Tuesday, September 16, 2014

September 16, 2014.

I tried to avoid counting down to this day...interestingly...that didn't slow it down one little bit.

Today arrived.

With sunshine.

In and out.

On the way to the hospital, we turned the music up and we sang. We all sang. The baby clapped her hands and laughed...everyone else belted it out.

"I want to be like...Jesus...!"

"You are...bigger than any battle I'm facing...!"

We sang.

Then we stopped at Target and went toy shopping. Nana and Papa sent money for the kids and we had fun. The best  part is how creative our children will be.  They each got $5 to spent (except Azlan) and instead of each buying a small thing...yes...that's right...they combined their money! Brilliant.  The girls all got a tea set and the boys got Legos.

Then all the big kids hugged Azlan and him and I went inside.

Excited about his new Lego set from Nana & Papa!

Cuddling with his lion that Tirzah bought him. (She's lovely)

We opted to give him the oral sedation just to relax him.  He was doing amazing but I knew he was nervous.  He responds to that really quickly and got silly and floppy :)

Cuddling with Mommy as the time is getting close. 

They asked if I wanted to go into the O.R with him until he was asleep. Absolutely!  So I geared up and he was so funny. He kept staring at me trying to figuring out what in the world I was doing. :) The doctor offered to take a pic...so glad she did!

I went in and got to hold both of us hands as he breathed into the mask. His arms went a little crazy right at the end and they quickly whisked me out of there :)

I met Dean and the kids out in the playground and it was beautiful out. We opted for them to go to the Zoo since it was so nice out and I had to stay in the hospital.  

I had a quiet lunch full of deep thoughts.

After lunch I was in the stair well and I thought I heard "Walker" but obviously kept walked. When I got to the top, someone tapped me on the shoulder...and it was his plastic surgeon! So he was calling me!  

We went to a quiet place and talked.  He said it went exceptionally well.  He went into great detail to explain what he did. It's crazy.  They opened up his right hip bone and in his words..."scooped out some bone". He described both the outer and inner bone that they use. The one being soft and pliable.  

Ok so here's what he told me:  basically when you look into his mouth, you would have seen a gap in his gums or upper jaw bone.  A cleft...or a gap.  However...that small gap, he explained, was like the tip of an iceberg. As in...you see a small piece but beneath the surface it's huge.  Yes. That.  I had no idea. So he said that bone that is missing...is not just this tiny piece in the gums but instead goes all the way up to form the base of the nose. When they repaired his lip, they did it with soft tissue but he still had no bone base under his nose.  Until today.

Here is the crazy part. He said that gap when he got all the way up to his nose was "huge".  As in well over an inch wide.  I asked if that correlates with the size of his cleft lip at birth and he said "Yes, identically".  So yes...his cleft at birth was huge. Over and inch wide.  This surgeon was in the O.R for that surgery but just as a resident. Well he told me today that one his way out of surgery, he bumped into the Dr who actually Dean Azlan's lip repair. He is an older man and totally remembered Azlan. He said "with a name like that..." :).  He told our surgeon today that "woah...that was a huge cleft".  So picture a triangle.  You see the smallest piece in the gums but the higher you go, the wider it gets. THAT is what was repaired today.  So they took hard bone and filled in the gaps and then with all the marrow (inner bone), he formed it around the soft bone to hold it into place. Firmly.  Because that's all that is holding it in.  



He said this will actually lift Azlan's nose because now he has a bone base, which he has never had before.  He also found a hole in his palate that he repaired.  

The hip will hurt.  A deep, bone pain. Because...that's exactly what it is. 

The mouth will hurt and feel very strange, because, for the first time in Azlan's life, he doesn't have a huge gap in his mouth. 

He woke in recovery crying.  A lot of pain in his mouth.  He went from an "8" to a "4" with lots of medication.  We were able to move to the floor and our nurses have been amazing.  

The one we have tonight has worked in pain management for years. She said the trick is staying on top of it before it hits. Because his hip is so numbed from the local given during surgery, he has zero hip pain. But .. once it wears off it's unbearable.  So that's what we are going to do...stay on top of it.  He will be woken through the night with medicine and I support that 100%.  

The greatest risk after today is the bone graft not taking or infection happening in the mouth. With so much bacteria in the mouth, that's the problem.  Please pray that this doesn't happen.

They want him to walk as soon as he can to bear weight on the hip.  This can be very painful.  He won't be allowed to play sports, playgrounds etc for a minimum of 6 weeks.

Interestingly, the bone will not be visible on X-ray for at least 6 weeks ... so until then, we don't know if the bone graft was accepted by the body. 

Remember I blogged about "the gift of Whitney" a while back? Well guess who met me in the waiting room? Miss Whitney herself. With a gift bag for Azlan.  He loves his gift, a beautiful cowboy hat blanket! 

Then his nurse had him pick out a pillow and of course we got silly with the chicken one so that's the new pillow :)


Thank you for your prayers for our family.  Thank you.

Why is today so hard? Because today marks the beginning. The beginning of the next phase of Azlan's journey. The phase where he's having to spread his wings and fly.  Digging deep into what he knows and believes. Rooting his own faith deep in his own God.  Walking with dignity and gratefulness...and humility.  

As an 8 year old boy that has been deeply loved since his heart first started beating...long before he took his first breath...he knows he has purpose.  I've never heard him ask "why me?' Never.  He's never looked at his healthy siblings and asked "why...not them?"  We talk of purpose.  Purpose.  One day...you will see this was one of the greatest gifts you have been given. Because it molds you. Into someone...you couldn't have been without it.

It's not a dead end road....mister Azlan.  If it takes you...to where you needed to go.


  1. Thanks for the update on your sweet little boy! Praying the graft works and that he will start to feel better soon!

  2. "We are fearfully and wonderfully made" ! What an amazing God we have that gives men the wisdom and ability to perform such intricate and amazingly momentous surgeries!
    Also, Janice, ' Who knows but that you have been brought to this earth for such a time as this.' I believe that God has amazing plans for Azlan and you are being used to nurture your young lion. How sweet and fitting that Tirzah would give him a lion. God bless your sweet and precious family.

  3. What a beautiful picture of how our Father plans a purpose for us. What a special purpose He has for your courageous Azlan!

  4. Hope Azlan is doing well glad he liked his blanket he is very Special and god is great! Prayers for a great recovery!

  5. What a story he'll have! What a tough boy! Thank you for sharing your (and his) journey through it Janice. We will be praying for you all :)