Wednesday, June 6, 2012

Cleft Team Visit

Friday we drove down to St. Louis Children's Hospital to see the cleft team that Konnor will be working with.  It was definitely a busy day!!  The appointment started at 9 am and ended around 2 pm.  He saw the Plastic Surgeon, Nursing Coordinator, ENT, Audiology, Speech, Child Psychology and the Dentist.  They started by taking several pictures of Konnor and turning them into a 3D model on the computer.  It was really cool to watch.

Here is the basic rundown of what we learned:
-Konnor is going to need 3-4 surgeries in the next year.  The first one will be at the end of June and he will have another one every 3-4 months until his lip and palate are repaired.  The first surgery is called a "setback."  It will be to take the part of his gum that is outside his mouth and reattach it to the gum on the inside of his mouth.  We were really happy with the surgeon.  This surgeon actually trained under the surgeon who invented the most recent and most effective technique for repairing bilateral cleft lip/palate.  Yipppeee!!

-The ENT had to clean out Konnor's ears, b/c they were impacted with wax.  Unfortunately after 4 days on antibiotics he still had pretty significant ear infections in both ears so the ENT called in a second antibiotic for him to start.  It just makes me SOOOOO MAD!!!    I just want to fly back to China and kick that Dr. who told me that his ears were perfectly clear right in the shin!!!

-Audiology said he does have hearing loss , but that the nerve looked ok so it should correct itself after his ears are cleared up and he gets tubes.

-The child Psychologist was able to give us some additional tips on how to deal with his night terrors.  Good news is that the last 5 nights he has slept about 7 hours and had absolutely no night terrors.  WhooooHoooo!!!!! He is still really restless at night, but I think that is due to his ears.

-The Speech Pathologist talked to us about what to expect with his speech and what things we can already start to work on.


I have to say that Konnor did so well during the entire visit.  He hates being in the carseat for more than 20 minutes which led to a long trip home, but overall the day was great.  He is already up 8 oz in weight in a week. They said we were really doing great with feeding him and gave us some pointers to help him drink more.   We got to see another family from our area who came home with their daughter the week that we left to go get Konnor.  I am so happy we have such an extended adoptive community in our area.

He is walking now with only holding onto 1 finger.  He can stand all by himself for about 20 seconds and just yesterday he started to at least try to use his pincher grasp to pick up some food on his tray.  He didn't know what to do with it once he got it, but at least he is trying.  He is still eating mostly baby food mixed with cereal to thicken it, but we are trying him on anything we eat that can be mushed and he does pretty good.  Last night we found that this boy loves meatloaf, mac n cheese and green beans.  And I mean he LOVED the meatloaf : )

It is just so amazing to watch how far he has come in just the 2 weeks we have been home.  Little things like playing peekaboo, patty cake, row row your boat or just giving 5 are all things he has picked up so quickly that just a month ago he knew nothing about.  I can't wait to see where he is in another month!!  We have our first post-placement visit on Friday so wish us luck.

2 comments:

  1. Awesome report!! So exciting! We don't have Hope's cleft appointment till July 12th. You last paragraph in the post reads like my last paragraph in my last post!!! Ha ha ha! So thrilled for you guys and sweet Konnor!!

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  2. So glad things are going so well. Both of my girls have the ear wax issue and needed tubes as well. It helped both of their speech greatly. Isn't amazing how fast they learn once they are with you!!

    Have you thought about contacting your early intervention team in your state to see about going ahead and starting speech?? I waited until Delaney was 2 (she came home at 18 months) but now really regret that I just didn't start it right away. Just something for you to think about??

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