anyone?

[yvonne]

hi jennifer, well i tried to email you couple days ago. if ya
didnt get it not sure what else to try? i dont have a problem
emailing anyone else its very weird that your not getting them.
anyway yeah i do feel better now since you say that it didnt look
like surgery was succesful either at first. Alyssa is looking
better. it just seems to be going through so many different
stages. it seems to be pulling down again which is good and now
the scar has become a thick red line all the way down which i
know that will go down also. what im not sure of is does that
scar become flat to the skin or is there always a little
"raise" in the white of the scar?? as you probably can
tell im not real good with patience ha,ha! i hated the waiting
for the surgery and now i hate the waiting for the results!!
anyway yes we had a wonderful new years eve. just had champagne
and watch few rented movies. it was quiet. wow cant believe you
got snowed in how scary and to have your baby not with you.
thankfully she was with your parents though huh? well better get
going Alyssa should be waking up from nap soon. Alyssa is 12 1/2
mos. now and is not walking yet. when did your little one start
walking?? hope to hear from you soon yvonne

[Jennifer]

Hi Yvonne! I know it is hard to be patient, but believe me the
lip will look better. I can remember thinking that the surgery
didn't "do" anything for Mackenzie's lip but make it
look like someone just sewed it together. I thought the surgeon
was crazy when he took her sutures out & kept saying what a
success the surgery was. I remember thinking he was deranged
because there was no way that the surgery could have been a
success. But now, her lip looks like one lip. Yes there is still
a white line where her cleft was that is now a scar, but it is
flush with her skin. It is not raised. I can still see the cleft,
but most people cannot, but I know it was there. I am glad your
New Years was good. I was glad that my daughter was with my
parents when I got stuck, but at least I have made up for it,
considering the fact that we have been more or less stuck since I
got home. It is just too bad outside to even think about taking
Mackenzie outside in the cold. At least today the temp is already
up to 40 degrees so it won't be as bad when I take her out to go
to the doctor for her 15 month check-up & shots. She is
almost 16 months old, but she turned 15 months old on Christmas
day so this was the first available appointment when our doctor's
office re-opened. Anyway, give Alyssa some time. She will walk
when she is ready. How old were you or Alyssa's dad when you guys
learned to walk? I learned to walk about 1-2 weeks after my first
birthday & Mackenzie walked 1 week after her first birthday
(well that's when she walked really good on her own-she had taken
some steps at about 11 months) I really wish we could get this
email thing figured out because I would email you a before &
after picture of Mackenzie so you can see what you really do have
to look forward to. It is frustrating. Anyway, have to go get
ready to go to the doctor & I really should quit rambling!
Talk with you soon. Jennifer

[yvonne]

hi jennifer, yeah i wish we could email eachother i have a
picture of Alyssa online that was taken 2 days before her
surgery. i wanted some taken before and then i will get some
taken soon for her "after" surgery portrait. well i
learned to walk when i was 13mos. on the dot according to my
mother. and as far as my husband goes who knows. he is youngest
of 6 siblings and no one kept track past the fourth kid on
development ha! Alyssa will probably be a late walker. she didnt
even sit up till she was like 8 1/2mos. not kidding. guess she
just didnt feel like it. she gets around though. she crawls and
can scoot around holding on to the furniture. so will mackenzie
need another surgery when she is older ya think? alyssa probably
will on her nose since nothing was really done yet to improve
that but that wont be till she is 5 or 6. so do you plan on
having any more children?? my husband and i want to. i think we
are going to get that genetic counsleing to see what our chances
would be of having another cleft affected child. well take care
will go for now-hope to hear from ya soon

[Lori]

I am sorry but I can't see how you cannot tell your son what
really happened. This is a major event that has happened to your
son. You should not hide it like it is shameful. He should be old
enough to know the truth. If you have questions about telling him
you should call your plastic surgeon. I am sure that she/he can
refer you to a psychologist. They can help you tell your son. But
you should tell him soon.

