PDA

View Full Version : cleft lip and/or palate


heath-and-javens-mom
05-08-2007, 11:58 AM
I was just wondering if anyone here has a son or daughter (or yourself) that has a cleft lip and/or palate? My 4 year old son had cleft lip and palate and has had 3 baby teeth come in right in the cleft sight. Has anyone else experianced this? Also if you just need to talk about any other cl&p issues I am more than willing to discuss them with you.:thumbsup2
Thanks!

HappyDznyCamper
05-08-2007, 01:42 PM
My DS(11) was born with a unilateral cl&p. He had his lip repair at 9wks and the palate repair at 9 months. A baby tooth finally grew in the repair area when he was about 9 years old, the dentist removed it when he was 10 and some of his other teeth were falling out anyway. When it was removed it had no roots and was starting to decay because of how hard it was to brush. The dentist and orthodontist both agreed to leave it be until it needed to be done.

Tigger&Aidan
05-09-2007, 11:56 AM
My son was born with a unilateral cleft lip. It was repaired at 6 months (he was a preemie, so they had to wait until his face grew enough...). He has a small notch in his gumline but not palate problem. He's 2 now and he has a tooth growing in right where the notch is and it looks like it might be ok. They told us that there was a chance that his gumline would "correct" itself - as in the tooth would pull the gum down. I'm hoping that it's ok and he won't need any kind of gum surgery

luvsmickeymouse
05-26-2007, 09:09 PM
I have two kids born with a cleft lip and palate. My oldest is 19, adopted from Korea, is all done with sugery. My youngest is 17, adopted from The Phillipines, just had surgery on Thursday, it was work on his palate. He has a couple of more surgeries to go, and then he will be finished also. They both have braces on their teeth. They have been through alot, and are doing great.

tarheel618
05-27-2007, 06:00 PM
My daughter will turn 5 in June and was born with a cleft palate no lip involvement. Our main concern right now is speech. Her repair was done at 11 months however she still has some speech difficulties due to a short palate. She will probably have the flap surgery within the next year.

mrsmom
06-13-2007, 01:43 PM
My dd 13 was born with a cleft palete (Pierre robin Syndrome) she has had two palete repairs and is getting ready to have her tonsils taken out next Monday due to her breathing issues cause by a flap put in five years ago.
wow i did't realize there were that many parents on her with clefts babies and kids. hello to all of you .

Kim

luvsmickeymouse
06-15-2007, 12:24 PM
My daughter will turn 5 in June and was born with a cleft palate no lip involvement. Our main concern right now is speech. Her repair was done at 11 months however she still has some speech difficulties due to a short palate. She will probably have the flap surgery within the next year.

My 17 year old is still having issues with speech. He had a difficult repair on the cleft palate. He is going to have extra speech right at the hospital in addition to the speech he has at school.

My older son is 19 and all done with everything except braces on his teeth, he speaks very well.

heath-and-javens-mom
06-15-2007, 01:11 PM
My son is 4 and he has had speech theropy since he was like 6 months old. His speech is very good and we arer sooo thankful for that. He will continue to have speech Im sure because there are a few things he has trouble pronouncing.
He will be going for a lip revision and a nose repair(?)-its to fix the slant on the cleft side, next summer. then i am not sure what the next steps will be. have any of you had the lip revision? did you see a difference-Im kinda scared cause I think it looks preety good now (the scar). Also what about this nose revision? anyone familiar with that?

I have an idea to get this thread going, maybe we all could start posting pictures of our children with cleft lip and palates?

http://image.blingee.com/images11/content/output/2007/6/15/202705264_d0c506bf.gif (http://blingee.com/blingee/view/11933335-a)
Build your own Blingee (http://blingee.com)This is a current pic of my son

http://image.blingee.com/images11/content/output/2007/6/15/202716097_06448b92.gif (http://blingee.com/blingee/view/11933978-a)
Personalized Glitter Graphics (http://blingee.com) This was right after the lip repair...he was 3 months old

luvsmickeymouse
06-15-2007, 05:17 PM
My son is 4 and he has had speech theropy since he was like 6 months old. His speech is very good and we arer sooo thankful for that. He will continue to have speech Im sure because there are a few things he has trouble pronouncing.
He will be going for a lip revision and a nose repair(?)-its to fix the slant on the cleft side, next summer. then i am not sure what the next steps will be. have any of you had the lip revision? did you see a difference-Im kinda scared cause I think it looks preety good now (the scar). Also what about this nose revision? anyone familiar with that?

