Calm

KT had a very calm night and day. Lots of meds, but tolerable. Looks like we may be able to enjoy the weekend in MI with the Fords after all. Yeah!

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Out

KT's out of the hospital as of 7:30 pm EDT, very swollen in the face. She kept signing that she wanted to go home, so we said that's where we're headed. "No!" She said; "I want to go home to UTAH!". Poor girl is so tired of pain. She's enjoying soaking I the tub for the last hour. Were hoping tonight will be restful.

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Charm?

We were hoping the 3rd time would be the charm, but so far, not so. KT had her pins repositioned yesterday morning, but when she woke up, they had a very difficult time getting her pain under control, so they admitted her to the hospital for overnight. She didn't do very well overnight, awakening each 1.5 hours in pain. We can only hope things will improve today (Tuesday). Dr. G felt like he had to move the bars closer into her face, because the bone that was being created wasn't as strong as he thought it should be after sitting for a week without turning. So he's trying to stablilize things more. But it seems like that is less tolerable for KT. She's again complaining about the back of her head and her eyes. Please pray that the swellling will decrease quickly and provide her sufficient relief that we can turn the screws for 2 more weeks. Then we'll let it rest for a week before we start the upper jaw distraction. Still a long road to hoe.

Meg & Francis

Meg is another old friend with TCS we met at the CCA Retreat. Unfortunately, we forgot to get a shot of Francis! We love them both!

Jockey

Being in Louisville for 2 days re-whetted KT's appetite for horses. Now she wants to be a famous race jockey!

Partner

KT got together with another little gal, Sydney, who is going through the same jaw distraction process today. Syd used to live in Cedar City, so we have met her before, but they moved to California. Don't they look fashionable in their distractors? As you can see, KT is doing quite well - very little pain since we stopped turning the screws; of course, that is gaining us any progress! So back we go early Monday morning to have that top pin moved once again to get it off a molar nerve that caused the unbearable pain. We hope he gets it perfectly place this time, so we can get the maximum growth of the jaw.

KT had a few really good laughs today, and says it hurts when she smiles! The first was when I showed her how much her new dog, Oreo, is costing us, since she, too, needed surgery. What made her laugh was that the Vet's invoice named her "Oreo Whicker," and her cousine (Jeff's dog), "Taz Whicker." For some reason, that just set her off giggling for a couple of minutes! It was fun to see her in such good spirits.

We enjoyed our two days with Cher's Annual CCA Retreat (Children's Cranofacial Association) in Louisville, Kentucky. Met many old friends (Meg, Francis, the Crawfords), and made many new friends. We went to the Louisville Science Center, where we had lots of fun on Friday. Today (Saturday), we went and saw Cars 2, which was a pretty fun flick.

Thanks to everyone for their continued prayers. If KT rebounds quickly from Monday's revision surgery, we hope to travel to Michigan Friday to spend the holiday weekend with Cami and her family (KT's oldest sister).

Number 3

We just got called by Dr. G.  He was unable to secure a custom-made device from Germany in any less than 6 weeks, so he wants to go ahead and reposition the top pin again early Monday morning.  We asked about the idea he had brought up earlier of the "halo" device, and he said we could go that route, but as he'd considered it over the last couple of days, he decided we wouldn't be able to get the same amount of bone growth with it as with the normal device she now has on.  So he wants to try one more time to reposition the pin so as not to cause severe pain.  I don't know what to think.  I asked him why he thought he could find an area that would work when he has said how difficult it is to find any workable space in there.  He said that this time, he'd take more time to "peel things back" and look deeper to ensure he stays away from teeth and eyes.  Please give us some feedback!  We need some input here...  (send to whick@juno.com)

Treading Water

No word from Dr G for 2 days now on how we can get past this latest roadblock. We need to start making progress again! Time's a wastin'. Please pray he can find a solution ASAP. KT's doing ok, but not very active.

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Set-back

During Sunday evening's turning of the screws, the hardware came up against one of Katie's tooth nerves and caused her to hit the roof on the pain scale. She was frantic, and we didn't know what to do, so I called Dr. Gordon's cell phone directly. He said to back off the screws to where they were before we turned them tonight. That seemed to relieve her enough that we could get her settled down to sleep for the night. When we saw Dr. Gordon today, he said that KT was by far the most difficult distraction he's ever worked with, because of the uniqueness of her anatomy. So, he is calling Germany today to see if he can get a special set of hardware ordered that will allow us to continue the distraction; if it will take too long to get that custom-made stuff, he'll convert to a halo to finish out the lower distraction, even though that type of device is built to do the upper distraction, not the lower. He'd have to jimmy-rig it to make it work for this part of the process, but then it could transition to use in the next phase, or upper jaw distraction. He admitted today that he's having to make things up as he goes forward with her because of how little bone there is to anchor the distractors. We'd be pretty discouraged by now if it weren't for the dramatic increase in airway that we're seeing week to week.

We now have two other Utah families here - one doing the same distraction as we're doing, and another doing a bone marrow transplant. Keep praying for this little gal! There's still a long row to hoe. Thanks for all your support along the way.

Revision

This shows how the pin was moved on the left side in an effort to relieve the tremendous pain KT was experiencing for the first two weeks. It worked wonders! The Dr. believes that because she has no jaw joint (her jaw just "floats" in there), the movement of the distraction was pushing muscle, bone, and nerves, backwards into the skull and pinching it all; maybe even the occipital nerve, which is the nerve that causes migraine headaches. Thus, the left half of her face was hurting so bad all the time.

The only downside to this is that she'll have another scar, but Dr. Gordon says he can make that invisible once we finish with all the surgeries. To have KT feel like doing things and going places is so worth having to have undergone an extra surgery.  CLICK ON PHOTO TO ENLARGE IT.