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Sunday, November 6, 2011

Almost Home!


As you can see, her swelling has gone down enough for her beautiful eyes to shine through a bit! We're in Logan, headed south this morning, so we'll arrive in St. George around 7 pm. Katie will try to go to school tomorrow, and since it's only a half-day, she should be fine. Not sure she's quite up to full days yet, but I think the excitement of being back home and being around friends again MAY be enough to get her through a normal day.

We're still fighting some infection on the right side of her face, but this morning, it looks like it is continuing to improve. The worrisome thing about it is that she can't move her right eyebrow, and I'm almost positive I've seen her move that since the last surgery. So we're not sure what's going on there. The bruising on her leg from where the liposuctioned the fat that was used is still pretty bruised as well, but at least she doesn't limp now, so it must not be quite as sore.

We are READY to have this chapter of life over with, at least for a year! And although we didn't make all the goals we were shooting for, we made significant progress and are feeling grateful for that which was achieved. See you all in St. George real soon!
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Wednesday, November 2, 2011

Heading Home

We set out tomorrow on our 4-day journey home.  KT looks great, despite some lingering infection.

Sunday, October 30, 2011

Count

To set the record straight, this last surgery was #10 for the summer.  Here is a recap (an average of two a month for five months):

1. 1 June
2. 15 June
3. 27 June
4. 20 July
5. 27 July
6. 18 Aug
7. 5 Sep
8. 14 Sep
9. 6 Oct
10. 26 Oct

Let's call it quits for now, okay?

Pirate

The local Catholic Youth Group came by today to do a Halloween trick-or-treat for the kids, so Katie felt well enough for an hour to get dressed up in her pirate costume and go downstairs to listen to the songs and collect some of the prizes they offered the kids. It was good to see her out and about a bit. As you can see, she's still looking a little rough - like a pirate that was in a battle (but you should see the "other guy!"). She didn't last long, though, and is now resting in the tub.

I think we've turned the corner, and she's on the road to full recovery. We just need to be really careful with her and make sure she gets plenty of rest, nutrition, and keep on her medicine schedule. The swelling in her neck has gone down enough that we need to shorten the trach chain, so there is some obvious improvement. Plus, you can now see a sliver of an eye on the right side!

We didn't make it to church today to say goodbye to the good people in the Cincinnati Ward, who have treated us so well during our long stay here. It's been wonderful to have a built-in, ready-made church family for these 5 long months. They've been just great!
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Dodging the Bullet

Well, thanks to so many prayers, KT managed to "dodge the bullet."  Because she wouldn't let the Drs. touch the cyst on the side of her face last night that had developed due to infection, they sent us home for the night with a stronger antibiotic - clentimycine (sp?), and told us to come in the morning so they could lance it.  At 4:30 a.m., KT awoke me, very scared, and told me the cyst was getting bigger and that we'd better go back in.  I looked at it, and sure enough, it was twice the size it had been!  I'm kind of a wuss when it comes to medical issues, so I awoke Pam to show and tell her.  When she tried to move KT's hair out of the way, one of the strands that had stuck on the sore caused the entire thing to break open, and it just started oozing - completely draining!  It was great, because it released all the pressure.  So we decided to just wait to have it be seen later in the morning. 
This morning, it looks VERY good!  The Dr. saw it and said to continue on the harder antibiotic and do warm compresses 4 times a day, and that it will be just fine.  So...to KT's delight, no anesthesia, no operating room, no knives, no NUTHIN'!!!  She is one happy camper this morning.

It was a very stressful 15 hours, though, for all of us.  THANK YOU FOR YOUR PRAYERS - we KNOW they made a difference and that the Lord is watching over our little KT.

Saturday, October 29, 2011

Admitted

KT was devastated when the ER Dr.just told her she'd have to stay in the hospital overnight to have the abcess that's developed on the right side of her face surgically cleaned out. We were supposed to be done with hospitals! Pray this will go quickly and be final!

Fire & Ice

The RM House gave us some tickets to Disney on Ice, so KT enjoyed that this afternoon.  Shortly after, she started with a fever, and we noticed a cyst developing on the right side of her face.  Called Dr Gordon and he said to get her to the ER so they could get her on stronger antibiotics.  He says it's not uncommon, since they have to go through the mouth to inject the bone and fat, and that hopefully the stronger antibiotic will take care it, but there remains the possibility that he'll have to go in and surgically wash it out.

More prayers are in order.  We're in the ER now.

Friday, October 28, 2011

Leaving Hospital

Katie's getting dressed right now to go back to the Ronald McDonald House.  She's still very swollen, so much so that I'm not going to post a picture just yet.  But her pain is well under control, and she's anxious to get into the tub!  Her right leg hurts quite a bit to walk on - they took the fat from her thigh that was injected into her face.  We didn't expect that to bother her so much, but I do remember when they took bone from my hip to graft into my leg, that site did hurt for quite awhile.

