A big week, good and bad news

This is such a big week! I move into the dorms on Saturday!!!

Good news- we got my port flushed! It's been 3 weeks since we started the process of finding someone to access my port. We wanted a nurse to do it since my mom wasn't able to access it because the port kept moving around.

Bad news- I had to go to the hospital last night, so that's how I got my port flushed. But at least I got it flushed and it worked! We're pretty sure that I have a cyst because that's what it feels like. We had lowered the medicine to control the cysts a little because it was giving me headaches. It looks like I'm going to have to go back up on the dose though. I have an appointment with the gynecologist on Thursday.

Since we knew what was wrong, at the hospital they just did blood and urine tests and got me more comfortable. Everything looked good so I was able to go home!

There is so much to do this week! I have physical therapy twice this week, personal training once this week, 2 doctors appointments, and packing and getting everything ready for college.

My mom is making curtains for my dorm room and I can't wait to see how everything looks! I'm sure I'll post lots of pictures.

For now I'm trying to rest and do little things to get ready for college. I didn't plan on getting a cyst the week that I move into the dorms, so that's really messing up my plans but it'll all work out.

Disney World

Our trip was great! It rained almost everyday which sometimes cooled it down. I even had to buy a sweatshirt and wear it several nights! We stayed at the Animal Kingdom Lodge, which is supposed to be like African safari hotel. There are savannas with animals around the hotel and a couple of amazing restaurants. When you get to the hotel you can smell Boma which is the best hotel with African foods. A lot of the people who work at the hotel are actually from Africa which is really neat! It is our favorite hotel. 

Part of our hotel

View from our room

Hotel pool

Tigger and I

Panoramic view from our room

Epcot

Epcot

They have amazing desserts there

at the Animal Kingdom park there is a safari where you're in a real safari truck

Magic Kingdom

Epcot

Hotel lobby window

Hotel lobby

I'm so glad that we got to go! I got to do most things that I wanted to! I was in a wheelchair at the parks so that I could last longer, so that was good. There were only a couple nights that I stayed at the hotel while my family stayed out late at the parks. It was nice though, I just sat on the balcony and read. I did a lot though! 

The last several nights that we were there, there was someone very important staying down the hall from us. Our whole hall was filled with security. There were extra cameras set up with cords that ran to the room next to ours where some security people were staying. Security people were in almost every single room around us. I don't think there were any normal people around us. We never figured out who was staying there! They left the day that we did too. It was crazy though! 

We got back Thursday morning around 2 and it was back to reality. I had physical therapy yesterday and today. It was great to get away on vacation for a while!

Interesting day and vacation!

I probably won't post for a week or so since we are leaving for vacation! We are so excited!!

We are leaving in a couple of hours and it has already been an interesting day!
Through out the past 2 weeks, we have been trying to find somewhere that can access my port for me. My primary care doctor has been helping us and we've just not been able to find anywhere. They finally called this morning and told me to go to the hospital for them to access it!

I went by myself since I thought I would be in and out of there really fast. I had to check in at Admitting and think hmm does this mean I'm being admitted to outpatient? The answer is yes. They gave me bracelet and sent me to the outpatient area. When I got called back, they took me to a room in what looks like the pre-op area. People there are getting ready for endoscopy's, colonoscopies, and other procedures like that. I thought it was a little strange that I was there. The nurse that took my vitals said that people are there for outpatient procedures, infusions, and pain management.

I was put in my room and got a warm blanket and coke and was having a nice little time. I got to listen to people on Valium getting ready for their procedures, and was just making the most of being there. If you have to be there, you might as well get warm blankets, coke with crushed ice, and the opportunity to listen to people on pre surgery drugs!

Then, the lady at the check-in desk comes running back and asked if they accessed my port yet. I said no, and she began to explain that insurance won't let me be there to have my port accessed. Uh what? I'm already checked in and everything. Apparently, the people who scheduled it for me, didn't know that insurance wouldn't cover it. It would have cost at least $1500 out of pocket, plus a fine for being there. After lots of phone calls between my mom and the people who scheduled it, I just had to leave. The nurse cancelled the order and I left. I was there for a good hour before insurance decided I couldn't be there.

It was quite a morning. Now we are getting ready to leave for vacation in a couple hours! Who gets to go to the hospital and go on vacation on the same day?! That would be me! When we get back from our trip, I will have to go to a hospital that my insurance will let me go to, and go through that whole process again. I hope they'll give me warm blankets and coke with crushed ice!

