Surgery #14...Keep Pushing Forward...leading to Surgery #15

Philippians 4:13- "I can do all things through Christ who strengthens me"

Some things in life don't always go as we hope. Some times in life we take two steps forward and one step back. But why? I'm not sure. But God doesn't owe me any explaination. But it's up to me to get through it one step at a time whether it's forward or backwards or sideways or upside down. I have to keep persevering even when I feel like giving up.

On June 18th I went in for my 14th surgery. I was hoping it would be my last for quite a while. So we snapped a photo of me with my doctor (Dr. Dierks) expecting it to be our last surgery together. He's been with me for 15 years and watched me grow up and has done extraordinary work on me. It's been such a blessing to have the best doctor in the nation work on me and reconstruct everything to make it functional and look it's best.

Dr. Dierks and I

This surgery we were rebuilding my nose. Well completely constructing it from my rib cartilage. The goal was to recreate my nose and build it upwards. I had a deviated septum and couldn't fully breathe well. By building my nose up it would open the air passage more and allow me to breathe more fully as well as create a nose with a bridge. In order to this they cut an incision right below my right breast about an inch and a half long and went in and removed rib cartilage.

 At the end of each rib there is roughly 7-8cm of rib cartilage that attaches the bone to the sternum. My doctor was hoping to in and in a sense "hollow" out a strip of rib cartilage. Imagine taking a log and hollowing out the inside to make a canoe. He was hoping to do that for me, but unfortunately I didn't have enough rib cartilage for him to do that and construct my nose. Instead he took out the entire chunk of rib cartilage attached to my bone and half of another one. So currently I have a space between 2 rib bones and sternum which created a floating rib. He then took the strips of rib cartilage and put them into my nose to create a bridge and put a cast on the outside.

The pain levels of this surgery was one of the worst. The first thing that hurt the most was my ribs. I went into surgery at about 1pm and didn't wake up till around 5:30. My surgery lasted roughly 3 and a half hours. We got to stay in the huge rooms since my surgery was later and the day surgery rooms close sometime in the afternoon. Once I gained enough consciousness again I immediately felt pain in my ribs and was ranging between a 7-8 on the 1-10 pain scale. I was prescribed oxycodon every 4 hours for 3 days. I usually don't follow what is prescribed for pain meds because I hate having it in me and the way it makes me feel, but this one I had to follow and eventually eased myself off of it onto Vicodin and then onto ibuprofen after about 10 days. I'm still recovering now and will for the next 6 months to a year. Once my ribs started settling down from my pain, my nose started regaining feeling again and that was just as painful. Barely bumping it would ache. My bruising wasn't as bad as I had imagined. I mostly had bruising beneath my eyes spreading into my nose and one morning I was swollen under my eyes enough I couldn't open them enough to get contacts in. Swelling improved each day and eventually was all gone. 

My cast was to come off in 3-7 days and it took about 7 days until I finally got it all wet and peeled it off. It was either I take it off or my doctor takes it off the next day and I preferred taking it off myself.

On the 27th my mom and I went to Portland for my post-op appointment. My doctor wanted to see how my nose was healing and look inside of it and do all the check up stuff. He immediately wasn't happy with what he saw. He was pleased with the tip of my nose though which is said to be the hardest thing to create. As my mom calls it, it's a "cute" tip of my nose. What he was unpleased with the top of my nose closest to my eyes. At the top there is a bump which I thought was just a lot of swelling but it turns out to be the end of my rib cartilage poking into my skin. What happened was the straight piece of cartilage "warped" and bent upwards causing the end of the cartilage to poke out of nose and middle of it to be bent inwards.

Since I have a piece of cartilage poking into my skin and causing a bump in my nose, we have to go back in and get it fixed. We would like to have everything completed before I head off to college in August. As of now I have surgery 15 scheduled for August 6th. I go in on the 1st of August to see how much my swelling decreased and if the surgery is still necessary, but as the days go by the swelling is going down but the cartilage is still poking up. After 2 weeks though the cartilage has shifted more and moved around becoming a little straighter each day, but the cartilage isn't bending back down. We got the news and my mom was more bummed out than I was at first. I think because I hadn't fully processed what had just happened. It wasn't until we were walking out of the doctors office when it really hit me what was going on and what was about to happen...again.

I was being faced with another surgery that failed. I've experienced this once before 2 years ago when we first embarked on this specific adventure. The first bone graft we attempted had failed, and I had to process that one too. In hindsight to that surgery I concluded that God was pulling me back from a life that was moving at 90 miles per hour when I thought I had everything lined up and working for me. But he was showing me that I had to depend on him to get through everything. Since then I've kept that in mind. But this surgery I have no idea. But God doesn't owe me any explanation. The surgery 2 years ago was so difficult to get over, to move past that bump and the hole I felt like I sunk into when it failed and everything was on pause. Just when things were looking good again and the end of the road was just in sight, another wall stood in the way.