She's excited about all the Halloween festivities planned this weekend at the RMH, so it's good that she's getting out of the hospital this quickly.  Pam isn't feeling too good this morning, so we need to let her get some extra rest to stay well.

Thanks again for your prayers.  We'll post a picture later today once we get her cleaned up.

Wednesday, October 26, 2011

Comfortable

Katie is resting comfortably tonight.  The surgery was a success - she was in the OR from 9:15 a.m. to 1 p.m., so it definitely took some time.  She is so swollen in the face that you wouldn't recognize her, so we're going to spare you the graphic view until the swelling goes down some. 

We know she's doing well because she said she was hungry while still in the recovery room!  That's NEVER happened before!  They have her on a PCA (Patient Controlled Anesthesia) pump, where she has total control of how much pain killer to receive.  It allows for a small dose every 7 minutes, and it makes her extremely sleepy.

Pam has gone back to the RM House to get a good night's sleep, and I've got the night shift here at the hospital.  We might not have to be here longer than one night, but I think more realistically, we'll be in here for 2. 

Thanks for your prayers - I honestly believe they made a difference, and that the recovery here will be quick.  She has a more distinct chin, filling in of her temple clefts, another layer of cheekbone, and revision of the pin scars to make them less noticeable.  So Dr G done good!

Recovery

She's out of surgery, in recovery; very swollen and in pain even though this one wasn't supposed to be extremely painful.

Doctor & Patient

This shot was taken two days ago during the final pre-op meeting with Dr. Gordon, the brains and hands behind all of Katie's surgeries over the last several months. The discussion was good, as he helped us understand why we'd lost some of the gained airway. He drew some pictures to explain the unique anatomy of Katie's face, showing us some of the "surprises" he encountered during surgery - spots below her eyes where most Treacher Collins Syndrome at least have some bone, but Katie had none. Thus, he was not able to do the textbook style cuts to create what the extension we were looking for. He's really had to be creative with her, and says that her case will become a basis for doctors to build upon as they learn more about how to deal with similar cases.

We like Dr. Gordon a lot, because he really cares. He spoke of some of the dangers involved with all that he's done, and he has taken extreme care to keep her vision safe during it all. He spent almost an entire hour with us on Monday, which I'm certain was more than was scheduled. We appreciate his efforts to explain it all to us in layman's terms.

We are now sitting in the hospital, awaiting her final surgery of this extended summer. Today she'll get another layer of cheekbones, filling in of the clefts in her temple region, extend her chin just a bit, and revise the scars created by the jaw distraction pins. Then we're to let everything alone for a year to allow mostly the upper jaw to solidify before anything else can be done. He says her lower jaw is plenty hard already, but that upper jaw started with such poor bone that it is still a bit loosey-goosey and needs time.

He gave us the option to do more with her eyes and nose during this surgery, but after talking about it, we all came to the conclusion that those things would need to be redone again at the time we do the next jaw distraction, so why do it twice? Our goal is to just finish things up and get us home and back to a normal life, so that's what we're going to do.

Thank you all again for your prayers in her and our behalf. She's only supposed to be in the hospital overnight this time if all goes well; we'll let things heal for a week and then head for home on Thursday, 3 Nov, arriving Sun, 6 Nov. She is VERY excited to get back to school and have her own bed, her friends, and her dog. (Anyone know how we can get her dog trained so we don't have the stress of a pooping dog around the house??)

I'll update this blog again once she comes out of surgery, or at least by tomorrow.
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Saturday, October 22, 2011

Dad's Back

I made it back to Cincinnati during the wee hours of the morning Saturday. Pam and Katie seem fine. This shot was taken a couple of days ago when the gal came to the Ronald McDonald House to do braids for any of the kids who wanted one. Doesn't Katie look good? She can't close her mouth anymore, which is too bad, and her teeth don't meet, which is too bad. But at least we have some airway left open! So we must count our blessings.

We're still not exactly sure what we're going to shoot for during the last surgery coming up on Wednesday. We do know he's going to release the clefting in her temples, and add another layer of cheek bone, plus some chin bone. If we can do anything to help the mouth and teeth close together better, I think that would be good, but I'm not sure that's possible without more hardware, and we can't stay around any longer to have hardware removed. This needs to be a "walk-away" kind of surgery, where once she has had a few days to recover, we can just leave. I need to be back to work by Monday, 7 Nov.

Thanks to everyone for the letters, packages, gifts, prayers, fasting and love! It's all meant a lot to all of us. Please don't send anything via mail that won't arrive by Wed, 2 Nov, as we plan on heading for home NLT Thu, 3 Nov in the a.m.

