Born: April 1, 2007
Illness: Muenke Syndrome, Bicoronal Craniosynostosis from the Muenke, Developmental Delays, Hearing Loss in left ear, narrowed brain ventricles
Theme: Princesses
THANK YOU
Thank you all so much!! I LOVE the quilt and so does Christina. I can't wait till we can take it to Dallas with us next month and tell people about it and all of you who so lovingly made it!
To stitch a square for Love Quilts you will need to join the yahoo groups to see the listing of patterns that are already being stitched. It is an open group so you can sign up easily and view the patterns right away. Once you are a member you wont have to sign up again, just sign in and to make it easier yahoo allows you to stay signed in for 2 weeks at a time! Please follow this link to sign into the Love Quilts Yahoo Group...
Once there click on the link "database" on the right to view the children and their patterns. Once you find a pattern of your own that you want to stitch and have confirmed it is not already being stitched by viewing the pattern listing on the yahoo site, please link below to formally sign up for a square. If you have any questions about the yahoo group please email Cyberfogie@aol.com, Vicki, for further instructions (yahoo groups email only!) Thanks!
Our story begins when Christina was two months old. We were told that she may have Apert's syndrome and need to get checked out. Long story short, we found out when she was three months old that she did not have Aperts but in fact had Bicoronal Craniosynostosis with the chance of either Muenke or Crouzon Syndrome.
She had surgery for the craniosynostosis when she was almost eleven months old. Since then we were told she had Muenke Syndrome for sure, thanks to genetic testing. She also has developmental delays and hearing loss that we are still looking into what to do about. We were recently told that she has narrow brain ventricles also. That basically means that another surgery eventually is imminent. We were told in the beginning of this that four surgeries were possible. Just in the last month Christina had ear tubes put in and her adenoids taken out. We will be going at the end of July to do a new hearing test and see where we are going from here on that. If the audiologist that she had the first time is right, we will eventually be looking into a hearing aid for Christina.
Christina and her family are in this journey for a long time. We will have to monitor for a lot of things well into her teen years because of the craniosynostosis. She also has a severe speech delay as well. It has not been an easy journey for us but there are a lot of things that we would have missed out had we not been on this journey.