I have an idea to get this thread going, maybe we all could start posting pictures of our children with cleft lip and palates?

http://image.blingee.com/images11/content/output/2007/6/15/202705264_d0c506bf.gif (http://blingee.com/blingee/view/11933335-a)
Build your own Blingee (http://blingee.com)This is a current pic of my son

http://image.blingee.com/images11/content/output/2007/6/15/202716097_06448b92.gif (http://blingee.com/blingee/view/11933978-a)
Personalized Glitter Graphics (http://blingee.com) This was right after the lip repair...he was 3 months old

My oldest son is all done with surgery, he had his final lip revision 2 years ago, it is amazing. Ill try and put some pictures up. I don't have a scanner so I can't put any older ones to compare with but i will post a picture of him. My younger son needs maybe just one more surgery.

GroovyWheeler
06-15-2007, 09:00 PM
I had a cleft palate. I can't remember how it was fixed, but I do know that I was in speech therapy for all 12 years (K-12th grade) of school. I couldn't make the "S" sound, or pronounce a few words correctly.

Samantha

hairdresserchick
07-22-2007, 04:29 PM
Hi y'all. I was excited to see this thread. In January, We adopted a 3.5 year old boy from China. He has repaired cleft lip and palate. We have no record of how many or what kinds of surgeries he's had or photos of what he looked like before. His cleft surgeon here said he had a unilateral cleft. He will need a surgery in a couple of years to repair his gum and they think that will lift his nose some. We're very new to this and have no idea what to expect. Our Dr. doesn't think right now he will have many surgeries in his future. Nice to meet you all!!!


http://i50.photobucket.com/albums/f312/silly1991/DSCF1089.jpg

heath-and-javens-mom
07-22-2007, 05:11 PM
Hi y'all. I was excited to see this thread. In January, We adopted a 3.5 year old boy from China. He has repaired cleft lip and palate. We have no record of how many or what kinds of surgeries he's had or photos of what he looked like before. His cleft surgeon here said he had a unilateral cleft. He will need a surgery in a couple of years to repair his gum and they think that will lift his nose some. We're very new to this and have no idea what to expect. Our Dr. doesn't think right now he will have many surgeries in his future. Nice to meet you all!!!


http://i50.photobucket.com/albums/f312/silly1991/DSCF1089.jpg

Hi, so nice to meet you! What a cuttie he is! My son had a unilateral cleft and bilateral palate-was your sons palate effected? I will post a before pic of my son soon. I know of a wonderful web site if you dont already know it....it is widesmiles DOT com.
This thread is kinda slow but we can still keep it going:goodvibes Thanks for joining! Talk to you soon!

tarheel618
07-25-2007, 07:15 PM
What can you tell me about Pharyngeal flap surgery? How did it improve your childs speech? Any information will be greatly appreciated!

THanks

Worried parents here

Tigger&Aidan
07-30-2007, 02:55 PM
DS only has a cleft lip, but I thought i'd direct you to another site - cleftadvocate.org or babycenter.com's babies with birth defect board.
HTH!

luvsmickeymouse
07-30-2007, 05:44 PM
Another good site is widesmiles.org

heath-and-javens-mom
07-30-2007, 07:31 PM
Another good site is widesmiles.org

That is the site I ment to mention in my last post--I put . com instead of .org--sorry :)

Microcell
07-30-2007, 08:07 PM
My sister has both cleft lip and palate and it is interesting to me to find out about the speech problems...

She is deaf too, so you can't tell what is what with her speech.

luvsmickeymouse
07-30-2007, 09:26 PM
My youngest son has had alot of work done on his palate, the surgeon has tried a few different things to make him speak better, he is doing good. Both of my kids are adopted and both have cleft lip and palate. They didn't have any surgery prior to coming home, so they had a late start with the repairs. My oldest is all done with surgery except for braces on his teeth. My youngest just had his wisdom teeth out, so that was another trip to the operating room. These kids tolerate so much , don't they.

heath-and-javens-mom
08-09-2007, 10:33 PM
The thread is dying! OH NO! We cant let that happen! BUMPING!!:goodvibes

luvsmickeymouse
08-10-2007, 05:40 PM
Here are my kids! My oldest was born in Korea, he is all done with surgery, starting his 3rd year of college.


http://i136.photobucket.com/albums/q163/luvspilots/n74401737_30339871_935.jpg

Here is my youngest son, born in The Phillipines, is a senior in HS, has 1 more surgery, maybe 2.

