I finally put together a montage of Zack's surgeries. Enjoy!
http://www.onetruemedia.com/shared?p...edium=text_url
Zachary's montage
I finally put together a montage of Zack's surgeries. Enjoy!
http://www.onetruemedia.com/shared?p...edium=text_url
Marisa - mom to:
- Elizabeth(10)
- Zachary (7) - metopic CVR 6/04, cranioplasty 3/06, eye muscle surgeries 12/04, 5/05, 5/07, CVR and split-skull bone-graft 9/08 (whew!)
- Alexander(5)
- Katherine born 6/25/10
That was so lovely to watch, thanks so much for sharing. I hope the next surgery will be the final one for little Zachary. And no doubt he will smile through that one too!!
Annmarie mum to Georgia 22/5/02
and Jack 10/3/04 born with Bicoronal synostosis, had FOA in August 2005 at 17months.
http://aolpictures.aol.co.uk/ap/myAl...176240108507.1
i am in tears. that was beautiful. i hope this next surgery is it for all of you.
: ) amy
amy is mommy to cyrus (saggital, metopic), raina, and sage.
Marisa,
Did Dr. Crone do Zachary's second surgery? Why did it fail? I loved the video by the way.
Tiffany
Kayla - 1/1/03
Addison - 3/30/05
Nolan - 10/4/07--sagital cranio--Surgery at Cincinnati Childrens 11/13/07
Great video Marisa, very touching.
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
Tiffany...I responded privately with my surgeon trashing since you're at the same facility...didn't want to do that publicly. But as far as the reason for the failure...the cranioplasty was done endoscopically with bone paste. I have since found out that is not the preferred method for cranioplasty. Some centers (Johns Hopkins is one, I believe) will do bone paste over titanium mesh, which seems to have better results. However, the procedure I hear the best things about is the "split skull bone graft" in which a piece of skull is taken form the back or side, split in half depth-wise, then the inner portion is placed in the defect and the outer portion is put back where it came from. What looks like happened in Zachary's case is that where there was no existing bone, the bone paste never really turned into bone, or at least not enough of it did, so we still have a large defect. Even the bone paste that was placed to round out his temples did not work well, as he is back to a somewhat trigonocephalic shape. The surgeon we are hoping to use this time said the second sergery was doomed to fail from the start. He also thinks there may have been a protein used that is not FDA-appoved for use in children that may have caused additional suture closing.
I know we have a lot of younger babies on here, but if anyone wants to chat about cranioplasties down the road, please let me know. I'd love to help someone else avoid the path we took!
Marisa - mom to:
- Elizabeth(10)
- Zachary (7) - metopic CVR 6/04, cranioplasty 3/06, eye muscle surgeries 12/04, 5/05, 5/07, CVR and split-skull bone-graft 9/08 (whew!)
- Alexander(5)
- Katherine born 6/25/10
Marisa...that was awesome! Made me cry. I really liked your song choice too. You guys are in my prayers...it sounds like you've found a doctor that can help, I'm just so sorry that the second surgery failed. Give your brave boy a hug from me!
Proud Mommy to
Caleb -17
Ethan -13
Joanna -11
Olivia -9
Isaac -5-Metopic Cranio, no surgery;Chiari Malformation and Posterior Fossa Cyst, surgery 4/1/08 & 12/03/08; Pseudomeningocele and CSF leak, surgery 12/18/08; Multiple congenital Heart Defects, Autism, Multiple Birth Defects
http://www.caringbridge.org/visit/i.m.lucky
Wow, I loved the montage. Isn't it sweet and amazing how they just keep on smiling even when they can't see? I hope things go well with your next surgery and that you can finally put all this behind you.
Monica and Tony
Charlie - 8/13/99
Lucy - 2/27/02
Alexander - 4/22/05
Florence - 11/26/07 (metopic - surgery on April 9, 2008)
www.metopicflorence.blogspot.com
LOL...Zachary and I just had the funniest conversation. I came to read the new posts. He was looking over my shoulder and wanted to see his video again. When it was over and I scrolled down, this was what I heard:
Z: Who's that?
Me: Isaac.
Z: Does he do anything?
Me: What do you mean?
Z: Click on him. Does he play music or anything?
Me: No.
Z: Well who's that?
Me: Florence. She just had surgery like you did when you were a baby.
Z: You mean the one that aggravated me?
Me: Did your surgery aggravate you?
Z: I think so, but I don't remember. Can you peel my orange?
The boy just cracks me up!
Marisa - mom to:
- Elizabeth(10)
- Zachary (7) - metopic CVR 6/04, cranioplasty 3/06, eye muscle surgeries 12/04, 5/05, 5/07, CVR and split-skull bone-graft 9/08 (whew!)
- Alexander(5)
- Katherine born 6/25/10
lol how funny!
Proud Mommy to
Caleb -17
Ethan -13
Joanna -11
Olivia -9
Isaac -5-Metopic Cranio, no surgery;Chiari Malformation and Posterior Fossa Cyst, surgery 4/1/08 & 12/03/08; Pseudomeningocele and CSF leak, surgery 12/18/08; Multiple congenital Heart Defects, Autism, Multiple Birth Defects
http://www.caringbridge.org/visit/i.m.lucky
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