Lots of pictures!

Today we had pictures done with my whole family. It was the perfect day to take pictures. I put a couple on here that they took with my camera.

Sandbox on the 1st floor balcony

Our snowman building contest! Landon and I won!

My family spent the whole day feeding birds...the birds came up on our balcony and almost killed us. I am terrified of birds. Thanks family.

More Destin pictures!

These are some houses across the street from us.

The fountain in the courtyard of the entrance to our house.


The front door to our house.

A cute hut on our beach.

Staircase down to the beach.

Sunsets are my favorite.

The sunset tonight

"Taste and see that the LORD is good;
blessed is the man who takes refuge in him." Psalm 34:8

Destin Florida!

On Wednesday morning we left for Destin. We left at 4am and got to Destin around 9pm Wednesday night. It was a very long drive but my brother and I got Itouches for Christmas so that kept us happy.

My grandpa and aunt got here on Thursday morning around 4. My grandma was supposed to leave OKC at 8 on Thursday morning. Well the huge snow storm (apparently really huge storm) moved in and she was on 1 of the 3 planes to go out before the airport closed. She got here last night and now everyone is here! God was watching over us. It is GORGEOUS here. Our house is amazing and the view is even better.

The 1st floor is the house entrance. It has a small dining room, wet bar, living room, bedroom, and bath. It has a balcony overlooking the ocean. Every floor has a wall of windows to the ocean and balcony.

The private staircase down to the beach is off of the 1st floor balcony.

The 2nd and main floor has the kitchen, main living and dining room, half bath, bedroom with 4 bunks with private balcony, and bathroom, and laundry room. The living room, dining room, and kitchen are all along the wall of windows and balcony.

The 3rd floor has the master room (its a huge room) with a bathroom, 2 bedrooms with a balcony to the front of the house, and 2 bathrooms.

That's 5 bedrooms and 5 and a half bathrooms. It can fit like 20 people but we only have seven! It's so great!!

Since our house is 3 floors there is an elevator in it. I don't like elevators so I didn't go in the one here because it says "don't ride when home alone. Cell phones don't work in here". I'm not even kidding. Well I got the courage to go ride in it and my dad LOCKED ME IN IT. He pushed on the door from the outside so I couldn't get out...I FREAKED out. Almost cried. Lets just say that I don't ride the elevator very much. Also, there is a ghost living in the elevator. It just randomly goes from one floor to another and it's really loud. It's a great house though!!

Last night there was a huge storm here. More like a hurricane. There was a TORNADO warning on the BEACH. What did we do? We stayed on the 2nd floor and kept playing a card game. We also watched the huge waves! We're such rebels.

This morning (Christmas morning) we all had one present to open (since we had Christmas last week) and then we had a wonderful breakfast.

Now for the pictures! I will have to split this up into several posts.

Squirt and I in the elevator

Squirt and I on the 2nd floor balcony


Our house from the beach


So pretty

Tomorrow I will post more pictures!

"The heavens declare the glory of God;
the skies proclaim the work of his hands." Psalm 19:1

Christmas last week.

Since we are in Destin for Christmas we had Christmas last week at home. So here are some pictures from that.

Dear Lyme Disease

I hate to break it to you but I just wanted to inform you that your appointments to hang out with me December 23- January 1 are cancelled. Sorry. I am actually going to be hanging out with my friend Destin. Destin Florida that is. Destin doesn't accommodate people that have Disease as their last name. So since your name is Lyme DISEASE you can't come. Don't try any tricks either. I AM going to see Destin and I WILL have a great time without you. Thanks for understanding.

Victoria on behalf of Destin

New Video about My Story

This is a better version of my story. I made the slides longer so you can actually read them and I added another song!

I made it longer because last night they showed my video to the youth group along with the story of another teen battling cancer. It was a great night of praise and encouragment.

I've gone to every hospital today.

I went to the sleep doctor last week and he decided to take me off the Neuronton because of my side effects. So I'm not taking that anymore. I started back on the Amitriptyline to help with sleep.

I got to do a lot over the weekend! It was so great!!

I have started going to Guthrie everyday to do an infared sauna to help with detox. I know it sounds relaxing but I really don't like it. I feel like I'm suffocating in the sauna...

So today I went to Guthrie then I went to Children's hospital. Every week I go there to a psychologist team who helps kids and teen in chronic pain deal with coping and try to control what we can control. They know about the reality of dealing with dailey chronic sickness in children and teens. Today was only my second time but they are really nice!

When I got home we called the hospital and they said to come on out for the blood cultures. No one told us when to come so we had to call ourselves. Around 4 we headed out to Mercy hospital. First I checked in at Admitting. Ok, hold on. The admitting nurse first asked for my name and date of birth. Then I'm guessing she put that in the computer but it took about 15 minutes. I mean, really? What do they really do when they check you in? Check emails? Secretly Facebook chat with the other nurses about their crazy patients? Who knows, but it takes way too long.

For a blood culture they have to take blood out of both arms because they are looking for an infection in the blood. They watch the cultures for about 48 hours and see if anything grows. The nurse actually found my veins! Hopefully they will actually call us with the results!

After having the blood cultures the nurse at the lab sent us to radiology to have an Echo (echocardiogram) of my heart. Well there was SO much confusion and I wasn't on the schedule. They tried to fit me in but the test takes about an hour so they didn't have time for me. It was a long process. I'm finally home!

I got to go to Guthrie, Children's hospital, and Mercy hospital today! It was a crazy day!