http://i136.photobucket.com/albums/q163/luvspilots/m_5715f6c7fa1dc2a59b07cccc1678b0f4.jpg

heath-and-javens-mom
08-10-2007, 06:09 PM
Thanks for posting! I wish the pic of your oldest was a little bigger-Its kindof hard to see. they noth look good and Very happy:goodvibes I will try to post some more before and after pics of Javen. Im so glad we have this thread to share pictures and conversations about our special children!:goodvibes

luvsmickeymouse
08-10-2007, 08:58 PM
http://i136.photobucket.com/albums/q163/luvspilots/fuzz005.jpg

Here is another one of my youngest son. This picture was taken last week at the hospital, he had a checkup. He had such a rough start, when he came home from the Phillipines, he weighed 10lbs! That was at a year old! He hadn't had any surgery until after he was home for a few months.

heath-and-javens-mom
08-10-2007, 10:51 PM
http://i136.photobucket.com/albums/q163/luvspilots/fuzz005.jpg

Here is another one of my youngest son. This picture was taken last week at the hospital, he had a checkup. He had such a rough start, when he came home from the Phillipines, he weighed 10lbs! That was at a year old! He hadn't had any surgery until after he was home for a few months.

WOW! 10 Pounds at a year old?!?!?! He looks wonderful! How do they deal with there cleft lip[ issues? Do they still get upset about it? I just wonder because as you know My son is only 4, and It hasnt started yet but Im sure the "why did it happen to me" questions and feelings will probably come once he starts school. I just worry about how this will affect him emationally in the future. Some kids can be so cruel...I wish there was something I could do to protect him from teasing....but I know I cant:sad2:

BTW I think you are a amazing person for doing what you do! I was scared enough to take this on unwillingly and here you did it twice.. willingly! I definitly admire you! TY for loving those 2 babies!

heath-and-javens-mom
08-10-2007, 11:05 PM
Here are a couple more close ups of Javen NOW...I am still trying to locate some BEFORE pics. I am using my new laptop and not all my old pics were uploaded on it- But i will post them as soon as they become avaliable!:goodvibes
http://i208.photobucket.com/albums/bb181/farrfoo/javeupclose.jpg
http://i208.photobucket.com/albums/bb181/farrfoo/100_1210.jpg

These were both taken within the last couple weeks. Like I said, he will be getting a lip and nose revision next summer.

luvsmickeymouse
08-11-2007, 11:48 AM
He looks GREAT! So does that pool! LOL ! He looks so good in that pool. He looks like he is doing well!

The biggest thing I have encountered are kids picking on my youngest son because of his speech. It breaks your heart how mean some kids can be. He had such a rough start and alot of delays. He is doing well now. As far as anything else, I know they tolerate alot with all the surgery they have had. I know they don't like going to the hospital but as far as "why me" hasn't been an issue. The adoption issues haven't come up much either.

clemsondisneyfan
08-27-2007, 01:52 PM
Our soon to be 12 year old son has a cleft palate - that was not diagnosed until he was 8 years old!! His lip is fine, but he has a large "hole" in his mouth that is just covered with skin. He also has a bi-fed uvula (I am sure I spelled that wrong!) B/c he was diagnosed so late in life and had already had 4 years of speech therapy, they said it would be devastating to have him go through the palate repair surgery. They said he would need speech for years and would have to learn how to swallow, chew, sing, etc. again. Most people know at birth and the kids can have the surgery way before they learn to talk.

So, he will live with it for life I guess. He cannot smell, does have an extra tooth they are getting ready to take out, gets really bad sinus infections and still doesn't like foods with hard or chewy textures. Other than that, you would not know there was a problem. He used to have really bad bouts of tonsilitus....but seemed to outgrow that about a year or so ago.

Thanks for starting the thread!


http://tickers.TickerFactory.com/ezt/d/4;31;405/st/20070915/e/8+days+at+CSR/k/c134/event.png
(http://www.TickerFactory.com/)

We were at POP in February 2007 too!

luvsmickeymouse
09-01-2007, 01:30 PM
Our soon to be 12 year old son has a cleft palate - that was not diagnosed until he was 8 years old!! His lip is fine, but he has a large "hole" in his mouth that is just covered with skin. He also has a bi-fed uvula (I am sure I spelled that wrong!) B/c he was diagnosed so late in life and had already had 4 years of speech therapy, they said it would be devastating to have him go through the palate repair surgery. They said he would need speech for years and would have to learn how to swallow, chew, sing, etc. again. Most people know at birth and the kids can have the surgery way before they learn to talk.

