Trial and Error...learning to fully have faith

It's been a little over a month since the last time I wrote, what I can say is that life has unexpected turns and as people we have to learn to adapt to them, we can get as angry as we'd like and try to analyze everything, but as a Christian I have to learn to have full faith in God and trust that everything is in his hands. It's easy to talk the talk but when it finally comes to have to walk the walk, it's much harder then expected...

Yesterday, February 23, 2012, my mom and I once again drove up to Portland. Another doctor's appointment, this one walking in expecting to be facing faze 2 of this step we've been working on since June 30, 2011. Last summer we began constructing the nasal base and the structure to place dental implants in. Inorder for these to be successful we had to grow bone into my upper jaw. It's rather fascinating thinking about how medical teams have figured out how to grow bone using blood platelets and cadavar bone. In June of 2011 I went in for surgery 9, having the titanium mesh screen and screws put into my upper jaw holding the cadavar bone and my blood platelets grafting new bone to my bone in hopes that my body would take over it and create its own. I went in for a cone scan to see the progress of my bone growth, the scan showed that it was successful, bone was growing and phase 2 was getting closer. Fast forward to January 3rd, I had gone through much discomfort and pain within the last month before this surgery. The mesh screen was pushing through my gum creating a hole and the pain was getting worse daily. January 3rd was expected to be phase 2 of this process to finally get the implants in but 2 weeks prior to that my doctor said he needed more time to accurately place the implants so we post poned. But the longer we waited the more discomfort I went through so my mom rescheduled the surgery for January 3rd to remove the "hardware", this surgery ended up being a blessing as I needed more bone added in since there was a bit of down fall on one side. I had until mid March to grow bone when my next surgery would be scheduled to place the implants in before Spring break.

Waiting in the doctors office to get my cone scan

So I had my check up yesterday to see the results of my bone growth to then schedule my surgery for next month. My doctor felt around my mouth for a little bit then decided that I needed to get another cone scan to get an accurate view of my mouth. What came next was news that shocked my mom and I, words that I wish wouldn't have to be true.

        Cone scan of my mouth, where the 4 yellow lines point is the most important part of this scan



                                     Front view of my face and the gap we are trying to fill

My doctor said there wasn't enough bone growth. The bone didn't grow even with the addition from the last surgery. I was set back another 8 months or so after just spending 8 months waiting for this bone to grow. Back to phase 1. We may not be moving forward with this until June of 2012, my doctor needs time to study the scans and create a plan to get this bone to grow...set back a year. The realization that the last 2 surgeries were practically a waste it was painful news. Then my doctor was stumped on what to do. He tried the cadavar bone powder and blood platelets twice and both attempts failed. We talked about the possible ways to try again such as taking hip bone, but that's super painful and may be too much to take from my hip, taking skull, but it would dissolve too quickly, using hip bone and cadavar bone and mixing them together, using a bone protein to enhance the growth, but hesistant to use, all these ideas but with downfalls that outweigh the possibility of doing them. As my doctor said, "it's like taking 2 steps back before we can go forward". 2 steps back that costs us thousands of dollars nearly wasted, viewed by insurance as "experimental". 2 surgeries that I had to go through the physical pain, the emotional pain, the anasthetia. Everything, it's the whole cycle run through to get us back to where we started.

My mom and I left the office with the feeling of pain and sadness. A question of why? I was and still am as I write this, devastated of the news I had heard. 2 months ago we were thinking everything was going great, the bone was growing and everything was successful. But it turned out that the scan I had done while I had the screen still in my mouth made the bone appear to be bigger than it was. The ride home was difficult as we tried to process it together, I tried so hard to fight off crying it was the feeling of defeat and the hope temporary lost. My mom was so supportive to me, she asked me to explain how I felt and what my response to the news was and my response was disappointed, hurt. Not because I have to face another surgery but because the last 2 surgeries were a waste. The hope that the bone was growing but that it wasn't. Looking back and seeing the pain and surgical expense it was to go through with these surgeries that didn't work. The realization that I wouldn't have a "normal" biting mouth for another 8 months or so. Last June when I began this step I was thinking just 8 months or so and I'll be getting teeth for the first time that fully worked. It was the hope that I held onto, what got me through. Now I'm not sure what to expect. It's hard for people to imagine what it'd be like to have their front 5 teeth missing. To have a partial that only gives you the presence of teeth and the half way job of speech. While the use of the teeth is absent. I can't bite into food, the retainer will pop out partly while talking. It's a drag but I learned to suck up and deal with it as I saw the end coming. It's all this that overwhelmed me. The whole way home from Portland this weight of disappointment the heaviness of failure the pain of what I still have to face sat upon me consuming me into silence. I once saw the end and journeyed through it until the end date came, now it's here and i'm back to where June 30, 2011 had me. It was the hardest to talk to my mom about it to hear the sympathy in her voice, the eventual tears that were shared between us as we processed it together. It's the buddy system we've always had. Through the ups and downs everything, we're a team.

