obviously a concern. 

If you look at the diagram it shows the sutures that should still remain open for quite some time. It was REALLY amazing to look at this on the images from his 3D CT Scan. It's not Grant's soft spot that closed, rather the sagittal suture that fused at some point in utero. 

I get a chuckle every time I hear the word craniosynostosis come out of my 5 year old daughter's mouth flawlessly. We've all received quite an education over the course of the last week. 

September 11th

He's all scheduled. 

Surgery will be Friday morning on September 11th. 

He rocked the CT Scan and was an absolute doll at his consult with Dr Tomita and his team. 

Doug and I were amazed by the technology and thrilled to learn his brain looks fabulous. 

We were even able to get his bloodwork done before we left. That part he did NOT like. 

We continue to covet your prayers and are thankful for each and every one. Xoxo

Is This Really Happening?

It is.

And it's OK.

At least it's GOING to be OK.

Why?  Because God is in control.

Thank you to a friend who reminded me,
"God is with us through our trials.
God is with us when we are afraid.
God has gifted doctors with talents that can heal people.
God can move mountains."

In the last week, He has revealed himself time and time again. 

Many people have asked me how long we've known about this.  Here's the answer....

One week ago tonight I was reminding myself to take Grant's five month picture the following day after his regular monthly visit to the pediatrician. One week ago I knew that Grant's head was a bit misshapen, but just figured that even though Dr. Peters had been keeping an eye on it, that it was just the way God made him!  One week ago I had never in my life heard the word craniosynostosis. 

On August 18th at that five month visit it was recommended we call Lurie Childten's Hospital to been seen by a neurosurgeon. My first prayer was that we could get in quickly so I could just "get this over with". God answered. When I called to make the appointment they asked me if I had a preference for a surgeon. I didnt. I just took the first available spot. Two days later at 4:45pm we were sitting in Dr  Tomita's office. I sat there listening to him explain what he was going to do to "fix" Grant's head thinking, "There is NO way you are going to do this to the happiest baby on the planet. I totally have to get a second opinion. There HAS to be another option". But there isn't. The risks for later on in Grant's life FAR outweigh the risks of doing the surgery. 

THEN I learned Dr. Tomita's title was the Chief of Neurosurgery at Luries. One of the BEST hospitals in the country. It was as if God said, "No Linz, you're not getting a second opinion. This has to happen, he IS going to do this, and he is the best man for the job. Trust me, and I PROMISE I will continue to hold you up." 

Next step?  Well, that's tomorrow morning. At 9:15 Grant has a CT Scan followed by another appointment with Dr. Tomita to go over the test results and schedule surgery. Last time I was at Lurie's was to deliver our Blanket Brigade blankets. Tomorrow Grant will arrive at the hospital with a blanket lovingly made by Mallory (and me).

As for the man of the hour, he's obviously completely oblivious. It's hard not to worry that this experience will change his adorably sweet demeanor. As I've connected with a few moms whose babies have been through this I've been more than assured that while my anticipatory concerns are valid, I'll see once he makes it though this that he'll eventually be none the wiser and, once healed, will be back to his happy self. We're just getting started but I already can't wait for that. 

The Surgery

Grant's surgery is referred to as a CVR, short for Cranial Vault Remodeling. It sounds absolutely awful but I'm not kidding when I say Dr Tomita talked about it like he was going to make a PB&J. He said he does one of these every 1-2 weeks. 

In very simple terms, they will make an incision in the shape of a "W" that extends from ear to ear across the top of his head. After peeling back his scalp, they will then remove a strip of his skull right at the top of his head where the premature suture is. This takes the pressure off his brain & allows for new bone growth giving him a perfectly round noggin. The surgery should last about two hours. 

The only anticipated complication with this surgery is potential blood loss. They combat that by matching him with a donor beforehand, obviously Doug or me being the first choice. 

Post-op we are anticipating a 3-4 day stay at Luries where they'll monitor pain, bruising & swelling. His skull should be back to "normal" by three months and I was surprised to hear that this will happen without the use of a helmet. The human body is quite amazing!  Obviously he'll have quite the scar, but a plastic surgeon will be the one taking care of that part and by this time next year when he's got some hair we'll hardly notice it. I'm more concerned about keeping his precious little head protected in the days and weeks following surgery. I'm seeing quite a bit of snuggly baby wearing in our future. 

It goes without saying that prayers are SO desired right now and we thank you for each and every one. We appreciate every text, phone call and email even if we have yet to respond. We are so loved and we love back. 

Our Little Rock Star

I took this picture of Grant yesterday morning thinking I'd want to look back at "that day" I had to take him to a neurosurgeon to look at his somewhat misshapen head. It is SO much more meaningful after the events of our visit on Thursday, August 20th. 

After processing Grant's Sagittal Craniosynostosis diagnosis overnight this was the email I sent to our family and prayer warriors. I think it sums up what's going on pretty well. 

A few things I want to add after a night of (not gonna lie) minimal sleep and quite a few tears....

There are multiple types of craniosynostosis. The one Grant has is sagittal which is defined as such -

Premature fusion of the suture at the top of the head (sagittal suture) forces the head to grow long and narrow, rather than wide. Scaphocephaly is the most common type of craniosynostosis. 

So the first reason for the surgery is cosmetic. As his brain continues to grow, it's forced to grow front to back. The premature suture doesn't allow for it to grow side to side causing an oblong football shape to his head. More importantly, the second reason for surgery is that this premature suture will eventually cause pressure on his brain likely causing learning delays. The surgery will release that pressure and give him a nice, round noggin. 

The fact that we saw the CHIEF of neurosurgery at one of the best children's hospitals in the country was purely by the grace of God. I didn't even know he was the head honcho until the end of our appointment. When I called Luries to make an appointment my first priority was that he be seen ASAP. Had we not taken this appt the next one available was not til October 1st!  I am EXTREMELY confident our Sweet Boy is in the best hands and am SO thankful. 

In the short amount of time I've been allowed to process, research, network, & learn about being a "Cranio Mom" I've been assured that while the thought of cranial surgery is quite terrifying, it's amazing to me that this surgery truly poses very minimal risks and the outcomes are amazing. 

The next step is a CT and follow up appointment with Dr Tomita on Tuesday morning at Luries. It will be at that visit that we schedule Grant's surgery. 

We can't thank you all enough for your love & prayers!  I'm attaching Mallory's "Jesus Calling" devotion from last night to which I say, "Amen!"