So, he will live with it for life I guess. He cannot smell, does have an extra tooth they are getting ready to take out, gets really bad sinus infections and still doesn't like foods with hard or chewy textures. Other than that, you would not know there was a problem. He used to have really bad bouts of tonsilitus....but seemed to outgrow that about a year or so ago.

Thanks for starting the thread!


http://tickers.TickerFactory.com/ezt/d/4;31;405/st/20070915/e/8+days+at+CSR/k/c134/event.png
(http://www.TickerFactory.com/)

We were at POP in February 2007 too!

Wow! I am glad he is doing well! What a surprise that must have been. I hope this thread keeps going. We are near the end of surgery. Both of my kids will need a tooth implant at some point. They still have braces on their teeth.

heath-and-javens-mom
09-07-2007, 05:41 PM
Our soon to be 12 year old son has a cleft palate - that was not diagnosed until he was 8 years old!! His lip is fine, but he has a large "hole" in his mouth that is just covered with skin. He also has a bi-fed uvula (I am sure I spelled that wrong!) B/c he was diagnosed so late in life and had already had 4 years of speech therapy, they said it would be devastating to have him go through the palate repair surgery. They said he would need speech for years and would have to learn how to swallow, chew, sing, etc. again. Most people know at birth and the kids can have the surgery way before they learn to talk.

So, he will live with it for life I guess. He cannot smell, does have an extra tooth they are getting ready to take out, gets really bad sinus infections and still doesn't like foods with hard or chewy textures. Other than that, you would not know there was a problem. He used to have really bad bouts of tonsilitus....but seemed to outgrow that about a year or so ago.

Thanks for starting the thread!


http://tickers.TickerFactory.com/ezt/d/4;31;405/st/20070915/e/8+days+at+CSR/k/c134/event.png
(http://www.TickerFactory.com/)

We were at POP in February 2007 too!

Sorry I have been so very busy latley and havent posted on this thread for ahile.

First of all:welcome:
I would have to agree that surgery now on his palate may cause more harm than good. I too have had some tonsil issues with Javen..his are extreamly large, he has had a sleep study done and it came back fine so The team suggested that we do not remove them because it would only cause speech problems....No tonsilitis yet though:thumbsup2 *keeping fingers crossed that that doesnt start happening* :)

I hope you stick around on this thread...its kinda slow, but always good to know there are people on here we can talk to expecially if things get rough. Come this summer I will be on here searching for support because Javen has to have sugery again-1st one in over 2 years.:sad1:


Have a blessed day!!!

heath-and-javens-mom
09-07-2007, 05:48 PM
Okay I know I promised pics a while back but I have none on this comp so I had to take pictures of the pics I have around the house so they are very poor quality-sorry...here they are anyway

Here is Javen before any surgery was done--I think he is adoreable!:thumbsup2
http://i208.photobucket.com/albums/bb181/farrfoo/100_1966.jpg

and another before pic- taken at the hospital when he was born
http://i208.photobucket.com/albums/bb181/farrfoo/100_1965.jpg

THIS ONE IS A LITTLE GRAPHIC This is right after suergery-maybe a week or so
http://i208.photobucket.com/albums/bb181/farrfoo/javen.jpg

And this one was RIGHT after he was realesed from the hospital--we were on our way home from the childrens hospital- he looks mad at me doesnt he
http://i208.photobucket.com/albums/bb181/farrfoo/lipsurgery03.jpg

I will post more pics very soon.
Farrah

luvsmickeymouse
09-07-2007, 09:55 PM
Those pictures are great! I am getting a scanner soon, so I will post some of mine. I am going to try and take a couple of pictures of some of the pictures i have of my kids. Both of my kids came home from overseas at 1 year old each, and they had a late start on surgery. They started surgery at 15 months old.

heath-and-javens-mom
03-11-2008, 03:36 PM
I know not many read this thread, but to those of you who do I wanted to let you know that Javen will be going up to Indianapolis on March 24th to see the team of doctors and set a date for his lip and nose revision-- I am soo scared...This is the first surgery we have to talk to him about--for the other 3 he was so young..he had no idea.......This is much worse. I have mentioned it to him and he freaks out--any suggestions?