I asked God why didn't you allow this to work? Why did you let it fail? Why?  But he doesn't owe me an answer. Yet I know his answer and his answer to me is simple, "it's not according to YOUR plan Katie, it's according to MINE"

Psalm 91:4- "He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart"
I've learned a lot within in a day. It's not about looking at the what could haves and the negatives, but it's looking at the positives and looking at how can God take this and create it into something more. It's not just my story, and my journey and my plan. It's God's story, his journey with me, and his plan for me. I'm not alone, I just have to full faith in him. God never says that with him life is going to be easy, or dodging the pain and hurt, but that with him it's going to be possible to get through. As a Christian I have take my faith in him and apply it during times that I feel he's most far away. That's the time we draw close to one another and fully rely on him.
As one of my most favorite songs by Tenth Avenue North, Times says "The times of confusion, in chaos and pain. I'm there in your sorrow, under the weight of your shame. I'm there through your heartache. I'm there in the storm. My love I will keep you, by My pow'r alone. I don't care where you fall, where you have been. I'll never forsake you, My love never ends. It never ends."

I walk away from writing this entry seeing all that I've faced in the past 8 months splashed upon a screen as one page, just one page of this journey. 1 page in this giant book of life, yet I can look to these blank pages ahead of me and know that I don't have to write them alone. Hand in hand I'll write them with God. His plan is my story.

Jeremiah 29:11- Katie

A day in the life of a patient

January 3, 2012

My surgery was scheduled for 9:30am in Portland at Legacy Emanuel Hospital. I've had all my surgeries at Legacy since Dr. Dierks has started reconstructing my cleft lip and palate. Like all of my surgeries we were asked to be at the hospital 2 hours prior  which meant we had to be there by 7:30. Since we live in Salem we had to be ready to leave by 6:30. Usually it's just my mom, dad and I who go up to my surgeries, but Lauren, my older sister got to come along for this one! So we had a family trip up to the hospital! It's pretty much routine now checking into day surgery. My mom and I go to the check in desk where we go over all my information making sure everything is spelled correctly on my wrist band, signing consent forms...etc. The nurse took my mom and I back to my hospital room and got me set up. I'm only allowed to have one person come back with me while I get prepped, which meant my dad and Lauren had to wait to around for a bit. The hospital has these hospital gowns that are made to have a tube hook into it that blows either cold air or hot air into your gown. It's come in handy in the past when I was either over heating or too cold. It blows up the front of the gown which tends to bring jokes from my parents about my size :) Once I'm all dressed for surgery, a nurse comes in and weighs me, takes my blood pressure, listens to my lungs and heart. All the works. I had one of my doctor's assistance come in and review with my mom and I what exactly I was having done. In medical terms I was having the hardware removed, a bone allograft and PRP (plasma rich platelet)...translation: I was having the titanium screen and screws removed, some more bone graft using my blood platelets once again. I signed a consent form with this doctor and then next was the part of the pre-op that I fear the most. The IV.

I very much dislike IVs. A few surgeries ago it took a nurse 2-3 tries to get the IV in correctly and finally when she did get it in it was still uncomfortable that I just left it and woke up wanting it out immediately. The only plus side is that once I get the IV out, I can go home. This time I was so nervous and stressed out about it I started to cry a little and sweat alot. My mom just sat there with me and held my hand and talked to distract me through it all. I squeezed her hand so hard even after the nurse had finished getting the IV in. This time it only took one try thankfully, but the IV is my biggest fear going into a surgery.

