Posted by Katie
on 10/7/2009, 11:24 am, in reply to "PRS "
98.206.53.35
Hi Shadhiaa
My name is Katie. I, too, have a son with PRS and became a mom rather young, just after my 20th birthday. He is now 14 months and such an incredible lil man. I remember him being that age and me in your shoes. My son was in the NICU for 7 weeks and I was heartbroken. The parents on this message board are extremely helpful and have encouraged me along the way. I know it's tough to believe now, but it will get better! This is the hardest part. I can promise you that a year from now you will be so amazed with your boy at what he's overcome. My son still is primarily g-tube, still has unrepaired cleft, still has low muscle tone, and some breathing issues but I am certain he will continue to surprise me and surpass my expectations, as will your son.
Never hesitate to ask a question here, you will get some great answers. I'm still learning too but if you'd like, I could try and answer some of your questions. I have pictures from surgeries my son has had, if that helps too....
Explore your options when it comes to the difficult choices you will make. There is no right or wrong way to go, nor the same path that every PRS kid will take. You know him best, you'll know what needs to be done.
Hang in there. Feel free to contact me:
bellawella6188@hotmail.com
Katie & Dustyn
--Previous Message--
: my son has prs and it is very difficult for me
: to deal with. he is a three month year old
: twin and his twin was born normal so it
: makes it harder for me to deal with my son.
: i need help. are there any support groups
: out there for me. my twins are three months
: and i am only nineteen. my son also has a g
: tube and is gaining wieght but you cant see
: it on his body he is skin and bones any
: advice he is already on the emfamil ar
: formula that has rice in it. i have so many
: questions and concerns.
:
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