Saturday, March 23, 2013

When Can I Feel Better?

Well....Where do I start. Yesterday was pretty crazy. Mom went to pick up my medicine at the pharmacy. She should have been able to get my new sleep drug and my allergy pill. Well the insurance won't let us fill my allergy pill. I am all out!! We are out because we upped my dose two two pills daily.  They needed some authorization for me to get meds. This was already done but someone says they never got the authorization! So around 4pm on a Friday afternoon. We were trying to sort things out. They sent one fax in and the insurance denied it! So again they sat on the phone with insurance for an hour and at 7:30 they got it done but it didn't matter because no one was there for it to be done!!! The doctors couldn't do anything for us and we we're told to come in first thing in the morning. We did just that. We actually have quite a decent plan. I am put on antibiotics and steroids. Even though we didn't want to do that because of my CT scan we have no choice. I was put on high dose of steroids so I need to take three pills a day of the steroids and antibiotics. That means I took 5 pills this morning! It is supposed to be hard on your stomach but I have never had a problem with it before. Today I took the pills and an hour later I was in a lot of pain. So I did a feed and took nausea meds. That helped a lot! Anyway the rest of the plan is to continue with my CT Scan on Monday. Pray that my allergy pill will be approved Monday. Then Thursday we get the results of my immune level testing. If it is still really low and has gotten worse we will make a referral for me to see an infectious disease doctor. I got diagnosed with Chronic Fatigue Immune Dysfunction Syndrome. It is the closest diagnosis to my situation at the moment. This is how I will get into the infectious disease doctor when needed. So we really don't think that that syndrome is our main problem but we have to have it so when I do get the referral I can get in. It was an early morning today getting up for the doctors because I started my new sleep pill last night. It didn't help me go to sleep but once I fell asleep it was amazing!! I slept through the night without waking up. I fell back asleep this afternoon while the boys went to a friend's house to play. I found out a really cool trick yesterday!! You can plug headphones into your g-tube button. It is actually really funny. It doesn't make noise though which is quite depressing. I'm helping Mom make a video about Tyler and his medical journey. So stayed tuned for that one. With that video I will also post all the links to the other videos that have been made about me, Tyler, and feeding tube awareness.

Sunday, March 10, 2013

Back To Reality

It's was a great weekend and I was sad to see it to come to an end and we have to go back to reality but everyone does eventually. Friday we drove 6 hours to Kentucky for the retreat weekend at The Center for Courageous Kids. Friday night was introduction, games, and some dinner. The games were really fun and we found some of the people we knew and hung out with them. Saturday we woke up bright and early and did the early morning activity before breakfast  After breakfast I went swimming while everyone else wanted to go fishing. Kiley caught a huge fish and while I played volleyball with a new friend. Lunch came around and the guy in charge made some noodles for me that I had brought from home so I could eat! During lunch I also met a boy name Tyler who is my age and has a feeding tube. He was shy but it was still cool to actually meet some one else like me. Soon we did some arts and crafts for the rest  of the afternoon. At dinner they had a snow cone machine with safe flavoring!!!! YAY! It tasted amazing. We had a dance party while the parents went to the bowling alley and talked. I danced with Kendyn and Amelia. Tyler was way too tired and just sat down and watched everyone. Kendyn is an amazing dancer!!! He was so funny to watch. Sunday was the last day and we got to sleep in. I think everyone was a little thrown off by the time change and we got to brunch a little late but oh well. We also went to the camp store to buy t-shirts. I got a shirt that said CCK STRONG. It looks really cool! After that we went horseback riding. That was cool. There was a boy in a wheelchair and he was even able to ride the horse. I thought that was amazing. Only at this camp would this child would ever be able to ride a horse! <3 We signed the banner and picked up are crafts and it was closing. We took pictures and it was sad to leave. Another six hour car ride and we are home. Tyler is extremely tired and isn't feeling the greatest. I think my infection has spread to my lungs as I am now having trouble breathing and hacking up a storm. We still aren't really sure about bread. Mom told me to pull it for a while until I feel better and try again. Now it is time to sleep for the next few days! I am exhausted! I hope everyone else is doing good! Keep fighting! <3

Wednesday, March 6, 2013

I Don't Look Sick, but I Do Look Strong.

I found two amazing quotes online today I will post them below. I think they are really powerful for anyone with a chronic illness.
I don't look sick, but I do look strong.

In my world,
I am not a statistic,
I am not a number,
I am not a diagnosis,
I am a child with
different abilities taking
on a world that
refuses to understand.

Hope everyone had a good day and a good night. Off to bed! :)

Sunday, March 3, 2013

Twas The Day Before Surgery...

Twas The Day Before Surgery! How exciting? We have to be at the hospital at 6am! :( So we are leaving the house at 5:15!! So I will be waking up early for an 8am surgery. I went to church this morning and had a great time. Confirmation went well too. Then we went to Rachel's apartment for food!! I am finally able to eat an average meal. average as plain macaroni noodles can get. NO PAIN AGAIN!!! :D Tomorrow will be the last day with this food trail and I'm really gonna consider it a pass already!!! Anyway we ate lunch there and left for ice skating. I am a good ice skater if I do say so myself. I skated around with Aksel for the whole time until I got trucked by some old guy! OUCH!! That hurt and I am so glad I decided to disconnect from my tube feeds right before or that tube would have been ripped right out of me! That would have been bad! Then I took it easy for the rest of the time. Went home ate some more noodles. Skype with the most awesome person ever! Christine!! haha My microphone isn't working so we had an interesting time trying to figure it all out. Pictures on Instagram for those who follow Christine and I there. Now to finish up feeds for the night and then I am NPO after midnight. I may end up staying up all night since I never get to bed till 3am anyway? Last day with the PEG tube and I am glad to see it go. I hate how the PEG sticks out and all that it is annoying. So glad to get the AMT mini button. A pretty awesome day before surgery if you ask me. I hope it doesn't hurt too bad when I wake up. It shouldn't but you never know. I will be posting about my crazy complex life on this thing you call a blog. :) Hope you enjoy!