Once I went to the bathroom and settled into my hospital bed, my dad and Lauren were able to join us in the room. Like many dads, mine kept cracking jokes. :) Talking about corn on the cob, juicy apples all things I wouldn't be allowed to eat when I woke up, and the fact that I didn't have my 5 front teeth in, the joke was even funnier to him and my family. :) My parents even sang and did a little dance to My Little Buttercup from the movie The Three Amigos! haha My family prayed over me before Dr. Dierks came in to talk to us. There's nothing to fear when you have complete faith in God. Many people were praying for this surgery, including my family and I.

Lauren and I before the surgery!

Dr. Dierks always visits us before the surgery. He reviewed with us what all was going to go down. It ended up being quite a blessing that we had split this surgery into two parts. Dr. Dierks saw in the x-ray that I needed more bone in a small pocket, so he planning to do a minor bone graft there holding it in with stitches this time rather than using the full mesh screen and screws. He explained to us what a PRP is, which is where they draw my blood and extract everything from it except for the blood platelets itself. Then they take those and condense it down into a gel like form. It's been proven that these platelets can actually speed up the healing process. Such as when you cut yourself the blood platelets rise to the surface to "clog" up the cut to keep yourself from bleeding to death. What's even more amazing is that when these platelets are combined with cadavar bone (bone allograft) they speed up the process of my body taking over the bone and becoming it's own. So with this all being said, he repeated this process from the last surgery, but this time he drew blood from my arm since he wouldn't need as much as he did the last time. When he came out of the O.R. and talked to my parents he said it was a good thing we came in now rather than waiting until March to do everything at once, because once he opened up my mouth he saw that some of the bone graft was coming apart and there wouldn't have been enough bone to put the base of the implants in. Doing this surgery on the 3rd allowed more time for the bone to grow. One of those God timings :)

My anasthetiologist visited me next and gave me the "happy medicine" which basically knocked me out in no time. Apparently my parents and sister said goodbye to me before they wheeled me out to the operating room, but I guess I was so out of it I didn't remember that!

My surgery was only a couple hours long, I woke up to an oxygen mask and a nurse removing all the square tape patches on me from where they had monitors connected to me. My mom said I had been asleep for a while, which meant it was about time I had woken up :) My throat was dry and sore from the breathing tube, finally got some ice water down my throat. My mom had to spoon it into my mouth and wipe any that I drooled back out! It was a pretty fast out from there. I was able to go to the bathroom with some assistance from my mom, but I was walking more stable than I usually do when I first try to walk. After a little bit I was coming more aware of what was going on and wasn't so out of it. My mom was able to help get me dressed and the nurse finally took out my IV. Since I passed all the tests of walking, bathroom, getting dressed and IV out, I was cleared to go home. They got a wheel chair for me and wheeled me out. We were on our way home around 2:15ish! The rest of the day and the next day I just vegged around and relaxed.

Right after surgery!

Why the nurses didn't clean me up better I have no idea! :)

Today I'm feeling much better, barely swollen and recovering fast. The swelling has gone down a lot and I graduated from liquids to more soft food after a full day! I'm back on my feet regaining my strength! The recovery from this surgery was the fastest I've had!

I am so thankful for everyone's prayers and the continual support of my family. We've gone through a lot in this past week as a family with an ER run last friday and a surgery on Tuesday. I'm amazed at how strong my parents are and how faithful our God is to us. He is who gets us through everything, every day He's here for us just waiting for us to call on him and surrender all of us to him day after day.

Matthew 19:26 Jesus looked at them and said, “With man this is impossible, but with God all things are possible.”

The next step...5 days away.

Wow, I can't believe how fast 6 months go by! 6 months ago today I was thinking tomorrow I go in for my 9th surgery. Fast forward to now and I'm saying to myself 5 more days and I'll be in for surgery 10! Time just doesn't slow down.

