Just diagnosed with trigonocephaly
What a great sight this is. My wee man Carter is 9 1/2 months old and has just been diagnosed with trigonocephaly on 28th July. He is booked in for surgery on 9th August in Wellington, New Zealand. We are pretty lucky we don't have a long wait but in saying that it is all happening so quickly and is a pretty scary. I can't wait to be on the other side and just enjoying playing with him again without looking at him, analysing and worrying about his head shape etc.
Cindy
Mom to Logan (12/8/2006) - Left Coronal
Hospital - Connecticut Children's Medical Center (CCMC)
Surgeons - Dr. Kanev & Dr. Casteglione
1st Surgery (7/21/2007) - CVR & ear tubes
2nd Surgery (2/18/2011) - CVR #2
Patch therapy for amblyopia (lazy eye)
8/4/11 - 20/500 *** 10/14/11 - 20/250 *** 1/13/12 - 20/60 *** 4/13/12 - 20/60*** 8/6/12 - 20/50
http://www.caringbridge.org/visit/logansullivan
Welcome to CK! My son had surgery over 3 years ago for Metopic Cranio and he is doing great! Can't wait to hear that you are on the other side!!
Jessica
Jeffrey James
Hi there and welcome to the exclusive and special CK club! Not a membership you would wish for, but boy, Re these children wonderful. Our Daniel was operated on for Metopic last November and although it was a worrying time, the results and recovery was fantastic. Most people do not know he even had the op as being on the other side has been wonderful. I wish you all our best thoughts for the forth coming operation and speedy recovery. Al xxx
My son Ryan had surgery for metopic 5 weeks ago, he was almost 10 months old. He is doing awesome!! He is playing and trying to walk. It truly amazes me how amazing he did! He was playing less than 24 hrs post op.
Best of luck!
You're almost there
Liz
Liz
Mommy to Tyler and Ryan
Tyler - no cranio
Ryan - Metopic with Trig
June 27, 2012 CVR with Dr. Fearon and Dr. Sacco
WE ARE ON THE OTHER SIDE!
My baby was metopic also. He had surgery about a month ago and is now playing and acting as if nothing ever happened, except now with a round head :) Welcome to the site and I hope you get as much information here as you need. The parents here are so supportive!
Welcome to ck!
Lauren
Mommy to Gabriel James
Born 4/11/11 Diagnosed 5/25/11 Metopic w/ moderate to severe Trigonocephaly
Endoscopic Surgery 6/27/11 Dr. Edward Ahn
Johns Hopkins Children's Center Baltimore
Started Helmet Therapy 7/7/11
Graduated Helmet Therapy 10/12/12
We are on the other side!
Gabe's Cranio Story www.youtube.com/watch?v=gDNicjZY9ag
www.caringbridge.org/visit/gabrielhassinger
My Blog Confessions of a Cranio Mom
Welcome and good luck to you!
Kristin, Chronic Lyme Disease
Big Sister Bear 9/2005
Little Brother Monkey 6/2009, Metopic Cranio dx at 12 mos, CVR/FOA at 20 mos.Drs. Martin and Castiglione, Connecticut Children's Medical Center (Autism Spectrum Disorder)
Monkey's Blog: http://www.MetopicMonkey.blogspot.com
Welcome to CK! Good luck with surgery tomorrow. Let us know how it goes.
Sagittal surgery - 02/26/2009
Second surgery suggested to correct a bump on the head and fill in soft spots.
Hi, thanks for all your kind messages. Sorry I have not responded sooner it has been a pretty full on time as I'm sure you all know. So Carter ended up having his surgery on 23rd August and everything went great. The surgeons were surprised at just how squashed his brain was and said it was quite indented from the skull and was a good job they had gone in when they did. He ended up having four blood transfusions post op as his levels kept dropping but after having a scan to make sure there wasn't bleeding on the brain they confirmed he just had lots of blood sitting under the scalp that would absorb back into the body with time. I'm so proud of carter and just how easy going he has been with all the poking and prodding and to top it all off the constant ear infections since the surgery. He has his post op check up on 28th oct so hopefully they are pleased with his progress. I have also asked if they can have a look at his brother Corey's head as I am now a little concerned he may also have trig but just not quite as bad. He has thick blonde hair covering his head so not as obvious as carters. I hope it's just my eyes playing tricks on me but they do say a mothers gut instinct is generally right so hmmm. I'm not sure how to upload photos onto the site but once I've figured it out Ill post some of my beautiful boys.
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