anyone?

[Jennifer]

I am frustrated because I am having a difficult time finding
anyone to talk to about the difficulties of having a child with a
cleft. I have found numerous sources for a parent with a child
with a cleft lip & palate, but few with a child with only a
cleft lip? Is just a cleft lip that unusual?

[Anonymous]

hi jennifer, my daughter just has a cleft lip and i also
havent had anyone to correspond with. i have no idea if just
cleft lip is common or the palate? but my email add is
ccro100539@aol.com if you want to correspond with me my name is
yvonne

[jennifer]

Hi Yvonne. My computer is being possessed lately. Anyway, I
tried to email you a couple of weeks ago to wish you & your
family goodluck during the surgery time, but my email to you got
returned. I have been very busy with the holidays & the end
of semester for me at college, but I wanted to let you know that
I have been thinking about your daughter & your family &
I hope all went well Jennifer My email is jcol411@netusa1.com

[Anonymous]

hi jennifer, yes the surgery went very well her stitches are
out now but it was hard couple weeks for sure. didnt get much
sleep and was pretty emotional couple weeks.but thankfully its
all over with. we also have been so busy. would love to
correspond with you not sure why you mail was returned?? let me
give you email add again its ccro100539@aol.com would love to
chat some more with you. take care yvonne

[Jennifer]

Hi Yvonne. I am so glad to hear that everything went so well
with the surgery. You will be amazed at how quickly the swelling
will go down & the after effects of the surgery will be
evident. It is amazing to me now to look at pictures of my
daughter before and after the surgery because she looks like such
a different baby. It has been almost a year since her surgery.
Anyway, is you email ccro100539@aol.com? is the 1 a number one or
the letter L? I know that has been a problem before when people
try to email me because mine is jcol411@netusa1.com with the
first l being an L and not the number one as the rest are. Please
let me know because I would love to talk to you too about how
you've dealt with all the problems and emotions of having a child
with a cleft. If I don't hear from you before have a Merry
Christmas! Bye, Jennifer

[yvonne]

hi jennifer, did you get my email the other day?? hope it went
through. anyway yeah my email add is ccro100539@aol.com and that
is a number 1 not an L guess that can be confusing. i cant wait
till the redness fades on my daughters lip. not much swelling but
sure is red looks real sore. anyway doing best i can with the
messageing sure is tough to get her to let me do it so hope im
doing a good enough job. well hope to hear from you and merry
christmas to you too. take care yvonne

[sylvia]

After writting my article for an answer, I suddently
discovered yours and I was thinking the same as you. It is true.
I have heard that isolated clef lip is not as common as clef lip
& palate lip. My son, who is now 10 years old, was born with
cleft lip (only cleft lip). He was operated at 8 months of age
and his only problem is the scar and the appearance of the lip
which is still somewhat, I would say not completely normal. He
has no speech problems or others. I would like to know the age of
yours and maybe we can exchange information. I am writting from
Spain.

[Jennifer]

Hi Sylvia. Wow, Spain!! Anyways, my daughter will be 15 months
old on Christmas Day. She was just over 4 months old when she had
her surgery. My daughter (so far) doesn't appear to have any
speech problems either. We are supposed to go back to the surgeon
in February for a one year follow up. Was the cleft in the lip
the only cleft your son had? My daughter was also born with a
cleft in her ear, and the surgeon said that was common for a
child to have a clefted ear if they only have the lip clefted?
Ever heard anything like that? Anyway, I would love to hear more
about you and your son since you have lived through ten years
with a cleft, and I have dealt with it for only one year. Looking
forward to hearing from you soon. Merry Christmas!



Jennifer

[Jennifer]

Hi Yvonne! Glad to hear that she is still doing very well. It
will take some time for the redness to go down also. Even almost
a year later, my daughter still has some (very little) redness,
but that just goes along with it being a scar. The thing I really
notice is that when she cries or stretches her mouth open, her
scar gets really white. For a while she had a suture in there
that hadn't dissolved. Just within the last month or so has it
dissolved. I tried to email you but it kept being returned? &
no I didn't get your email either. Computers are great, but
sometimes they just stink! Oh well, Maybe I will try again to
email you soon. Gotta go play Santa and get some Christmas
shopping done. Merry Christams & talk to you later. Jennifer

[Sylvia]

Hi Jennifer. It was nice to hear from you so soon. I remember
we also went to the surgeon for a one-year follow-up and he told
us maybe our son would be then operated for a scar revision. But
then he said no, and the second operation was left for "some
day" when our boy was "big" (I really do not know
what age this means). Now we are thinking of going back to the
surgeon to see if this is an appropriate age for a revision. As
you say, we have lived ten years with this cleft. Our boy has had
no problems. Of course everybody first meeting him asks what's
the reason for that scar and everybody thinks he has had an
accident, and doctors ask if it was an accident or a clef lip.
One day he asked me why everybody asked him about it, but I do
not think he is worried about it for the moment. We have not told
him about the cleft yet; we have just said to him that he fell
down when he was a baby and the wound should be repaired. Before
visiting the surgeon again, we intend to explain to him all the
details. He only had this cleft. Did you have any family history
of a cleft? When our son was born, we found out that a brother of
my husband's grandfather also had a cleft and our doctor said
this could be the reason... but nobody is sure. By the way, where
do you live in the US? I have a brother living in New York City.
We live in Madrid, Spain.



Hope to hear from you again. Merry Christmas.

[yvonne]

hey jennifer, well looks like i'll have to write you here
since i dont think my mail is going through. does the redness of
the lip ever completely go away? i had no idea that discoloration
lasted so long. im not sure but i can kind of tell already my
daughter will need another surgery when she four or five. for her
nose and to fix the tip of her lip (which seemed perfectly even
right after surgery but now is puckering up again almost like
before her surgery but not as bad) im messaging it best i cant is
this normal? i have heard alot of things happen during the
healing process with the muscle contracting and relaxing but i
hope her lip doesnt go right back to the way is was. well hope to
hear from you soon! did you have a good xmas??