I shut down in the car when my mom and I drove home. I couldn't speak about it without feeling like tears were welling up into my eyes. To me another failed surgery isn't just about the surgery not working, it's looking ahead and seeing what I have to go through again. I was so excited about being done for at least a year or maybe even done for good heading into this last surgery. But God had other plans. I've tried to process what i'm going into again. The full course of a surgery. It's something I'm used to now and know the ropes pretty well, but each surgery is a little more draining than the last. Especially these last few surgeries since they are some huge ones. They are physically and emotionally draining. Since June 30, 2011 I have had a surgery nearly every 3-4 months which adds up to 6 surgeries in 2 years. So looking ahead to one more surgery within 6 weeks of the last one is exhausting just thinking about. We can question it over and over as to why this is happening to me again and ask "haven't I been through enough?" But what good does that do? It is what it is and I have to get through it. My mom and I have had a hard time getting through it all and processing it all. But she is amazing and said it's about perspective. People have it 10x worse than me, a cleft lip and palate can be a big deal if you compare it to a person who scraped a knee. But if I look at a dear friend of mine who is facing the beginning of fighting cancer, my cleft lip and palate is minuscule. It's something, but as a Christian God never gives us more than we can handle. Trusting Him will get me through this. It's not the end of the world, even though it may feel like it at times.

It's hard sometimes to stay composed and try to be the strongest I can be when an area of my life feels like it's falling apart and when crying feels like the most needed escape. My mom and I have walked through all of this together since day one. Her being a mom she feels the pain her kids go through and so if I break I'm afraid she will break even more. I've tried to stay composed and just battle through this, but sometimes it's ok just to break down and let it out. Everything in me doesn't want to do another surgery and go through it once more. But if this is what I have to go through once more to reach the end and as close to perfection with my final stage, then so be it. I will go through anything and repeat anything to finish off my mouth and nose. The end is coming, maybe not at my pace, but it is coming. And through this pain and extra surgery I believe God will do something great. 

One of my best friends told me it's unreasonable to say everything won't be ok because it will be in the end. God has never deserted me and won't start now. I'm exhausted of surgeries and just want to be done, but God has different plans for me and I'll be done on his timing. It's easy to say these things and I know I believe it and I know it's true, but I'm human and still fall into the darkness of failure and frustration with how all this is going. My mom said it's ok to be human at times especially one of these times. God doesn't expect us to be happy and cheerful all the time. There will be troubles in this world and we can express our pain, anger, frustration whatever it is, but we can't wallow in it for good. There comes a time when we have to pick ourselves up, wipe off our tears and step forward. 

On August 6th I will have to step forward and bring my journey to a close hopefully. As of now I have many dentist appointments from now until I leave to college to create my final set of teeth. Due to the lack of tissue in my upper jaw and not quite enough implants to support 5 teeth, we have decided to do semi permanent implants. It will be an appliance that will snap into my 3 implants and will clasp into a couple of my back molars. It will be removable every night for cleaning but sturdy enough to bite food like i've never been able to before. I have many molds, and fittings to get it perfect for me. It's an appliance that hopefully will never have to be fully replaced but maybe in the far future be adjusted or repaired a little. "Real" teeth are coming finally! 

As of now I am still recovering.  I have new floating ribs in my body when I lay down flat it causes pain as the rib is sticking up more and getting caught on the backside of my incision. I have dissolvable stitches inside of me that will eventually cause the scar to flatten out and get smaller. But the pain is much less now and muscle use is increasing daily. I can open a car door again :) My nose is doing much better as well, the swelling is getting less and less each day but full recovery of it won't be for 6-12 months. Especially since we have to go back in and fix it in August. The road of recovery is pretty smooth so far! Thank you for all the prayers! 

 

It's easy to get caught up in the negatives in life, and a lot harder to find the positives when things aren't going your way. But look here at me as a toddler who had my mouth wide open and not "normal" but that didn't stop me from being absolutely happy. Sometimes I wish I could be that happy child so easily again where the fears and the trials of life wouldn't drag me down and make me stop for a moment to really think if I want to be that happy. It's incredible to me to look back at how I was and look forward at how I am now.

Even though I don't have the most perfect nose in the world, I've come a long way since I was born. I have more things to be happy about in the world than the few imperfections and large bumps in the road. What ahead isn't the best, but it's not the worst either. I just have to keep pushing forward.

Thank you to all of you who continue to pray for me and walk along side me through this journey. I couldn't do it without you and your continuous prayer.

John 16:33 “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”

-Katie

Past Surgery #13... Past Procedure #2...Procedure #3 (possibly)...THE FINALE (for now) Surgery #14

[BEWARE: Much reading ahead :) and one "graphic" photo (sorta)]

James 1:2-3
Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. 

Wow! Another surgery down and another procedure down! That puts me at 13 surgeries and 2 procedures! The ending is coming but I still got a few more steps to go! 

This last surgery was a bit of uncertainty as we went into it. We knew we were testing the bases of my implants and doing some tissue graft but we didnt have a plan B or a plan C if it didnt work. My doctor just went in and did his work as usual, no back up plan. So once again on March 26th at 4:30am my mom, dad and I all left to Portland for another surgery. We had to check in at 5:30 and surgery was at 7:30. The morning is very routine now, hospital gown, questions, height, weight, blood pressure, pulse and usually IV but I have anxiety with IVs and the last 2 times they let me be put to sleep first so they did the same with this surgery as well. At about 7am they rolled me up to the pre-op room where we were greeted by different nurses, anesthesiologist, doctors and then Dr. Dierks. 

