New Ears Day!

A MOST UNBELIEVABLE DAY 

IN THE LIFE OF KATIE

Paul Tanner putting on the final touches Friday.  Note: KT was not allowed to see the real ears until he was completely done.

Once he was finished, Katie was allowed to turn around and see her final ears for the first time.  The photo above and below captured her reaction from two different camera angles.  You can just SEE the joy in her soul.  It was a very emotional moment for all of us!

 Then, she got to hang some earrings on those new ears!  This is where joy intersected with pure pleasure.  

By the time we got home, Grandma had posted this sign in the front window of her house, declaring it a HAPPY NEW EARS DAY!  There has been nothing but rejoicing since.

Day 2 of Ear Week

We spent a long day at the Huntsman Cancer Institute where Paul Tanner's medical artistry is practiced.  Katie didn't mind the tediousness of all the aligning, adjusting, and talking to the news crew.  These wax ears are just preliminary, but even so, it was an emotional event to see her with ears on the side of her face for the first time ever!  Katie was all smiles, especially as she hung her first set of earrings to see how they looked. Friday will be another long day to finalize everything.

Ear Week!

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This blog episode is all in pictures.  I hope you can follow the process.  




It's pretty fascinating!   Katie is EXTREMELY excited about these ears!  The surgery to expose the new implants from under the skin went very well yesterday. She has only had a small headache today.  KSL TV will be airing a special segment on Katie getting her ears this weekend.  We'll post the time when we find out.

Significant Headache

This isn't a very appealing photo, but we thought it would be good to document the prosthetic ear process.

A total of FOUR posts were implanted into her skull on the right side; only 3 on the left.  The top post, which was done through a completely different process, is to hold her right-side BAHA (Bone-Anchored Hearing Aid), so she'll have bilateral hearing.  (She already has a BAHA on the right side.)  This post is capped with a plastic cover, and will take 3 months to heal before a hearing aid can be hung on it.

THREE posts were implanted on each side of her head to hang her prosthetic ears upon.  These were surgically implanted into the bone, and then covered with her own skin, where they will heal in a protected environment for less chance of infection.  These will heal in only 6 weeks, at which time they will cut holes through the skin to allow the posts to protrude.  They will then attach screw-like ends to them, which will then hold the "snap-on" ears on.

The other incision was to remove her misplaced ear "nubs" that she was born with.

KT is hurting pretty badly still, 5 days after the surgery.  We thought this would be not quite so significant a surgery, but I guess you can't expect 7 new holes in your head to NOT cause a headache!  We're hoping the pain starts subsiding soon.  She received a blessing from our Bishop this afternoon.  Please pray for her!

- Glenn

P.S.  KT has started her own blog to express what it's like to live with TCS (Treacher Collins Syndrome).  http://strollimysoles.blogspot.com/

She's Holier Now!

As KT woke up from the anesthetic yesterday, she said, "I'm holier now." At first, I thought maybe she'd had an out-of-body experience, or something.  But then it quickly came to me that she was making a good, old-fashioned Whicker joke!  With 7 new holes in her head after yesterday's surgery, she certainly is "holier" than she was before!  It was nice that she had such a good sense of humor right out of the chute.

The humor didn't last very long, though. This turned out to be a harder surgery than we had anticipated, and she had a rough night, though, thankfully, it wasn't in the hospital; it was in the comfort of Grandma's home. The pain meds only lasted about 3 hours, so we had an hour of pretty intense suffering each time they wore off before she could have any more.

The bandages will be changed on the 3rd day by Pam, then every day for the next 4 days.  The problem we didn't anticipate is that she cannot get her hearing aid on with the bandages as they are today, so she'll be deaf for these few days, and she does NOT like that!  She wants to be in on everything, and going without her aid is a worse sentence than anything else she can think of.

This morning, at about 9:00 a.m., she said she felt a little bit better.  So maybe we'll be able to enjoy the 4th of July a bit.  She was so excited about this surgery, and none of us expected it to be quite as rough as it has been for the last 24 hours.  But now, we're on the upswing, and once she can get her hearing aid back on, she'll be a happier camper!  Thanks for your prayers and love!

- Glenn

Goodbye, Nubs...

KT is in surgery right now to have 3 titanium posts implanted on each side of her head to hold the new prosthetic ears she gets in August.  She is so excited! Never before has she gone into ANY surgery smiling like she did this morning.

