concerned parent

[Kara]

I am a new mom to a two and a half month old little boy with a
uni-lateral cleft lip and palate. He had the surgery to correct
the lip a month ago and has done great. It is amazing what can be
done these days! I praise the medical profession and commend his
plastic surgeon. How fulfilling it must be to know what a
difference he has made in the life of a child.



Prior to my sons first surgery, my husband and I had become
quite attached to our sons defect and wished the world wasn't
such a cruel place that we could leave him how he was sent to us.
We are so proud of our little angel and can't imagine him any
other way.



I know I sound pretty positive and I try to be, but it has
definately been a challenge and I take things day by day. I thank
loving family and friends for all the support.



This is my first experience on the internet and what a
resource I have found this site to be! I have enjoyed reading
others experiences and advice.



When my son was brought out of surgery, it was a shock I
cannot explain. It was like they brought me a new baby. I was
very emotional that day and it took me a while to gain my
composure. I was not prepared for what had happened. This is my
main reason for writing today. My son will have his palate closed
in June and I would like some preparation for what I can expect.
Are their major feeding issues following surgery, what is the
recovery time, etc.?



I am also concerned about language development and hope that
someone can inform me of what I may expect. I know that every
case is different and I can't predict anything, but somewhat of
an idea will help.



I welcome any information or advice anyone would like to
offer. Our son is so precious and we are so blessed to have him
in our lives. I know we face a road of many challenges and I hope
I can be somewhat prepared through research and good people like
yourselves.



Well my little one just woke up and needs some attention, so
I will be going now. Thank You!

[Cindy H.]

Hi. I hope I can help you a little bit. I am a mom to four
children, but three of them were born with cleft lip and palate.
I have been through the lip and palate surgeries with all three.
The palate can be a tough one, but I didn't find it any tougher
than the lip on any of my three kiddies. You may see more blood
after the palate is done- usually coming out the nose. Not all
kids have the blood though. Don't be afraid to use pain killers
if needed. Most doctors give Tylenol with codeine. IF he needs
it, give it to him. For the first few days you may want to do it
every four hours just to be sure he isn't feeling any pain. He
should do OK. It's you that needs to prepare yourself for it all.
Feeding will be different once the palate is done. Depending on
your doctor you may have to have him on a strictly soft food diet
for a while. They usually tolerate that well.



Now on to speech- each child is different. Some kids with a
cleft palate don't ever need speech therapy, and then there are
some - like my oldest- who are still getting it at 9 years old
and probably will be for a while longer.



Best wishes and if you need anything else feel free to write
me at CinLou1970@aol.com



Cindy

[Li Z.]

I'm new to the site but I found the information here very
useful, especially the experience you shared about the
post-palate surgery with your children. I have a 17-mo. old
daughter who will be having her palate repaired next month. It's
good to have an idea of what to expect. Thanks!

[Kate]

What a possitive attitude you have. That's the only way to be.
We have an eighteen month old whose been through both surgeries
now. Wow, can I give you some tips. Our son is a different child
now and can eat well. He has gained 10 pounds since his surgery
in June. He talks well and is a very happy little boy.Email me at
bsoderstrom@ameritech.com.It's important that we all help each
other out, so we can best help our little ones

[SAME HERE]

HI! I'M THE MOM OF AN 16 MONTH OLD SON BORN WITH UNILATERAL
CLEFT LIP AND PALATE. HIS FATHER AND I FELT EXACTLY AS YOU
DID--NOT WANTING TO HAVE HIS LIP REPAIRED, BUT AS MOST PARENTS
DO, REALIZED THAT NOT ALL THE DECISIONS YOU MAKE FOR YOUR
CHILDREN ARE BECAUSE OF WHAT YOU SEE THROUGH EYES OF LOVE BUT
WHAT YOU FEEL IN YOUR HEART IS IN THEIR BEST INTERESTS.( I HOPE
THAT CAME OUT THE WAY IT WAS INTENDED.) THAT WAS THE HARDEST PART
FOR ME. HANDING MY SON OVER TO DOCTORS ( EVEN THOUGH THEY DO
INCREDIBLE WORK) REALIZING THAT MY BABY WAS GOING TO BE IN PAIN
BECAUSE I HAD SIGNED THE PAPERS TO ALLOW THE SURGERY. THAT HURT
WORSE THAN ANYTHING I'VE EVER FELT--AND I THOUGHT I HAD PREPARED
MYSELF FOR IT PRETTY WELL. IN RETROSPECT, I WOULD DO IT AGAIN TO
HELP MY CHILD AVOID ANY EMOTIONAL PAIN FROM NOT HAVING HIS CLEFT
REPAIRED. ON A BRIGHTER NOTE HE CAME THROUGH THE SURGERY BETTER
THAN THE REST OF US COULD EVER HOPE TO. EVEN THE NURSES WERE
SURPRISED AT HOW WELL HE DID.I GUESS I'VE GONE ON FOR TOO LONG
ALREADY, BUT JUST A BIT MORE. OUR SON HAD PALATE REPAIR DONE IN
OCT. SINCE THEN HE HAS TRIED TALKING MORE. BEFORE THE REPAIR, IT
WAS JABBERING AND MAMA ALL THE TIME.(WHICH DON'T GET ME WRONG IS
GREAT!!!) SO I FEEL THAT THIS SURGERY WAS BENEFICIAL ALSO.IT WAS
A LITTLE EASIER FOR ME TO DEAL WITH FOR SOME REASON. I'LL BE MORE
THAN HAPPY TO SHARE OUR EXPERIENCE WITH YOU , IF YOU'D LIKE. JUST
LEAVE A REPLY HERE AND I WILL CHECK IT SOON. GOOD LUCK AND KEEP
SMILING!!!!

[Kara]

Thank you so much, I feel that you can truly relate. My son
will be having palate surgery in June and that was great to here
your expereince. I would love to share more and keep in contact.
I am in the process of relocating to Salt Lake City, UT and won't
have an email address up there. I have been using my moms, but
she will live 2 hours away and it won't be feasable. If you don't
mind exchanging phone numbers and addresses with me, I could sure
use someone to talk to.



My son is doing so well and handled his first surgery very
well also. I hope that is the case for the ones to follow. I have
so many questions for you and would love to here from you!



It is late so I apologize if this is pretty fragmented. I
just typed a long reply, but somehow lost it when trying to post
it. This is my second try and hopefully it is a sucessful one.



Thanks again for your response, please keep in contact.



Sincerely, Kara Freeman



P.S. I would also love to exchange pictures!