Since I'm 17 now I get to sign consent for various medical related things :)

 My doctor explained to us exactly what he was going to do:

      He was going to test the 3 metal bases in my upper jaw using an aluminum screw and a special wand. It created a type of magnetic field around the tooth and tested the amount of movement at the base. The range of movement was scaled on a 1-99% scale, we wanted it to fall somewhere between 60 to 70 if I remember correctly. He tested it and it fell around a 67. So currently it tested well enough to continue. 

      In addition to testing the bases, my doctor was also doing a tissue graft. Since the summer of 2011 they had sewn down my upper lip to my upper gum tissue. They needed more tissue to help cover my jaw bone while bone grafting and later placing the metal bases. But since the first round of bone grafting didnt work, I had to continue the tissue graft for even longer. Finally in this last surgery they were able to cut it and sew it back up. But in order to cut it and free it from the upper jaw, they had to get tissue from another source to finish covering it.My doctor took two strips of tissue from upper palate and grafted it onto my upper jaw. He then placed a plastic stent over the raw tissue and screwed in 3 screws into my jaw bone to hold the stent in place. For pain relief he padded my retainer to cover the raw tissue where he removed the strips. I had 2 weeks to go with raw tissue and screws in my upper jaw. Which leads me to procedure 2.

                                                          



Blue squares: Three screws placed into my upper jaw bone to hold plastic stent in place

Green square: One of 3 metal teeth implants screwed into my bone

Purple square: Raw tissue from removing a little of tongue graft to flatten more
My recovery took about a week and half, which seemed longer than most and longer endurance of pain. The tissue graft was fairly painful and stung a lot. I had to wait a minimal of 2 weeks before I could get the screws removed and the plastic taken out. Felt like forever the more I anticipated the screws coming out. The catch was with this procedure was that I would be awake. I've only been awake for one other procedure which was my gingevectomy  way back when I was younger. That one they burned my gum tissue off around my teeth and smelling that while awake was awful. So being awake during procedures scare me. I was told this one wouldn't be too painful. Just a little tug at first and then the screws would come out nice and easy. Well they sprayed me with the topical numbing and then went through probably 5 screw drivers until they could find the right size to fit the screws. Then my doctor began. The first screw didnt hurt at all, but the last two were extemely painful. I rarely cry over pain, but this one I couldn't hold in my tears. The pain and the feeling of screws being removed was 
too much. The numbing didn't work and I felt majority of the last 2 screws being removed. But it felt amazing to get everything out finally. Dr. Dierks said everything grafted as he wanted. He said the stent created a "trench" form in my upper jaw gum tissue and that he would need me back in for another procedure to correct it within a month. 

       Procedure #3...I was scheduled to go in May 16th to have the excess tissue graft cut/unattached and resewn up. Back in April my doctor said it was unlikely to have the tissue heal enough where I wouldn't have to have the procedure so we were all expecting I would have it. I was most anxious for this one because this time he would numb me with needles. Needles are incredibly painful, painful by itself in normal gum tissue but with scar tissue it feels like its 10x worse. I already have problems with IVs so this procedure was stressing me. Thankfully I had a huge AP test the day before it so it took all my focus off up until the procedure and we were prescribed an anti anxiety pill to take before to help with me not stressing myself out. We arrived to the office and my doctor took a look and said the band of tissue that he would have had to cut was healed and softened enough he didn't need to do the procedure [answer to prayer, I have a big God :)]. Truly amazing in such a short amount of time the healing that needed to be done and that wasn't expected to be done, happened. I was able to relax and not have to have the procedure. Luckily I hadn't taken the pill yet that would make me drowsy for 6 hours for no reason :) 

These are just a few of my hospital bands I've gotten to wear and I get to wear another in June.

      Since we didn't have to do the procedure we were able to talk about my next phase and my final huge surgery. Surgery #14 scheduled for June 18th at 7:30am. This is one of the biggest surgeries I will have done. Dr. Dierks will be correcting my deviated septum and building me a nose that will be 100% working and looking as close to perfect as we can get :) This surgery will be roughly 4 hours since it has multiple parts to it. He originally said he would use cadaver rib cartilage but this time said it would be best to use my own since my body would dissolve a significantly less amount. He will make a small incision in my body right below the breast and remove a piece of rib cartilage. He uses cartilage instead of bone because it will make the nose more flexible and not so stiff. He will take two pieces or one and divide it into two in order to create an "L" shape. The bone will then pull my nose tighter and create a bridge for me and also create the division between the two nostrils to support the tip of my nose. They cut below the nose and lift the skin up and work beneath it all. In 4 hours he will correct my septum, graft from my ribs, and build the nose up. 