Well since the last time I posted about my next surgery being on January 3rd a bit has changed. My doctor was gone for 2 weeks in the beginning of December, I had my cone scan done while he was gone and when he came back he said there wasn't enough time for him to plan exactly what to do. This surgery on the 3rd was going to be a bigger surgery then expected, it wasn't just going to be taking out the mesh screen and screws and putting in the base of the implants. My doctor was hoping to construct the nasal base as well, but when he saw the x-ray of where my mouth is now he found that there was a lot more planning involved before he could just go in and place the implants. He has to create the 3D figure of my face on the computer and digitally place the implants to figure out exactly where to put them, but he wants to get it just right which would require more time.  So on December 16th we post poned the surgery. My doctor was hoping to have everything planned and ready to go either in February or March. Unfortunately this meant I would have to wait a few more months before I could get this screen and the screws out of my mouth.

My mom talked to my doctor's surgery planner who said there were two options available:
1) Wait a few more months and do everything in one surgery, and only deal with the cost of one surgery.
2) Split this surgery into a 2 part surgery where I could have the first one on January 3rd to only remove the screen and the screws. It would be too long of a surgery just to do in his surgerical room in his office building, which meant the cost of the surgery would be even more because of it being in a hospital. Basically double the cost of what this step could be if it were only done in one surgery.

Financially it was best to choose to wait a few months inorder to do it all at once. Not only that but also it would be best for me not to have as much anasthesia put into me in one year. If we fast forward to the future we could be looking at 3 or 4 more surgeries in this upcoming year which would put me at 3 or 4 more doses of anasthesia put into me in such a short amount of time. So with this thought out, my parents decided to post pone the surgery.

My mom describes me as one of those "ducks in a row" people. Always wanting everything in order and knowing what's coming next. The news that the surgery was going to be post poned was extremely disappointing. I was mostly upset about the news not just because it set us back in time with how soon I could be accomplishing the next to step, but because the amount of pain I was in was increasing. It was so bad that smiling ached, eating would send sharp pains throughout it, I could only talk for a little while before it starting hurting again. Usually I can tolerate pain, but when it started affecting my every day life it was becoming too much. The hole in my mouth has been growing daily. One of the sides where the mesh screen has been coming through it began making a clicking noise, which we figured couldn't be good. My mom is so great and like any mother she doesn't like seeing her kids in pain. She's always trying to find a way to fix things or find a way to get through it. Finally she gave in and called the doctor's office a few days ago and rescheduled my surgery to have it done in two parts. We got it rescheduled on the same day the surgery was originially to be on, January 3rd.

It's amazing to have such a supportive family. A family is irreplaceable and to have one like mine is something to be truly thankful for. It wasn't by accident that I was adopted into the Scheel family, but it was bigger than that. It was God's plan. My mom has always been here for me, every step of the way. All the orthodontist or dentist appointments, doctor check ups, pre-ops, surgeries, post surgeries, you name it she's always there. We are a team, without her I wouldn't be who I am now with all these surgeries. She's always teaching me and bringing be back to God as the ultimate one who's in control. This is our journey. So as we venture into this surgery, I just ask for prayer that everything goes well.

My mouth as it is now...

My surgery is in 1 month. The bone is continuing to grow daily. I have watched in my mouth as weeks pass the thinning of the layer of tissue that covers the titanium mesh on the right side of my mouth. A few weeks ago there was enough tissue to barely cover the titanium, the tissue was see through but still covering the sharpness of the bone and mesh screen. But as time has passed since then the bone has grown even more and stretched the tissue to the point where it can no longer cover the bone graft completely exposing a chunk of the the mesh screen and bone. It's painful no doubt about that, as I am getting anxious for this next surgery because it will remove this screen and the 5 screws that hold it in place. My mom and I took pictures of my mouth so that you are able to see what has grown in my mouth...wish we could have gotten a picture of us trying to get a picture of my mouth! My mom was holding open my mouth while I was trying to get a good clear picture of the bone grafts...Below are some pictures of my mouth how it is now...hope you don't find them too creepy :)

Here's the whole picture of my mouth

Here's the right side of my mouth

Left side of my mouth

4 Month Check Up- Nov. 4

It has been a little while since the last time I have blogged. So here is a little catch up on what has been going on. In the last month or so more titanium mesh screen has been coming through a minor split in my mouth, though I was told to expect some of the mesh to come through as the months passed, I was still concerned that the amount of mesh showing was more than it should be. There are areas where the mesh is that hurts and I thought that meant the bone graft wasn't working. One side of the bone felt strong while the other side was hurting and uncomfortable. But then I went up to Portland for my 4 month check up, Dr. Dierks looked in my mouth and said that the bone graft was working exactly as he wanted it to. The bone was growing and looks strong enough to put in the base of the implants. So this is the next step to my journey...

