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Wednesday, August 31, 2011

Oreo

KT will miss her new little dog, Oreo, as she heads back to Cincinnati for two months.  Bon Voyage, my brave little trooper girl!  Soon this long ordeal will be but a fading memory.  I love you!


Tuesday, August 30, 2011

Back to Ohio

Unfortunately, the facial surgeon here in St George was unable/unwilling to do any adjustment on KT's RED device, so we are forced to get her back to Ohio ASAP.  Because of the holiday weekend, it won't do us any good to get there sooner than Monday for a Tuesday procedure, so Pam, KT and our #4 daughter, Ali, will start East on Friday.  As you can imagine, KT is pretty sad about leaving - she has so enjoyed being home with her friends.  But, we've come too far to stop now, or to let this setback undo the tremendous progress that's been made.

Why is it falling?

This shows the difference of how the RED was placed originally, and what it looks like today. Quite the difference! Thankfully, we found someone here in St George who has experience with the RED, and we'll see him tomorrow. Hopefully, he can help. We don't like that it's allowing some slumping of the new chin, too.
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Monday, August 29, 2011

Fallen Angel

KT's "halo" (RED device) is falling on the right side.  We tried to reposition and tighten it last night, with her screaming bloody murder the whole time, but it's only a temporary fix at best.  We need to get her back to Ohio real soon, where she and Pam will stay until it's all removed the end of October.

At least we were able to get her schooling all arranged while she was here.  She doesn't want to go back, but there are just too many complications happening (very loose teeth is another) that we really need to be there.  I, of course, can't go because of work, so daughter Ali has volunteered to take my place this time.  Her little newborn Wade will keep KT's attention - she just LOVES babies!

KT sure enjoyed getting to see all her friends at school and church this week.  Everyone was so good and loving with her.  Thanks to you all for welcoming her with such open arms & hearts!

Sunday, August 21, 2011

Home at last!

Home with Katie; 1899.2 miles in 3 days.  Right rear tire blew an hour after we parked it in garage. 


Friday, August 19, 2011

Utah bound!

It's early Friday morning, and we're just about ready to jump in the car and head from Ohio back to Utah - 30 hours of driving; 10 hours a day for 3 days.    KT went through a little procedure yesterday to even out the wires on her R.E.D. and to check her bone growth.  All looks positive.  We only have to turn the upper screws about 3 more days.  She is so excited (as are we all!) to get back to her beloved home.  Here's Pam's report from yesterday, since there's no time to write this morning:

Katie has shown such progress in the last few days.  She has begun to use a straw well and will drink an entire juice glass size of milk in one sitting.  Sometimes she drinks even more than that.  She has also been motivated to try to eat.  Her mouth must feel enough better to allow herself to experiment with tasting food.  You saw the evidence with the photo of the spaghetti plate I sent yesterday or the day before.  She probably ate approximately, ¼ cup to ½ cup of spaghetti.  One morning she asked me to cook her an egg.  She ate the “white” because she said it “slid down better”.  Yesterday when she got ready, she asked if she could please go to the kitchen and drink some milk.  I said “yes” and she trotted down there on her own.  Now this is a big change.  She has stuck to me like glue since her Dad left.   

                Yesterday, we each received a blessing from the Elders.  It gave me peace to know the Lords blessing will be upon Katie tomorrow (during her hospital procedure).  I’m just so grateful for the Priesthood as a vehicle to receive the Lords light!

                We have also been very busy cleaning up the room and packing.  We have the car about half packed.  Katie and I have our “big” bags in the car and all the extra supplies as well as my sewing stuff.  I have had a goal to finish some table toppers and got three of them put together before I packed up the “Lot” of sewing stuff that I brought.