Monday (day after tomorrow) is Pam's birthday, so we're going to find a great way to celebrate her life! She's been the main trooper in all this, besides Katie, and she deserves a day of joy centered on her.

We send our love and greetings to all. - Glenn
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Tuesday, October 18, 2011

Miraculous Renewal!

It's back!!! GOOD NEWS!!!!!.........The airway is BACK!!!!!! Not a large one, only 7mm, but it’s an airway!!! It appears that its disappearance last week was due to swelling, so we are VERY relieved! It was as large as 17mm at one time, so it's less than half what it was, but it's still there. That miracle we were looking for is still "in the works" after all. THANKS for your prayers.

[From Pam] We walked into the appointment Monday, talked to the nurse, then Dr. Gordon and Dawn came in. The first thing out of Dawns mouth was, “How many people follow Katie’s blog? We have had so many calls asking “What happened to Katie’s airway?” So there you have it, power in the internet, getting the message to all those who love Katie and then in turn they contact the Dr. they trust to find out what happened. I figure it’s the people who’s children have seen him and depend on him to help their kids decannulate.

Dr. Gordon thinks the airway was swollen and is now getting back to normal. He also believes he can make the airway stable by doing a second lower jaw distraction in a year or so, with a plated upper jaw distraction after the bone heals well, in, yes, about a year.

[Glenn] We will go ahead with the final surgery on 26 Oct (is that next week already???). Dr G will work on the clefting in her temples, and add some chin, which might help sustain the airway even more than it is now. Then, we hope to come home by about 4 November. Is Katie ever excited to get back to a "normal" life!
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Saturday, October 15, 2011

Comfort


Pam and Katie are in Room 44 finally tonight.  So the address is:

c/o Ronald McDonald House
350 Erkenbrecher Ave, Room 44
Cincinnati, Ohio  45229

They are VERY happy to be in that much more comfortable place.  Thanks for your prayers!  We’re still trying to decide whether or not to go forward with the Oct 26th surgery, but I think we will.  Love to all,

-          Glenn

McD's

Pam and Katie finally made it into the Ronald McDonald's House in Cincy.  Yeah!  MUCH more comfortable.

Wednesday, October 12, 2011

Setback

What is going on? Katie is having trouble with choking, and as you can see from the x-ray taken yesterday, her new airway is gone! We are distraught, trying to understand why all that incredible airway has disappeared. Please pray for her - we've got to get some answers and save that airway. It all may have been too much, too fast. We've had so much faith and hope, and need to regain it after seeing this picture. Pam and I are going to fast from Thursday lunch to Friday lunch to see if we can get some increased understanding of where to go from here. We can't have the entire summer's efforts go up in smoke! Please pray with us, that everyone involved can be inspired to know how to proceed. And if you'd like to join us in our fast, please do.

The outer cosmetic changes are a nice side benefit, but our whole purpose was to establish a permanent airway. Dear Lord, help us get that airway back, please!

All our love,

- Glenn, Pam and Katie
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Thursday, October 6, 2011

Surgery #9

(Written by Ali):

Hi everyone,

Today Katie’s surgery went well.  We got to the hospital about noon, and went back immediately to pre-op.  There we waited about an hour and ½ until they came to get her about 2pm.  Dr Gordon came in and said hello, Mom went back with Katie.  They did not give her Versed, which is the calming drug they usually give her.  Mom said it a few times that she usually gets that, but either they didn’t realize she was trying to tell them to order some, or understood that she had been doing well so they didn’t give it to her.  Katie’s OR today didn’t have an induction room, so Mom was not able to stay with her while they had her breathe the gas to put her to sleep.  That was not good for Katie, and she had a difficult time as Mom left.  Later Katie told me the gas wasn’t working fast, so they had her take a deep breath of it.  To her dismay.

It was only 35-40 mins until Dr Gordon met with us to tell us it went great, her bone is solid and he is really pleased with everything.  (We recorded that convo that I’m sure mom will share more of later).  Then Mom went back 10 minutes later to recovery and we left the hospital about 4:30 pm.  Immediately Mom ran to the cafeteria to get Katie mashed potatoes and gravy.  She ate a lot of it in the car on our way to the store.  She didn’t lke the gravy because it was too salty.  But I bought a few donuts and she ate a good quarter of a chocolate cake donut.  She scraped off the frosting of most of it, but she was totally lovin it.

So things went well, she says it feels weird.  But she is totally stoked to be able to eat now.  Grateful for a quick surgery day in and out.  We are not in the RMH yet, we stop by each day to see if any update…maybe tomorrow.

