Sunday, November 6, 2011
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!
Wednesday, November 2, 2011
Sunday, October 30, 2011
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?
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!
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
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
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
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!
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.
Saturday, October 22, 2011
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
Tuesday, October 18, 2011
[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!
Saturday, October 15, 2011
Wednesday, October 12, 2011
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
Thursday, October 6, 2011
Wednesday, October 5, 2011
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!
Wednesday, September 28, 2011
Saturday, September 24, 2011
We love Grandpa, and it'll be nice to celebrate his life all together.
Wednesday, September 21, 2011
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!
Monday, September 19, 2011
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
Saturday, September 17, 2011
Thursday, September 15, 2011
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
Wednesday, September 14, 2011
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.
Saturday, September 10, 2011
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 email@example.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
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.
Sunday, September 4, 2011
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
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
Tuesday, August 30, 2011
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.
Monday, August 29, 2011
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
Friday, August 19, 2011
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.
Monday, August 15, 2011
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
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....
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!
Thursday, August 11, 2011
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.
Monday, August 8, 2011
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.
Monday, August 1, 2011
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
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!
Thursday, July 28, 2011
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
Three's a lucky number, right?
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.
Tuesday, July 26, 2011
Sunday, July 24, 2011
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.