Blue lines represent the rib cartilage placement

    There is only one major risk ( it rarely ever happens, but they are legally obliged to tell us). Through cutting an incision and removing the cartilage above my lung it is possible to create a leak where air is surrounding the outside of my lung rather than going into it which could cause my lung to flatten. But my doctor can correct it while in surgery and suck the air out. It also could create a drain and they would have to place a tube into the side of me for a certain amount of time to drain the fluid out. Luckily my doctor said this rarely ever happens, and he will do a chest scan at the end of the surgery to make sure everything in place and there is no damage. 

     In addition to the "nose job" we are aiming to have my 5 front teeth put into place. They can screw my teeth in and build my nose all in one surgery. Until then I have dentist appointments and orthodontist appointments to get everything lined up and created to be used. Close to the finish line!

    Recovery time...It will take a full month to significantly unswell. By that time my nose will be at a stage that the new shape will be visible. After that month I will slowly continue to unswell and a year out I will have finally stopped unswelling and be as I will be. So roughly a year from start to finish! Big step!

     I keep saying this is the finale (possibly) simply because this is the end of all huge surgeries, everything I have ever worked towards the finish line. But after this any surgery I have will be touch ups and small detail stuff I don't "have" to have done. I could possibly have one next summer to even out my lips and do a lip graft, but thats not certain. So for now this is the FINALE. I just ask if you could pray for peace and minor stress as this huge surgery approaches. As well as strength for me and my family, especially my mom as she pours out so much for me to support me and keep me strong through recoveries. I also ask for prayer over my doctors who operate on me for wisdom of how to build everything and the one rare risk doesn't happen to me. 

      Thank you to all who have journeyed with me through it all since I was first brought here or even to those who just recently met me and have supported me through this last crazy year of surgery pit stops every 3 months! The support and prayers are truly encouraging and I couldn't do it without all of you and the prayer warriors out there! This journey has been crazy, had ups and downs, triumphs and failures and it's still not quite done, but the finish line is in sight. I have such wonderful friends and an amazing family who I couldn't do these surgeries without. One last step and we can rest. 

With a thankful heart and a beaming smile,

Katie 

James 1:2-3
Consider it pure joy, my brothers and sisters, whenever you face trials of many 
kinds, because you know that the testing of your faith produces perseverance. 

        

Surgery #13...To Have Faith

Luke 12:22, 25, 26-
      "Then Jesus said to his disciples: "Therefore I tell you, do not worry about your life, what you will eat; or about your body, what you will wear...Who of you by worrying can add a single hour to your life? Since you cannot do this very little thing, why do you worry about the rest?"

        Another blog post must mean another surgery! That is exactly it. In 3 weeks on Tuesday the 26th of March at 7:30am I will be going in for surgery #13! Crazy to me that I'm already nearing another surgery, I would think I would be used to it by now, but not quite yet! Time really flies and that is something I never can get used to. Well 4 months ago exactly (November 4th) I went in for another surgery expecting to do more bone grafting and trying to get my upper jaw ready for the base of my teeth implants. But God had another plan and amazed us all, He grew more bone within the last 2 weeks before that surgery which gave me just enough bone to skip more bone grafting and go straight to putting in 3 implants. Since then we have been waiting to see if my bone was strong enough to accept these bases...been quite the wait.

       On the 26th of this month I will be going in to have them tested. They were screwed into my upper jaw beneath the gum tissue so currently they are not visible. It is an electronic test to see if my bone accepted the metal which means I have to be put to sleep for surgery. While my doctor is in there he is planning to unsew my upper lip, which has been sewn down for probably the last year and a half or so to graph tissue and help cover all the bone grafting. Since he is freeing my upper lip he will replace that gum tissue graft with even more grafting from my upper palate. He is planning to strip the roof of my mouth of gum tissue and graft it over my upper jaw. If everything goes according to plan and my body accepted the metal then hopefully and prayerfully two weeks out from this surgery I will go back in to put my permanent teeth in...something I have been waiting for for a long time. If I can get through this next surgery with no set backs then this phase of surgeries will finally be complete and I will be that much closer to the finish.

       I have been in this position before, where everything was just one step away from making huge progress. But the last time I was here the surgery to see how it all worked ended up only showing that it was a failure. I had to rewind 4 months and start over. It was the first time where I had fully experienced a failure, a set back, and a huge change of plans in my journey of surgeries. It was the first time where I doubted God's plan with all my surgeries and when I felt the most broken and weak by this journey. I had become so consumed by the future and assumed too much that everything would work out just because it always had. I was blind to the big picture, that the one who always was here for me was who deserved all the thanks and praise from me. I learned the hard way, when I hit rock bottom and knew I couldn't fully depend on myself, my doctors, my family but ultimately I had to depend on God. Once I picked myself off the ground from that set back, I was on fire to trust and rely on God for the next surgery and he proved himself to be faithful to me.

