Thursday, February 6, 2014

When 10:30 appts lasts until 5:00.

We drove to Seattle yesterday for two appts for Azlan and Zihao.  ENT and Eye.

ENT became more intense as we went.  We opted to do a full hearing test for Zihao as he hasn't had one since his ear tubes were put in. He shows moderate hearing loss in both ears. The plan is to repeat this test again to verify results and then do double hearing aids.  We are glad for a plan because we have known of hearing loss for a while.  Any of these 'aids' seem to have their list of positives and negatives.  The negatives are visible reminders of their disabilities...to other children.

Azlan's results were interesting. Seattle was baffled to find ZERO hearing in his right ear...something we have known all along. Since much of his care was done in Spokane, they didn't have those results.  They said to see a Baha implant in a child with complete single sided deafness is rare.  It is usually used for small/blocked/deformed ear canals and therefore brings sound directly to the affected inner ear.  Azlan's is routing the vibrations to his one ear.  While that is frequently used in adults, Seattle takes a more conservative approach and they don't recommend it for children. They said it can be information overload to their one working ear and not give the things he needs like localization. We do still see him do a full 360 when you call him b/c he can't tell where the sound is coming from. We were told all the things affected by SSD (single sided deafness).  Things like learning to read are definitely affected, distinguishing sounds in loud environments, localization.  They said the Baha is not worth all the risks (which we have had plenty of actually occur) at this age. Since it doesn't give him what he actually needs...was it worth 2 major surgeries and all the infections that followed...? Their thoughts...? Absolutely not.  In fact the ENt said if it were his child he would consider two different options:. 1. Do a second Baha in his good side.  Maximizing surround sound, he would have a Baha implant on each side of his head. Option 2. remove Baha number one.  He still is on daily ointment and has pus and drainage 1-3x every few weeks, needing an antibiotic ointment. Doing that for life without the benefits we were hoping for...? I'd have to stop and think about that.  Another concern we have now, is that while hair growth around the surgery site was damaged (a good thing in a way) there are hairs now growing tight in by the screw. Yes. Try plucking those on a 7 year old boy... :( They get caught in the hearing device and well...it's not that pretty. So we even discussed doing hair removal creams with a qtip at the site.  Lovely.
Best part is ... we will have all hearing tests redone to be sure we have correct results (which have been done several times in Spokane, all with the same result)...and then make a plan best for Azlan at that point.  His 'good ear' does have some hearing loss but at a frequency we aren't going to worry about since it's outside of the most common frequencies used in day to day life. To add a hearing aid to that ear and all the issues that come with that...for this boy ... no.  Not worth it.

So we went ENT, audiology...then they squeezed us back with ENT to discuss these results then we went to EYE. Both boys had to have their eyes dilated. Azlan took it like a champ...Zihao screamed enough to raise the roof. He then got up from the chair as I cuddled him and said "I did not like that, no I did not!" ... just in case we thought otherwise ;)

We went into a dark room for 40 minutes to wait for the drops to take full effect. When we came back we were shocked to hear Zihao has perfect vision. The doctor saw him turn his head to a full side to look at the chart, so she knows what we are talking about but ... results are perfect vision. Very happy to hear it...just baffled as to why he turns his head to the side to look at anything. We've said from the beginning that he either is deaf in one ear (results are the same hearing loss in each ear) or blind in one eye...and alas...that's not the case :)

Azlan has +2.75 in his right eye.  Honestly...though a small issue to most...my heart sank when I heard the news.  Let me reemphasize just how small of an issue this is. We are not over reacting. He gets glasses. No big deal.

For Azlan...his right ear is tilted at a 45% angle. Part of his Goldenhar Syndrome. That is the same ear that is completely totally 100% deaf at all levels.  All good. Until you have to put glasses on. He can't wear sunglasses...they fall off b/c one ear is so much lower than the other.  Yes...I'm aware there are google styled glasses for children like this...and let me say I will do what it takes to avoid that route.  It's one thing to have a funny ear...a very obvious repaired cleft, a severe underbite, a knob sticking out of your head for your hearing device, severely speech delayed...we won't be doing goggles.  So...if nothing exists to make this work...this mama is about to invent it.  We will go glasses shopping and find a way to keep them on his head if they can't lower one arm to fit his lowered ear.

Ahh.  The highlight of the day was when the ENT was leaving the office and asked me how he does in school. I told him I teach Azlan at home and he softened and said "Let me be honest with you...you have no idea what you saved him from. He can't function in noise with single sided deafness...BAHA or no BAHA...so he'd be swarming in his own world with all the noise.  He would struggle to learn and especially how to read...I fear he'd be pushed through, knowing little.  But...he'd be bullied.  Especially with his severe speech delays". He came and patted me on the back and said "He will thank you. Good job."

Yes...Dr...I do have an idea what we have saved him from.  I get the protection can only last so long. I get that many of you think I have him in an unrealistic bubble that is soon to be popped. Gracefully...I disagree.  His protection will help him accept who God made him to be...first. His bubble...will last long enough for him to withstand the taunts of others because his foundation is rock solid.  When he is told just how 'different' he is according to little Billy...he will know deep inside just how perfect God made him and he'll also know just how hard he has worked to be all he can be. Our job...is to protect him until he can protect himself.


2 comments:

  1. I love the last bit about a parent's job being to protect their children until they can protect themselves. In this day and age I find there is so much emphasis on kids being in the "real world" and not being "sheltered", and from such a young age, too. You sum up "sheltering" them so perfectly...from a perspective I've never heard before. "Protect him until he can protect himself"...love it.

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  2. So sorry to read you had a tough appointment yesterday :( I don't blame you one bit for sheltering your kids. Their hearts are so tender. I homeschool my 10 year old and every time I've prayed about sending him to public or private school I get no peace about it. I just feel like he could be a target for bullying because of some issues he has. You're doing a great job with your kiddos!

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