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View Full Version : kobe's story....so far



kobe's mom
09-13-2008, 02:23 PM
Kobe is my first born, and I love him more than words can describe. He was born January 12, 2008. He was 5 weeks early and came as a bit of a surprise (my water broke while I was at work!). He spent 9 days in the special care nursery, but once he was eating well and was 5 pounds, they relased him. In February we thought kobe had a cold, but it turned out to be mild RSV (a lung infection) so he was bback in the hospital for a few days. When the peditrition was relasing us he told us the thought kobe had something called 'metopic crainosynotosis'?!?! He wanted to send us to a neurologist. Our appointment was for June 2008, which was months away, so we kinda put it out of our heads becasue we thought kobe was perfect looking. As the months passed we started to notice the ridge down his forhead, but mostly just in pictures. The flash would put a glare on it and make it more obvious. We then started asking other's what they thought, and they all said he looked normal. All of a sudden june was here and we were getting very anxious. At our appointment with Dr. Singhal he confirmed kobe had a mild case of metopic crainiosynostosis and said surgery could fix it. He wanted a CT scan to show how fused the sutures were and then we could decide what to do next. While waitning for our CT appointment the hospital called with a surgery date for kobe...we were floored because we didn't even know what we were doing yet and they had his surgery date. This was all happening so fast. After the CT scan it showed his metopic sutre was almost fully fused, so Dr. Singhal reccomened the surgery. Sept 16, 2008 is the date, now I am freaking out. I didn't feel ready, i had so many questions still...that s when i found CK site. I am so thankful to have found it before his surgery. I was able to talk to mom's who had recently gone thru this and were on the other side and there babies were doing great. They answered so many of my questions.
We had Kobe's pre-op a few days ago and now the surgery is only 3 days away. We meet Dr. Cordemache ( who is fablous, he explained things so clearly and went step by step of what they will be doing) It was an overwhelming day and by the time we got home my head was swimming. But we had a better understanding of the whole procedure. We are thankful everythingis happening fast, that way we didn' t have to play the waiting game. Not to say we aren't anxious, scared, unsure of our decision (we know its best but it doesn't make it any easier) every emotion you can think of, we are going thru.
And thats where we are so far.....

Monica
09-13-2008, 03:10 PM
Glad you found us. I'm glad your surgery is so close. The waiting is the hardest part. Your story sounds so similar to ours, down to the RSV - Florence had it back in January too. It seems unfair that they get it all, don't they? Keep us posted on how things go and we'll keep you in our prayers on Sept. 16th!

Wyatt's Mom
09-13-2008, 03:36 PM
I'm glad you posted Kobe's story. I know things are happening very fast for you but once you are on the "other side" you will feel great. I can't wait to meet you and Kobe on the 18th. I will be praying for you guys and that Kobe will do great in surgery and recover fast.
Call me if you need ANYTHING.

Tawnia
09-13-2008, 07:11 PM
I want to come and see you too!!! It will have to be an evening though.

twinmom
09-14-2008, 05:14 PM
Welcome to CK. I'm so glad that you shared your story. I can defenetly relate to all the feelings you have. Victorias surgery is scheduled for oct. 1st, it is only 14 days away.

I'm sure you will be fine when you'll be on the other side.

Make sure to post pics of Kobe and let us know how it went.

I'll be thinking of you and your family, it is a though time.

dannlark
09-14-2008, 07:47 PM
Welcome to CK! I'm so glad you found us, it's a wonderful place for information and support. Kobe is such a cutie pie!! I know it's very overwhelming right now for you. It's happening very quickly, but in retrospect, you'll thank goodness you were on the fast track, the waiting is agonizing!! He's going to do wonderfully and he'll be home, safe and sound, before you know it. Keep us posted and please don't hesitate to ask for help here, or ask any questions about it or ANYTHING! We're here for you... Stay stong Mommy!!!

Mom2Julia
09-16-2008, 12:35 AM
Wishing you all the best tomorrow. Dr. Singhal & Courtemanche will be doing Julia's surgery on Friday, so may see you in the ward after.

Kim