Friday, August 21, 2015

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!"

1 comment:

  1. I love the context of this devotion. Just another amazingly awesome reminder that it's through our trials and hurts that we feel closest to God, because of His suffering for us. Without that human connection to Him, we'd never be able to know Him in all His awesomeness. So, He humbles Himself to become like us with a life full of hurts and pains so that we can know Him.