Last Friday, my wife and I had confirmed that our daughter has unilateral left posterior plageocephaly: a form of craniosynostosis. This means that two of the bones in her skull that should normally be separated until she is much older have grown together early. The space that is sealed shut is the lambdoid suture on her left side. It is the rarest form of craniosynostosis, only 1 in every 200,000 kids get it; as opposed to the general craniosynostosis that impacts roughly 1 in every 2,000 kids. She has to have surgery to take care of it. She is a candidate for endoscopic surgery. However, that surgery has to take place as soon as possible. So soon that yesterday her surgery schedule was set. She will be having surgery on February 9 around Noon. The surgery will involve making two incisions through her scalp and dermal layer, removing a bit of bone, and then using an endoscope and endoscopic knife to cut away a 1.5 to 2cm gap of bone that runs up from her temple across near the saggital suture and back down through the lambdoid suture. This will allow her skull to grow normally, which will hopefully prevent her from having a deformed head (asymmetric) or brain damage. Surgery is not an option. We will be doing the surgery at Seattle Children's Hospital. Odds of survivability are very high, chances of having to do a second surgery are very low, and we are of course stressed out. To relieve some of that stress, my wife and I (and our daughter) started a blog about our and her experience at http://piella.org/ You are welcome to visit it, as you are part of my community.
Jay
Daughter
Re: Daughter
You're all in our thoughts Jay - and we're here if you ever need to vent / ramble or just chat...
allard

allard
Amateur Puzzle Hoarder and occasional blogger
Re: Daughter
Will keep her in my prayers!
Extremes:
Open
Open
Open
Paper weight
Looks pretty on my desk
Open
Ordered
Obsession:
Is lonely
Open
Open
Open
Paper weight
Looks pretty on my desk
Open
Ordered
Obsession:
Is lonely
Re: Daughter
My thoughts are with you all.
Re: Daughter
No probs Maztec, she'll kick straight through this simple little surgery and will pop out the other side, ready to steal your Revos before you know it
You just need to not explode by stressing about it in the meantime.


- 03SVTCobra
- Posts: 1531
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- Location: NY
Re: Daughter
Stay strong buddy. We will be praying for you.
BU00060
GR00060
BR00060
AG00060
AU00060 
R00060
OR00060
LM00060
TI00030
CU00060
AQ00060
IN00060
MT00060
TQ00060
GM
HM 
Blue Obs
Green Obs
Black Obs
Black Obs V2
Red Obs 





R00060







MT00060




Blue Obs





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- Posts: 284
- Joined: Tue Nov 29, 2011 9:38 pm
- Location: Harrow, Middlesex
Re: Daughter
Take the gold with you. If she can go though this surgery, you can solve a gold.
Anyway, best of luck, and I hope it all goes well.
Anyway, best of luck, and I hope it all goes well.
Black ob V2 - Recieved - On Loan
Blue ob - Ordered - My new toy has arrived
Blue ob - Ordered - My new toy has arrived
Re: Daughter
I really do not want to put her surviving surgery on me solving Gold during that time! Gah, that was just cruel.Fabregas485 wrote:Take the gold with you. If she can go though this surgery, you can solve a gold.
Anyway, best of luck, and I hope it all goes well.
Well intentions appreciated though. I will be taking my black v2, orange, and gold, just in case I have time.
OOOOOOOoo
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- Posts: 284
- Joined: Tue Nov 29, 2011 9:38 pm
- Location: Harrow, Middlesex
Re: Daughter
Oh, sorry
. What i meant is after surgery there is normally a long wait before they allow you to see the person. Just remember everyone at revo is thinking of you, your daughter and the rest of your family at this time.

Black ob V2 - Recieved - On Loan
Blue ob - Ordered - My new toy has arrived
Blue ob - Ordered - My new toy has arrived
Re: Daughter
During surgery too. Actually, we have arranged to be allowed to be with her while she is recovering from anesthesia. I knew what you meant, just yanking your chain a bit.Fabregas485 wrote:Oh, sorry. What i meant is after surgery there is normally a long wait before they allow you to see the person. Just remember everyone at revo is thinking of you, your daughter and the rest of your family at this time.

OOOOOOOoo