"....And I'm going to keep that celebration going because I know how it's going to turn out. Through your faithful prayers and the generous response of the Spirit of Jesus Christ, everything He wants to do in and through me will be done. I can hardly wait to continue on my course...." Philippians 1:18-21 (the Message)

So many appointments

There has been a lot of medical things to figure out lately. I am probably forgetting something but hopefully I'll remember everything that has been going on. Last week at my pain management appointment we mostly discussed my heart rate problems. They asked if I had the heart problems before my port. I said no and they explained that the port goes from my right chest, up to my neck through the jugular vein and down straight to my heart. If the port is too long it can actually kinda stab into your heart and irritate it. So I had some xrays done at the hospital to see if my port was too long. They said it would be easy to fix so we were hoping that was the problem.

We called them back today and they said that my port is fine..

We talked to my Lyme doctor in Nevada yesterday and he said that if it is not the port, then there could be a couple things going on. The Lyme could be really getting inside my heart and attacking it, causing the fast heart rate. Or I could have an infection in my blood causing the fast heart rate and nausea. He wants me to go to my primary care and have a blood culture.

I'm still taking the Neuronton (the anti-seizure medicine) and I hate it so much. The pain management doctor wants me to stay on it. I also go to the sleep doctor tomorrow so we'll see what he says about that. I take it when I get up and when I go to sleep so I just feel out of it and confused all the time. I feel like I'm in a dream. I don't think there are any other options though so I guess I'll have to stay on it.

On a happier note, my family is going to Destin, Florida for Christmas! We are renting a house right on the beach. I'm so excited! My grandparents and aunt are going with us too!

Christmas is so soon! I'm getting excited!

"Though the fig tree does not bud
and there are no grapes on the vines,
though the olive crop fails
and the fields produce no food,
though there are no sheep in the pen
and no cattle in the stalls,

yet I will rejoice in the LORD,
I will be joyful in God my Savior.

The Sovereign LORD is my strength;
he makes my feet like the feet of a deer,
he enables me to go on the heights." Habakkuk 3:17-19

My journey video!

A year ago today I was diagnosed and started treatment. Here's the video I made about my journey! There's music so make sure and turn that on.

If doctors were money, I'd be a millionaire..quick update

I wish there was a contest of who had the most doctors..because I think I would be close to winning. My primary care doctor called and said that he wants me to see a Cardiologist for my rapid heart beat. They couldn't get me in until February though. That will be my 9th doctor right now! Goodness. Every doctor wants to send you to someone else, who sends you to someone else, and so on. At least I have doctors!

I'll try to update after my Pain Management appointment today. We have lots of things to talk about so I should have more answers (hopefully).
I hope you have a great day!

God's timing, not mine

This has been a hard few days..little sleep (it's 2:30 am right now and I'm wide awake...) and side effects from my new anti-seizure/sleep medicine (I'm not taking it for seizures. It's supposed to help with sleep and pain). I've been dizzy and just feel so out of it. I feel like I'm going to pass out all the time. I'm still not eating a lot which doesn't help with the lack of energy.

On Wednesday I go to my pain management doctor. They don't know that I stopped taking the medicine they put me on so that will be a nice surprise for them. Hopefully they will understand since it seemed to be causing my 140 pulse. My pulse is still 120 after being off the medicine for a week. We're waiting to hear back from my primary care doctor to see if I need to have more heart tests run and see a Cardiologist.

Quiet time with God is a hard discipline to practice. We almost always only do it when it is convenient for us. Lately, God has been requesting the 1-7 am time slot for our quiet time. I have asked Him several times if He could maybe switch times to when I can see His pretty blue sky and sun (or cloudy sky, either is great with me!), but He is sticking to the 1-7 am time slot. It is easier to hear Him and talk to Him since there are no distractions (absolutely nothing on tv, no one else on the planet awake..those kind of things) We have also had some serious conversations around 3 am when I get a little frustrated that I'm still not asleep. Maybe I should stop trying to argue with God and just "be" there, not worrying about what time it is..

I'm almost done with the video I'm making about my journey through the first year of treatment so I will post that Thursday!

This verse speaks to me a lot right now.

"Be still, and know that I am God;
I will be exalted among the nations,
I will be exalted in the earth." Psalm 16:10

A year ago

A year ago if you told me that I would still be sick today, I wouldn't have believed you. I knew there was no way that I could still be sick. But here I am today, still sick. No, I didn't want this. But God has renewed His promises every day. Some days it is easier to act like everything is normal. But then there are those days that reminds me how horrible this disease is and what it has done to my life. I just want to say really?! Is this really happening?

We live in a culture that says we're supposed to always hide our struggles and be fake. If we never talk about our struggles, how can we tell others what God has done in our lives or even realize what God has done in our lives?

The past holidays have been days with lots of food and games. Then there was this year.. Diseases don't take breaks for the holiday's or your birthday or work around your plans.. They are a constant reminder of the reality of sickness.

This year, I didn't have an appetite so eating wasn't something to look forward to, which I hate because I love food! I love all food and before I got sick I ate all the time. It's weird to get nauseous even if someone just mentions food. I'm the oldest of my cousins but I couldn't really play with them because I was in too much pain or too tired. I had to spend today hooked up to an iv pole and I cried because of the pain.

And yet, despite all of this, I am more thankful than I was a year ago. No, none of this is fun or what I asked for, but I am SO blessed. I have hope about something better. I know that one day I won't have to deal with all of this in heaven. I am one of the luckier ones with this disease. I don't have seizures or paralysis which is something to be so thankful for.

