handsful

This is one of Lainey’s favorite things…her dad’s NC State pillow. She hugs it and cuddles with it and even drools on it. I know this picture will make most of her NC family very happy!

Lainey had her first cleft palate clinic appt today. We left the house at 7:20am, arrived at 8:20 and left at 12:15. Long day! They ushered us into an exam room and then the specialists started arriving, one by one. She was seen by the nurse coordinator, medical photographer, pediatrician, psychologist, speech pathologist, audiologist, 2 ENTs, 2 plastic surgeons, social worker, family resource rep, and a medical resident.

According to the two plastic surgeons we saw today, she has a moderately sized cleft…on a scale of 1-10, it’s a 6 or 7. The first priority is correcting the cleft and other surgeries such as nose and lip revision will be done sometime in the future. They think her lip correction done in China was “okay”…they say they would have done it differently, but also say that they can “tweak” it (and her nose) to make it look great.

Someone LOVES her little sister…

As far as her palate, it will take 1-2 surgeries to close it, they’ll know better once they get in there. She should have surgery within the next 2-3 months. It’ll be overnight and she’ll have to wear arm guards called “no-nos” that keep her arms from bending at the elbow (and, therefore keep her fingers out of her mouth) for 3 weeks. Yikes.

They also found fluid in both ears, which they say could have been there for some time. It’s not infected, but it needs to be drained so there is no damage to her hearing. So, they want her to have tubes put in her ears. They should be able to do this the same day as the palate surgery.

They want us to wean her from the bottle, because she won’t be able to use one after her surgery. We’ll do that slowly, because we know that bottle feeding promotes attachment and that is most important right now. We’re also going to be contacting a speech therapist that specializes in cleft kids, to help her with her lip strength as well as begin work on her communication. We’ve already taught her two signs “more” and “water” and she catches on really quickly.

Lainey also had her appt. with the infectious disease specialist yesterday to discuss her positive TB test. Her chest x-ray was clear, so her TB is completely dormant and not contagious. She began her isoniazid treatment tonight, and once she completes the 9 months of this, the doctors said that she’ll be fine. No need for any followup. She will always test positive for TB, but the treatment will ensure that it never becomes active.

We feel very good about our appointment today, and though we’re a little anxious about all that is to come, we know that it’ll all be fine in the end. We feel more and more blessed everyday that this little one is ours…I’ll quote Chris Rice: Life gave me lemonade and I can’t imagine why. God is good.