                Last night we said our “goodbyes” to some the friends we have made here in the Ronald McDonald house.  We have gotten close to Missie Ayers and Taylor, her daughter.  Katie has become very close to Taylor and prefers spending time with her than being close to me, since she has detached herself from my side.  They have watched movies together, tended Lisa’s baby (fed him and held him) as well as just talked and laughed together.  They are big facebook people so, we will stay connected.  There are many others whom we pray for and have a relationship with, one is the Miller family, (the other Mormon family in the house, who has a baby boy, who received Kemo and a bone graft, not doing well at the moment, but their faith is so strong that he will make it through.) We also got to see Kaelin, a 12 yr old from Utah we got to know before his kemo and bone graft, out on pass from the hospital yesterday.  He just had a birthday, for which Katie had to buy him a balloon and candy.  We didn’t think we’d get to see him at all before leaving, because he is supposed to be in isolation. This truly is a house filled with love!  Wonderful people here with a strong sense that the Lord is watching over their children and them as they go through incredibly stressful times.  You connect to people like a big family would.  I often have guests from the Ronald McDonald house come up to me and start talking and asking questions.  We share experiences and strengthen one anothers’ faith during that sharing moment.  Such a blessing to be here and rub shoulders with such strong, wonderful, faithful people!

                Rachael will drive to Louisville airport today to pick up Glenn, who arrives there at 3:15pm.  The airport is two hours away and so I don’t suppose we will see him any earlier than 6pm.  So Katie will get to see him after she wakes up from the distractor revision surgery.  Won’t that be great for her, she misses her daddy SO MUCH! 

                Katie and I are especially grateful to be returning home.  Both of us have been homesick to return.  I think Katie has actually wanted to “escape” back to her prior life, but she has been so brave to swim through, (endure), this difficult and painful process.  She has discovered that she can get through this kind of tough experience with the Lords help.  I know when I first went through difficult health experiences, I was surprised that I came out the other side almost “as good as new”.  However, my heart had been shaped, even refined, with understandings I never would have learned without Christs’ tender teachings.  It’s amazing what he can do for us if we allow the process to refine and shape rather than choosing the bitter, “why me” route. 

                I would like to see Glenn put a “picture progression” of Katie on the blog site.  Her transformation is incredible!  I know that she is not done by anymeans, but the change is so dramatic.  One thing I have tried to get Katie to work on is, swallowing her spit and closing her lips.  I believe she has embraced both of these things.  She is very cooperative and tries to swallow her spit instead of drooling, or closes her lips when I suggest it.  Of her own accord, she has also been watching how others form their words.  Even though her mouth is mostly closed, she is still talking with her tongue outside the top teeth, so she needs to relearn how to form her sounds INSIDE her mouth.  She is smart and with speech therapy will figure this out…….continued healing…. as the blessing suggested. 

                This has been a summer of great difficulty and stress, and yet, a summer of incredible change and blessing!!!  Of course, we are not done yet, but we have a great beginning foundation.  We'll see many of you SOON! We send all our love, Pam

Monday, August 15, 2011

New Plan

The appointment with Dr. Gordon provided a few surprises today.  Looks like KT will undergo a 6th surgery in connection with this series on Thursday this week, the same day we were scheduled to start our drive back to Utah.  It's a minor surgery, mainly to fix the uneven pull on the post in her lower jaw.  But Dr. G is going to use the opportunity to take a good look at how the upper jaw bone is developing; it's very hard to see the new bone growing there, so he wants to "feel" it while he has her under anesthesia.

So, we won't be able to start home until Friday, a day later than planned.  I hope we can still get home by Sunday evening so I don't have to miss any more work.  We'll still return in mid-September, around the 14th, but not for the removal of the hardware, as we had supposed.  Instead, he'll use that date to wire her mouth shut so everything will be solidly in place for a full month before the headgear is removed. 

She'll wear the headgear all the way until October 26th, a full 6 weeks longer than originally planned!  That's when he'll add the cheekbones, and do some chin and eye work. 

Bottom line:  this effort goes on for much longer than we knew.  Dr. G has to modify the plan each step of the way as he determines what is needed.  Pam says KT's profile is really cute now, so it's doing the job.  This new schedule will really impact her schooling, so we're trying to get some online classes going.  School started today here, so she's already late getting going.





Sunday, August 14, 2011

Reds!

This is the towel that KT won at the Cincinnati Reds' game last week agains the Colorado Rockies. (Reds won, 2-0.) She had a wonderful time at the game, and was thrilled to get a towel out of the deal (along with a hot dog, snow cone, and dip-n-dots!)

Pam was worried about driving downtown, but she made it, with the help of Aunt Rache's navigational abilities!

They'll all be home soon....
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Tennis!