I'm very blessed and thankful for everything God has given me. A lot of times I forget what I do have because I focus on what I don't have.

Days like today just remind me of how much my life has changed in the past year. Lot's of bad things have happened and are still happening. But spiritually, more good has come out of it than bad. Yes, there are lots of days when I just say "why?!". But I'm learning to trust God in every situation and remember His promises because He is so faithful and never lets us go.

The days seem so long since I can't sleep. It's 6:15am and I still haven't gone to sleep. I'm so worn out. So please pray that I will be able to get some sleep in the next few days.

Last night I was upset about being sick on Thanksgiving and I looked at the sunset and was reminded of God's awesome power and peace that He gives. I love all the reminders He gives us.

These are some of my cousins! They are great!

When the Tears Fall by Newsboys

"I've had questions, without answers
I've known sorrow, I have known pain
but there's one thing, that I'll cling to
You are faithful, Jesus You're true

when hope is lost, I'll call You Saviour
when pain surrounds, I'll call You healer
when silence falls, You'll be the song within my heart

in the lone hour of my sorrow
through the darkest night of my soul
You surround me and sustain me
my defender, forevermore

when hope is lost, I'll call You Saviour
when pain surrounds, I'll call You healer
when silence falls, You'll be the song within my heart

and I will praise You, I will praise You
when the tears fall, still I will sing to You
and I will praise You, Jesus praise You
through the suffering still I will sing

when hope is lost, I'll call You Saviour
when pain surrounds, I'll call You healer
when silence falls, You'll be the song within my heart

oh yes, You are good to me
You've always been good to me
so trustworthy

when hope is lost, I'll call You Saviour
when pain surrounds, I'll call You healer
when silence falls, You'll be the song within my heart

and I will praise You, and I will praise You
when the tears fall, still I will sing to You
(I will sing to You) I will praise You,
Jesus praise You through the suffering
still I will sing

how faithful and true
sustain me through and through
You are hope and truth
You're my spring of living water
You're my spring of living water

in the lone hour of my sorrow

who springs never fail
be faithful and true
like...
like a spring it never fails
you're my spring never fails"

"For I hold you by your right hand—
I, the Lord your God.
And I say to you,
‘Don’t be afraid. I am here to help you." Isaiah 41:13
"Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you." Deuteronomy 31:6

Thank you so much for all your prayers.

Another New Doctor

Today I went to my primary care for some random things going on. My heart rate is way too high. My heart should be about 80 beats per minute but mine is from 130-150 beats per minute. So we discussed what could be causing it to be so high. I had an ekg at the doctor's office and it just showed that my heart was really fast..thanks doctor for telling me what I already knew. Anyway, he wants me to stop taking my Amitriptyline because a side effect can be Tachycardia, which means fast heart beat. I'm going to monitor my heart and see if it slows down over thanksgiving since I will be off the medicine. If it slows down, great! If not, we will be sent to a Cardiologist for more tests. Hopefully it will slow down!
My doctor wants me to go to an Endocrinologist. We need to see if my adrenals and thyroids are working or not. So that will make my 8th doctor that I am dealing with right now.

Next week is my 1 year mark of diagnosis and treatment so I'm making a video of my story that I will post on here next week!

I cried out, “I am slipping!”
but your unfailing love, O Lord, supported me.
When doubts filled my mind,
your comfort gave me renewed hope and cheer. Psalm 94:18-19 (NLT)

When I said, "My foot is slipping,"
your love, O LORD, supported me.
When anxiety was great within me,
your consolation brought joy to my soul. Psalm 94:18-19 (NIV)

I hope you have a great thanksgiving!! I'm thankful for all of you and your prayers!

A little worried...

I just got home from the sleep specialist. He was very nice and helpful! We went through my story and he diagnosed me with restless leg syndrome. I am sleeping longer, but it's not restful sleep. So he is putting me on Neurontin. It is really an anti-seizure medicine that changes chemicals in the body. It will hopefully help with sleep, restless leg, pain, and a few other problems. Once I get up to a dose that works for me, I will be taken of the Amitriptyline.
My blood pressure is always 90/72 or around there. My pulse is usually 100 which is really high. For the past month I can feel my pulse when I'm still and my pulse has been 120 or so. Today my pulse went from 145 to 130 and moved back and forth around a lot. The doctor got really scared. I thought he was going to send me to the hospital. He called my primary care doctor to tell him so we'll see what he does.
My lab results showed that something with my iron is low. He's putting me on iron pills. He said that it can upset your stomach which is bad because I'm already nauseous. So if makes me too sick he said I would be put in the hosptial and get IV iron. Hopefully it won't come that.

So please be praying that my heartrate is not serious and that I can stay out of the hosptial.

Small Victories

Well, this weekend was busy and good! I didn't have a lot going on, I just got out of the house five days in a row!! My friend had surgery so I got to hang out with her everyday, which was great! On Sunday I was pretty wiped out. I still went to church though. I was debating staying home because I didn't feel good. I'm so glad I went! I know I go to church a lot for selfish reasons, so I love when God brings us to church and the lesson is just what we needed. The lesson in class was about sharing our story with people. It was a great lesson!

One of the key things I have learned is to look for small victories that God has gotten me through. Getting out of the house doesn't sound like a big deal for most people. But God blessed me with five days of feeling okay so that I could be there for my friend! Life would seem so much worse if we didn't look at the small victories. No I'm not physically well, but I got to leave my house for five days in a row!!