        Yet now another 4 months later when I'm faced with another future determining surgery somehow the burning flame to trust God has dimmed within me. Its been so easy lately to lose focus and want to just take control. I want everything to line up with this surgery so I can move forward, I fall into wanting to choose a college that is most appealing to me and I want to serve at my church and continue to pour out, but I can't pour out and I can't choose and I can't move forward unless God is in control. Life in general has felt heavy and busy and I have no doubt become so worried. Worried about it all, the small things and the huge things. Within just these last few days I have felt the most worn down as my next surgery approaches but my God is GOOD and faithful and has reminded me to have faith in Him and to STOP WORRYING. Because worrying won't make me any stronger or change the speed of time, but instead I need to let it go and give it all to Him. Its the most difficult thing for me to do, but every day calls for me to do this. Especially these days where I worry the most that my body hasn't taken the bone and worry that it will be another failure. But I have 3 weeks until I get to go in and see and God can do marvelous things in 3 weeks. I just have to give him control.

         I'm on the downward slope to all my surgeries and I just ask for prayer that my body with take all the metal and will grab hold of it tightly and pass the electronic test. I also ask for prayer over me and my family as they support me and pour so much strength and energy out to keep me going and pushing through more surgeries. I thank you all for your continual support and prayer for these past few years or maybe even all my life :) You guys are awesome!

"Faith is dependence upon God. And this God dependence only begins when self dependence ends"-James McConkey

Katie :)

A Little Faith...Surgery #12

Wow, this surgery #12 showed me the true power of my God I believe in! And I would LOVE to tell you why! So keep on reading :)

Review: A little over a year ago my mom and I found out that my first bone graft failed and I all my hope felt like it had been sucked out of me. Since then I went through another surgery in June of 2012 to do another bone graft, but a little different process.

Then in October, I went in for a CT scan to see how the bone had grown and my doctor said there was as much bone as I could possibly grow, but not quite enough. Like always, my doctor's brilliance came up with a back up plan. Dr. Dierks said he could take a piece of my lower jaw bone and screw it into the upper jaw to fill in the space. This would be a 2-3 month recovery to get me back to fully opening my jaw, and in 7-10 years the bone would he would remove would be fully grown back into place. Everything sounded good, after all it was an option I had to take if I wanted to move forward. That or my bone had 3 weeks to grow more... (have a little faith).

The piece planned to take from the lower jaw to put into my upper jaw

On November 4th I went up to Legacy Emanuel once again with my mom (the greatest and strongest mom I know :)). My surgery got pushed back to 9:30 but we still had to be there by 7:30! Early morning for us! We got there and I got all prepped for surgery. I can handle everything about a surgery except the IV. That is the worst part for me, luckily last time after the first attempt the nurse allowed us to have the anesthesiologist put it in while I was asleep. This time we remembered this and requested that before any attempts. So it was a pretty relaxing start. At Legacy Emanuel they have a chaplain who goes around to pray with different patients that request it, this time we didn't request to have one since my mom and dad both prayed me up before my surgery...but nonetheless a chaplain came in. It wasn't until later that we found out that Dr. Dierks likes to have the chaplain pray with his patients because for some reason whenever he prays over Dr. Dierks's patients the surgeries always go better ;)

We got into the pre-op room where all the different doctors and nurses came in to introduce themselves and go over surgery procedure and make sure I understand everything. Dr. Dierks came in and said that he had 3 plans, 1st plan was if in a perfect world then I would have enough bone and he could go in and place 3-5 dental implant bases into my upper jaw, plan 2 assuming there wasn't enough bone he would take the piece from my lower jaw as well as remove my lower wisdom teeth and scrape the bone from the sockets of my wisdom teeth and screw it all into my upper jaw. Plan 3 wasn't exactly a plan but more of just if for some reason both of those plans didn't work or there wasn't enough bone around then he would just have to make something up as he went along. After that I was taken into the O.R. where I was hooked up to different monitors and was soon put out by a gas mask. My surgery was blocked out for 3 hours due to all the steps of removing and placing bone and implants into different locations.

After an hour and a half or so my doctor came out to my mom to tell her how the surgery went. My mom was taken by surprise by how fast it was. Dr. Dierks came back with news we weren't expecting at all! It turned out that within the last few weeks before my surgery more bone grew and I didn't have to go through getting bone grafted from more places. Some would say that was lucky but I say and believe it was a miracle. Since I had just enough bone to put the bases in my doctor placed 3 into my jaw. I didn't have enough to fully support 5 so he did the minimal of 3.

I was still in the post op room while all this was happening and it took me quite a while to wake up. I started to come to and they had an oxygen mask on my face and then I fell back asleep again and later I had the oxygen tubes that go up the nose. It was a little uncomfortable but for the first time I was super itchy. Turns out it had to do with the hospital gown and how clean they make them. The nurse gave me benadryl to help with the itching but the side effect was putting me back to sleep...this went on for a while and my mom had to try to get me to wake up but I was super cranky and didn't want to wake up. We eventually got out of there and the nurses after seeing our history there let us do our own thing and not have to follow all the checklist items before they discharged me. We were on the road to home by that afternoon!

We didn't get many pictures this surgery but my mom thought it would be funny to put the oxygen mask on my bear :) This is Jojo and he goes to every surgery with me. He is my most favorite bear! 

