Important checkup tomorrow for Gwen
Very nervous about tomorrow! Gwen will be seeing her eye doctor for a followup on her papiladema. The hope is that the swelling in her optic nerves is gone which would prove her recent cranial expansion a success. If swelling is still present...we will go from there but not sure yet what will be done. Please send good thoughts Gwen's way!!!! I will update after her appointment.
Kate
My babies
Connor: 6/7/08 metatopic ridge, no cranio, helmet therapy for plagio due to torticollis
Gwendolyn: 9/30/09 right coronal and Saethre Chotzen Syndrome, CVR/FOA 7/26/10, ICP detected January 2012, Cranial Vault Distraction surgery 3/8/12, Distractors removed 6/14/12, CSF Leak repair at CHOP.
Will be thinking of you.. Keep us posted.
Cheryl (mom to Clara, born 11/5/02)
profound unilateral hearing loss
Saethre-Chotzen syndrome
Right coronal cranio-CVR/FOA 9/15/03; cranioplasty 4/5/05
ear tubes-6/30/04, 5/9/06
ptosis surgery-7/1/05, 8/13/10
strabismus surgery-10/11/05, 5/9/06
Good thoughts will certainly be coming your way.
Beth
Kyra Rose - born 5/25/09
sagittal surgery -10/14/09 at CHOP
Good luck!!!
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
Hoping for good news!
Tammy
Jesse's Mommy (2/18/11) - Moderate/Severe Metopic w/Trig
Aug 23, 2011 - CVR/FOA #1
Aug 29, 2012 - CVR/FOA #2 (Dr. Fearon & Dr. Sacco)
We are on the other side AGAIN!!!
Jesse's Cranio Journey
Good luck tomorrow!
Good luck tomorrow!! Will be thinking of you!
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
Mostly good news today for Gwen. The pressure on her optic nerves is totally GONE!! Her cranial expansion was a success so that means the distractors will be able to come out for good in June! The bad news, and not at all unexpected, is that the doc now wants to do eye muscle surgery on her left eye. He is not happy with how much she is still crossing even with wearing the glasses. He is willing to do the surgery at the same time her distractors are removed, I just need to check with her CFS and neuro if this will all coordinate. Since she may need a dura repair due to her CSF leak it might make things more difficult. I'm hoping it works out to all get done on the same day. One less time under anesthesia would be nice!
Kate
My babies
Connor: 6/7/08 metatopic ridge, no cranio, helmet therapy for plagio due to torticollis
Gwendolyn: 9/30/09 right coronal and Saethre Chotzen Syndrome, CVR/FOA 7/26/10, ICP detected January 2012, Cranial Vault Distraction surgery 3/8/12, Distractors removed 6/14/12, CSF Leak repair at CHOP.
So happy to hear the distraction was a success for Gwen! Ive been prayibg for her! We were just at Bartlett's office today and got word we can finally stop turning! We are go back next week to check on her CSF leak (which is still in full force, unfortunately) and to schedule removal of the hardware for June as well. Any interest in attempting to schedule removal the same day?!? PM me if interested! I would totally be game (but would absolutely understand if you weren't comfortable with it!) just thought it'd be neat since we are going through the same thing. Take Care!!! XOXO
Tracey...Momma of 2 beautiful little girls:Lainey Lynn 1/18/05...Darienne Grace 8/25/11, Saethre-Chotzen Syndrome, bi-coronal and metopic craniosynostosis...March 29, 2012- Posterior cranial vault distraction with Drs. Bartlett and Sutton at CHOPhttp://www.caringbridge.org/visit/dariennelacey
Great news Kate. I'm glad the surgery was a success! Keep us posted for the removal in June.
Tessa - mom to Sophie and Ben
Little Miss Sophie - 12/22/08 - Sagittal - Endo surgery 4/16/09 @ St. Louis Childrens
Baby Boy Ben - 12/14/11 - No Cranio!
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