How true..I think back to a year ago and wondered how we would ever get through it..Oliver has PRS, had an emergency trachy at 12 weeks, 2 palate ops, 1st one failed, nj, ng tubes and finally a gastrostomy..grommets, hearing tests , swallow tests, xrays, ct scans MRI scans etc etc..he used to be sick up to 30 times a day and now we are down to a couples day, we used to have to suction his trachy at least 1 a minute and now we can go for hours even days without doing so..it is tough but it does get easier, we as parents learn to cope with less sleep, being on a constant heightened sense of alertness, learn skills that you never thought you would need, become an expert in PRS in your child, become a respiratory specialialist, feeding therapist, speech therapist, occupational therapist, physio, gastrientrologist, nurse etc etc for no pay, no holidays , no sick pay etc..but these little people are fighters and help you to keep going..Oliver has just started walking..what a simple and longed for pleasure..
Happy birthday to your granddaughter..
: Hey Robin...that is such great news about
: your granddaughter!! She has been through a
: lot her first year of life....these little
: guys are strong ones! Congrats and happy
: birthday to her!
: --Previous Message--
: My granddaughter was born with PRS
: Sept.3,2009 & as we have her Birthday
: party today I'm so thankful she has came so
: far in a year. She spent the first 3 months
: of her life in the hospital & came home
: with a trach & g-tube. On July 7th she
: had her palete surgery & on the 19th of
: August she got her trach out. I just want to
: say that PRS children & their parents
: are so strong & awesome. I thank the
: Lord everyday for giving her to our family.
: She is truly a gift from God. Take care
« Back to index
If you would like to join our email group, please check out our home page at www.pierrerobin.org and follow the instructions there. We would love to have you.