We are going to watch Hocus Pocus now.  Goodnight! Love you All

Ali, Mom, Kate, Wade

Wednesday, October 5, 2011

Back in Cincinnati

Pam, Katie, Ali & Wade made it back to Cincinnati late tonight (Wednesday).  She has surgery tomorrow morning (Thursday) to get her mouth opened up after having been wired shut for 3 weeks.  She is STARVING, and can't wait to eat something by mouth!  I'll head out to Ohio on the 21st of this month to be there for her final big surgery on the 26th (and to help celebrate my dear wife's ____th birthday on the 24th)!

The memorial service for Pam's Dad was very nice and uplifting.  It was nice to see so many family members, and to reminisce about Boyce Stone's great life of service. 

Please continue to pray, as this has begun to wear on us all.  Thanks!

Saturday, September 24, 2011

Grandpa's Gone

Pam's Dad died today.  So, Pam, Katie, Ali & Wade will jump back in the car early next week to head back West.  The funeral will likely be Saturday.  The only trouble is that Katie will have to postpone the surgery to open up her mouth, since it was scheduled for Thursday! 

We love Grandpa, and it'll be nice to celebrate his life all together.

Wednesday, September 21, 2011

Tongue Aerobics

This surgery journey has created some very interesting situations, but none as interesting as the TWO caused by the latest surgery, a week ago today.

1. After Katie came out of surgery, she realized her tongue was STUCK between her teeth! And, since her mouth was wired shut, she couldn't get it out. It didn't hurt, but it certainly kept her from speaking. So, one of the residents came by and tried to pry her teeth open enough from the side to allow her to get her tongue out. He was partially successful, but couldn't get it all the way freed. Katie kept working on it herself that night, and was finally able to give her tongue complete liberty to move inside her mouth!

2. Last night, the ring that goes around her back molar to anchor her braces, came loose insider her mouth. What do you do with a ring inside, that you can't spit out because your mouth is wired shut? Isn't that the oddest predicament you've ever heard of?

Pam called Dr. Gordon, and he said to have her swallow it. But Katie was afraid to do that, because she has had issues in the past with choking. We called her orthodontist in Utah, and he said it wouldn't be the first time one of those was swallowed, but he couldn't feel comfortable recommending it.

In the end, Katie decided to hold it in her mouth all night and wait until they could see the Dr. in the morning. By morning, she was ready to get rid of that blasted ring! They went to the hospital, but Dr. G was in surgery, so they saw one of the Residents. She said that they should definitely NOT cut the wire to open her mouth, as that would indeed undo much of the progress made. So she told Katie she'd have to keep it in her mouth until surgery next Thursday (8 days away). Katie wasn't at all happy with that determination.

She went home and started doing tongue aerobics and finally managed to work the ring out the side of her mouth through a narrow space between a couple of teeth! Imagine her relief! So it all worked out in the end. I'll bet no one could even come up with such an unusual situation - more bizarre than fiction!

The swelling continues to subside,and Katie's new face is looking wonderful. Here she is with her little nephew, Wade. She LOVES having him around!
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Monday, September 19, 2011

New You!

We saw Dr. Gordon today. His whole staff began to "oooh" and "aaaah" at Katie as we entered the hall with the check-in nurse. The Dr., Dawn and Stacey, just walked into the room with us and the nurse eventually left because no way could she check us in with all the admiration going on.
Dr. Gordon says Katie has made the greatest transformation of any patient he has ever worked on. Katie's swelling is down today. She slept well last night, and her pain is improving. I attached the sweetest picture of Katie and Wade, Ali in the background. Katie's smile is the sweetest EVER!!!
You'll love it. Glenn you gotta post it on the Blog. Dawn thought Dr.
Gordon was making her face look like mine. She thought there was a strong family resemblance. So fun to have her say that. Love it!!!
He is not worried about the teeth. He said we will have to do that work later with the orthodontist. So I'm going to stop stressing about it.
He will do other work later to make the teeth go over the outside of the bottom teeth and if she looses teeth we will replace them with implants.
Also he revealed to us he used a hormone in the bone in her face called BMP2. It should help it to solidify and not reabsorb. She goes back into the operating room on Thursday Sept 29th to remove the wire. Anyway, it's dinner time and we are starving, no other meal has been served so we are Hungry!!! Talk later. Love Pam/MOM/Grandma

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Saturday, September 17, 2011

Ukelele


Ali reporting from full day #2 in the hospital.  It was a pretty good one!  I arrived at about 9:30am, and Mom hung around for 1 hour.  The high points of the day were many.  Mom came back around lunch time with a special treat!  Katie received a package from Alpena Michiganites, namely Camilly and Co.  My favorite thing was Cade’s green truck that he chose to send Katie.  Love that. 



