Wednesday, February 17, 2016

Azlan update

In the crazy of our life right now, I forgot to update on Azlan.

So the sleep study results showed mild sleep apnea.  As with everything Azlan deals with, we treat it aggressively.  So he will be starting the CPAP machine for bedtime use.

The call from the medical team was different than I expected after all of his appointments.

The bottom line is every one on the team agreed the only option for Azlan IS the big halo surgery.  The question is the timeline.  If they do it now...he loses all his permanent teeth that are not yet in. His teeth are coming in slowly and he's already missing several so they don't want to lose the few he has coming.  It's also for bone development which he needs...the more teeth, the more bone.  So...basically unless he was in need of a tracheotomy (yes...that extreme) they wouldn't do the surgery before his teeth were in. Thankfully...his airway is NOT that restricted ( can you imagine?? We'd be fighting for the surgery and deal with teeth later if that really was how severe he was right now...!).

They are guessing age 12-13 is when he'll have the surgery.

Based on the molds ... here's what surprised them. His upper jaw is not growing properly. We knew that from the report in 2014.  But...now what they are seeing is his bottom jaw is growing way too fast.  So as you can imagine the problem is magnified.  He literally had a growth spurt in his lower jaw making the problem much more extreme.

They are watching him closely. He will have the big X-rays done every 12 months at the very least because at any time this can speed up even faster and we may have to reconsider the plan.  They are concerned. His case is unique.  This is not solely cleft related but more so Hemifacial Microsomia related. He has a very swollen tonsil and has had it for 2 years but they cannot touch it unless it's an emergency because it will affect his airway and his speech.

Azlan was sad to find out that they won't even do braces right now.  His front tooth is at a complete 90 degree angle. He has very little "bite". In fact the team cannot believe how well he eats! He could ever chew his nails etc as he has NO bite until his back molars and even that is off!  But they don't want to do braces until more teeth come in for stronger bones.

Again we were thanked that we homeschool him. Yes by his medical team.  You may be anti homeschool and that's your right...but know that each family is responsible to make the best decision for their family and this was not an easy one for us. Tirzah was in private school and I loved that.  But with some of our adopted children and definitely Azlan we knew we needed to homeschool him.  His self esteem has never been hit by fierce bullying.

In fact we were in Target the other day and I looked at him and he was beat red. I had never seen him like that before...his ears were almost purple!  I asked what was wrong and he said there's a little girl (3 or 4y) in the cart that keeps pointing to me and laughing and I'm thinking she thinks I look funny. Can we please keep moving?"  It broke my heart.  But I also took time to say she's like Nazara or Izrael and I bet she hasn't even seen you well enough. She's just being silly. It was about 30 minutes before his color went back to normal.

You can think my job is to prepare him for the real world and I would argue he's more prepared than most. He's prepared to be strong when he feels so weak. He know how to overcome obstacles more than most adults I know.  He knows how to find his inner 'bravery' when he's trembling. He knows how to be kind when he's not in the mood.  He knows he can do hard things.  We are preparing him for life. And there will be a time when he can fly...but I'm so thankful we  put him under our wings of protection and never subjected him to the ugliness that's out there before he needed to.




2 comments:

  1. Being a teacher, I was iffy on homeschooling for years, no longer. When I see what Common Core is trying to do to an entire generation of children, the homeschooled kids will hopefully be protected.
    Blessings to you!
    Deborah

    ReplyDelete