SueM in MN
03-12-2008, 12:02 AM
I had forgotten about this thread.
Ironically, just before reading this, I was looking at my alumni magazine, which mentioned the University is trying to raise money to endow a professorship named for Florence Blake. She was one of the pioneers in changing the way children were treated in hospitals - introducing the ideas that children in hospitals deserve comforting, nuturing and family-centered care (before that, parents were often allowed in the hospital only during short visiting hours).
Anyway, that made me think of play therapy. A lot of children's hospitals use play therapists to help children deal with stressful things - like surgery - thru play. The therapist uses toys and playing with real things, like dressings, equipment, etc to help the child express and handle their feelings. If your son will be going to a children's hospital, they probably have play therapists who can work with your son. You could try calling the hospital/doctor's group to see if they have any suggestions.
:hug:

heath-and-javens-mom
03-12-2008, 11:18 AM
Thank you so much for your suggestion- that sounds Like a wonderful idea. I think I will give the childrens hospital a call and see if they offer something of that sort- I am just totally lost this time cause I know he will be so upset with me for putting him thru all this, he is not old enough to relize that I am just trying to do whats best for him.:sad1:

skoi
03-14-2008, 12:38 PM
We adopted two children with cleft. Our daughter had a unilateral cleft lip and gum. No teeth coming on.

Our newly adopted son had a very severe cleft- all the way up through the nose and back. His lip and palate were repaired (apparently not a good job, acccording to or team here), and he has a cleft gum and a fistula behind his nose which might not be able to be repaired due to scarring and weak tissue. He's finally starting to try to talk, and we're waiting for a speech and development evaluation. He does have teeth growing in the cleft area.

I might take OP up on the offer to discuss cleft. Our dd had no issues, really, but our ds! Wow. It's going to be a lot harder.

Julie

skoi
03-14-2008, 01:01 PM
This is the original referral photo when ds was first available for adoption (way before we met him):

http://i78.photobucket.com/albums/j108/skoi13/babyzhijie2-1.jpg

This is him right after his citizenship ceremony when we adopted him:
http://i78.photobucket.com/albums/j108/skoi13/IMG_1356-1.jpg

And this is our daughter about 6 months after she came home, at a little over two. We don't have any pictures of her before her surgery.

http://i78.photobucket.com/albums/j108/skoi13/128_2846-1.jpg

skoi
03-14-2008, 01:04 PM
luvsmickeymouse:

Your younger son is very handsome. The beard looks great.

heath-and-javens-mom
03-14-2008, 01:25 PM
skoi- I admire you for adopting those beautiful children! They both look GREAT! It is definitly a test of strength and a learning process but the kids are sooo worth it!
If you ever need to chat you can feel free to PM me:goodvibes
~Farrah

tarheel618
03-14-2008, 08:18 PM
I know not many read this thread, but to those of you who do I wanted to let you know that Javen will be going up to Indianapolis on March 24th to see the team of doctors and set a date for his lip and nose revision-- I am soo scared...This is the first surgery we have to talk to him about--for the other 3 he was so young..he had no idea.......This is much worse. I have mentioned it to him and he freaks out--any suggestions?

My daughter 5 just had a flap done over Christmas break. Our hospital offered a children's tour of the operating rooms and hosptial rooms and such to help explain the unknown to her. We talked to her about the surgery for about 6 months before hand. She was really brave. I hope everything goes well for you.

skoi
03-15-2008, 03:44 PM
We look at it like we were lucky to be able to adopt them. I sometimes think about more, but on one income, that's out of the question. Fortunately, we have good insurance.

luvsmickeymouse
03-19-2008, 10:38 AM
luvsmickeymouse:

Your younger son is very handsome. The beard looks great.

Thank you! He is seeing our team of Dr.'s on April 8, he may need one more surgery.

luvsmickeymouse
03-19-2008, 10:40 AM
We look at it like we were lucky to be able to adopt them. I sometimes think about more, but on one income, that's out of the question. Fortunately, we have good insurance.

I agree!


Very cute kids! They look great!

As soon as I can get a scanner, I will put up some pics of my kids before surgery.

mrsmom
03-20-2008, 03:40 PM
my dd almost 14 years old that just had a cleft palete just found out that she has to have the pharyngeal flap they put in 5 yrs ago taken down and aother palete surgery done. It doesn't get any easier as they get older telling them more surgeries. But they have people at the hospitals to talk to them and make then feel more comfortable about it. My dd went to Riley's hospital when we lived near Indy but now goes to Cincinnati childrens. So talk to the team about it when you see them. Please keep us updated,:hug:
Kim

heath-and-javens-mom
03-20-2008, 06:45 PM
Thank you Kim, I will keep your DD in my prayers!
We are heading over to Riley on Monday and I will discuss things I can do to help comfort Javen as he prepares for his upcoming surgery.
Thanks to all of you that have posted suggestions on here...I just really wanted to talk to people that could relate.

