Monday, January 25, 2016

Oh...Azlan. My Azlan.

Today, I woke up with a light tap on my front door at 3:45am.  Yes. The miracle is that THAT woke me! :) My friend was at my door and I had just opened my eyes.  Ahh. 5 minutes later, Azlan and I were in her car headed to Seattle for 2.5 days.

We arrived shortly after 8am.

Cranio facials appts.  Then the dreaded dental.

My poor boy.  As he was getting the disgusting impressions of his teeth done, he was staring into my eyes...with total fear.  I was holding his hands...very close to his face...saying as courageously as I could "you can do hard things...we've got this" and then the vomit.  He vomited. Over...and over and over again. Probably 12 times. With the impression still in his mouth.  It was awful. He was crying. I was crying.  There was vomit everywhere. It ... was awful. When it came out he laid his head on my shoulder and we both cried.

It was such a small thing. But it was hard.  And every little hard thing that he has overcome is what has made him who he is today.

Getting a toy monkey made up for it :)

He thinks this surround X-ray is pretty awesome.

And then this.  The talk about this X-ray.  Now...the talk in all its detail will be a few weeks out when the team has had time to get together and go over every detail of this and tomorrow's sleep study results.


Here is his X-ray from Feb 2014:

And here is his X-ray from today.

Now I don't know what you see but I can tell you what I see has had me in or near tears all day.  Oh my beautiful Azlan Honor.  Looking at his top jaw and his bottom can see how the underbite (which was "severe" in 2014...)is even greater today.

We were told by the team that there are about 4 surgical options.  The problem is, he is already too severe for options 1,2 and 3.

That leaves number 4.  Number four...let's be really tough.

We don't know (yet) when this will be scheduled. It will be based on a number of very important factors.  His breathing is getting more and more labored. His snoring s much louder at night.  His speech is getting even more difficult as he grows and the gap in his jaws grows.  And then there is his age.  We would rather do something severe and traumatic at 9-10yrs than 13-14yrs.  For many reasons.  We don't know WHEN it is...we just know this is what's in his future.  We wait to hear back from the craniofacial team as to when.

I know I haven't told you what option number 4 is.  But it's not pretty.  It's just...his only option.


Yes it's visible externally. Yes it's something that's adjusted daily. Yes it's awful in so many ways.'s understood to be his only option.

Perhaps for the people you know..."cleft is only cosmetic". Please. Please don't ever say that to us.  We aren't hyper sensitive to the words you use...just saying for Azlan...his cleft was not "just a surgery" at 5 months and...TADA!  It wasn't.  

Tonight...we are laying in our hotel room with our sweet friend who came on this trip with us.  Tomorrow he gets his sleep study done.  

Tonight we are all laying in our beds watching HGTV Tiny Houses and laughing so hard...hearing Azlan's sweet laugh beside me is the best medicine.  The...very best.  

1 comment:

  1. Azlan is so BRAVE! And he seems like he has such a gentle spirit. I hate that he has to go through this--and I can only imagine how hard it is for you all! Praying for your handsome young man and for you all as well, Janice. Also in my prayers is the situation with Zhenai. Did I spell that wrong? I think I did--sorry my friend!