Since then I have recovered very fast and I am on a very soft food diet until March when I will hopefully have another surgery to place the teeth. Until then my prayer request is that my body will accept the metal implants. Often the bone will reject the implants and that is where this step could fail. So we are praying that it doesn't! I go in to the doctor's office on November 20th to do a check up and remove the remaining sutchers in my mouth. Hopefully then everything will look great!

Within a year and half I have learned what it truly means to have faith. To have faith doesn't mean to rely on God and trust in Him when everything in life is going your way or when everything is falling into place, but to have faith is to rely on God and trust Him when things are falling a part. When times are hard, and trusting seems like the hardest thing to do, because it is. Having faith also can be taken advantage of, you can become so relaxed in just believing everything will fall into place that when it doesn't the world seems as if it just blew up in your face. That was me in 2011. I became so comfortable that all my surgeries would continue to go as I always planned them in my head, and then God threw a curve ball. Totally legal play but I wasn't expecting it and I didn't want it, and instead of taking it I broke down and gave up. Looking back to it all now I'm glad it happened, well not that I was set back in months for being done but that I was able to learn a huge lesson.

In the 2 weeks prior to my surgery nearly every day there was either a verse or a song that came up about faith. It was as if God was telling me every day just to have faith in Him to fully FULLY trust in Him. Finally I understood and I did it. I fully trusted him, at that same time little did I know the bone in my jaw was growing. Growing enough to make the upcoming surgery that much less invasive. In a perfect world there would be enough bone, but in my world with a little bit of faith there would be enough bone.

Matthew 17:20... "Truly I tell you, if you have faith as small as a mustard seed, you can say to this mountain, ‘Move from here to there,’ and it will move. Nothing will be impossible for you.”

Throughout the day remember to have a little faith, you never know far it will take you.

Check Up- Pre-Op Surgery 12

What a journey it has been! Though these last 4 months have been a little slow for me as for surgeries and my journey towards the finish. I had my most recent surgery last June when my doctor tried another way to grow jaw bone into my upper jaw. Since the surgery before that wasn't successful he took 3 core samples of my right hip bone (illiac crest) and added that bone to cadavar bone (someone else's bone) as well as a bone morphogenetic protein to enhance the bone growth. From June I had 4 months to grow as much bone as I could to see if I could grow enough to move on.

On October 12th I went in to see my doctor because lately the bone and mesh screen growing through my gum tissue once again and causing pain and discomfort. We also hadn't had a chance to do a check up on the bone so it was a good appointment to have all around! I got to have a CT scan of my face to see where the bone was growing or wasn't growing. I'll admit, I was really afraid down in the pit of my stomach of what this scan could say. After last year when my mom and I went in for an appointment just like this we left with such disappointing news of the bone graft failing.

The news of this scan was overall good with a minor disappointment, but not enough to ruin anything. My doctor had my mom and I to follow him to the computer screens to see the results of the scan, we looked at my mouth and saw majority of the bone had grown, there was just one location that he had a minor concern about. But Dr. Dierks had a solution to the problem which would allow us to move forward. In this next surgery, which is scheduled for November 6th at 7:30am, my doctor is going to remove a piece of my lower jaw bone to then graft to my upper jaw where the bone is a bit thin. The piece he is taking is called the Coronoid Process. It a small, thin piece of bone that connects the lower jaw to the muscle that allows you to chew. So if you were to flex your jaw as if you were chewing something you would be able to feel the muscle on the side of your head coming down to jaw. Somewhere in there the coronoid process is located :) I can live without this piece and hopefully in 10 years it will be fully regrown! It is said to be a 2-3 month recovery for me to be back to opening my jaw completely, good thing I don't just walk around with my mouth gaping open :) This piece of bone will act like a "venire" as my doctor compared it, it will just be a thin piece of bone that will be screwed onto my upper jaw and eventually grow into it. While my doctor does all this, he will also put in the bases of teeth implants. The moment I've been waiting so long far!

Diagram of where the bone will be removed from my actual jaw!

It's been almost surreal to realize the end of my surgeries are so near. Once this surgery passes I could have 1 or 2 more surgeries left, possibly 3 depending on how this step all works out! After 15 years of working to reconstruct my mouth and nose, the end doesn't seem possible! It really is hard to imagine once again that this year could be last through this journey, after last year at this time I was thinking the same thing, but God had a plan and he made it clear to me that his "ways are higher than my ways" (Isaiah 55:9).

The time leading up to this surgery has given me a lot of time to be afraid of this next step. In my previous blogs I talked about how fear is not something to be afraid to admit and this time I felt fear within me at its strongest. I think that this fear came from the emotional wear within me as I have to mentally prepare myself for another big surgery and all the effects it has on me physically. But truly God is good through all this. These past 2 weeks I have felt him at his nearest, while fear was its strongest. It was a battle within me of two great powers. But God is greater than fear because fear is of the world and as I heard from someone the verse John 16:33 "... In this world you will have trouble. But take heart! I have overcome the world.” Every where I turn I am constantly reminded of His presence and constantly reminded not to fear. :) 

This next surgery will be hard, but not impossible. Never impossible. As some would say "it'll come and go like a blink of an eye" and it truly will! I would love to ask everyone to please pray for me Tuesday, November 6th as I will be entering into my 12th surgery. Please pray that the doctor will have a peace of mind and know exactly what needs to be done. That the surgery will go smoothly as well as the recovery for me! Thank you all for taking time to read this and be apart of my journey! God has truly blessed me with great support and loving friends and family! You are all such a wonderful blessing to me! :)

Genesis 12:3
I will bless those who bless you, and whoever curses you I will curse; and all peoples on earth will be blessed through you.”