Katie started normal feedings, instead of pedialite..so this is great.  She is still suffering from the extreme trots (sorry, Katie.  Your life is on display for us right now.  Sorry.)  So we are hoping to get that cleared up before she leaves the hospital. 



Good news: IV wouldn’t flush so THEY JUST TOOK IT OUT!  Hallelujah.  Katie hates that thing.  Bad news: They had to draw a blood sample today and since her IV came out and wouldn’t work, they had to come and stick her.  FOUR DIFFERENT PEOPLE!!!  Shoot.  She hates (understatement) that.  Her veins are small and not easy to see, so the poor gal got poked in several different spots (and digged at! Ew) before they FINALLY found a vein that would pop up.  Guess where it was?  On the knuckle of her index finger on her left hand!  Ouch.  And ouch it hurt me too, because she was holding my hands and SQUEEZING THE LIFE out of them.  First she squoze (I know. Not a word.) my forearm and that really didn’t hurt.  In fact, she was PINCHING my arm as the pain got worse and I giggled about that.  Then she went to my left hand and that really hurt because my thick ring was in the way.  Well, hopefully it helped her.  She was NOT happy about that part of the day.



But, luckily RIGHT after that the music therapist came in.  I liked her!  She brought her guitar and asked Katie if she wanted to get the ukulele.  Katie said YES.  And so together they practiced chords then played a Taylor Swift song, Bruno Mars, and Rascall Flatts.  Katie sure is quick with that!  I was very impressed.  And Wade loved it too, he was talking through the whole thing.  It was such a lovely time for Katie, I know she really enjoyed it.



After that my little ducklings took a long nap (even Wade. He is the non-sleeper here!).  Then Katie and I played some air hockey on her ipad after cleaning her mouth. 



She is at the peak of swelling today, it seems. Her left side is worse than the right and seems to be bruising around her eyes.  Her lips are really dry, so we try to keep them moisturized with aquaphor.  She hates that, too.  I asked her if she had looked in the mirror yet, and she said yes.  The only thing I could get out of her as far as how she is feeling emotionally is that she is glad to have the RED device off.  I AM TOO.  That blasted thing.



We talked to Lyndsey on the phone right before Wade and I left.  Katie even got up to walk me and Wade out and take a stroll around the unit.  That is really good.  Next goal is to get her showered and wash her hair.  They brought in this shower cap that you warm up in the microwave and put it on and rub it around and it’s supposed to clean her hair.  I have no idea how that works and my curiosity was peaked to the max when she told me.  I doubt it would do much for Katie’s beautiful, thick hair though.



Katie looks really different.  It is an adjustment for me… I find myself looking at her and thinking about her other face and how she’s like a different person.  Then I look at her body and its’ the same and I know she is KATIE still, but she really is different.  I hope she adjusts well!  I mean really she got a NEW FACE.  Who does that happen to????  She still has those eyebrows…oh those eyebrows.  Her expression says it all when those are lifted. 



I would like to share a very special moment for me that happened yesterday.  Katie had fallen asleep and I was sitting next to the bed.  Her mouth pools liquid/saliva and I didn’t want it to drip since it’s still bloody and we had changed her and cleaned her up, so I tried to gently suction that.  She opened her eyes and looked at me and I apologetically looked at her and whispered “sorry!!!!” as I really did not want to disturb her.  Our faces were 5 inches apart and she brought her hand up to my cheek and started rubbing.  At first I said “what?” thinking do I have something on my face, does she want me to back away, is she trying to tell me something?  Then she just kept rubbing and looked right in my eyes and I realized she was just stroking my face.  It took me aback.  I looked at her and gave her a kiss on the forehead and said I love you, Kate.  She signed I love you back.  It was a really tender moment for me.  Expressing feelings honestly and openly is pretty important to me, and getting those emotions from other people is very important.  Katie is still learning to express feelings, so this was a momentous moment for me.  It makes me cry a little telling you.  I sure am grateful for this time to come closer to Katie and Mom.



Well, we are hopeful for less swelling, less diarrhea, and no need for strong drugs tomorrow.  It will be really great for her to be back at the RMH and we can hang out here.  Things are going well, thanks for your prayers and love!



Love to all,

Ali


Thursday, September 15, 2011

The Day After

From Pam:

She's more swollen today, but I believe her pain level has gone down a bit. Her stomach is doing better, she's on half pedialyte, half ensure. So that's a step in the right direction. Her stomach hasn't hurt at all. She has ask several times today what the doctor did to her, but she doesn't want to see herself in the mirror yet. She knows that she is really swollen. I think she's looking terrific!

She received 3 helium balloons from her sisters. Katie was delighted they thought of her. The balloons were tied to a vase with two smiling flowers made of pile fabric and a bear hugging the vase. She was just thrilled. It definitely lifted her spirits. It also helps to have Wade around. She forgets all her troubles when she is holding him.

