cleft lip and/or palate

[heath-and-javens-mom]

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 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!

 

[luvsmickeymouse]

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]

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

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]

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!

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

 

[luvsmickeymouse]

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]

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!





We were at POP in February 2007 too!

 

[luvsmickeymouse]

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!





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]

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!





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
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 *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.


Have a blessed day!!!

 

[heath-and-javens-mom]

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!

and another before pic- taken at the hospital when he was born

THIS ONE IS A LITTLE GRAPHIC This is right after suergery-maybe a week or so

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

I will post more pics very soon.
Farrah

 

[luvsmickeymouse]

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]

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]

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.

 

[heath-and-javens-mom]

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.

 

[skoi]

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]

This is the original referral photo when ds was first available for adoption (way before we met him):

This is him right after his citizenship ceremony when we adopted him:

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.

 

[skoi]

luvsmickeymouse:

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

 

[heath-and-javens-mom]

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
~Farrah

 

[tarheel618]

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]

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]

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.