Today I was supposed to see my pain management team at the hospital, but they cancelled it. We've had to reschedule it several times since I had the flu so we are ready to see them.

On Thursday I go to the sleep specialist. We've rescheduled that appointment several times too. Hopefully I will be able to go!

Another strange thing that has happened is that my PICC line hole is still there.. my nurse said that it might never close in all the way. It's a little weird!

I haven't been sleeping well so I've been more worn out. I also have a cold right now..

Today I am thankful for the the medical knowledge that we do have.

"Even though the fig trees have no blossoms,
and there are no grapes on the vines;
even though the olive crop fails,
and the fields lie empty and barren;
even though the flocks die in the fields,
and the cattle barns are empty,
yet I will rejoice in the Lord!
I will be joyful in the God of my salvation!
The Sovereign Lord is my strength!
He makes me as surefooted as a deer, able to tread upon the heights."

Habakkuk 3:17-19

Another new plan

I'm finally over the flu! It didn't last too long which is great!

On Wednesday I got to get out of the house and we went to my doctor in Seminole. We discussed how everything is going. The plan is for me to start a detox kit and then start more antibiotics. I need to start killing the Lyme bacteria again because I'm having more neurological symptoms. I have constant muscle twitches and my foot has gone numb a couple times. That means that the Lyme is really getting into my brain. We cannot let it spread or get into my brain anymore.

We also discussed what to do since I don't eat very much. I've lost even more weight since I've had the flu. She said hopefully it's just a virus that is making me nauseous and it will go away soon. We're praying that's what it is!

At the doctor I got an IV called a Meyers Cocktail. No it's not alcohol...haha but it is full of vitamins and minerals. It made me fell better!

I got to go to church Wednesday night!!

I'm going to start saying what I'm thankful for each day until Thanksgiving. I challenge you to do the same! I think we need to remember how much we are blessed even in these hard times.

Your Hands by JJ Heller

"I have unanswered prayers
I have trouble I wish wasn’t there
And I have asked a thousand ways
That you would take my pain away
You would take my pain away

I am trying to understand
How to walk this weary land
Make straight the paths that crooked lie Oh Lord, before these feet of mine Oh Lord, before these feet of mine

When my world is shaking, heaven stands
When my heart is breaking
I never leave your hands

When you walked upon the earth
You healed the broken, lost and hurt
I know you hate to see me cry
One day you will set all things right
Yeah, one day you will set all things right

When my world is shaking, heaven stands
When my heart is breaking
I never leave your hands

Your hands that shaped the world
Are holding me
They hold me still"

I am thankful for God's promises that tells us that He never lets go of us.

I hope you have a great weekend!

Are you kidding me?!

My parents took me to my primary care doctor today. Yesterday I started getting a lot worse. Today I couldn't get warm and when I moved my eyes around they really hurt, so we decided I needed to go to the doctor. My cheeks look like I've been sunburned because of my fever. My fever has been 101 all day. I took some Advil and it went down to 100 but it's going back up again. I have a bad cough too along with the body aches and pain. I just feel like crud. I always feel like that but this is like crud x4.

We were thinking I just had a sinus infection or something. If I had a sinus infection that would just be too easy to take care of. Life can't be that easy. Good thing we went to the doctor because I have THE FLU. What?! I can't get the flu...too late. I guess I've had it for a few days now. So I got some medicine and we're praying that the medicine will work.

Please pray that I will get better soon and that it doesn't get too serious. I appreciate all your prayers so much!

Hope of Heaven

It has been a very hard weekend. Friday was especially sad for so many. My family went to the funeral for the 2 year old boy who drowned. There were a lot of people there to support them. The funeral was good if you can say that..

We laughed at all the cute videos and smiled at the sweet pictures. There was a precious video of him singing Jesus Loves Me. He had so much joy and didn't have a care in the world. He truly loved life. Jesus tells us to watch and learn from little children.

"And he said: 'I tell you the truth, unless you change and become like little children, you will never enter the kingdom of heaven.'" Matthew 18:3

We also cried because there is so much pain. Nothing can take that away.

After the service, we went to the grave site. A lot of people also went to the grave site. This family is so loved. Once everyone was there we read a scripture and released doves. While we watched the doves fly around, they played Jesus Loves Me again. We smiled at the thought of being in heaven, and being free from pain. But we came back to reality and realized that we aren't free from pain here. We hugged the family and just cried with them. Our lives will eventually go back to "normal"..but theirs won't. We need to keep reaching out to them for months and years to come. It's still hard thinking about it.

This song is one that they played at the funeral. If you have a chance, go listen to it. It's so sweet.

