Craniosynostosis, Take 4....

Monday October 5, 2009 Gabe had his 4th surgery for craniosynostosis. Gabe's surgery in June failed and his skull was depressed from where it was post op. Gabe's CT showed that he had no room left in his skull for his brain. After a long conversation with Dr. Frim we opted to do surgery again. To read the story go HERE and read back in October 2009.

October 5, 2009

Gabe-Birds Eye View pre-op

Not such a happy guy

Forcing a smile for Mommy



4:26pm (2 hours post op)
Look how big his head is

Our Green Flag and the Black and White Checkers Flag. Racing to the finish line.


5:18pm (2.5 hours post op)
His new head height-from moving the bone that has collapsed

8:21pm Swelling is starting

Gabe and his gorgeous blanket

10:50pm Gabe's drain was draining off a lot of blood. Right side of his forehead was starting to swell.

10/6/09 12:56pm "Hey Look, I am Charlie Brown!!!"

10/6/09 2:02pm The left side starts the massive swelling process

10/6/09 7:54pm Swelling is significant to the left side of his head/face.

10/6/09 at 11pm

Misc Pics

What can I say.... Gabe and his "story". His beads of courage. He loves his beads. They tell what he has been through.

7 days and counting.....

Next week at this time, Gabe will be having his 4th cranial expansion surgery. I cannot grasp why our single suture metopic craniosynostosis child is going through this, again. I thought May 2003 our journey with cranio ended. Then I thought that same thing in February 2005. In June 2009 I was very hopeful that this was the end of his cranial space issue, and 14.5 weeks later, here we are again.

This time around there will be no wires, no helmet. They are going to remove sections of skull and use titanium plates/mesh to make areas of his cranial vault. This should *hopefully* prevent his head from caving in, and allow the brain ample room to grow. We are worse now than we were before his surgery 14.5 weeks ago. THAT is hard to say.

Last night I was in that desperate feeling mode. Today, I am better. I prayed and turned it over to God. I am not in control of what is going to happen or the journey that is planned for my child. I have to accept that. I know that God will keep Gabe safe and that his hand in on Gabe in this journey. I am not sure how people who do not have a relationship with God do this. How they traverse this journey. I need him there to give me strength.

Discover Camp 2009

I cannot write and do justice to the how amazing Discover Camp was this year. Janet and the amazing people of Columbia, Kentucky and the Columbia Baptist Church were wonderful to us. We had a week of living in a bubble.

We love you all!

From the past....

I have been thinking about how much I have changed in the last 7.5 years. I was scrolling through the blog and I found this post. I posted that in January 2007. To think about that, the words Chiari Malformation, Pseudotumor Cerebri/Intracranial Hypertension, Dysautonomia and Shunts had not even entered our vocabulary except for a rare passing conversation.

I want to be the coffee bean......