During Thanksgiving break I am going in to see my dentist to have impressions taken of my mouth. The impressions will be used to create a set of barium teeth. These teeth will be used while the doctors do a cone scan of my face. A cone scan is a 3 dimensional scan to allow the doctors to use a computer to digitally place the teeth implants in the most accurate place in my upper jaw before they put the bases of the implants in during my surgery. We originally were looking at having my next surgery during Christmas break, but because of the time of year it is with my family owning Great Harvest it is the most busiest time of year for our bakeries. My doctor said that it would be up to us whenever we wanted to schedule the surgery, because there is no rush to put the base of the implants in we could do my surgery months out if we wished to. But I don't want to wait months out because of how uncomfortable it is to have titanium mesh sticking out and the sooner we can get this surgery done the closer I am to having my permanent teeth put in. So currently we have my next surgery penciled in for January 3rd.

I want to thank everyone of you who prayed for my mouth and the bone graft to grow. The power of prayer is incredible. Even when everything seems as if it's not working, it turns out that it is exactly how it should be. The last four months have gone by so quickly it's crazy to be seeing Thanksgiving and Christmas already coming and my 10th surgery on it's way!

I wanted to share with you guys something my mom shared with me, it's the story of Elisha in 2 Kings 13:21. This small passage says " Once while some Israelites were burying a man, suddenly they saw a band of raiders; so they threw the man's body into Elisha's tomb. When the body touched Elisha's bones, the man came to life and stood up on his feet." I think it's crazy how the dead man's bones were able to bring a man to life. My mom told me this after my last surgery to remember to thank God for the person who donated their bones to be used for someone else, in this case for me. Just as their bones were dead, they were mixed with my blood platelets and were brought to life in 4 months time. Now my body has taken over the bone and growing it's own.

God is incredible.

New blog address

                          SIZE2SHOE.BLOGSPOT.COM

        My mom and I decided to change my blog address or the URL for this blog to make it simpler to remember as well as telling others what my blog address is, it's much simpler for them to get to. So my new address is- size2shoe.blogspot.com
        Funny thing is my foot really is a size 2 shoe so it's a little fun to put in the name. :) As well as this blog is about my journey through my shoes as I go through each surgery.
         I hope you have enjoyed this journey so far, I will continue to post more the sooner my next surgery comes! Shouldn't be too long from now, just waiting for the call from the doctor's office sometime this month to see me for a check up and then we will go from there. Hopefully he will have an estimated time of when my next surgery will be.

Thanks for keeping up with me through this journey! :)

Conclusion...for now :)

I am so glad that you have taken the time to read my blog! I find it a rather fascinating story and I hope you did as well :) It's been quite a journey so far, but I couldn't have been able to go through it without all my family, my friends and my great God every step of the way!

This is my family, The Scheels...(Carter, Lauren, Dad Mike, Me, Mom Julie, Sam)

This picture was taken 2 years ago, the only difference from then and now is my mom's hair :) She says she's had as many different hair styles as I've had surgeries haha :) It's ever changing!

I am so blessed to be apart of this most incredible family. I couldn't have asked for a better family than this one right here! I wouldn't be who I am and look like I do now had it not been for my parents and my siblings. Such a crazy fun supportive, Christ centered family, I am always thankful to be apart of it. I have been given so many great opportunities being apart of this family from being able to travel, experience a private Christian school for 10 years, take piano lessons, to having surgeries, and being given the best possible life that my birthmom could have imagined me having. That's where it all leads to...looking back from where I stand now and looking at where I was. I could have been a poor begging child on a street or quite possibly not even be alive at this point in life, but God had a plan from the start. He always has a plan. He had a life planned for me that my birthmom couldn't see, but she made the choice, let me go, and gave me the opportunity at a new life. And as this journey continues on, His plan will continue be my life. I am incredibly thankful for everything I have been blessed with. I might keep posting some random parts to my journey between now and my next surgeries but I will be sure to keep you all posted as my next surgery will be coming in the next few months! :)

"Loved, Given Away, God's Plan, Adopted"- My six word life story