[Jennifer]

Hi Sylvia. I was very glad to hear from you. As far as I know
there is no history of clefts on either side of my daughter's
family. No one is quite sure what has caused her cleft because I
had a very unremarkable pregnancy. The one thing I forgot to ask
you about in my last post was a problem my daughter seems to have
frequently. She seems to get very dry chapped lips & the skin
around the scar on her lip peels very easily. Does your son have
a problem with this? Hers peels away about every two to three
weeks. We live in Indiana, in a very small town of about 7-8
thousand people. I attend the local university where I am
studying to be a nurse. I hope to one day work at the children's
hospital where my daughter had her surgery. My
daughter(Mackenzie) has a cold right now that is from an ear
infection so I need to go get her to lay down for a nap (since
she was up most of the night) Happy New Year! Jennifer

[Jennifer]

Hello! I'm not sure why our emails are not working? I even
tried the cut-paste trick from an entry were you typed your email
address & it still got returned. The only other possibilty is
like what happened to a friend of ours who had aol. She had been
messing around with the computer & put a block on maill that
was not in her email address book so the mail from my address
(the first time sent) got returned. This doesn't solve the reason
why your mail won't go through to my address? Oh well. Yes, the
redness will go down. It just takes a while. Did your surgeon
tell you to massage the lip? My surgeon never mentioned that to
me to do after Mackenzie's surgery? We just went to the family
doctor yesterday (mild right ear infection) & our rgeular
doctor was in florida so we saw one of the other doctors. Anyway,
she had never seen Mackenzie before (I used to work in the
doctor's office) and she asked me if Mackenzie had had a cleft
repair & when I said yes, she remarked on how good the
surgery looked & that the only reason she noticed was because
her father was a plastic surgeon so she had seen many of his
repairs. I also had thought after her surgery that she would
surely have to have another surgery because I could stil tell
exactly why she had a scar & that I could still she 'two'
lips that didn't look joined together. Now though, after a year
in February, she just looks like a normal kid with a small white
line from her nose to her lip. The redness will go down & the
scar will continue to come together & look right. You just
have to be patient for a little bit longer. It will all come
together. Yes, we had a good Christmas. It was very fun this year
with a 15month old. She really enjoyed the ripping open, but now
she doesn't understand why all paper is not ripable. This
Christmas was pretty peaceful for me because I didn't hear from
Mackenzie's father's family very much. Just twice, but they still
didn't push to see her very hard, but otherwise we had a great
Christmas. How was yours? Well, Mackenzie has a runny nose &
needs a nap so I'll talk to you later. Happy New Year! Jennifer

[yvonne]

hello jennifer, well i checked my mail preferences and i can
get all mail. i even get all that junkmail too. so not sure why
your mail not getting through. but i'll try to write you again
and see if that goes through. yes it was requested by her surgeon
about the lip message. not sure what its for? but were just doing
what he tells us. when you said you could still see "two
lips" did it look like before her surgery? and then it
healed correctly? i know im being too anxious but gosh its hard
not to be when you can still see the same things as before the
surgery. her lip is still greatly red and now the red part of her
lip is drawing up as it was before but not as bad. theres nothing
i can do but wait but i just need some reasurrance is this
normal?? next month is when we will see the surgeon again for
post op pictures only though. im so glad your christmas was good.
do you wish her fathers family would see her more often or do you
like it better this way? sometime family is best from a distance
ha! im married to my daughters father but his mother (Alyssa's
grandma) has never seen her. she even lived about 20min away for
Alyssa's first 6mos. of life and then moved to another state. i
have sent pictures though. it wasnt because of her cleft though
because she didnt even know about it untill recently she heard
about the surgery. family can be so hard to deal with sometimes.
cant worry about it i guess. but it is a shame! well i'll close
for now. hope all is well and will try to write you tomorrow let
me know if it goes through. yvonne

[Jennifer]

Hi Yvonne. Yes, after Mackenzie had her surgery it still
looked like she had two lips & I couldn't see how the surgery
could have possibly been the succuess that the surgeon kept
saying that it was. To me it didn't look like one smooth lip, it
just looked like the split wasn't quite as long. So is that
enough reassurance? Just kidding; you will need more reassurance
as it goes,but please believe me, the look of the lip & the
scar & the swelling & the redness WILL get better. People
just ask me now if Kenzie fell & cut her lip when I just
mention her cleft, they just look at me with amazement because
they wouldn't have guessed that. Granted these are people with
little medical background, but even the doctors & nurses that
I work with cannot believe how well the surgery turned out. Even
though I got to work Tues & Wed of this week; I am about to
go stir crazy in this house!! I am sick of snow! We got approx.
10-15 inches over 3 days! The ice we got is even worse! It
usually takes me @ 30 minutes to go to work & it took me 75
minutes to get there on Tues. I am sick of not being able to go
where I want to go & Kenzie is about going stir crazy even
worse. She has had a cold over the last week so over 8 days she
has left the house 1 time (to go to the doctor) So we are going
to venture out today for lunch at Mcdonald's (3 blocks away) so
Kenzie can get out. I didn't get any email from your address. I
checked just before I got this message from you. I don't know
what the deal is either, but it is frustrating! Was you New
Year's holiday good? I got snowed in in Indianapolis with my
cousin, her husband & my boyfriend while my daughter was with
my parents 80 miles away! It was awful because I knew she was
sick & I couldn't get to her. Anyway, it is time to fix her
breakfast so I'll quit rambling on. Bye, Jennifer