Glory Baby by Watermark

Glory Baby, You slipped away
As fast as we could say baby, baby
You were growing, what happened Dear,
You disappeared on us baby, baby
Heaven will hold you before we do
Heaven will keep you safe
Until we're home with you

Until we're home with you
CHORUS
We miss you everyday, miss you in every way
But we know there's a day when we will hold you, we will hold you
And you'll kiss our tears away, when we're home to stay
We can't wait for the day when we will see you, we will see you

so baby let sweet Jesus hold you, until mom and dad can hold you
You'll just have heaven before we do
You'll just have heaven before we do
Sweet little baby, it's hard to understand it
Cause we are hurting, we are hurting
But there is healing, and we know we're stronger people
Through the growing, and in knowing
All things work together for our good
And God works his purposes
Just like he said he would, just like he said he would
CHORUS
We miss you everyday, miss you in every way
But we know there's a day when we will hold you, we will hold you
And you'll kiss our tears away, when we're home to stay
We can't wait for the day when we will see you, we will see you
So baby let sweet Jesus hold you, until mom and dad can hold you
You'll just have heaven before we do
You'll just have heaven before we do

BRIDGE
I can't imagine Heaven's lullabies
And what they must sound like
But I will rest in knowing
Heaven is your home
And it's all you'll ever know, all you'll ever know

"Brothers, we do not want you to be ignorant about those who fall asleep, or to grieve like the rest of men, who have no hope. We believe that Jesus died and rose again and so we believe that God will bring with Jesus those who have fallen asleep in him. According to the Lord's own word, we tell you that we who are still alive, who are left till the coming of the Lord, will certainly not precede those who have fallen asleep. For the Lord himself will come down from heaven, with a loud command, with the voice of the archangel and with the trumpet call of God, and the dead in Christ will rise first. After that, we who are still alive and are left will be caught up together with them in the clouds to meet the Lord in the air. And so we will be with the Lord forever. Therefore encourage each other with these words." 1 Thessalonians 4:13-18

Almost my whole family is sick. My dad has pneumonia and my brother has a sinus infection. It's just wonderful.

I've not been feeling too well. I'm not really eating anything. It's been like this for a week or so. I'm just not hungry. If something does sound good, we'll fix it, but by the time that I start to eat, it doesn't sound good anymore. I'm always nauseous and when I eat it gets worse.

We talked to my doctor in Seminole and I'm going to see her next week. We have to figure out what to do about this because I can't lose anymore weight. I've lost so much already.

Thursday I'm going to see a sleep specialist. This will be another doctor to add to the list.

Today I've been so achy and in so much pain. I've had to take my pain medicine as often as I can. When the pain medicine starts wearing off, I don't even move because of the pain. I also have a fever and a cough. We're watching it very closely. I would rather not end up in the hospital with the flu or pneumonia.

My mom accessed my port for the first time today without a nurse here. It went well! I'm leaving it accessed for a few days since I'm feeling so bad. I'll probably do at least an IV a day.

Please keep praying for the little boy's family. And also that I will not get too seriously sick.

Praise the King

My mom just accessed my port without a nurse helping! So I am done with home care nurses!! I have had a home nurse for the past 7 months. I love them, but I'm glad to be free from them! Today we are leaving my port accessed for a few days so that I don't have to have the needle put in every time I need to do an IV.

This week has been good so far! I went to a Bible study Monday night, and yesterday I got to get out of house after I finished some school work.

At the Bible study we were challenged to have conversations that achieve righteousness, love, and grace. We were also challenged to start sharing what God is specifically been doing in our lives. We are really blessed, but never really tell anyone what God is doing right now in our lives. These are a couple of verses from the Bible study.

"We put no stumbling block in anyone's path, so that our ministry will not be discredited. Rather, as servants of God we commend ourselves in every way: in great endurance; in troubles, hardships and distresses; in beatings, imprisonments and riots; in hard work, sleepless nights and hunger; in purity, understanding, patience and kindness; in the Holy Spirit and in sincere love; in truthful speech and in the power of God; with weapons of righteousness in the right hand and in the left; through glory and dishonor, bad report and good report; genuine, yet regarded as impostors; known, yet regarded as unknown; dying, and yet we live on; beaten, and yet not killed; sorrowful, yet always rejoicing; poor, yet making many rich; having nothing, and yet possessing everything."

2 Corinthians 6:3-10

"But just as you excel in everything—in faith, in speech, in knowledge, in complete earnestness and in your love for us—see that you also excel in this grace of giving"

2 Corinthians 8:7

"Be wise in the way you act toward outsiders; make the most of every opportunity. Let your conversation be always full of grace, seasoned with salt, so that you may know how to answer everyone." Colossians 4:5-6

I have gotten a lot done this week! I actually get to go to church tonight!! I haven't been to Wednesday night church in FOUR WEEKS. I have missed it so much.

Praise the King by Cindy Morgan

"Praise Him in the morning
For tall and lofty trees
And praise Him in the evening
For children on their knees
Oh and praise Him in the noon day
For gentle birds that sing
Oh praise Him all ye people
Praise the King
And praise Him for a peaceful porch
And rocking chairs that sway
Praise Him for the rolling hills
Where children laugh and play
Oh and praise Him for the wandering soul
That never lost their way
Oh praise Him all ye people
Praise the King
Chorus:
Praise the King
Praise the King
Let it ring
Praise the King
Praise the King
Praise the King
Let it ring
Praise the King
And praise Him for the blood that fell
And bloomed a rose that day
And praise Him that He suffered through the guilt, the grief, the shame
Oh and praise Him that His tender love will still forgive today
Oh praise Him all ye people praise the King"

Please pray for this family.

This weekend has been very hard for many people. My brother (Landon) is 11 years old and his best friend was over at our house Friday. We got a call that his 2 year old brother had drowned in their pool and was in critical condition.
The little boy went to heaven yesterday. We know that Jesus is holding him. I'm so sad for this sweet family. So many people are hurting for them. They have been through so much.
Landon got to see his friend yesterday. He said that it was really hard to see him like that, and that he told Landon about everything that happened.
We don't know why stuff like this happens. It's not fair to them.

But what we do know is that God keeps his promises. The promises don't take the pain away, but it gives us hope. Hope that we will see him in heaven. We have to have faith that God is always faithful to us.

