One face in 30,000 with CF

One face in 30,000 with CF
One of the many faces of Cystic Fibrosis

Friday, February 25, 2011

Tales from the West

We have had a couple of big snow storms the last couple of days. Today when I went to work I drove past a man cross country skiing down the street.

Sorry I have been MIA I am swamped with my life. :) I will catch up on reading everyone's Blogs I promise.

Friday, February 18, 2011

Why?

My mom asked me yesterday why I read CF blogs. I get so heartbroken when someone loses their fight like Lauren did yesterday at the age of 19. I think my best answer is, I take the good with the bad. I have met some of the most inspirational amazing people through blogging. Not only those with CF but also those moms with kids with CF. My world has been turned upside down in the last two years. I am no longer as close to my friends as I used to be. It is not due to lack of trying it just is what it is. Zoey takes a lot of work and there is just no way you can "get it" without living it. CF'rs and CF moms are my new kindred spirits. They lift me up when I am down, they give me advice on what I should and should not worry about, and inspire me to fight the good fight as hard as I can, and teach Zoey to do the same. I also know from talking to others that Zoey may feel a little out of place with her regular friends and since she cannot hang out with others who have CF, she can have online friends with CF. And, we are looking forward to the day when she and Madeline can start talking, or Sophie in the UK.  Other's who know how she feels. Anymore I just feel out of place talking to other moms around me. Just now I had a mom telling me how worried she was that her son keeps getting ear infections and he may have to get tubes in his ears. I try to be sympathetic but really??? And I know that is her reality and her fear but I am just not there. Most of the time we are praying Zoey only has an ear infection. And tubes probably would be nothing compared to what she has been through. I guess I am saying I feel like an outsider now, but in the cyber CF world I feel like I am part of a bigger "family" of moms who just "get it" and get me. OK end of my rant today. Lauren you fought a good fight and now you can breathe easily. I hope you are running a marathon right now. :)

And...Zoey got her vest yesterday, it is pink. She was so excited to take everything out of the box. We are getting trained on it on Saturday, I will send pictures when she finally uses it. Sandy....we went through respirtech that is who my insurance company had a contract with. I hope your move goes smoothly. . :)


Zoey is very pale and has dark circles under her eyes, and she is sleeping a lot more than normal. Last night she was coughing so hard in bed I gave her two extra puffs of her Xopanex, that seemed to help. It is def time to go back on TOBI. As luck would have it, we start tomorrow with the vest too. She is going to be feeling like a million bucks in a few days.



Monday, February 14, 2011

Pink Cowgirl

We had a fun birthday party for Randy on Sunday. Zoey was i rare form. She loves her family and loves to show off even more. She would pose for pictures and dance for anyone. She was also bouncing off the walls, her Oma (my mom) knew she loved M&M's and brought her a big bag of them. I think she ate half of the bag yesterday.

Randy had a good time too, I got him a blue ray DVD player he had been asking for, for about 2 years. I also got him the move "Life as We Know It" more because I wanted to see it but it turned out to be a good purchase. We were exhausted last night and just sat as a family and watched the movie. It is about two single people who were left the custody of their friends baby. We were rolling we were laughing so hard because this baby happens to be close to the same age as Zoey and they had what goes on with that age to a T. I did cry at the beginning when they went and got the baby after she had just lost her parents. That is just something I cannot even think about. I recommend the movie though it was hysterical, my husband even loved it. 

Here is a picture of Zoey showing off in her tutu and pink cowboy hat that Oma also gave to her. (spoiled by grandma) I would show you more from the birthday party like the cake Zoey decorated but I have not downloaded those pictures yet.

Friday, February 11, 2011

Eve's Story

Making Of Breathe

Breathe by Matt Scales

More News

We will finally be getting Zoey's vest sometime next week. Probably Wed. They are working with us on the money issues and my insurance approved it say yay us. I cannot wait, I know adult CF'rs say they get a better treatment with CPT but with a two year old I am positive the vest will be better until she learns to sit still...ha ha ha. 