[Sylvia]

Hi Jennifer: I just read your new message. I have not been in
the net for a while, because of the flu. About the scar, I can
just tell you that you may notice "things" for some
time, but finally the skin will be normal. I think her scar is
still very recent. Sylvia

[Jennifer]

Hi Yvonne. Sorry it's been so long, but school is back in
session for me & nursing instructors have no mercy. In
answering your questions; I'm not sure if Mackenzie will need
another surgery or not. We go to see the surgeon on the 15th of
Feb for her 1 year follow-up. It also depends on how her scar
grows with her & that could take years longer to determine. I
will definately have at least one more child. When I first went
to see Kenzie's surgeon I asked him lots of genetic type
questions. I asked him what the odds were of having a child with
a cleft & he told me 1 in a 1000. (Since then I've heard 1 in
750) He also told me that if you have already had a child with a
cleft the odds go to 1 in 4. That was pretty scary, but I asked
him if it would make a difference if my next child did not have
the same father(which it will not) & he said that might not
make the odds go down because no one knows for sure what causes
clefts & it wouldn't be possible if it was me or Kenzie's
father that had the genetics for the cleft (if either of us did)
The surgeon also gave me a great analogy of what he thought of
statistics. If a person were to place one foot in a bucket of
boiling water & one foot in a bucket of ice water; that
person's foot temp should be even! I look at it this way, I love
my daughter more that anything in this world & she is even
mor special because of her cleft & if my next child has a
cleft that won't make that child any less lovable it will just
make that child special too. Well, I've taken enough of a break
from studying, so I gotta rush so I can finish up & go to bed
so I can get up bright & early & start all over again.
Bye. Hope I hear from you soon. Jennifer

[yvonne]

hi jennifer. wow it looks like were almost off this page ha! i
wish our email's would work cant figure that out?? anyway, that
is so great your going to school. i would love to go back to
school to further my education but my husband is working two jobs
and i just took a part time nursery job where i can bring Alyssa
for some xtra $. so i dont foresee being able to return to school
anytime soon. yes i also would love another child cleft or not.
they do run in my family so my chances are greatly increased
because of it. its not the cleft that worries me its the
surgeries i hate. i went through it with Alyssa and it was hard
as you well know yourself. it just breaks my heart to hand them
over to a surgeon. but what ever will be will be and i definatly
will have another child maybe within the next year. i dont want
them to far apart in age. well i better be going. im exhausted
those kids at the nursery have just too much energy ha! hope your
doing well at school and hope mackenzie is well also. what new
fun things is she doing these days?? write when ya get time,
Yvonne

[Sylvia]

Hi Jennifer and Yvonne: I have read some of your letters. I
had already "talked" to Jennifer and I would like to
tell both of you something about having another baby. I have one
son with cleft lip alone. He was my second child, the first was a
girl, who was completely normal. And after this boy with cleft
lip I've already had two more children. One girl and one boy.
They all have a normal lip. Of course I was somewhat worried when
I was pregnant and I always asked the doctor in ultrasonography
for their lips. Fortunately, everything was OK. I have read that
it is very important to have folic acid during the first term of
pregnacy to prevent this and other malformations. Hope this have
helped you. My e-mail if you have any question is
CAMBRAY@teleline.es



Sylvia

[JESSICA]

I HAVE BEEN READING SOME OF THE ARTICLES BUT NONE SEEM TO
ANSWER MY QUESTION. WHAT CAUSES CLEFT LIP? IS IT HEREDITARY? I AM
ALMOST 3 MONTHS PREGNANT AND MY HUSBAND WAS BORN WITH CLEFT LIP
AND I AM WONDERING WHAT THE CHANCES OF OUR BABY BEING BORN WITH
IT ARE?

[sylvia]

High Jessica: I am not a doctor, but, as far as I know, there
are cases where it has been inherited and some where doctors do
not know the reason. Parents with cleft lip sometimes do have
children with it, but others do not. Of course the chances are
higher, but it must not necessarily occur. In fact, I know one
case of a father with cleft lip/palate who just had a child
completely normal. I think all you can do is take a lot of folic
acid (which I think your doctor will have already prescribed to
you), ask your gynecologist in every echography to look at the
baby's lip... and good luck. I am sure everything will be O.K.



