Tuesday, April 17, 2012

This is it...!

No this is really ... it! The big surgery we've been fighting for from day one.

I will never forget the day Azlan was born. One of the most memorable moments in my life. As I shushed in his ear and he wailed... I shushed in the other ear...he stopped crying...I tried again...no response in his right ear...total silence when I shushed in his left ear. This is only hours old. I called the pediatrician in and told him. He shrugged me off and suggested lots of wax in his right ear. ...

Azlan failed every hearing test in his right ear...had a sharply formed outer ear and ear tags on his right ear...

We returned 2 weeks later and he again failed every test in his right ear....

I fought for 18 months for that ear...

We sat in 'sound rooms' (technology out of the ark!) from 3 weeks old...

Every time... "he may have slight hearing loss"...

Azlan grew...

bumping into walls.

If you called him...he literally spun into a complete circle looking for you....

One day we were playing hide and seek and I came up beside him and said "Azlannn...." about 2 feet behind him...it was such a sad moment for me...he walked all the way downstairs (with me RIGHT behind him) looking for his mama.

I knew he was deaf in that ear.

I was 8 months pregnant with Azahria and I decided to fight for Azlan's hearing.

We were at Seattle Children's...I met with the entire team. The ENT, Audiologist, Speech therapist...all agreed he had perhaps 20% hearing loss in his right ear. Finally the audiologist leaned over in the room and said in a low voice to me "have you ever been called a hypochondriac before....?" Courage came alive like a lion.. "why no I haven't. But I'm open to that. How about we do the ABR test (hearing test under sedation with total accuracy) and if I'm wrong you come tell me I'm a hypochondriac...I will accept that". He smiled. Deal.

We do the ABR.

I was called into a small room with a different audiologist. Not surprised.

She was deaf herself and had 2 cochlear implants.

She looked at me and said "I don't know what to say..." .....? "Azlan is 100% deaf in his right ear...literally he has nothing. Not even a functioning cochlea which isn't formed at the same time as the middle ear. He's not a candidate for anything. We can't help him".

18 months old. I'm glad I fought for you.

Knowledge is power.

Changing teams to Spokane made a huge difference. "nothing we can do" changed to "wait there's the BAHA...we can help you!"

And here we are. Finally getting the BAHA for Azlan Honor.

It won't give him a working functioning ear. It will vibrate the sounds from the deaf side of his head through the skull bone into the one functioning cochlea on his left side.

Surround sound.

The ability to localize.

The ability to distinguish sounds from each other.

To enhance his speech.

To give what we all take for granted.

This is it...!

We met with Dr. Omar Husein last week for the pre-op. He just grinned from ear to ear. He kept saying how excited he is about this surgery. For the last 6 months Azlan has been wearing the BAHA device on a tight headband. He can't wear it for long periods of time...just a few hours each day but that has made such a HUGE difference for him. Dr. Husein says this ... will improve his hearing by a minimum of 10 decibels over the headband. No plastic, hair and scalp between the device and his bone anymore.

He says this is a tougher surgery to recover from. He thins out his scalp and skull from what I understood. He attaches a piece into the screw (that was implanted into his skull 6 months ag0) and sews the skin around that piece so it is sticking out of his head. This is what the BAHA piece will attach directly to once he is healed. He said his head would be bandaged for a few weeks for full healing.

He also received approval (from insurance) to do a bit of plastic surgery on his ear cartilage. We discussed the main shape of his ear and we are going to hold off for now. His ear has changed a lot since infancy (he was dramatically different from his left ear..now is much more subtle) and if we wish to work on it down the road we can. We are going to do that piece of cartilage that is at the base of his ear canal. Azlan's is cleft. I'll take a 'before' photo before surgery. He is going to open that and remove the sharpness of the cartilage to make it smoother.

Dr. Husein did talk about how Azlan doesn't scar well. His scars stay red for years. Even his lip scar is pink as opposed to many children go to skin color very quickly. Where the ear tags were removed 6 months ago is hot pink. Another reason to keep the plastic surgery to a minimum.

I showed the doctor close up photos of Taizi and Zihao and asked his opinion. He noticed the ear tags on Zihao and said it's definitely possible he has deafness in that ear, we won't know til he can evaluate him in person. Regarding Taizi ... he said he feels strongly that he's lacking one full ear canal and the other ear significant hearing loss. We discussed how important it is to get them in to see him as soon as we can once they are home. Especially when he realized Taizi's palate is still wide open. Having a doctor that specializes in ear reconstruction and clefts...is....amazing...seeing we are now adopting two precious little boys that will need just that in a doctor.

So here we go. Our big moment for Azlan.

He has taken a bear to every surgery with him so far and he's already picked one out to go with him this time.

Do I have a lump in my throat...? Absolutely. Such a huge part of my heart belongs to this little boy. He needs every bit of it.

A few weeks before this new adoption journey began, I was reading my Bible and I could not move past this one line in this one verse. So much so that I was very compelled to keep going back and rereading it. I remember stopping and saying out loud "ok God...you have something here for me...I have no idea what...but I'll keep it in mind..." Oh little did we know.

All that we had been through and fought for with our precious gift of Azlan...

was for so much more than Azlan....

all the way down to his diagnosis of Goldenhar Syndrome (that we fought 2 years for in Children's)...

to his deafness...

to finally a medical team that is equipped and proactive to fight for him...

the line God kept bringing me back to was "and who knows but that you have come to (this) position for such a time as this...?"

It was just a few weeks later it all hit me and this verse came back to me. And I knew. Crystal clear. It was for such a time as this. Azlan is paving the way for his 2 little brothers coming from China.

Esther 4:14

For if you remain silent at this time, relief and deliverance for the Jews will arise from another place, but you and your father's family will perish. And who knows but that you have come to royal position for such a time as this?"


2 comments:

  1. Janice - I am praying for tomorrow. Praying you will be able to rest tonight with such a big day ahead for Azlan. Asking God to guide the surgeon's hands. Asking God to comfort little Azlan and give him peace from all anxiety. Praying for full success and recovery! If I could, I'd give this son of yours a long tight hug. You're so brave Azlan!! ((hug)) <3

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  2. Nothing like a momma's instict!! I was fascinated reading this and seeing how amazing God is. How at times we can't see the bigger picture, but He's got it all figured out :-) Thanks for sharing, love Leanne

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