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Old 12-12-2009, 11:13 AM   #1
bigbabyblues
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OT: Today is a milestone day for us

Today is the 5-year mark from my youngest DS' surgery, and I am thankful.

5 years ago today, my then 18-month old went through almost 7 hours of surgery to repair his skull. He had a condition called Craniosynostosis; basically, the bones in his "soft spot" fused together and closed up prematurely. I had never heard of it, and when DH took him for his 15-month checkup with a brand new pediatrician, she looked at his head and asked DH about it; we didn't know there was anything wrong with him at all--I thought she was crazy. Some of the children that have it have a different shape to their heads, but he didn't. He did cry more than our other DS, but we just thought he was fussy; I never guessed he was in so much pain, and I felt about two inches tall.

The next two and a half months were a blur of tests, scans, lab work, appointments with different doctors and specialists--all which had to be done at Children's Hospital, 2 hours from our home. During the surgery, they took out a strip of skull bone about 1 inch wide from the front to the back of his head; they also had to take some out of his forehead, and they put titanium plates in his forehead that will be there forever. His incision goes across the top of his head, from ear to ear; it will also be there forever. He spent 5 more days in the hospital, and it was awful. His little eyes were so badly bruised, he looked like he'd been badly beaten; they were swollen shut by the morning of the second day, and stayed that way until the day he was allowed to come home.

Today, 5 years later, he is a wonderful, loving, active 6 year old. The only lasting effect of the surgery is the scar that you can see part of. If people ask about it, he'll push his hair aside, show them the whole thing, and give his version of what happened to him. I kept a journal the whole time in the hospital, and I made a scrapbook; I copied the entire journal in the album. He loves to look at his album, and it just amazes me when he does. He doesn't point out the bandage on his head, the nasty looking incision, the black and blue eyes....he just points to the simple things; me and DH, his grandparents, the graham cracker he was eating, his binky, etc.

Thank you for letting me get my feelings out, ramble, and cry as I type this. DH is working, and I don't want to cry to the boys.

Steph
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Old 12-12-2009, 11:30 AM   #2
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Congratulations to you and your family - what a special day to celebrate!

It is a good thing that your pedi was on the ball and observant. When we told ours at the 12/15/24 month appointments that DS was very different from our two girls, we always got the "boys develop more slowly"..."your older girls do things for him so he doesn't have to"...kind of stuff.

He wasn't diagnosed with autism (by a different developmental pedi) until after age 3, when we had totally missed all the Early Intervention services that children with autism receive up to the age of three. We spent the next few years frantically trying to catch up and get him the services he needed - and continue doing that to this day. And will for the rest of his life...

Hope you're all doing something fun today to mark this wonderful occasion!
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Old 12-12-2009, 11:31 AM   #3
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Huge to you!!

My gosh... how horrible for all of you..but so good to know that your DS is doing well!!!

Cry, it's okay.. this is a cry of celebration..and thank goodness you went to that new pediatrician!!!!!!
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Old 12-12-2009, 01:05 PM   #4
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What a wonderful day to celebrate!!!

Rebecca
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Old 12-12-2009, 06:37 PM   #5
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I got teary eyed reading about your family's journey during your son's surgery.

You have every reason to celebrate!! Thank goodness you had changed pediatricans.
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Old 12-12-2009, 06:59 PM   #6
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Thank you all for the kind words!

PBF - she was, and still is, definitely on the ball! We live an hour away from her office, and by the time DH got home, she had personally called and left a message with his first CT appointment and his neurosurgery appointment, their phone numbers, and directions for us. We didn't have to do anything but show up. She called back that evening and explained it all to me, and answered my questions, since I didn't go to the appointment. I hate it that you had to, and still do, fight so hard to get services for your DS.

We changed peds because our beloved ped was in the Army reserves and got called up. I've wondered more than once if he would have found it. The neurosurgeon told us that it was odd for it to happen to a child that was more than a year old, but it didn't look like his had been fused for too long after they got in there.

It doesn't matter now, I know that we were extremely blessed. That was loud and clear the first night he was in the hospital. I was tired, and feeling sorry for myself, and he was having trouble sleeping. He was on the neurosurgery floor, and our door was open, and there was a lady in the hallway about my age, and she was on the phone with, I assume, her husband. She had brought their little boy, about the same size as my DS, to the ER for something, and they had done a CT on his head and found something. She was crying and scared, and I remember thinking how fortunate we were. Yes, our baby was hurting and it was hard to watch him, but he was going to be ok, and we would go home.

We didn't do anything special, but he had a good time today. We went to breakfast with Santa at the hospital where I work, we made salt dough ornaments, he got to play outside (in 30 degree weather, but is was sunny, lol), we played games, and he's staying up "late" (8:30 is late for him, lol).

I'm rambling again...

Steph
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Old 12-12-2009, 07:12 PM   #7
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Oh Steph, thank you for sharing that with us. Whatever the reason, you were brought to that pediatrician for a reason, for her to find what she did and help your son.

It sounds like a great day, even if nothing "special" was done!
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Old 12-13-2009, 04:56 AM   #8
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Big to all of you. I know that had to be such a traumatic time for you and what joy in being able to celebrate with your wonderful DS now. My DS had to have surgery when he was 7 weeks old and watching him get wheeled away to the operating room is still one of my worst memories. His surgery was minor. It was nothing compared to what your DS went through, but I was a wreck at the time, so I know how hard that time must have been for you. again!
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Old 12-13-2009, 08:09 AM   #9
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big hugs to you! i cried as i read your story. it must have been so hard for you. i believe an angel sent you to that dr. how very lucky you did.
sounds like your ds is a happy little boy today! and i'm glad it had a nice ending. i'm also glad you celebrate that day. it was the best and worse day for you.
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Old 12-13-2009, 09:45 AM   #10
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I am so glad your story had a happy ending.
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Old 12-13-2009, 04:28 PM   #11
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I second what AWM said! The Happy Ending is the BEST part!!

So glad your DS is happy and so normal now that "nothing special" is needed on the anniversary of that scary day!
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