cleft lip and/or palate

[luvsmickeymouse]

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]

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,
Kim

 

[heath-and-javens-mom]

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!
~Farrah

 

[luvsmickeymouse]

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]

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]

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~~~ 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!! .

 

[luvsmickeymouse]

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~~~ 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!! .

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

 

[jmb120]

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]

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]

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]

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]

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]

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


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!

 

[macfinn]

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]

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]

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]

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.

This is my youngest son almost done with surgery.

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

 

[stenickar]

"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"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.

 

[luvsmickeymouse]

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]

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