She will have her ear nubs removed as part of this process, so we took one last photo to remember them by. Lastly, she will get a new post on the left side to secure a new bone-anchored hearing aid (BAHA) to, so she'll have bilateral hearing after all these years.

It should be a 3 hour process.

- Glenn

Tailbone Surgery

Katie will undergo removal of her tailbone on Tuesday, 21 May, 2013, here in St. George.  She broke her tailbone 10 years ago in Virginia on a water slide, and has endured the problem all this time.  It caused serious issues during her long hospital stays during the summer of 2011, so we decided it was time to remove it.  We're hopeful it will be a quick and easy healing process so she can get on with life.

Her severe facial pain issues continue, so we're hopeful that Dr. Wells will be able to do a test nerve block in her face while she's in the hospital overnight.  We're also trying to schedule craniofacial surgery for July in North Carolina to build her jaw joints, so that her lower jaw can finally be rotated sufficiently to bring her teeth together and create a chewing surface, which was nearly completely lost during the recent molar extraction (which was supposed to be the root of her face pain, and didn't do a lick of good.)

We're really struggling with knowing where to go and what to do to help this little gal.  She successfully made it through her Junior year of high school, but with much difficulty because of the pain.  Please, Lord, guide us!  She wants to go on to college and become a veterinarian, and needs a more stable face to be able to make those goals.

Thanks again for your prayers.

- Glenn & Pam

Special Fast

Since tomorrow is Fast Sunday, we're asking that anyone who cares to please focus their faith on the healing of Katie.  She has suffered so much this week with severe pain, and we've come to the conclusion that we're going to have to have more jaw surgery this summer - things just cannot go on like this!  Only this time, we'll have a jaw joint made for her, which she has never had.

In the meantime, she needs relief from the constant pain.  We've got 5 doctors/dentists working with her right now, and they all have differing opinions about what is wrong and what to do, so progress is slow.  Dr. Christensen, though, is right there with us and very concerned.  He is doing all he can to help us find a solution.  Strong pain meds don't help her much at all.  She's missed most of the week's school classes.  

So, thank you if you can fast with us.  We'll be seeing the infectious disease doctor in Provo Monday to rule out any further bone infection, which the bloodwork does NOT show, but which the local doctors think might be hiding.
Now we're seeking to find the right doctor to do the jaw joint building.  We like the guy in North Carolina, David Matthews, but would like to find someone closer. There is one near San Francisco I'm conferring with, but the one in Dallas won't take our insurance and wants $50,000 cash to do it.  So we've ruled him out.

Love to you all!
- Glenn

P.S.  There's some assymetry going on with her face lately; we're not at all sure what's causing that.  Oh, and on a bone density scale, which should measure a value of 360, Katie's right lower jaw measures MINUS 6.  Not good material to work with, and whatever we do will be a tremendous challenge for any surgeon.

The Pathway to EARS!

At the U of U hospital today, Katie is getting her first laser hair removal treatment, in prep for getting the abutments for her snap-on ears!  She was so excited yesterday after our consult, that she literally walked down the hall of the hospital and ran, jumped, and clicked her heels together!  This really means a lot to her.  It is a longer process than we thought it would be, mainly because she has so much thick hair in the way of where her ears will be that they have to do 6 – 8 laser removal treatments in order to get rid of it all!  And each of those treatments is supposed to be separated by 5 weeks, but we’re trying to squeeze them together into 4 week intervals.  The last couple of treatments will be done after she has the surgery to install the abutments, so we can get her into ears by the week school starts in August.  The surgery will be on 2 July.  We’re trying to, at the same time, have another hearing aid abutment installed on her left side, so she’ll have bilateral BAHAs, to improve directional hearing, etc.  We’ll see if that all can be fit in on the same surgery.  At least that’s the plan.  We’re trying to do all this before she’s 18 to ensure our medical insurance will cover it.

Prom!

KT is on her Junior Prom date tonight, putting forward a good face.  She has still been struggling with some pretty significant pain, but has been pushing through it bravely.  She's on some new pain medication which is supposed to build up over 3 weeks to take full effect (gabapentin), and we're hoping it will do the trick.  But it is slow in coming.  She was THRILLED to get invited to prom with this young man, Tyson.  His father, by the way, was a missionary in England when we lived there in the late 80's, and we had him over to our house for dinner many times.  Small world!