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!

Dr. Matthews

We've just finished our visit with Dr. David C. Matthews in Charlotte, NC.  Believe it or not, KT came away from his office PAIN - FREE!!!  Oh, my goodness, skeptic that I am, I did not have much hope that he'd be able to take care of her pain in ONE visit.  He says the drug-free treatment will last a minimum of 48 hours, and may last forever.  KT is thrilled!  She says that she has never been pain free for 14 months (at least) since the last surgery in Ohio in late October 2011.  Here's how he did it:

1.  Massage the scar tissue inside her mouth in the area where the pain was coming from.  He softened the scars by gentle massage, called "rolfing," (which I had never heard of), until her entire tissue loosened up enough for him to progress from barely being able to fit his pinkie finger in there (between the cheek and the tooth/gums), to getting his index finger in there.  Then having KT feel with her tongue to see how much more room there was in there.  Meaning, too, that there is now more room for the toothbrush, which will allow her to keep that painful area cleaner.

2. Then, he used a very unusual little handheld device, called "miHealth," an energy tool that assists with healing nerve pain.  Here's a photo of the device.  Based on studies of acupuncture, it has various frequencies it sends out to interact with the nerves.  He used about 5 different modes on her over about 45 minutes.  Each mode decreased her pain further and further, until finally, she said the pain was gone.  I was amazed, and wondered how much of it was psychological, but he now has me convinced.  I'm hoping it will last for much longer than 48 hours, and I believe it just might!

Anyway, no decisions about any further surgeries were made, because the main focus of this visit was to find a way to relieve her of pain.  So we consider this a success!  (Even though his office didn't accept our insurance.)  He now wants a copy of her before-surgery CT scan to compare with the most recent one, so he can think about the situation for awhile and then come up with some recommendations.  Since this was the very first time he'd met KT, it was definitely a "get-to-know-you" session.

We like Dr. Matthews, and are still in shock as to how quickly he was able to help her overcome the long-standing pain.  Thank you for your prayers and faith.  We'll keep you posted as to how things go.

Love, Glenn, Pam & KT

P.S.  We had dinner with Judy Mosher, a long-time friend and organizer of many Treacher-Collins Retreats over the years.  That was a special "bonus" to this trip.  We're still trying to work out a time and place to meet with KT's birth Dad, but so far we haven't been able to work out the details, so it may not happen this time.

All's well

KT is recuperating today peacefully at her Grandma Whicker's house. The surprising thing was that Dr. Sidiqi found nothing that would anatomically cause the pain she has been experiencing. There was, in fact, no exposed bone after all. No infection, puss, fluids or anything. So, either the exposed bone they saw last week healed over in that short time, or, as Dr. S believes, they were only seeing white colored scar tissue.

So, he did nothing inside the mouth, but did make an incision on her right ear nub, to see what was causing the tender soreness and inflammation in that area. Again, he found nothing. No floating bone fragments, no fluid - absolutely nothing. We're all perplexed. It's great that there's no infection, but something has to be causing the significant pain.

We'll be heading to North Carolina on 26 Dec to see our one remaining hope - Dr Matthews. He's an older, more experienced surgeon for Treacher Collins patients. He finally called and has agreed to see her to help us determine what we can do. He has already reviewed her CT scan and uses alternative means of pain control. KT had a very rough night, but should recover quickly from the incision.

Thanks for your prayers and love!

Another

Kati's bone in her jaw is exposed again. The surgeon at primary children's hospital wants to do surgery tomorrow. So, we are departing in the morning to take her up. The pain just hasn't let up. Thanks for your continued prayers.

- Glenn

Homeward Bound!

Leaving the hospital now.  KT is not too swollen, just woozy from the drugs.  We're going to bee-line it for home and get her comfortable in her own surroundings.  The exposed bone was scraped, cultures taken, but the soft tissue was NOT closed over the exposed bone.  It was left open to heal on its own so if there is any infection, it has a way out.  Thanks for your prayers.

Surgery # 25

Katie's just now going into surgery.  Late night!  Looks like they will keep her overnight for observation. Cultures will reveal whether antibiotics are targeting all the right bugs.