THANK YOU!:goodvibes
~Farrah

luvsmickeymouse
03-20-2008, 08:53 PM
I think what I used to do with my kids was not to over react when it was time for surgery, just mention it was time to have more surgery. I would be so worried and the night before we had to go, they would sleep and I would be up all night.

Our hospital lets a parent into the operating room until the child falls asleep. I always went in with which ever son was having surgery. You get to give them a hug and kiss as they fall asleep. My kids always thought I was there the entire time.

heath-and-javens-mom
03-21-2008, 11:00 PM
awww- that would be nice, However I think our hospital does not allow parents to go back, they give the kids a sleepy medicine in the pre op room and then they just come and take the children from you----kinda sad really, I may ask if I can go back untill he falls asleep this time since he is older.

heath-and-javens-mom
03-24-2008, 07:24 PM
GOOD NEWS!
We went and seen the team today and they decided against surgery this year-- They said there is no point, that Javens scar and nose looks wondeful (I thought that anyway!) and that there is no need for it right now!! His speech is GREAT-- right where they want him, and audiology said he is doing great aswell~~~:cool1: Overall we had a great day!! Wont have to worry about surgery untill next summer. He may need another bone graft where the cleft was in his gum, during next surgery- Did I mention it wont be untill NEXT YEAR!!:banana: :banana: :woohoo: :woohoo: :woohoo: .

luvsmickeymouse
03-26-2008, 07:17 PM
GOOD NEWS!
We went and seen the team today and they decided against surgery this year-- They said there is no point, that Javens scar and nose looks wondeful (I thought that anyway!) and that there is no need for it right now!! His speech is GREAT-- right where they want him, and audiology said he is doing great aswell~~~:cool1: Overall we had a great day!! Wont have to worry about surgery untill next summer. He may need another bone graft where the cleft was in his gum, during next surgery- Did I mention it wont be untill NEXT YEAR!!:banana: :banana: :woohoo: :woohoo: :woohoo: .

Great news! We are going to our team on April 8th.

jmb120
03-26-2008, 07:46 PM
Wow, I just read this entire thread and I had no idea there were so many other people dealing with cleft issues with their children. My son Tyler had a unilateral cleft lip and palate. His lip was repaired at 3mo and palate repaired in 2 stages one at 9 months and one at 13 months. He is now 3 years old and just has flap surgery last Thursday. His speech is really difficult to understand, I haven't noticed much difference since his flap surgery, but it was less than a week ago. He has been seeing a speech therapist since 9mo and she was so happy that he had the flap surgery because he really needed to to speak correctly (his palate was very short and didn't move).

skoi
03-27-2008, 07:39 AM
We're still waiting on a speech evaluation (and overall developmental evaluation due to ds living his first 3 1/2 years in an orphanage). In our city, it takes months to get it done.

Our cleft team said the palate repair isn't very good, and he has a lot of damaged tissue so they might not try to fix the fistula behind his nose unless it greatly impacts his speech. Hopefully we'll be able to get started with therapy soon.

Julie

macfinn
03-27-2008, 04:31 PM
I just wanted to send a quick post for all the familes going through cleft lip/palate issues, and to share my experience. I am 34 year old born with both a small lip and severe palate. Over my life I have had 9 surgerys to correct both. I have had countless ear tube placement and most recently had a toncelctomy and nasal reconstruction done in 2003. The only lasting effect I had was countless sinus problems that were cleared up with the latest surgery. I guess the point I am trying to make is no one can tell now that I ever had anything wrong unless they look close enough.My top lip is thin due to drs retracting in surgery. It really just looks like I have a small top lip!!!!

I recently just had two sons. The doctors were concerened that this would be passed on. I was less concerened. Of all the things that could be wrong, all though I would have been heartbroken for them, we could live with this.
They were both born cleft free. They were both extremely premature, so we thank god they did not have anything else to deal with.

Please contact me if any of you have questions. I would love to help.
Christa

skoi
03-27-2008, 04:45 PM
Thanks for sharing your story, Christa. Our first child was so easy- she just had cleft lip with some gum involvement. Our son is a far more severe case, but hearing all these success stories is very heartening.

Anyone have suggestions for easy signing instruction? This was suggested to us by the team's speech therapist while we wait for speech evaluation
Julie

macfinn
03-27-2008, 05:18 PM
Julie,
My oldest son has a severe communication disorder. I was reluctant to use sign at first. I wanted him to speak not to sign. At the age of three his fustration was getting so bad because he could not communicate. I gave in and started to sign. The difference was amazing. We used a program that we purchased through a online site. I cannot remember the name, but will ask his speech therapist the next time I see her and will let you know.