"Remember your promise to me;
it is my only hope.
Your promise revives me;
it comforts me in all my troubles."
Psalm 119:49-50

Please be praying for this family.

I'm hooked up to an IV right now. The nurse is here and watched my mom access my port for the first time. I think I'm getting used to it being accessed..but it will take a while.

Not what I expected...

It has been a long, hard week! Earlier this week my parents were up until 5am with me because I was so sick. We cancelled my appointment with the sleep doctor since I was sick.

Today my home care nurse came and accessed my port for the first time. It has to be very sterile. You clean the port site with betadyne and alcohol first. Then you grip the port with one hand and stick the special needle in with the other hand. The needle is 3/4 of an inch long and is bent at a 90 degree angle. The needle doesn't go in all the way so part of the needle is just out of the skin. After that you put a dressing over the port so that the needle doesn't come out. Connected to the needle is a tube that you flush the port with and then hook up the IV. Once the IV is done, you flush the line with Heparin and then take the dressing off and pull the needle out.

Today the nurse pulled the needle out and we forgot to flush it was Heparin. So we had to do the whole process AGAIN. It was frustrating.

I'm supposed to get a numbing cream to put on the port site 45 minutes before we access it to help with the pain. I didn't have the numbing cream today and it really hurt. It's not like a normal needle prick. It's not what I expected. Pulling the needle out hurts a lot too. It's just weird and painful.

My mom is learning how to access it so that we won't have to have a nurse come every time. They said we're only supposed to access it 2 times a week. I have to do an IV at least 3 times a week. That means that we are going to have to leave my port accessed for a few days at a time. When the port is accessed, that means that the needle with the tubing is still in and there is a dressing on it. So I won't be able to shower when it's accessed because it can't get wet at all. It is going to take some time to get used to because it feels really weird while the needle is in. I will have to be very careful while it's accessed since part of the needle sticks out. They said that I'm supposed to just tape the tubing to my skin so that it doesn't pull the needle out.

My friend found this Halloween IV bag!! It has fake blood in it and you can drink it! haha I love it!!

Here is what it looks like when my port is accessed. The needle is in the center of the port.

Tonight I get to go to a bonfire at the lake with the youth group girls! I'm really excited!! It will be the first time I have gotten to leave the house this week.

We also decided that we can't go to Disney World right now. So we finally cancelled it.

"The LORD is my strength and my shield; my heart trusts in him, and I am helped. My heart leaps for joy and I will give thanks to him in song."
Psalm 28:7

Whatever Your Doing by Sanctus Real

"It's time for healing time to move on
It's time to fix what's been broken too long
Time to make right what has been wrong
It's time to find my way to where I belong
There's a wave that's crashing over me
And all I can do is surrender

(Chorus)
Whatever You're doing inside of me
It feels like chaos but somehow there's peace
It's hard to surrender to what I can't see
but I'm giving in to something Heavenly

Time for a milestone
Time to begin again
Reevaluate who I really am
Am I doing everything to follow Your will
Or just climbing aimlessly over these hills
So show me what it is You want from me
I give everything I surrender...

Time to face up
Clean this old house
Time to breathe in and let everything out
That I've wanted to say for so many years
Time to release all my held back tears

Whatever You're doing inside of me
It feels like chaos but I believe
You're up to something bigger than me
Larger than life something Heavenly

Whatever You're doing inside of me
It feels like chaos but now I can see
This is something bigger than me
Larger than life something Heavenly
Something Heavenly

It's time to face up
Clean this old house
Time to breathe in and let everything out"

Too many doctors

I had a good weekend. A couple of my friends came over and I got to go to church yesterday. I hadn't been to church is 2 weeks so it was great to get to go!

Today I had a follow up appointment with the surgeon. He said my incisions are healing well. I told him it still hurts a lot and he said since I'm in pain, from the Lyme everyday, that it will just take me longer to heal from surgery.

Tomorrow I have an appointment with a new sleep doctor. I don't know what that's for. Right now I have so many doctors. I have a Lyme doctor in Nevada, a Lyme doctor in Seminole, a pain management team at Children's Hospital, a surgeon at Edmond Hospital, my primary care, a sleep doctor, and home nurses. That's 7 different groups to keep up with. It's crazy right now.

We're trying to figure out what to do about my port because the surgeon and home care group keep telling us different things. The surgeon says that my mom can learn how to access my port at home. That's the whole reason I got the port put in. The home care group says that my mom can't do that, a nurse has to. So we're trying to figure out what to believe and do about it. I haven't been able to do an IV in 2 weeks which makes me feel worse.

School is so hard. I haven't done any since I had surgery. I learned a whole bunch of new things in algebra before my surgery and now I have forgotten it since it's been so long. It's hard to figure out when to do my school work. Between all the appointments and everything it is stressful. At home, I'm either too sick to work on school, or I feel okay and need to get out of the house.

We're supposed to go to Disney World in Florida next Friday. I'm so excited because I will get to swim since my port is under the skin. It will be great to not have to go to any doctors appointments for a while. I'll have to be in a wheelchair everywhere we go down there. I will also have to do IVs when we're back at the hotel. The good part is that if your in a wheelchair you usually get to go to the front of the lines.

Bring the Rain

Flowers are so beautiful! It's been rainy and chilly ever since I had surgery so it's great to have flowers that are so cheerful! I'm very thankful for the flowers, encouragement, and mostly prayers.