Surgery #11- June 19, 2012

          On June 19th I went in for my 11th surgery! The usual team of my dad, mom and I left Salem at about 9:45am we had to be there at 11 to check in 2 hours prior to my scheduled surgery at 1pm. We got a call saying that I got to be in the new Randalls Children's Hospital at Legacy! They built a new section for youth ages 0-18. Originally it was 0-13 then 13+ was in the adult section. I got to
experience both since I had gone through 10 previous surgeries since I was 2. I
was pretty excited to be in a new building! We got there right on time! The
building was amazing! So colorful and inviting. It wasnt like most hospitals
where it smells and looks sterile, this was very clean but almost a home away
from home feel. We went down to the lower floor where I was to be checked in and
we went through everything and I got taken into my room with my mom. It was so
cool! They had this touch screen that was used to watch tv, movies or play on
the Internet!

Welcome booth!

          Served to be pretty great once we heard my surgery got pushed back
to 3:30pm. My doctor had an emergency surgery that took precedent over mine so I
got pushed back to 3:30. We also heard that he blocked out 4 hours for my
surgery! So estimating the time we guessed I wouldn't be out of recovery till
around 8:30ish that night! Long day at the hospital! My mom and dad switched out
taking turns of waiting with me and taking breaks and doing things outside of
the hospital.

Before surgery!

The team, we all got our matching wrist bands!

           It finally came time to do the one thing I feared the most, the IV. The nurses
are supposed to try atleast 2 times before getting a trained nurse to put it in
or to have the IV put in while the patient is asleep. So the nurse tried to find
a good vain,  thought she found and one and put the needle in. She got it in but
wasn't able to thread it into my vain all the way.  That's when the anxiety
kicked in. She tried to pull it out a little and try again but it was causing
pain and I phsyched myself out. I started crying and gettin really anxious.
That's when my mom told the nurse to call it quits. She told her not to try
again and just to have me get the IV in once I was out. I had hit my max.
I then sat there for another hour or so.
           I met a couple residents studying under my doctor, Dr.Dierks. He talked over the procedure with me, he said that if there wasn't enough bone in my first hip they take out of then they may have to take from both. He initialed my hips and went on. My mom came back and swapped
with my dad and my mom and I took a walk around the hospital floor. It ended up
being 3 when some nurses came in and said my doctor was finished and that they
were going to take me earlier than planned to the pre-op room. There I met with
my anasthetiologist, Dr.Hughes, and he was awesome! He was probably the youngest
anasthetiologists I have had, and he was very interactive with us! I request an anti-nausea patch to be put on behind my ear before surgeries because in the past I have thrown up from the anastethia. So he got one for me but dropped it while trying to get it out and he says "and that is why I am not the surgeon" :) He was fun but most certainly knew what he was doing later as it proved that the dozes he did was just the right amount! I met with my doctor, more residents and OR nurses! My doctor
decided to add in another piece to my surgery, if necessary he was going to take
out 2 pieces of my lower jaw bone the size pf his thumb nail and add that to the
bond graft as well! Finally at about 4 it was time to be taken to the OR. Since
           I didn't have my IV in yet they had to put me out with gas. They used this
laughing gas as they call it that was said to smell like Barbie plastic but it
really didn't haha it just smelt bad! Then they used this heavy stuff that smelt
like acrylic nails and then I was out!
          I woke up a few hours later in the post-op. I woke up really easily and came out of everything really smoothly! Probably one of the best recoveries I have gone through out of 11 surgeries!

Me right after my surgery! We were amazed at how little swelling I had coming out

My hip right after my surgery!

          Since my surgery was pushed back later they scheduled me to stay over night at the hospital, but they said we had the choice whether to stay or not. I was taken to the 8th floor of the new hospital building, one nurse called it the "pent house suite" of the hospital haha. The room was big, open, and welcoming, they had a couch that pulled out into a bed for someone to stay over with the patient. The doors were made from bamboo and the private bathroom was so nice!

           My surgery only ended up being 2 and a half hours long rather than 4 hours! Dr.Dierks told my parents that the surgery went great! They ended up only needing to take bone from my right hip since I had a lot of really good bone in there. He didn't need to graft bone from my lower jaw either! Praise God for making this surgery be as easy as possible! I was determined not to stay over night at the hospital, I love waking up in my own bed and in my own room the next day after a surgery! So the nurses checked my vital signs a couple times and I made it the goal that the next vital signs check at 9:20 would be my last and we would get ready to go! Around 9:45 or so I was set to head home! The nurses sent me off with an anti-nausea patch, anti-nausea med, morphine, an anti-inflammatory med, and oxycodone all so I was well covered for the ride home! I was pretty out of it once I hit my bed later that night!
          My recovery from there was incredibly fast! I was told that this surgery would cause me to have a lot of swelling for 1-2 weeks and that my hip would be sore but not as bad as my last hip bone graft. Well, I was only swollen for about 4 days, and I was off crutches by the 5 day! Today is day 8 and I got my retainer back in, my swelling is completely gone, and I'm walking mostly like a normal person with a few aches and pains depending on what I am doing! Remarkable recovery!