Randy is having his 35th birthday on Monday. Yes on Valentines day, I get forgotten about but that's ok it is his day. His parents are sick so they won't come up and expose Zoey but my family will be coming on Sunday for cake and ice cream. I want to do something special for him, he has been so stressed about finding a job and taking care of Zoey at the same time. I am just not sure what I should do??? I am going to make him a cake and let Zoey decorate it. It will be a mess but adorable all at the same time.

I am also in the process of thinking about making an awareness video to raise money for Zoey's Great Strides Team. When I say think about it I mean I charged the camera battery and thought about what I want it to say. Hmmm I should probably do a little more work than that. Maybe this weekend I can start on this new project now that my stress level has gone down. Or maybe this weekend just spend time with my family. There are never enough hours in a day.


In case I forget in a few days......Happy Second Birthday Madeline, I hope your day is fabulous!!!!

 

Thursday, February 10, 2011

He did it!!!

My husband got the job we are so excited. He will be making a little more than he did with the last job. The problem is it is 2PM to 10PM so he and I will never see each other. The good news is Zoey will only spend a couple of hours in daycare so that is awesome.

Wednesday, February 9, 2011

Terrible Two Tales

I made sloppy Joe's for Randy and Zoey. As we were eating I looked down at my shirt and I found half of a sloppy Joe hanging from my shirt. Zoey decided it would be more fun to throw it instead of eat it.


Randy has been talking to someone about a job, we are hoping he will get it, they pay more. He would have to work on weekends but that is actually ok with us, less time Zoey is in daycare.

Tuesday, February 1, 2011

Terrible Two Tales

I came home from work on Monday with new artwork on our back door, walls, and blinds. My sweet perfect innocent child decided to color on the walls on my husband's watch. "Randy what happened here?" Randy: "She colored on the walls" "Randy how did she get a crayon?" Randy: "I gave it to her she wanted to color on paper" "Randy did you put her at the table with the coloring book and let her color?" Randy "No, she was coloring on the floor, she must have gone to the wall when I was not looking." "Randy what did we learn from this?" I told him you don't have to let her do everything she wants to do. Give her limits. She can color on a coloring book at the table and you have to watch her. LOL, love my family but those two will be scrubbing walls today when I get home. I just have to laugh. I don't know if our house will survive Zoey staying home with Daddy, she has him wrapped around her finger. I love it but then again.....

REALLY?.....REALLY!!!!!!

WOW, I must have some really bad Karma from a previous life or....something. At this point I am past the anxiety phase and now I just have to laugh, if I don't I am going to LOSE MY MIND!!!!! I woke up this morning to a flooded laundry room. Yep! The laundry room. With closer inspection we figured out it is the hot water heater. OUTSTANDING! (ENTER SARCASM HERE) We need a hot water heater in our home, and we do not need floods, that is all Zoey needs is inhaling MOLD or whatever else comes out of flooding. I am lucky to have the best mom in the world and she is going to help us out until Randy finds a job....but really what now? I should really not ask that because it is just Karma waiting to come back and bite me in the ass.ARGGGG! Ok I am done now, let's move onto a much better subject, INSURANCE. YEAH RIGHT!

Zoey has finally gotten approved for her vest, it is 11,500.00. My insurance has a 5000.00 durbale medical equipment per year. So let me see, insurance pays 5000.00 and we pay 6500.00. Um yeah except my husband has no job and we were barely covering our medical costs when he was employed...Two Chronic Illnesses in the family. So I called the insurance and asked if they would wave the cap due to it being a life sustaining device...of course the answer is no, that would be the ethical thing to do. I then asked about Obama care, caps were not supposed to exist. Well that goes into effect next year and to get around that they are changing their policy from covering 80% with a 5000.00 cap to covering all of it with no cap but it will be a 50/50 policy. So Obama did this wonderful thing to try to help average people get the medical care needed and the insurance is finding ways around it. If we waited for Obama care to go into effect we would be paying the same out of pocket anyway. I think ethics should be taught for every future insurance agent in America! Lucky for us the vest company is trying to help us out and we are applying for a hardship waiver. I don't want to not pay them, I just need time to be able to pay them. We need to be a two income house first, plus my mom is fund-raising like crazy to help us out.