Not a whole lot to update

Last Wednesday and Thursday I went to the gym to work with someone who is helping me start gaining my strength back. It is going really well! We are just starting with some stretches and other things (I don't really know what they're called..). We're starting out slow so it's only 30 minutes each time I go. I'm really enjoying it! We talk the whole time and it makes it go by super fast. I'm looking forward to Wednesday when I go again!!

My family is actually going on vacation this week! We leave on Thursday and are going to Disney World! It's one of our favorite places. We haven't been since I got really sick. There have been a couple of times that we've tried to go, but it just hasn't worked out. But we are going on Thursday and will be gone until the next Wednesday. I am so excited!!!!

We are still waiting for the nurse to call about coming to access my port so hopefully she'll call within the next couple of days.

I hope you're having a good day!

Life lately

Most of my friends are on the high school mission trip in Memphis this week, so I've just been hanging out. I went to church on Sunday but then came home because I wasn't feeling the best. I haven't been sleeping too well, so that's probably why.

I went to the doctor today to talk about several things. On Sunday night, my back and leg started hurting a lot and went numb. We suspected that it is my sciatic nerve and doctor said she agrees. I'm on a strong anti-inflammatory and am stretching to try and help it. I'm still having shooting pains down my leg and it goes numb a lot.

She said that I can go up on the Amitriptyline(sleep/pain medicine) to try and get me sleeping better. We have been taking things slow with medicine since the ICU episode.

My mom has accessed my port since I got it almost 2 years ago. She was taught by the home care nurses and has done it ever since! A couple weeks ago she tried to access my port because it was time to flush it with saline and heparin so that it doesn't get a blood clot, and she couldn't get it in. The port kept moving around and after a couple of unsuccessful tries, we gave up. It hurt a lot and it doesn't usually do that. So I asked the doctor today if someone there could try it, but no one was comfortable doing it. They are going to send out home health nurses as soon as possible to come access it. 

Tomorrow I am going to start training with a personal trainer. She goes to church with us, and will help me start building up my strength. I'm not really sure about what we will be doing, but it will be good to start that!

I've been looking for dorm stuff and my roommate and I have gotten our bedding and a few other things! It's so exciting!!!!

"So do not fear, for I am with you; 
   do not be dismayed, for I am your God. 
I will strengthen you and help you; 
   I will uphold you with my righteous right hand." Isaiah 41:10

This is a song by Peter Furler that I love!

" You hold the weight of the world 
Still I don't slip through Your hands 
Your love is bigger 
Than just a notion built by man 
I fall again and again, 
But you whisper, “You're still mine.” 
You feel the pain of the world, 
But you never push mine aside. 

(Chorus)
And You reach for me 
With a love that quiets all my fears 
And You reach for me 
Like a Father wipes away the tears 
So many people in this world, 
But I hear You calling out my name. 
You reach for me. 
Now I'm never gonna be the same. 


You know all of my fears 
There's nothing Your eyes can't see. 
When I tried to give up, 
Lord, You never gave up on me. 
I give You all of my hopes and dreams, 
I lay them down. 
Of all the place I've looked, 
You're the one truth I have found. 

Chorus

You hold the weight of the world, 
Still I don't slip through Your hands. 
You put the stars in the sky. 
You know every grain of sand. 

Chorus

You reach for me. 
For me."

Baptisms

The past several weeks have been so encouraging! At the Jr High church camp, there were 7 or 8 (I think, from what my brother says) middle schoolers baptized! The next Sunday at church there were 6 that were baptized! Two of the girls we have known forever. Our families have been friends for a long time. One is going into 8th grade and the other is in high school. I'm so sad that I wasn't able to be there because I was sick.

Then that Wednesday night after church, 2 more of our friends were baptized! They are our neighbors too which is great! They are siblings and one will be in 7th grade, and the other is in high school. It was so special!

At the high school camp, there were around 10 that were baptized I think!

Then on July 10th, my brother was baptized along with 3 others that day!

In the past month, there have been 34 teenagers who have given their lives to Christ in baptism! Six of them were not members of our church, meaning their parents don't go to church here. They are already sharing what God has done with their families who do not know Christ.

There have also been many adults baptized recently too!