I was just wondering, because we have started to research expanding are family though adoption. After struggling with infirtility and then premature birth I am done carrying babies but do not feel as though my family is complete. Did your family set out to adopt a child with a special need? I would love to go that route and would love to hear any stories from anyone who has.
Christa

heath-and-javens-mom
03-27-2008, 05:34 PM
Thank you Christa for sharing your story with all of us. I have had doubts about having another child because we are scared that they may be cleft affected....although There are many other things that can go wrong with pregnancy this still is a concern for us, and probably always will be. Its nice to know that your kids were NOT cleft affected. I may PM you in the future with questions if you dont mind:grouphug:


Here are some recent pics of Javen - the close up shot was taken at the check up the other day- the photograper takes pis at each visit, the others were a few nites earlier at a monster truck show-- had to show off his mohawk LOL!

http://i273.photobucket.com/albums/jj233/farrfoo1723/SelphJaven2004071214270075620080324.jpg

http://i273.photobucket.com/albums/jj233/farrfoo1723/DSCF5174-1.jpg

http://i273.photobucket.com/albums/jj233/farrfoo1723/DSCF5224.jpg

macfinn
03-27-2008, 06:44 PM
Javins lip looks awesome. His scar is so light already for his age. Please pm with any questions you might have. I think the most important piece of advise I could give is to stay on top of the ear,hearing and sinus issues. This has been a problem that seems to get worse as I get older. I think alot whet untaken care of because so much energy is spent on cosmetic issues.
Christ

skoi
03-27-2008, 07:43 PM
I was just wondering, because we have started to research expanding are family though adoption. After struggling with infirtility and then premature birth I am done carrying babies but do not feel as though my family is complete. Did your family set out to adopt a child with a special need? I would love to go that route and would love to hear any stories from anyone who has.
Christa

I'd be glad to share information. We had a great experience with our last agency that works in the US and several other countries. They do a lot of special needs adoptions. We did set out with both to adopt special needs. Our second we were specifically looking for a little boy. PM or email if you want the name our agency, or have any specific questions.
Julie

stenickar
03-27-2008, 07:53 PM
Anyone have suggestions for easy signing instruction? This was suggested to us by the team's speech therapist while we wait for speech evaluation
Julie[/QUOTE]

I also have a cleft lip and palate. It is funny I came across this thread today,Monday I was at the dentist. I saw a different dentist than usual.She said "boy you have a deep palate." Then a couple of minutes later she said "Do you have a cleft palate"? I would have thought she would have known by looking at my lip, guess it doesn't show as much as I thought;)

I have 2 kids with autism. When my son was young we started with PECs
(Picture exchange communication system). Studies have shown that kids who use PECs actually learn to talk quicker than kids who haven't used them. The nice thing about PECs is that anyone can tell what your child wants. It has a picture and the word on it, so anyone could help him. You may want to ask your speech person about PECs. HTH:)

luvsmickeymouse
03-27-2008, 08:14 PM
Wow, I just read this entire thread and I had no idea there were so many other people dealing with cleft issues with their children. My son Tyler had a unilateral cleft lip and palate. His lip was repaired at 3mo and palate repaired in 2 stages one at 9 months and one at 13 months. He is now 3 years old and just has flap surgery last Thursday. His speech is really difficult to understand, I haven't noticed much difference since his flap surgery, but it was less than a week ago. He has been seeing a speech therapist since 9mo and she was so happy that he had the flap surgery because he really needed to to speak correctly (his palate was very short and didn't move).

This is the issue my youngest son has, he has speech therapy at school, and at the hospital as well. Every other week I drive 90 minutes to the hospital for speech, he gets a full hour plus what he has at school. I found the public school speech therapy just wasn't working. He is 18 and we just went for speech at the hospital again today.

My oldest son is all done with surgery. He speaks very well.

My project now is getting their teeth finished up with braces. It has been so hard to get my oldest to the orthodontist cause of college.

