We found out yesterday we were scheduled for 8:30am appts with our cleft team...2.5 hours away. Yes...we are that family. We booked it months ago because we have to in order to get in. So we woke everyone at 5:30 ish and pulled away close to 6. With me popping meds (that are working less than as I anticipated :( and grabbing a peppermint mocha to calm my very iffy stomach...we were on our way. The kids never made much of a peep til the sun came up. They were all awake and a little stunned with being awake so early ;)
We arrived right on time, changed Taizi and Zihao and went in. Our first stop was our plastic surgeon/ear reconstruction specialist. First was Azlan. He said there's definite inflammation around his BAHA surgery site and intense scarring and complete lack of hair growth exactly where he was shaven for surgery. Sigh. He's still on oral antibiotics as per infectious disease...and it's doing...I'm not sure what. Just holding something at bay? This was done in April. Here we are in December. Ahhh. And no we don't have his Baha. Oh...emotional subject :(
Then Zihao. He was very surprised that his ear tags are on his non cleft- side ear. And his cleft side ear is much smaller and I honestly had not seen that. When he pointed it out...how did we miss it. He thinks significant deafness in his right side (cleft) and likely hearing loss in his left b/c the ear tags indicate that.
Then Taizi. He helped quite a bit. He said the sore that refuses to stop oozing since gotcha day on his ear (!!!) has a name. He was born with it and now it's infected. And has a cyst down inside. He said that it has a track that would go all the way to his ear canal and has to be surgically removed. Oh. He said his ear canals are very small and he couldn't see much but they are full of fluid. He noticed his eye right aways and how it is shaped differently and doesn't blink. He added it's unlikely he has much vision out of there at all but wants him to see a specialist. Uh huh.
Then Speech. Well that was non existent with Z and T but for Azlan there was significant progress since last time...and all that is from me working with him. I pulled him out of speech therapy quite a while ago b/c she was using no visuals, playing tons of games and really giving him 10 minutes of speech ... none of which were things I was not doing myself. Hear my frustration? Drive 20 minutes across town...go in for 30 minutes..10 minutes of therapy, lots of bubbles and games. 20 minutes drive home. Ahhhh!!! Therapy told me it would be years before he got the "F" and "P" sound. Well guess what? Perfect "F" and "P" sounds....when slowed down and prompted. Very exciting!
Then orthodontia ... Azlan was worse case here too :) His are significantly more severe than the others ... they said his bottom jaw is growing at normal speed and his top is not. So it's getting worse and worse and the underbite more and more severe. (making sounds like F - where the top has to go over the bottom jaw much more difficult). They said he will need braces at least 2x and confirmed major jaw surgery as a teenager for that upper jaw. They said "we really hope he loves the dentist"...yah. Me too :(
Then ENT and Audiology.
Azlan-same as always.
Taizi-nothing. Test said no functioning ear drums, no anything detected. Is it foolproof? Absolutely not. We will do the ABR as soon as other more serious issues are taken care of. But we expected little here.
Zihao- a shocker. The tests registered nothing indicating significant hearing loss on both sides. In fact...same exact results as Taizi! That was crazy. We know he can hear but my gut feeling of significant hearing loss in at least one ear ... was correct.
That pretty much wrapped it up.
I walked out feeling a bit crazy. Barely looking up but asking "God...are you sure...? You really picked the right people?" Constantly going back to how He told us" yes. Taizi. This is him . You are the family. The time is now."
He knows. He knew. And...He knows.
In the spirit of transparency...this was exactly where I was when I walked out. :( Taizi was loud in the clinic today. His repetitive songs. Hitting himself. Definitely out of his groove being in that strange place. It seemed every professional kindly was asking 'what were you thinking?'. No they didn't verbalize it. But it was there. "Did you know he had ALL of this?" "HOW many children do you have again?" yah. Yah. Well it wasn't me. It really wasn't. And the One who called us to him...is a whole lot more knowledgeable than us and ... we trust Him.
In the end...that's the peace. That's where it comes from. That's where it will always come from.