Thank you all for the support!
We visited our local neurosurgeon today and he has confirmed Coronal!
We are being sent to Children's Hopsital next week to meet with their two surgeons to talk abouu treatment options, they have us tenatively scheduled for surgery on April 17th! WE are scared like most and just trying to cope and learn as much as we can. We asked about endoscopic procedure but they don't offer that type of procedure! We wanted to update you all and thank you for your blessings!
I'm sorry to hear your little one will need surgery. This will be a tough time for you and your family, but try not to worry too much (I know, that is much easier said than done) - your little one will do great! Please keep us posted on how things go these next few weeks.
Hanna
Proud mom to Nicholas 4 July 2007Metopic
Surgery 10 January 2008
Ryan and Sarah 23 Oct 09 (no cranio)
Nicholas' Photo Montage:
http://www.onetruemedia.com/otm_site/view_shared?p=594735c00cf8e786e715d1&skin_id=701&u tm_source=otm&utm_medium=email
Are you going to see Winston and Ketch???? They are AMAZING!!!!!!!
SAGITTAL SYNOSTOSIS DIAGNOSED: JUNE 4, 2007
CVR @ TCH DENVER: JULY 26, 2007[/FONT]
Yes!!!
Winston and Ketch, yes those are the two docs we meet with next week!
I am glad to hear that! The neurosurgeon (Dr. John Lopez) who made this discovery actually worked with them in the past and has done some these types of cases with them. Thankfully he moved here to Grand Junction!
Wow! Good thing you got a tentative surgery. It might seem soon but the sooner, the better. The wait is horrible-we have been waiting since we scheduled in October and our surgery is April 8th. Good luck with everything, keep us posted!
*Leslie*
Mommy to Hayden Samuel ~ Born 8/30/2007
3 years post op - Metopic
Medical City - Dallas ~ Dr Barcelo
& Logan Lee ~ Born 1/04/2011
Small soft spot, slight plagio - about to start 3-4 months helmet therapy
Medical City - Dallas ~ Dr Barcelo
Star Cranial Center of Excellence ~ Wrap Buddies
I'm so glad you got a confirmed diagnosis! The sooner the better for surgery I'd say; the waiting is so hard.
It will be very hard and crazy and scary the next little while but I'm sure you will do fine. PLUS, you have the support of everyone on here!!!
Sarah
Proud mommy of:
Logan - Jan '06 No Cranio
Wyatt - April '07 Metopic & Sagittal - Surgery at BC Children's Hospital Feb 27th, 2008
Cooper - Sept '09 currently have some concerns with his metopic suture, we've seen a neurosurgeon but are waiting and watching
View Wyatt's Story: http://www.craniokids.org/support/showthread.php?t=2607
Well you need not worry hon, Dr Winston and Dr Ketch are a PHENOMENAL team and have been working together for 20 years. You get to see the new hospital!!! Kendall had her surgery A MONTH before they moved to the new facility.That's so weird how that turned out with you talking with Dr. Lopez and him catching it like that...the funny thing about our case was I had a plane ticket to fly down to Denver to visit my mother, I was leaving the very evening of Kendall's 8 week appt when her ped sent us for the CT scan and put in a referral after examining her...We were able to see them days later while I was in Denver! Things happen for a reason!!!! You will probably also deal with Chris (Chris Faczak) She's an awesome lady, Dr. Winston's assistant (deals with scheduling and what not [insurance]) and Jane Freeman, she is a nurse practitioner and is just LOVELY! Oh I wish I could give her a hug!!! Kendall doesn't need to go back until August, YAAAAYY!!! But I am excited to see them all again so I can give them a HUGE thank you!!!
SAGITTAL SYNOSTOSIS DIAGNOSED: JUNE 4, 2007
CVR @ TCH DENVER: JULY 26, 2007[/FONT]
I'm sorry to hear you'll be going through the surgery, but having a confirmed diagnosis and a scheduled surgery date is a huge step. It's all very scary, but our little ones are amazing and do so very well, I know you all will too! Sounds like you are in good hands too!
Melissa
Mom to 2 beautiful angels!
Kayla (8/99)
Logan (7/07)
Metopic sugery Nov. 7, 07'
www.caringbridge.com/visit/loganschaefer
Sorry that your peanut needs surgery, on one hand you are pretty lucky that you found out the date already and it's coming up pretty soon....we found out Fi needed surgery in March and she finally had surgery September.
Your baby will do great!!! Please keep us update on the appointment next week.
Mom to Noah (no cranio)
Fiona (Metopic):
Surgery #1 CVR/FOA 9-26-07 (age 10 months) Sick kids in Toronto with Dr. Phillips (PS) Dr Kulkarni (NS)
Surgery #2 Cyst removed over left eye 9/08 Dr. Phillips (PS)
Surgery #3 Cranioplasty 10-18-11 (almost 5 years old) for soft spots filled in with titanium plates/peek implant from bone resorption and scar revision. Dr. Phillips
Hi
Sorry to here your daughter has coronal, but at least that bit is over now and you can move forward, before you know it you will be on the other side posting your before and after photos!
good luck with your appointment hope it goes really well sounds like you have the best doctors on your side
Becky x
Becky mum and wife
married to Gary
Joley 22
Lauren 20
Ben 15
and last but not least Seth 2 1/2, d.o.b 09/aug/2006 left coronal cranio surgery, 17th june 08 at Birmingham Childrens Hospital England.
WE ARE ON THE OTHER SIDE !!!!!!!
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