My youngest will be starting college in the fall, and will run into the same problem.
http://i136.photobucket.com/albums/q163/luvspilots/thdigital066.jpg
This is my youngest son almost done with surgery.

http://i136.photobucket.com/albums/q163/luvspilots/digital019.jpg

This is my oldest son. He is all done with surgery.

stenickar
03-27-2008, 08:14 PM
"It hasnt started yet but Im sure the "why did it happen to me" questions and feelings will probably come once he starts school. I just worry about how this will affect him emationally in the future. Some kids can be so cruel...I wish there was something I could do to protect him from teasing....but I know I cant:sad2:"quote

I think the best thing that you can do is give your son all the information you can about his cleft. Do others in your family have a cleft? Also when you go to widesmiles they have a list of famous people that have clefts. I really feel that when kids have information about their differences and can tell others about their specific difference, it helps both kids. Also if you can talk about how everyone is different from hair color, the kind of car they drive, what they like to eat etc... your child will realize everyone is different. HTH

I am 44 so information when I was young was scarce. My cleft is not hereditary, just a fluke :) . I have 3 sisters and a brother and no one else has one. I am glad that most of you have baby pictures of your kids. That was one thing that always bothered me, no pictures of me until I was about a year old. :sad2:

luvsmickeymouse
03-27-2008, 08:16 PM
That mohawk is AWESOME! I am glad to see I am not the only mom that lets things like this happen. LOL! I love to see someone that isn't afraid to be who they want to be.

skoi
03-27-2008, 09:35 PM
That mohawk is AWESOME! I am glad to see I am not the only mom that lets things like this happen. LOL! I love to see someone that isn't afraid to be who they want to be.

No- us too. Biggest dd wants purple stripes in her hair. The only restriction was we had to wait until we got back from China, because who knows what they'd think of a family who let their daughter have purple hair, and how that would affect our adoption. And I don't want her to start bleaching yet. My hair was so fried from stripping out my color to redye it.

Of course dh and I have had mohawks, and my hair has been on occasion blue black, blue, green (ick), purple, orange, and for Easter a few years pink, turquoise, purple, and lime green, for Christmas red, green and gold, etc. I'm just too old to pull it off now.

Julie

skoi
03-27-2008, 09:38 PM
I have 2 kids with autism. When my son was young we started with PECs
(Picture exchange communication system). Studies have shown that kids who use PECs actually learn to talk quicker than kids who haven't used them. The nice thing about PECs is that anyone can tell what your child wants. It has a picture and the word on it, so anyone could help him. You may want to ask your speech person about PECs. HTH:)

My husband is a social worker with adults who are developmentally delayed, used to work with kids, and when I asked him about this, he's like, "oh yeah, I've seen those. Don't know why I didn't think of that before." :faint:

Thanks for the info. I'll look into it.

Julie

mrsmom
03-28-2008, 01:40 PM
GOOD NEWS!
We went and seen the team today and they decided against surgery this year-- They said there is no point, that Javens scar and nose looks wondeful (I thought that anyway!) and that there is no need for it right now!! His speech is GREAT-- right where they want him, and audiology said he is doing great aswell~~~:cool1: Overall we had a great day!! Wont have to worry about surgery untill next summer. He may need another bone graft where the cleft was in his gum, during next surgery- Did I mention it wont be untill NEXT YEAR!!:banana: :banana: :woohoo: :woohoo: :woohoo: .

I am so happy for you guys!!! The picyures of the mohawk are so cute!!
Kim

tarheel618
03-28-2008, 07:30 PM
Hi guys. I just wanted to let you know that I got a call from our clinic asking us to write and call our local senators and congressman.

In the state of Florida it has been proposed to cut funding to some of the clinics. You may want to check out your states funding.

I don't understand why they want to take away funding from children with medical issues. Surely they can find other ways to cut money.

luvsmickeymouse
04-09-2008, 07:45 PM
My youngest son had his team check up yeaterday! We are done with surgery! :goodvibes

We still have orthodonticts and speech.

We didn't get home until 8:30 last night. :eek:

skoi
04-12-2008, 12:52 PM
Ds had an audiogram and they found out due to fluid in his ears, he can barely hear. So he's getting ear tubes this week. The squeezed in his surgery before dh is deployed to Afghanistan, and we're grateful for that.

Hopefully we'll see some improvement in speech.

luvsmickeymouse: Glad to hear there are no more surgeries for your son.

Julie

Tigger&Aidan
04-28-2008, 11:16 AM
My DS is having a Lip Revision next tuesday - anyone ever dealt with this? It's outpatient, so I'm hoping it won't be too bad. Any advice? I'm sure he'll be fine, but I'm anxious and worried! This is our 4th surgery (2nd for his lip, other 2 were for his belly) and the first where he is old enough to know what's going on..... :scared:

DS before surgery
http://i22.photobucket.com/albums/b350/aidanjames1229/lip.jpg

and recently
http://i22.photobucket.com/albums/b350/aidanjames1229/lip2.jpg