The doctors are saying she is not swelling as much as other patients. So we have her packed in ice and hope that will help even more. Ice seemed to help a great deal with the LeFort procedure. She may get to come home tomorrow if she continues to hold her feeds and move away from the IV meds. So we'll see. I'm taking it one day at a time and I don't want to bring her back to the Ronald McDonald House until pain is manageable and she is ready. Thanks for your prayers.

I really feel that putting bone in her face was inspiration. I have worried over the lack of bone in her face. I've wondered how he would ever bring her jaw together with broken apart, spaced out teeth in her upper jaw. I believe Dr. Gordon's choice to put bone in her mouth was the Lord inspiring him how to solve this problem. It wasn't one of his options before the surgery started. So, I will say it once again, the LORD is in CHARGE and helping us every step of the way!

Thanks for the call Cami, Katie loved speaking with each of the kids, I guess I should say listening to each of the kids. Katie isn't speaking at all! I send my love and thanks, love Pam/MOM/Grandma
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Wednesday, September 14, 2011

Early Cheekbones

Dr. Gordon surprised us again today. We thought today was to be a pretty easy surgery (#8 since 1 June), just to wire her mouth shut and bring that new upper jaw down for her teeth to meet. Well, he got in there and because her upper jaw still had so little bone, and the bone it did have was not good quality, he called out to the waiting room to ask Pam for permission to do some bone grafting on her upper jaw. He said it would take far too long to create enough good bone up there to stabilize things adequately. Pam gave her approval, and boy, did he go to work! Not only did he give her bone to boost that upper jaw, but also placed the first layer of cheekbone AND worked on her nose!

Doesn't she look great?! I mean, you've got to get past the blood, but you can definitely see her face coming together. It's just beautiful to me. The bad thing was that I had promised her I'd be there for the "BIG" surgery, thinking it was scheduled for 26 October. Today's was supposed to be relatively minor. Now, she's recovering without me there to hold her hand, sing into her head, and just hug and pray with her. It was hard on both of us tonight as she called and I said a prayer with her over the phone. I'm so glad Pam, Ali and Wade are there. She needs family! She always wants to hear the voices of family members that aren't there - right after surgery is a tough time for her.

The swelling will get pretty great over the next few days before it starts coming down again, so I'm glad to get this early shot that shows what she'll look like. Our TCS friend, Carrie, had these cheekbones implanted earlier this summer, so we kind of know what to expect. Carrie, who is 18, said that the recovery pain was not nearly as bad with this part of the process as it was with the jaw distraction, so I'm hoping that'll be the case with Katie, too.

When I talked to Katie tonight, about two hours ago, she couldn't really talk. But when I mentioned that it must be nice to be rid of the R.E.D. device, she nodded her agreement to Mom, who relayed that response to me. If I'm remembering right, she's been wearing that thing since July 20th, so almost a full two months! You can see in the picture where the R.E.D. injured the temple area; those should heal completely, and the hair follicles will regenerate, the Dr. assures us.

I'm excited for how great she's looking! Now, let's all pray that her recovery goes well, that no infection sets in, and that her pain is minimized as much as possible. And that Katie's normal, jovial, full -of-life self will quickly return to her spirit. She has been through so much. I know she's going to be vey pleased with the end result, but what a row to hoe to get get there! Thanks for your faith and prayers.
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Saturday, September 10, 2011

Ronald McDonald House

Ronald McDonald House Room 68
350 Erkenbrecher Ave
Cincinnati, OH 45229

They're very happy to be back in the much more comfortable RMH.  Looks like they'll be there until early November, so feel free to send Katie any letters at the above address, or by email at katiewhicker@gmail.com or find her on Facebook.  She had a rough night last night and called me at 11:30 her time.  It was good to talk to her, and by the time we hung up she was feeling better.  I hope she slept well after that.

Wednesday, Pam thinks they are going to remove the R.E.D. and put in an Archbar, "any one of various types of wires, bars, or splints that conform to the arch of the teeth and are used in the treatment of fractures of the jaw."  They have a pre-op appointment on Monday to get the full details, as this is a different direction than what we had at first understood.  I'll be anxious to hear the full plan.

Monday, September 5, 2011

Surgery #7

Today was a very long day for Katie, Pam and Ali. They arrived at the hospital at 6:30 a.m. on a holiday, so the normal routine at the same-day surgery center was not in place. Everything took longer, but we are glad Dr. G was willing to come in on a day off to make things right for little KT. This photo shows how he got the R.E.D. back up in place, pulled pretty hard on her lower jaw to get it back up where it needs to be, and I'm not sure what else he did.

