Skip to main content

A New Post..

So my laptop crashed -- along with the rest of my brain --

Have you ever noticed that right when you think you've got it figured out, BAM, reality hits you right in the gut knocking the wind out of you.  So for the last couple of weeks that where I've been - breathing into a brown paper bag. 

Here is where we are. 

At the beginning of November Ivey will go in for surgery.  If you have checked in over the past few months you will understand why - back in February Ivey spent a stint in the hospital.  During that time she was referred to a neurosurgeon.  And since then he has been monitoring the prematurely closed sutures of her skull.  Two weeks ago he performed a lumbar puncture to monitor the amount of pressure possibly being applied to the brain due to the suture closure.  He had expected a low opening pressure; however, it was very high.  This high pressure signifies that Ivey's little brain has grown, which was unexpected, and is very good news.  The bad news, Ivey will have to undergo major surgery to release the closed sutures. 

The surgery will be performed by Ivey's neurosurgeon and her cranial facial surgeon.  The neurosurgeon will remove 2 to 3 pieces of Ivey's skull and cranial facial will piece her skull back together. It will be a tough surgery for Ivey, but she is a fighter.  If you have any questions just let me know and I will get back to you. 

G.

Comments

Anonymous said…
Ivey, you and your family will all be in my thoughts x
Just Tera said…
as always in our prayers as forever an inspiration
Anonymous said…
Ivey will be in our thoughts and prayers over the next couple of months - just like she always is :) Wish we were closer so we could physically help you with anything you might need during this time. Please keep us updated so we can pray specifically for ALL of you. Love and hugs to you all! ps: Wish I had half the fight that Ivey does on most days!! Love that girl so much!!
Love, Jill, Ella and Chase
Jessica Chamness said…
Ivey and your entire family will be in my prayers. Jacob's neurosurgeon has mentioned this type of surgery to us many times. Right now we are monitoring his head growth and moods. If anything changes suddenly, we will be looking at having the same thing done for him. I know this is a difficult time for you. Please know that you are being lifted up in prayer by countless people! Ivey is a tough little girl...she will get through this, too!
Andrea said…
Would love to help in any way possible. You know we will pray for everything to go well and for peace of mind for the rest of you. But, I am available to help you....and I want to. I don't want to call and harass you but just know I am willing to simply be there.
Debbie's L'Bri said…
I just got a computer after not having one for 8 weeks. I missed keeping up with you and Ivey. I pray that everythings goes well with her surgery.
Paula said…
Praying for Ivey and I will ask for prayers from my friends and family for her!
Jolene said…
I just wanted to say that when my daughter was in Chldrens Hospital for one of her VP shunt surgeries there was a baby boy in the bed beside her who had that surgery done the same day and you would never have known it!! He was happy and playing like nothing had happened! I pray the same will be for Ivey!!!!
Kathy said…
Loved seeing sweet Ivey and your precious family at the fair tonight! I forgot to mention that my sister's Thomas went through McHenry's program and we love it there. Hugs to Ivey as she prepares for surgery. Lifting that darling girl up in prayer.
Shannon said…
You and your family are in our prayers. I was just looking through some pics of all the kids.....they are getting so big!!! I love all the blonde hair and Ivey's curls. And I love the video of her swimming.
Shannon in Austin

Popular posts from this blog

And Sometimes Feeding Your Kiddo Looks Like This...

A simple sentence. No one said it to me in the beginning, but boy did that tube cause a lot of chaos. The NG tube graduated to the G-tube which morphed to a GJ- tube…. A brief history of Ivey's feeding tubes: *The NG tube was in place the first time I ever saw my daughter in the NICU.  My only memory of her without a feeding tube is them placing her in my arms immediately following her birth. *The G-tube, well, that is a story within itself.  That decision did not come lightly.  Another hole in her.  Another decision on our plate, but not really on our plate, it was apparent it was a medical necessity for her survival.  Literally to give her a chance to live.  A permanent decision.  A 5am panic attack in the Scottish Rite elevator that happened to coincide with Dr. Meyers arriving at the hospital at the same time as me.... Our intersection in the elevator set the stage for the years to follow. From that point on, he knew I was a little nuts and a lot...

BEAUTIFUL GREEN EYES........

Sibling Secret Sauce

Siblings of kiddos with disabilities are amazing humans walking amongst us. They live a life, most often, in the shadows of their sibling who simply needs "more". More time. More direct attention. More of more. We have now come to a fork in our road. Our boys are young men, and, our daughter is a young lady. I'll be honest, I was uncertain what life would look like once the boys left this home, once they had their own time, in their own personal sunshine. We found out quickly once Knox left for college his freshman year what that would look like. And then, when Walker left, we knew what life would feel like in their absence. There was too much space. Ivey felt it. We get many compliments about the relationship the boys and Ivey have with one another. Hints here and there that, maybe, Matt and I had some secret recipe to parenting a household with a child that is very medically complex and a very complex communicator. This is what I can tell you - there is no re...