My hip a week later once we removed all the stuff covering it

             I saw my doctor today for a follow up, unfortunately the power had just gone out when we got there so we had to take the stairs up to the 3rd floor! That wasn't exactly what you call fun after a bone graft from the hip but it wasn't impossible! Dr. Dierks looked into my mouth and said everything looked how it was supposed to. We were going to do an xray of my mouth but since the power was out we were not able to do so. The next step is looking at a surgery sometime in December or January to do the next step of putting the actual dental implant bases into the new bone! Last year the set back was that the bone didn't grow enough, but it's a new year and anything is possible!!
           Thank you to all who have been supporting me and praying for me through this surgery! The power of prayer is incredible and every prayer has helped! I only have one prayer request and that is if you think of me on some random day if you could remember to pray for the bone to grow in my jaw, so that in a few months when we go back in we aren't looking at another failed bone growth! I'd love to moving on and finishing up with all these surgeries! I've still got a few more to go :)
Thanks for all your support and I will update again in a few months!

1 Chronicles 29:13
"Now, our God, we give you thanks, and praise your glorious name"
-Katie Scheel

Fear...Surgery #11, 3 days away!

Fear: (n) an emotion experienced in anticipation of some specific pain or danger (usually accompanied by a desire to flee or fight)
Fear: (v) be afraid or scared of

Fear or afraid...that's how I've felt the past couple weeks in anticipation for my upcoming surgery in 3 days! When people would ask me how I am feeling about an upcoming surgery usually I would say just "great" or "excited to get it over with" or "it's just one of those things I have to do". Though all of those statements are completely accurate there's something about admitting to be afraid of something like this that almost makes me feel weak or that I have little faith in the great God I serve. 

This surgery is going to be #11 and it's going to be another bigger one. You see a year ago I was looking at a surgery similar to this thinking we are on our way! Making great strides! Little did we know that a year later we would be facing this surgery once again but with a little twist to it since the last one didn't work. As I wrote in my last post this surgery is using cadaver bone powder, my own hip bone, and bone morphogenetic protein (BMP) to create another "bone pudding" to be put into another titanium mesh screen and screwed back into my up jaw for the next 4-5 months! So I look at this surgery and the steps involved and I think to myself "great, it's another surgery I gotta get through! It's good to be back on track again and making progress" 
I got asked by an adult last week "How do you feel about this upcoming surgery?" I simply replied "good, just another one of those things I got to get through" Like many who have heard my story and journey they tell me I am a brave girl but this strength and bravery to get through it is all coming from "Christ who strengthens me", God equips me with what I need and only gives me as much as he knows that I can handle. 
But despite what I know in my heart and what I have been taught there's the human emotions and feelings that come through, fear. 
I have this guy in my life who is my absolute best friend and who's been able to walk through this stuff with me in the past 2 years. He's kinda new on board compared to the rest of my family and the friends that have grown up with me personally through this all but hes one of those guys who is always so encouraging, uplifting and positive. He's the one who made me realize through talking out the failures of the last surgery with him that I am truly afraid of this next one. But it took me a while to finally come out and admit that I am afraid.
I am afraid of this surgery failing again.
I am afraid of my body not accepting new bone.
I am afraid of the IV
I am afraid of waking up in the middle of the surgery 
I am afraid of the pain of my hip after the last hip bone graft I had.
I am afraid of what could happen if something goes wrong.
I am afraid of how much money could essentially be wasted if this doesn't work again 
I am afraid. 

I always felt that if I admit that I am afraid for a surgery it portrays me as weak or that I am no longer strong about this. That the minute I say I am afraid I lost the strength and courage for everyone else who is here to support me. I felt that I couldn't be afraid of these surgeries since I've gone through them since I was a young girl and it's just always been apart of my journey and story. I have to be the strength and pillar to hold this up, but I was wrong. I can't be the strength and courage for myself, I'm human and with that comes fear and weakness but the great thing is is that I have a God on my side who will be there for me through everything!  If I give him my fears and worries he will become my strength and my courage to get through it all. I can't do it on my own :) 

So fear I believe is ok to admit. It's a response to a situations in life but how we deal with it I think is important. So when I got asked the other night by another adult about how I am feeling about this next surgery I said with no hesitation that I  am afraid but that I am excited to move forward. 

On June 19th at 1pm I will be going into my 11th surgery with strength and bravery that God has equipped me with and I will no longer need to be afraid because I will be at peace since I know that God is with me.

So what are you afraid of today? And how will you over come this fear?

Fear: Psalm 91:5&9- "You will not fear the terror of night, nor the arrow that flies by day...If you say, "The lord is my refuge," and you make the Most High your dwelling"