Hello, my name is Casie, some of you may know me and my family from PRN I just
found this group and hope to learn a little more about sticklers to help my
family. I have a 16 month old son, named Skyler. He was five days late, born by
c-section, with a cleft palate. Thats all we expected. I was in the recovery
room, when the dc came in to tell me he was sick with Pierre Robin Sequence. ok,
right? Anyways, six weeks later, we were able to bring home our bundle of joy
from the hospital. During that six weeks, I discovered he also Sticklers
Syndrome,and lucky me, so did I, and possibly my mother and brother. Skyler was
trached due to his recessed jaw and airway issues, he ended up with a gtube this
past april, and is doing well. Considereing what he has to deal with. He is
just barely crawling , his upper body strength is getting better, so every week
he is doing more. He has glaucoma, and really high myopia(as far as they can
tell) I dont know I suppose he is well for what he has. I was just introducing
my self and him, and hoping to learn more from you guys, those moms who also
have sticklers,and the whole issue on another baby, I hope to hear from anyone
about anything, feel free to email me anytime, I am pretty good about
responding. Talk to you soon, thanks for your time, Casie (sticklers my self)
mom to skyler (ss, prs, trach gtube, glaucoma, repaired palate,, tubes, repaired
hypospadious)


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