Such pretty flowers!

You can kind of see the bandage on the side of my neck. The ChloraPrep that I'm allergic to is on my face, chest, and my shoulders and the top my arms. They said they don't wash it off because it continues to fight bacteria for 48 hours.

You can see spots of the ChloraPrep on my arms and back. They also left those white stickers on me. I had them on my chest, stomach, and shoulders. They were used to monitor me.


My PICC line is out!! That arm has had a rash for 7 months from the PICC line. I'm ready for it to clear up! You can see the hole from the line in the middle of my arm. It is just a hole..very weird!

These are my incisions. Don't worry, they're covered up with bandages so you don't have to see them! The one on my chest is 2 inches long. I'm not sure about the one on my neck. I found out that the tube that runs between them is right under my skin. I can follow it with my finger. It's so weird!! It goes on top of my collar bone up to the incision in my neck. I'm still trying to get used to the port. I can feel it when I move or breathe..which is pretty much all the time since I'm usually always breathing. The port sticks up from under the skin and it is a circle.
You can also see how red and swollen my neck and chest are. Usually you can really see my collar bone and all the other bones. This was before the hives and swelling got really bad.
Thankfully the hives are getting better! My neck is still swollen from the incision though.

Bring the Rain by Mercy Me
I can count a million times
People asking me how I
Can praise You with all that I've gone through
The question just amazes me
Can circumstances possibly
Change who I forever am in You
Maybe since my life was changed
Long before these rainy days
It's never really ever crossed my mind
To turn my back on you oh Lord
My only shelter from the storms
But instead I draw closer through these times
So I pray
Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know they'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus Bring the Rain
I am Yours regardless of
The dark clouds that may loom above
Because You are much greater than my pain
You who made a way for me
By suffering Your destiny
So tell me what's a little rain
So I pray
Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know they'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus Bring the Rain
Holy, Holy, Holy
Is the Lord God Almighty"
"But as for me, I will always have hope;
I will praise you more and more." Psalm 71:14
I hope you have a great week!

Outpatient doesn't mean easier...

The morning of surgery my nocturnal body decided to wake up at 3:50am. I didn't have to get up until 5 so I layed in bed and listened to Klove. It was so encouraging to listen to all the songs about God carrying me no matter what is going on in my life.

We left for the hospital at 5:45am. I'm still not sure why check-in takes so long..it took about an hour to get checked-in. They finally put me in my room at 7. The room was really big so my grandparents and everyone got to stay in the room too. Since we couldn't use my PICC line they had to start an IV. They had to take blood too so they had to find 2 veins. The nurse didn't have any problem finding the veins. She actually said that I have such great veins. Are you kidding me?! I started laughing because I couldn't believe she actually said that.

They took me to the holding room at 7:45. Only 2 people could come with me so my parents went. The surgeon and anaesthesiologist were waiting to talk with us. The nurse gave me something to start to relax me. I wasn't in holding for more than 10 minutes. Everything happened so fast in there. They took me to the OR right at 8. When they were taking me to the operating room, it felt like a movie. Everything was white and freezing cold. Everyone had the blue scrubs on and everyone was looking at me being wheeled past. It seemed like everything was in slow motion..I guess the relaxing medicine was starting to work. In the OR, they made me get on the table by myself. They didn't say anything to me, they just put the mask on my face and that's all I remember. The surgery lasted an hour and then I was put in recovery. I woke up after being in recovery for 45 minutes. I woke up in a ton of pain so they gave me lots of pain medicine. The pain medicine they gave me was 10 times stronger than morphine. I was still in a ton of pain though. My chest and neck hurt. It really confused me because the port was put in my chest, not my neck. They finally took me back to my room after being in recovery for an hour and a half. The gown I wore had a place to hook it up to a machine and the machine put warm air into the gown. It was the best part of surgery! It kept me so warm.

Once I was back in my room, I started hurting more. My mom said that I had a bandage on my neck too. So we asked the nurse why it was there. Apparently they had to cut my neck to get the catheter from the port into a bigger vein in the neck. I was in so much pain so the nurse finally agreed to giving me morphine. We tried to get the pain under control for a couple hours. They sent me home at 1:45pm. Since they attached the port to a muscle in my chest, it hurts every time I move or talk. The worst pain is my neck though.

When I got home, I was so nauseous from the anesthesia. Tuesday night I noticed that I was starting to get a rash on my chest. They hadn't washed the cleaning stuff off so i was covered in it. The rash kept getting worse everyday. It's all over my chest, neck, face, arms, and any where else they put the cleaner. Apparently I'm really really allergic to whatever they cleaned me with. Yesterday my chest and neck were so swollen. You can't even see my collar bones. So we went to the after hours clinic last night. They gave me a steroid shot and told me to keep taking benadyrll. After we got home the itching was out of control. I couldn't take it anymore. I was so frustrated. My mom went to a health food store at 9 last night to see if they had anything to help. She got some spray and it finally calmed the itching and pain down. I haven't been sleeping good because of the pain from surgery and the hives all over me.

Since the surgery was outpatient I thought it wouldn't be a big deal at all. I was so wrong. I'm still in a lot of pain and feel horrible. The surgery was bigger than we thought and on top of that I have hives. I don't have my appetite back either. I'm praying that the hives will go away soon and that the incisions will heal fast.

Thank you for all your prayers! Please keep praying for me to recover soon.