He said she had definitely lost some of the gained airway due to the falling of the device, but that he will get it back. It will be important for them to be right there in Cincinnati throughout the duration so that he can handle any unforeseen problems immediately. We cannot afford to let ANY of the airway expansion be lost after the long, hard and painful struggle it has been to gain it in the first place!

Katie awoke from surgery in extreme pain; that is always so hard to see, and Pam is SO strong. She can handle that so much better than I can. I just get impatient and ask the nurses why they can't keep her pain under control - I know there are medications that will do the job, so why do we have to wait until she's crying out in such pain to give it to her? Anyway, I was flying this morning with a student when she called and wanted to talk to her Daddy, but I finally reached her 10 minutes later, and gave her a blessing over the phone. It seemed to help calm her.

They waited around in the hospital until about 7 pm tonight, their time, so it was more than a 12-hour day. They're grateful to be back at the hotel, now, so they can rest. I think having little nephew Wade around at the hosptial was a good diversion for her - she loves little kids so much!

Hopefully, everything will start to heal again now and she can get into the Ronald McDonald House and work on her school assignments. Dr. G wanted to keep the original 14 September date to get in there a do a little more, but I'm not sure what. The big surgery is still set for October 26th.
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Sunday, September 4, 2011

Early Surgery

I just got the word she'll be reporting in at 0630 for an 0800 EDT surgery, which is 6 a.m. Utah time.  So wake up praying!!

In Ohio

They're back in Ohio safely.  Tomorrow KT goes under anethesia for the 7th time in 3 months, this time to fix the drooping halo headgear.  I'm certain Dr G will take the opp to do more than just that, as we were 1/4" short of the goal in getting her upper jaw where it needed to be.

They're on a waiting list to get back into the Ronald McDonald House, so please pray that will happen soon - it is such a nicer environment, includes meals, and is cheaper.

Thanks to daughter Ali for helping Pam drive, and for being there all month as a support!

Friday, September 2, 2011

600 miles to go

Pam, KT, and older sister Ali with her new infant, made it as far as Independence, MO, tonight safely.  KT's RED device keeps slipping further down her head, causing discomfort, so we're glad she's got an OR appointment in Cincinnati on Monday to correct it.  So sad that they had to go all the way back there to get this relatively simple adjustment made, but no one here dared touch it. 

Tomorrow they'll go the last 600 miles.  So glad I got new tires, front brakes, oil change and beefed up the shocks before they left.  That makes me feel more secure that they'll be safe.  Thanks to G'ma & G'pa for getting Ali & Wade to the rendezvous point yesterday to make that first day's travel more efficient.  And to Jeff & Lynda for taking the dog, Oreo, back for now!  I certainly don't have time to take care of a dog while I'm all alone here, even though I do kinda like the little gal.


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...

Saturday, July 30, 2011

Improving!

KT slept for 5.5 hours straight last night! And this morning, we were able to get her hearing aid on, which really helps her feel better about things. Here's a photo of the new pieces added to her R.E.D. device; it's pretty daunting. We don't start turning those upper jaw screws until tomorrow, so we'll see how that goes. This morning, she's wanted to watch TV and find a Wii or PlayStation, and eat some soup! So she's definitely feeling more like herself, though we won't get her home until the pain is better controlled. Right now, shes on that PCA on-demand pump, so she seems to use that a lot. Today, they'll start getting her up and walking and sitting.

Pam and I have been switching off again - she takes the day shift and I take the night. BUT, we've had some help now! G'ma & G'pa are helping out during the day with Pam, and Rache helps me big time at night! Thanks, you three, for coming all the way out here to help - it is much appreciated!
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Out of ICU

KT's been moved to a regular room. Not sleeping much, but meds are keeping the pain levels manageable for the most part. Can read with left eye now, and the swelling in right eye is going down such that by tomorrow she should be seeing. Swelling in head, where halo rests, prevents placement of hearing aid, which is frustrating for her. We spent 10 minutes trying to get it snapped on tonight and it just won't go! She doesn't like to be without it, and I have a hard time speaking loud enough for her to hear me without it. Aunt Rache has been a great help with the night shift - thanks, Rache!
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Thursday, July 28, 2011

1st Morning After

She had a rough night; coughing up blood (which was expected); fever (which scared me, but they told me it was expected for the 1st 24 hours); and plenty of pain to go around.  But the PCA (on-demand medicine pump) is doing good - I just hit it whenever I see her heart rate start to go up, and it provides a surge of medicine directly into her bloodstream through her IV.  Her right arm really hurts - she won't even move it, so they took the IV out of that arm (they still have one in her foot and another in her left arm).  That relieved that problem a bit, but she still won't move that arm, so I don't know if it was left in a weird position during surgery, or what. 

