Tuesday, March 31, 2009

Cleft Lip and Palate Team Appointment Today

Van, Garrett, and I had our first visit with the Washington DC/Children's Hospital Cleft Lip and Palate Team today. It was an all day event where we circulated between the ENT docs, audiology, dental clinic, plastic surgery, psychology, genetics, and speech and language departments. We had such an incredible introduction to this efficient team of doctors, and truly felt that we are getting the most excellent care for Garrett. They were all outstanding doctors and very thorough. Van and I were very apprehensive about the visit prior to going because we really had no clue what they would have to say. We know that Garrett is doing very well with us, but we just didn't know what they would say he needed medically. Expecting that his needs might be great, we were in for quite a surprise. We were absolutely floored by what they had to tell us. It was ALL good news!
First, Garrett visited with the ENT doctors. He had a build up of ear wax in both ears that had to be cleaned out. He handled this beautifully only crying once. They put him in a papoose of sorts and he couldn't move...a sure sign he is going to fuss because he does not like to be restricted. You would NOT believe the amount of ear wax they pulled out...amazing! Then, they sent him to audiology for the hearing tests. Because he is young, some of the tests they started had to be stopped because he was not yet ready for those developmentally. But basically, we came out of that meeting learning that they believe he has normal hearing and he was only borderline on some of the very soft sounds. But they want him to retest in four months when he is older. No big deal.
Then, we went back to the ENT doctor, Dr. Pena, and she told us that she did not believe that Garrett was a child that would need ear tubes even though that is pretty standard with children with his special need. She said we would wait and watch and see what happens after his hearing is rechecked in four months. He has only had one ear infection since he came home, and our primary care physician wasn't really even positive he had that one because he had so much ear wax in his ears and it was difficult for her to tell. But for Garrett to have this particular special need, one would expect that he would have dealt with untreated ear infections, fluid, etc while living in China for several years, and that he would have some hearing loss because of that, and need the ear tubes...That is not the case. This is truly wonderful news!
Then, we were sent to the dental clinic. The dentist looked in his mouth and told us that he has all of his baby teeth and that one molar is growing in now (that explains his drooling and hands in his mouth all of the time)...Another thing that often is a problem with children with a cleft lip and palate is that their baby teeth are often missing. He has no missing teeth. He does have some mild cavities that need to be watched or filled, and has trouble with soft enamel so we will have to be extra careful with his dental hygiene. The one tooth we were most concerned about is way up in the cleft area of his gumline on his left side. We had been told by another dentist in VA prior to this visit that his root was exposed in this tooth and that the tooth would probably be pulled. The dentist with the cleft team said though that this tooth does have a large cavity, but the tooth is present and that we were not looking at the root of the tooth. So, the first dentist we saw in VA may have been wrong about that. We are going to get a second opinion on that one. She wants us to try to save that tooth just by having it filled. She also wants him to have sealants to protect him from future cavities. She said that he would need eventual surgery between the ages of 7-9 for a bone graft in his gumline, he would need expanders later (he has an underbite), and then braces. No big deal....we knew that would happen eventually. She said he looks great! So, we have a few cavities to fill and some sealants to put on and lots of teeth brushing to do. We can see a pediatric dentist of our choice for that.
Then, we were sent to plastic surgery to Dr. Boyajian. He was so great, and he really liked Garrett a lot. We liked Dr. Boyajian too. He kept saying, "I really like this kid!" He gave us great news too. He says that Garrett's palate is completely closed and that his palate has great mobility which helps him form his sounds when he speaks. He does not recommend any surgery for Garrett until he has his bone graft at around age 7, 8, or 9. He does think at that time, that he should work on opening Garrett's nose a bit more/making it more attractive/ at the same time we do the bone graft. He says that his lip looks "pretty good", and that it would really be up to us if we wanted to have that worked on later as well..though he said he didn't think it could be much better...maybe to make the sides of his top lip more symmetrical...one side is a little lower than the other side. But he warned us that the scar probably would not look any better than it does now there. He even said he was a beautiful child regardless. No surgery!!! We are thrilled and soooo thankful that Garrett does not have to experience any more pain and trauma anytime soon. We were also so happy to hear that there is a great chance that Garrett may not even need speech therapy...Because his palate is completely closed and because his soft palate has great mobility, this doctor thinks he will be able to form his words like he should normally...though there is still a chance that he may need speech like any other kid would. We are in a wait and see mode for that. He listened to Garrett talk, and he thinks he sounds great too when he talks.
Afterwards, we spoke to the genetics doc. She said Garrett does not have any syndromes that could go along with a cleft...Garrett has a unilateral cleft, but it is the bilateral clefts that usually have syndromes associated with them. She said there was no need to order any genetics tests. He looks great in that department.
Then, we saw the psychologist to check on his development and sleeping and patterns and home life. No big issues there other than he does not sleep through the night. She thinks he looks great and can be a resource for us if we need her input on anything.
Lastly, the speech and language team came in, and said we are doing everything we need to do at this point....just exposing Garrett to the language through books, music, games, modeling etc. He says we really should wait to have a speech eval done until next year when he has actually had time to learn some words and is a little older. At this point, he said we really do not have much to evaluate.
We are so happy that we have no current huge surgical worries right now with Garrett. It is a huge blessing! The doctors in China did a fantastic job on his lip and his palate. We know there will be things that come up down the road, but for now, we are all in great shape!
This team of doctors will track Garrett from now until I don't know??? forever...once a year after his next audiology test in four months. We feel so confident that this was the BEST team of doctors to choose for Garrett's care. Van and I were so relieved when we left the hospital today. They were awesome!!!
Just wanted everyone to know the great news!!!! I am walking on a cloud and just feel so incredibly blessed!!! God is sooooooo good to us!!!!

6 comments:

Grace McHugh said...

Praise the Lord. Good news, great news, fabulous news! I am sure you are just overwhelmed with how wonderful everything turned out. Now you concentrate on being a family and loving on your babies. :) WOO HOO!!

epin said...

Wonderful news!

Jodi said...

Praise God! This is wonderful news!!!

Y'all might still think of ECI (Early Childhood Intervention) for speech. Kids 0-3 can qualify for free or nearly free speech therapy, if they are 3-4 months delayed.
We have had ECI for two of our kids and loved it! Unfortunately, Jorja was too old to receive it when she came home. They still don't mind when I call with questions about her though. - Just something you might want to look into!

Looks like our Jailyn and Garrett will be having the bone graph about the same time. Not looking forward to that!

thanks for sharing!
Love y'all!
Jodi Sue :)

Patricia/NYC said...

Fabulous news!!! Yes indeed, God is sooooo GOOD!!!

Cupcakes and Hairbows said...

Hey Van -- Glad things are progressing with Garrett! Sounds like you are figuring it all out. Hey, were in VA do you all (and Loree/Jason and Pam/Robert and you guys) live? Anywhere near hwy 77? We are traveling thru VA on our way to Ohio next week and would love to see some of you all, if it works out! Lucy and Doug

bugs parents said...

Great news! The Lord has truly blessed our travel group with these special children!

Enjoy those two cuties you have! I agree with the doctors - Garrett is certainly very handsome just the way he is - and charming, too!