Sylvia

[Jennifer]

Hi Jessica. Unfortunately, there is no "correct"
answer to your question. All of the doctors I have talked to have
never been able to tell me what exactly caused my daughter's
cleft. Some say genetics, some say dietary deficiency, and some
just say they don't know. I have even come across articles that
deal with maternal smoking and the link between that & a
cleft. So, sorry to say there is no 100% correct answer. However,
Sylvia was right in saying how important it is for you to
communicate your questions to your doctor. Tell your doctor about
the baby's father's experience with a cleft, and ask for an
ultrasound to check if you are really concerned. Just remember,
even if your child should have a cleft, the child will just be
that much more special & I don't know if you came across one
of the articles in this list, but one time someone wrote that
special children are given to special parents. No matter what the
outcome, you and your family will be alright.

[Jennifer]

Hi yvonne! How are you. I finally have some time to breathe
now that my first round of exams for the semester is over. How is
your daughter? Is she walking yet? If not it will probably be
very soon. Kenzie is just hitting an age that she is just a
little corker. She points at everything she wants & she
usually gets it. She is just so cute that I have a hard time
telling her no. In answer to your question, yes, I will have at
least one more child. Two more at the most. I just can't imagine
what it would be like to have another child though. I mean my
daughter is so special to me because of her father having died
& her cleft and what we have been through with it, that I
just cannot imagine loving another child as much as I love my
daughter. I know that might sound crazy, because I know that when
I have another child I will love that child, but right now it is
hard for me to imagine. Do you ever feel that way? I probably
won't go to a genetic counselor though when I do decide to have
another child, because I have already been through the
"cleft thing" and if it happens again, then it happens
again, we'll deal with it & that child will be just as
special as my daighter. I am a little nervous lately because on
the 15th of Feb is when we go to the surgeon for Kenzie's one
year follow up. I hope he thinks her scar looks as good as I
think it does. Oh well, my little breather is over & time to
hit the books again. Hope to hear from you soon. Jennifer P.S. I
think we might have to come up with a new subject for our post
because it is almost completely off the page....any ideas?

[Shelby's Mom - cwright655]

My six month old daughter Shelby has PRS and her craniofacial
surgeon is opting to wait until 15 mos to repair her cleft
palate. She is completely NG tube fed and is scheduled for a G
Tube this month. He is still planning on a trach at 15 mos for
the surgery in case of respitory distress. She is able to lay and
play on her back without choking but feeding is still very
difficult due to her choking and breathing difficulties when
eating. According to her swallow exam she does not aspirate when
she does swallow. I had no idea that early repairs were done on
PRS babies with cleft palates. Any suggestions for pursuing
earlier surgery? We are from Northern California and I am worried
about all of the negative affects of surgery so late. Her ped
does not want her on any oral feedings until her surgery - he
states that it would only confuse her when having to re learn how
to process things in her mouth and swallow. HELP!

[rcherrero@aol.com]

About telling the truth.. I agree with that. I am 34 male. My
parents told that a had a little cut in my lips and they had to
cut to the nose to fix better. They never ever told me that I was
born with cletf lip (only). When I was growing up I used to tell
my friends that I was in a car accident. 1 months ago I went to
talk to my Dr. if I could have the scar revision. He told me that
I had cleft lip surgery before and I said no I never. I went to 3
more Drs. and they all said the same thing. I called my parents
in Brazil and ask them to tell me the truth..and my father told
me everything I was in shock they lied to me all my life. This
march 9 1999 I am going to have a scar revision I am very scared.
So don't lie to your child

[Jennifer]

I just read your message & I also agree with you that it
is very important to tell your children the truth. I wish you the
best with your upcoming surgery. Please let me know how it turns
out Jennifer