Yesterday, KT had the chance to go to the W&S Professional Tennis Open Tournament. Since she loves tennis so much, this was a GREAT thing! Here she is with her Mom. Notice the gigantic tennis ball, which she bought in order to get autographs of some of the players. She got 7 total signatures, but didn't get the biggest one she wanted: Rafael Nadal, her favorite! However, she did get to see hiim play a game. So she was pretty happy camper yesterday, though they got a lot of sun.

Thursday's the day I fly back out to Ohio to pick them up and drive them home. That is, as long as Dr G is happy with the progress tomorrow during the check-up. She'll come home for a month with the headgear still in place. I got her registered to take two online classes - math and language arts. She'll continue with the other classes she's registered for in high school, but will do it all from home for a month or more. Tomorrow, we'll set the date to go back and have the headgear removed.

Thanks for all your prayers! All the pain and misery is paying off, and it's all looking up. We know your prayers had a strong impact on this outcome, so keep 'em going!
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Thursday, August 11, 2011

Great!

This is even a better picture of her. Looking good!

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Progress

This is a good shot of KT's progress as of this week. She's not in any significant pain, though her nose bleeds a little with each turning of the screws. Today, she is enjoying a Cincinnatti Reds game. And she's VERY excited to go to a pro tennis tournament in town on Saturday, where she's lined up to get a few professional autographs!

Depending on her Dr appointment next Monday, we hope to start driving home to Utah on Thursday, 18 August. G'ma & G'pa head for home today, and they'll be sorely missed - their spiritual support has meant SO MUCH! Aunt Rache is staying to help finish out this last week and will drive home with us at the end of next week. We're grateful to her, too, for helping us out since I (Dad) had to get back to work. Today is the first day of school for teachers, so things are pretty hectic here. Plus, I've had to move my entire office because our JROTC program has grown so big, we outgrew the old place!

Keep your prayers going. Pam is still pulling a big load back East taking care of KT. I feel bad that I had to leave them alone back there.

We are very pleased with the way the airway has opened. KT has started to eat some soft solids, and she thinks they taste WONDERFUL! She says applesauce if very out, and root beer tastes YUCKY. But it's nice to see her start to enjoy foods. Her olfactory senses have also increased tremendously, so she's starting to complain about smells she's never noticed before. We still have another month, at least, until she gets her "halo" removed.
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Monday, August 8, 2011

Nasal Air


CLICK ON THE IMAGE TO ENLARGE IT FOR READABILITY

Katie is in no pain, to speak of. She's stronger, happier, more active. And, LOOK at the progress being made in her upper jaw!!! I am just amazed as we enter the final stretch of the airway opening effort. It hasn't been fun, but the desired results are becoming more and more obvious. She can close her mouth, her lips, and you can begin to see how her teeth will eventually be in a place that will allow her to chew normally. We are so happy, we can hardly contain it!

This week is exciting for her, as she was given free tickets to go to a free Cincinnatti Reds baseball game Thursday afternoon, and then to a professional tennis tournament Saturday, where she'll be allowed to get autographs of the athletes! Couldn't be better.

Thanks again to G'ma, G'pa and Aunt Rache for being out there to help out Pam and Katie after I had to return home to work. We'll be back together on the 18th for the drive home; however, her "halo" headgear will remain in place for a full month after our return. When we go back in mid-September, we'll get the hardware removed, and some cheek bones and chin bone implanted.
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Monday, August 1, 2011

Over & Out

They're going through the discharge process this morning, as soon as Dr G gets up there to see her.  Great night last night!  She's in very little pain, and the turning of the screws doesn't bother her at all.  So the only problem is the swelling of the right eye, which they're calling "chemosis."  Katie says it's still blurry out of that eye, so we're hoping there's nothing permanently damaged there, but the doctors assure us it's just post-operative swelling.

I fly home today, as I run a JROTC camp this week.  But thankfully, Aunt Rache and G'ma & G'pa are here to help Pam through the last two weeks before we ALL come back to lovely St. George!  It will be so nice to be home, but it is hard to leave Pam and KT here before it's all completely over.  They'll be fine, though.

Thanks to you all for your love, support and prayers.  They have really been put to good use, I'll tell ya!  And don't stop now...