Surgery tomorrow

Tomorrow is surgery day. The PICC line is coming out and the port is going in! Check-in time at the hospital is 6am. The actual surgery starts at 8am. Since I had that big PICC line problem Saturday, we don't think they will be able to use the line during surgery. They thought that they could use it for IVs during surgery then take it out when I'm in recovery. But I think they will have to start an IV somewhere. That will work out well since I have horrible veins and I'm not allowed to eat or drink starting at midnight...so my veins will shrink even more from dehydration. Good luck nurses! I should use a sharpie and mark where my veins are for the nurses so that they might be easier to find.. I don't know when they'll take my PICC line out since they can't use it. I really hope I'm asleep when they take it out. It really freaks me out to think of them just pulling it out all the way from my chest! They say it doesn't hurt but still..it freaks me out.
These are comforting verses about God fighting for His children. God has everything already planned out for me. He knows about my worries even before they happen. He knows what's best for me and he is fighting for me.

"And we know that in all things God works for the good of those who love him, who have been called according to his purpose."

Romans 8:28
'Moses answered the people, "Do not be afraid. Stand firm and you will see the deliverance the LORD will bring you today. The LORD will fight for you; you need only to be still."'

Exodus 14:13a-14
"The LORD your God, who is going before you, will fight for you, as he did for you in Egypt, before your very eyes, and in the desert. There you saw how the LORD your God carried you, as a father carries his son, all the way you went until you reached this place."

Deuteronomy 1:30-31
"your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be."

Psalm 139:16
"For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal."

2 Corinthians 4:17

Let the Waters Rise by Mikeschair
Don’t know where to begin
It's like my worlds caving in
And I try but I can't control my fear
Where do I go from here

Sometimes it's so hard to pray
When You feel so far away
but I am willing to go where You want me to
God I Trust You

There's a raging sea
Right in front of me
Wants to pull me in
Bring me to my knees

So let the waters rise
If You want them to
I will follow You
I will follow You

I will swim in the deep
Cuz you’ll be next to me
You’re in the eye of the storm and the calm of the sea
Your never out of reach

God You know where I’ve been
And You were there with me then
You were faithful before You’ll be faithful again
I’m holding Your hand

There's a raging sea
Right in front of me
Wants to pull me in
Bring me to my knees

So let the waters rise
If You want them to
I will follow You
I will follow You

God Your love is enough
You will pull me through
I’m holding onto You
God Your love is enough
I will follow You
I will follow You

There's a raging sea
Right in front of me
Wants to pull me in
Bring me to my knees

So let the waters rise
If You want them to
I will follow You
I will follow You

"I thank my God every time I remember you. In all my prayers for all of you, I always pray with joy because of your partnership in the gospel from the first day until now, being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus."
Philippians 1:3-6

Here's another one of my favorite pictures from Vienna!

They know me by name at the hospital...

Today has been an interesting day...I had a good morning just hanging out. My brother is at a church retreat so it's just me and my parents. He is also going to a camp with school on Monday-Wednesday. It's like a whole week of camp for him! So it's been quiet around the house. I decided to do an IV this afternoon. My PICC line has been so hard to flush lately which hasn't been a big deal since I'm getting it out Tuesday. So I flushed the line today and it was even harder to flush. I just ignored it and moved on. I started the IV and less than 5 minutes into it, my chest started burning inside, I couldn't breathe, and I felt like there was something in my lungs. I couldn't stop coughing which made breathing hard too.

My parents immediately took me to the hospital. You can't mess around with PICC lines or ports. You have to do something fast if something is wrong. We got there and the waiting room was full. When the triage nurse saw me she took me straight to a room because she saw how bad things were with me. It was really scary. They got me all hooked up the monitors and my oxygen level was good. My blood pressure was really high though. They ordered xrays of my chest to make sure there wasn't a blood clot or that my PICC line wasn't torn. He also wanted to make sure I didn't have pneumonia. The xrays came back clear which is a good thing! The doctor said since the PICC line has been in so long (7 months) my lungs and where the PICC line is could just be irritated. He said not to use the line anymore since I'm getting it out Tuesday. So they sent me home after a couple hours. I'm glad to not be there anymore! There were tons of people with the flu there.. I used to be in the ER at least once a week for several months. So I got to know everyone there! I love the nurses! They always come hang out in my room and just chat. Except I usually go in the middle of the night instead of the day...so I didn't know the nurses today.

My chest still hurts some but I'm doing a lot better. I'm so ready to get the PICC line out. I just have to wait until surgery Tuesday!

"My soul finds rest in God alone;
my salvation comes from him." Psalm 62:1

God can, God is!

At church I'm on the leadership team in the youth group. I'm specifically on the prayer team. There are six of us who make up the team. Our goal is to help make prayer something that isn't just something we do because we're supposed to. God CAN do anything and God IS answering our prayers. So the 6 of us decided that every night at 9:30 we were going to do a 6 way call to pray together. Since there are 6 of us, we each have a night to say the prayer and the 7th day we just decided who is going to pray. I honestly didn't know how long this would last. But it's been so great!! I don't think we've missed a night for the 2 weeks we've been doing it. We all stop what we're doing every night and share prayer requests and talk about what's going on. Then we pray. I look forward to every night because it's so encouraging to have a group of us that are dedicated to being there for each other and praying together.
We made a bulletin board that is up in the hallway of the youth building that says God Can, God Is. There are sticky notes for people to put prayer requests under the God Can side. Then people can put answered prayers under the God Is side. So if you have any prayer requests comment on here and we'll pray for them! I hope you have a great weekend!!