I love seeing people decide to give their lives to Christ in baptism. I was baptized on August 21, 2005. My best friend was also baptized then. Her dad baptized her, and my dad baptized me. It was the day before school started!

Baptism is such a special, life-changing thing. It's when we confess Christ in front of people, and then put on Christ in baptism. It's an outward expression of an inward change.

'Then he (Jesus) said to them all: “If anyone would come after me, he must deny himself and take up his cross daily and follow me.' Luke 9:23


'Peter replied, “Repent and be baptized, every one of you, in the name of Jesus Christ for the forgiveness of your sins. And you will receive the gift of the Holy Spirit.' Acts 2:38


Through baptism, we are crucified with Christ (going down under the water), then are resurrected (coming out of the water). We die to our old selves, and start a new life with Christ. We are born again into a new life!

"Or don’t you know that all of us who were baptized into Christ Jesus were baptized into his death? ⁴ We were therefore buried with him through baptism into death in order that, just as Christ was raised from the dead through the glory of the Father, we too may live a new life.

 ⁵ If we have been united with him like this in his death, we will certainly also be united with him in his resurrection." Romans 6:3-5

 "Jesus answered, “I tell you the truth, no one can enter the kingdom of God unless he is born of water and the Spirit. ⁶ Flesh gives birth to flesh, but the Spirit^[b] gives birth to spirit" John 3:5-6

'You are all sons of God through faith in Christ Jesus, ²⁷ for all of you who were baptized into Christ have clothed yourselves with Christ.' Galatians 3:26-27

 


The angels in Heaven rejoice even if only 1 person is baptized. I can't imagine what rejoicing they have been doing with all of these baptisms! I don't think it's possible to watch a baptism without smiling. It can turn anything into a great day!


Praise God that He forgives us of our sins and makes us white as snow in baptism. Our names are written in the book of life and we have the hope of spending eternity in Heaven where there will be no more pain, death, suffering, or tears. 


"He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away.” Revelation 21:4

Here are pictures of Landon's baptism!!

Landon's confession

My grandpa leading a prayer before the baptism

Aww brother-sister hug

New brother in Christ!

My grandpa with Landon

Alyx, Andrew, Landon, and I

Look at my face in this one! It's crazy

Grandparents

Medicine changes and massage therapy

I went to the doctor last Thursday to see if my headaches are from a medicine I'm on to control the cysts. The doctor said that is very possible, but we aren't sure. I went from 10 micrograms to 35 while I was in Nevada and couldn't get the cysts under control. She said for most people 20 is high and I was on 35. So we took the medicine down to 30 because we aren't comfortable going lower because of the cysts coming back. It will take 3-4 weeks to know if it was the medicine causing the headaches.

As we were talking, we were reminded about how much my body went through leading up to the stay in ICU. For at least 5 days, my body was all tensed and I had dystonia.

The Dystonia Medical Research Foundation says "Dystonia is a movement disorder that causes the muscles to contract and spasm involuntarily. The neurological mechanism that makes muscles relax when they are not in use does not function properly. Opposing muscles often contract simultaneously as if they are 'competing' for control of a body part. The involuntary muscle contractions force the body into repetitive and often twisting movements as well as awkward, irregular postures."


I went to the ER for 3 days in a row because it kept coming back. Then I started having the seizures and they couldn't get them stopped for 6 hours in the ER and ICU. They got them mostly under control in the ICU but there were still little breakthrough ones. So for almost a week, my body was tensed up really badly. My jaw was clenched too. 


Since then, we have done nothing to help relax any of the muscles. This could also be contributing to the headaches that won't go away. All my muscles are so tight and knotted that I'm surprised that we haven't thought of this earlier! When muscles go through that much trauma and pain, they aren't just going to fix themselves. 


Tuesday I went for a massage and they worked on my neck, jaw, back, and head. Oh my. It hurt so bad! Whoever said massages are relaxing are wrong! They said that it's going to take 4-5 months to fix everything. The scoliosis doesn't help the problem. We are having to completely retrain my muscles so they know that it's not okay to tense up. That's why it will take 4-5 months is because we have to reprogram them. When we told them what kind of reaction I had that landed me in the ER and ICU, the massage therapist knew exactly what we need to do. He explained about retraining the muscles. 


So, it could be a combination of medicine and muscle problems causing the headaches. It's going to take a while to know. Hopefully they will start to get better as we release the tension and lower the dose of medicine.