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Re: Pierre Robin/Dwarfism
Posted by nicole on 1/11/2012, 12:58 pm, in reply to " Pierre Robin/Dwarfism "
Hi TARA, |
MY NAME IS NICOLE I HAVE A 5 YEAR OLD SON THAT WAS BORN WITH PRS. WE DIDN'T KNOW ANYTHING WHILE I WAS PREGNANT. I THINK THAT IS ONE PLUS SIDE BECAUSE THE DOCTORS CAN BE PREPARED WHEN YOU GO INTO LABOR. I'M NOT GOING TO LIE IT WAS A VERY HARD PILL TO SWALLOW. I HAD 2 HEALTHY CHILDREN BEFORE MY SON RICHARD. HE HAD TO HAVE A TRACHEOSTOMY 1 UR AFTER BIRTH BECAUSE HE WAS UNABLE TO BREATH ON HIS OWN. THEY INTIBATED HIM RIGHT AWAY. JUST KNOW THAT IF YOUR BABY HAS THE SAME ISSUE AT BIRTH THERE ARE WAY THAT THEY CAN HELP THEM TO MAKE IT. NEVER TAKE NO FOR AN ANSWER. I PRAY YOUR BABY COMES OUT SCREAMING AND CRYING ...... BUT IF THAT DOESN'T HAPPEN NEVER GIVE UP... MY SON HAS HAD 22 SURGICAL PROCEDURES AND IS SO HAPPY AND PLAYFUL.. HE IS IN KINDERGARTEN NOW AND WE ARE NOW FINDING OUT HE MAY HAVE OSTEOPOROSIS... HE BROKE HIS FEMUR LAST MONTH ..... WE HAVE MADE IT THIS FAR BECAUSE I ALWAYS STAYED ON THE DR ABOUT EVERY LITTLE THING. AND I DIDN'T TAKE NO FOR AN ANSWER..... KEEP UR HEAD UP BE STRONG AND STAND YOUR GROUPND WHEN IT COME TO YOUR PRECIOUS GIFT FROM GOD.... I ALWAYS TOLD MY SELF THE LORD GAVE ME A SICK CHILD BECAUSE HE KNEW I WOULD CARE FOR HIM BETTER THEN ANYONE ELSE WOULD .......THAT IS WHY HE IS HERE WITH ME.....
LOTS OF LOVE TO YOU YOUR FAMILY AND ESPECIALLY YOU UNBORN PRECIOUS MIRACLE....... NICOLE
: THANK YOU for the message. It was very
: helpful to hear little Dustyn's story - He
: sounds like a great kid. I hope that
: Piper(that is her name) makes it through her
: first year and becomes a happy little
: toddler. There are just so many horrible
: stories out there so it was really great to
: be inspired by your message. THANKS Katie
: for the prayers - That is about all we can
: do as we wait for her arrival!
: --Previous Message--
: Hi Tara
: Congratulations on your pregnancy! I'm sorry
: to hear that they are noticing some
: complications but don't let that take the
: excitement out of it-they don't know
: everything, there are so many factors
: (especially true with PRS babies). My son
: Dustyn (PRS diagnosed at birth) is almost 3
: 1/2 now and he was diagnosed with Robinow
: Syndrome about a year ago. Robinow is a form
: of dwarfism and there are two types dominant
: and recessive. They are both EXTREMELY rare.
: There's almost no information on it which is
: scary b/c it's like we have to wait and see.
: He has the dominant form which is more rare
: but less severe. We are lucky it doesn't
: affect intelligence or anything else really,
: it just ties a lot of his symptoms and
: findings together. Unfortunately I can't be
: of much help with more info, but just know
: that we are a case, too, with the dwarfism
: tied with PRS and he is doing just amazing
: The first year is definitely the most
: difficult. But he is such a happy boy, so
: I think it's safe to say most of us moms
: here will never have such a carefree
: pregnancy like we've had in the past. I know
: it's tough but I hope you are finding
: glimpses of normalcy and moments to
: celebrate your daughter. I'll be praying for
: her. I'd love to hear updates, you can email
: me anytime.
: Good Luck and take care
: --Previous Message--
: I am 20 weeks pregnant and my baby girl has
: Pierre Robin (Recessed chin and cleft
: palate) and has some form of dwarfism. She
: also has 6 toes on each foot. Our Dr.
: said(worst case) that she may not live at
: all and that we need to wait and see if she
: can breathe when she is born. He also
: suggested that she has surgery to help her
: breath while she is still attached to the
: chord. Let's just say that my husband and I
: are completely overwhelmed and scared. We
: are fine with the Dwarfism We just want her
: to make it. We have three healthy sweet
: little girls (3 and under) and we are just
: so scared about the outcome of this new
: life. Does anyone have experience with
: Pierre Robin and Dwarfism? Any support or
: information would be so helpful- THANKS -
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