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Thursday, May 26, 2011

Our Garden

Hello World!

As I have mentioned before in 2009 I was in the ICU on a ventilator for almost month. Everyone deals with stress in different ways. My Dad deals with it by keeping busy. He has to have something to do. While I was very sick he started planting a garden. The garden was originally going to be mine but I got sick before I could do anything with it. So he started planting. Now the garden is a project we work on together. This year we have many things blooming! I'm not good with the names of plants I just go for what they look like. I also love color! Here are some our flowers that have bloomed...

Breathe Easy

Monday, May 23, 2011

Naner, Naner, Naner!

Hello World!

SOOO its been kind of a busy few days/weeks. I love being busy but MAN its exhausting! Haha. My family opened up our Lake House on May 15th... This past weekend I officially moved my stuff in and made myself comfortable in my summer crash pad. I LOVE the lake. Our house is on Lake Winnipesaukee. It is my favorite place in America.... I specify America because Aruba is probably my favorite place on the planet.
Alton Bay, NH - Sunset

Because I don't work or have school I get to stay at  the Lake House all the time. My parents and brother only come up on the weekends usually because they have to work during the week... Naner Naner Naner!!This summer I'll be taking Lucy up with me as well as Tucker. Tucker came up and stayed with me last summer. I love my pack of poochies but it was nice just me and Tucker during the week and then the rest of the pack came up on the weekends. It'll be fun!

We had our first small get together this weekend. We had lobsters, steamers, and steak! YUMMYY! It was so good. And I'm glad I have my appetite back because I ate about a pound of steamers then 1.25lb lobster and then a piece of steak, some beans, cottage cheese, and corn!! WOOOOO!! I finished it all off with a brownie and piece of peanut butter pie! God, I love having an appetite. We had this delicious lunch/dinner for my Grandma's birthday! She turned 83 on May 16. And she is going strong. The rate she is going she may out live me! Haha. I love her, she is awesome.

As for medical 'news,' haha, my 1 year check-up appointment with the Transplant team went well. I had to update some tests and just have a check-up. I have to have another check-up in 4 months. HOPEFULLY by then I'll have my new lungs and won't need that appointment. That would be stellar! I have a couple more days of IVs to finish up at home. Then I can be deaccessed!! YAYYYY!!! I'm hoping this hospital stay will be the only one this summer and I can make it until the fall before I need another. I would like to be able to enjoy the next few months and not be sick. So please, please, please, CF God let me stay in good condition!

Breathe Easy

Monday, May 16, 2011

Quick Update

Hello World!

Stuck in the hospital still. This visit we, being me and my doctor, decided to try some new medications. Well the first couple of days weren't good.  I had some weird side effects to 2 of the medications, Colistin and Doripenum. I was feeling just weird, and off balance. Its hard to explain. But I didn't enjoy the weirdness. So the dosage had to be changed. Thankfully they figured it out and all systems are go! I ad PFTs today, Pulmonary Function Test, they were good. I'm up in percentage and my weight is up as well! Overall heading in the right direction. On Friday I have a check-up with my transplant team.

Breathe Easy

Tuesday, May 10, 2011

Love Ya Ma!

Hello World!

What great weather we have had the last few days! Just wonderful. I even got a little  color on my shoulders, how exciting! Haha. Last week went well, no big news or stories to tell. Although I am back in the stinky hospital. BOOOO! Hopefully it'll be a quick visit. I went to a family BBQ Sunday for Mother's Day. It was nice. Some rain kept us inside most of it, but overall a good BBQ.

As mentioned Sunday was Mother's Day. I would just like to say HAPPY MOTHER'S DAY to my mom and all teh other moms out there. My mom is the rock in our family. Both my brother and muself have Cystic Fibrosis that she has to deal with. But on top of that in June 2009, my Dad was diagnosed with a stage 4 terminal Cancer. She has to deal with TONS of medical issues. She is never seems to crack and always stays positive. She refuses to let these set back get her down, and powers through it everyday. She is able to walk through life with such grace. I can't wait to be in a position to give back and be able to help her in a way that she has elped me. She is an AMAZING lady!! Woot, Woot! Love ya Mama!
Older Bro, Jay and Mom

Me and Mama
Little Bro, Ryan and Mom

Breathe Easy

Tuesday, May 3, 2011

Holy Hook-Up Batman!

Hello World!

I had my monthly CF clinic yesterday. Didn't go great. I figured as much though. For the past week or so I've needed more oxygen and I've been more tired than usual. The extra O2 helps combat the fatigue but its annoying. I hate have no energy to do things. I miss the days I could just spring up from bed in the morning and go go go. Now when I wake up, I have to lay there for 5-10mins, then sit up for 5-10mins, THEN I can get out of bed and move around my room. But I still need to take my time because, my room is located downstairs, so after getting up my first task is a flight of stairs. HOLY MOLY! Hhaha. Its good for me, just tiring. I tend to have a coughing freakout when I get to the top of the stairs. Its ridiculous, I use to be able to run up the stairs, now I can barely walk. So Lame! I coughed up some blood the past 2 days as well. Thats always a great sign, haha. Thankfully it seems to have stopped. My PFTs were down about 8% which isn't good at all, but I actually expected it. My weight was stable which is GREAT! I mean gaining weight would be phenomenal but the fact that I didn't lose any in a month is fantastic news!!

So the game plan is a hospital visit for a clean out. I'll be going in next Monday, the 9th. I have 5 'bugs' in me right now. 3 staph, with MRSA, and 2 pseudos. My pseudos are resistant to EVERYTHING! I love to harbor the worst of the worst, haha. My doc said he is going to try a new med with me, something like, Doripenum? Anyone had that before? He said it has to be dripped in over 4 HOURS 3X A DAY! Holy Hook-up Batman! I guess I'll be getting real cozy with my pole haha. Hopefully it works and kicks some CF-Buggy-Butt! I would like to be hospital free this summer so I can actually enjoy my summer!

I don't have any complaints outside the typical CF whining. I have a family BBQ this sunday to attend. It should be fun. Sunday is also Mother's Day! Not sure what I'm doing for my Mama yet but I'll think of something. May 2nd was my Dads birthday! Happy Birthday Pop! In Tucker news, I brought out his little pool last week. Tuck thought he was in heaven. He just LOVES water! Maxi is also a little swimmer. Ruby and Shotti want NOTHING to do with water and swimming. Lucy isn't sure yet. She has never experienced anything like a "pool" before. It'll be exciting to see if she is a swimmer at the Lake! And we get to move up to the Lake May 15th!! Wooooo!!! I can't wait. BOAT TIME!

**R.I.P. Callie**

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