She was really sad during the night that she couldn't see, but this morning, she said happily that she COULD see a little bit out of the left eye!  She was very pleased with that.  But it may continue to swell more, so we'll see. 

She said, NEVER AGAIN!  It just is no fun to wake up in this kind of a situation.  She can speak - at first, she tried to sign, and I am so bad at signing that she got really frustrated, so just started talking.  And it's intelligible, so that's good.  Pam should be here any minute to relieve me so I can go back and get some sleep.  This old body has a rough time staying up for 24 hours straight!

Keep praying - she's not out of the woods yet.  The fever is the thing that concerns me most, but they seem to think it's fine and will subside quickly by evening.

Wednesday, July 27, 2011

ICU

She made it through successfully, though the Dr had to do some things differently than he had planned because her facial anatomy is so unusual. I'm finally up in the ICU room with her, and Pam has gone back to the House to get some rest. I won't be posting pictures of her here, but she actually looks better than I'd expected. Right eye quite swollen, and lots of wires coming out of her mouth area, but it looks like it's set up to do the job of growing new bone in her upper jaw, just as it was grown in her lower jaw.  We'll get some pictures out tomorrow after we get her cleaned up better.  She probably won't be awake all night.

Out!

Dr G just came down to report to us at 8:30 pm EDT. 5 hours total in OR. KT did well. He had to do things differently than planned due to her unusual anatomy. We haven't seen her yet. They're going to keep her pretty sedated all night. We'll tell you more when we know it! Thanks for your prayers!
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Still going

Trying to stay calm after more than 4 hours in the OR. We've received several updates that "all is well," but it's nerve-racking when its already gone more than an hour overtime.
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Two updates

KT was in the OR at 3:33, but Dr. Gordon didn't enter until 4:39 pm - all that time was spent getting everything ready.  Vicki, the nurse, just came out to give us another update at 5:50 pm, saying Dr. G had just been "into" her for 1/2 hour, so there was another bunch of time spent removing the hardware, etc.  He was in the middle of making the bone cuts when she came out to give the updates.

3's

We left her in the OR for the Lefort 3 at 3:33 pm EDT, for a 3 hr procedure. She did very well until the roll to the room in the bed, and then she quietly sobbed, saying she didn't want to do this. It is a very tough thing to go through.

Three's a lucky number, right?
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Almost time..

A collage showing parts of life with an R.E.D. device. HOPING TO GO IN TO SURGERY SOON - within 10 minutes. It is anticipated to be a 3-hour surgery, and then she'll go directly to the Intensive Care Unit (ICU). We won't see her for quite awhile - it will be a long day of waiting, so don't expect any updates until late tonight. A lot of swelling is expected.
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Cowgirl!

We're in the induction room waiting to go into the operating room; it was supposed to happen at 1:30 pm EDT, but once we got here, they told us there was a delay. It's now a quarter to three. Here are a few fun pictures to document the week with the R.E.D. Of course, she'll retain that device after this surgery, but with more adornments.

She's had several very good days. Yesterday, we visited the Wright Brothers Museum, and the Air Force Museum in Dayton. Both were very enjoyable and educational.
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Tuesday, July 26, 2011

KT's Addresses

C/o Ronald McDonald House
350 Erkenbrecher Ave Room 81 Cincinnati OH 45229

email: katiewhicker@gmail.com
Facebook: Katie Whicker
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Sunday, July 24, 2011

Heavy Head

Here's KT with the R.E.D. device on. For this week, we're just turning the top screw to pull her lower jaw up to its proper position. The turning doesn't seem to bother her at all, so that's good, but the pins in her skull are troublesome - mostly on the right side, because they are very near to where her titanium screw implant is located, which holds here BAHA (Bone Anchored Hearing Aid) in place. However, she's had a couple of really good days. Today was especially nice because her Young Women group at Church Skyped with her, to let her know they're thinking and praying for her. They also sent a Care package that she received yesterday. Since friends are EVERYTHING to KT, that was especially uplifting.

The other neat thing about today was the G'ma & G'pa Whicker and her Aunt Rache arrived from Utah! So that was really fun!

Note KT's use of the iPad she received just before we came, as the Student of the Year at Dixie Middle School. She's used it communicate with us when she can't speak, or when she can't make herself understood. It has been a very useful tool!

Still looking to the big LeFort surgery on Wednesday with faith and anticipation. It's purpose, once again, is to create new bone to pull her upper jaw out to meet the new position of the lower distracted jaw.

KT does say that the RED is heavy and makes her neck sore; it actually weighs less than a pound, but you can see that just that much would be pretty straining on the muscles that used to just hold up her head. She's looking for a good neck massage if anyone wants to volunteer!

Thanks for your prayers of faith in her behalf.
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