My Moments to Breathe

Saturday, December 29, 2012

I'm dreaming of a white Chritmas

So this is Christmas. Like I had said on Facebook, I am missing many of my childhood traditions at Christmas but watching Laila get hers, and therefore making them mine as well is turning out to be a blast. Now I know why my parents made certain things stayed a tradition.

Church was great and Laila said her part and sang her song with all the love in her heart (but sitting still in the pew was a different story!) She knows exactly what Christmas is about and still believes in Santa...see you can have both if you make sure the focus remains on the right one. And thanks to her father she knows her stuff. But yes, Santa did stop at the Husby household with just what the little girl wanted a "polk-a-dot pony" and "swan Barbie movie." I think he could have just stopped there!

One of my most favorite traditions in Christmas Day. Church then run home change and off to Ge and PaPops house we go to celebrate with family and all our friends who feel just like family. I loved every single person I spent Christmas with (but many I missed too!) and I just felt joy. This Christmas was going to be one to remember and it sure was. Great food, great mood, giving, being merry, booze, family, friends and of course my curly haired baby and all 20 ponies she got (and yes she got 20!) 

Then the next day got to celebrate with my mom and dad and sis with a small relaxing gift opening from Santa and the gang. Followed a few days later with Christmas at the Husby's. It is always so awesome when you get to spend most of the day with your family and not have another care in the world. Thanks to both families for making this Christmas so wonderful!

I was so spoiled this year between Christmas and my birthday..just watch for all the things getting crossed off my list in less than a week CRAZY! But what was more fun was watching everyone open their gifts and enjoying the essence of the season. I could live in this week (like Groundhogs Day) every single week. But not sure my health could really keep up.

I am working hard and trying to still stay healthy which is a large chore when you keep busy. Today I didn't get out of my pajamas or even wash my face...yeap thats lazy and I would still do it over. My lungs are slowly starting to work harder and the cough is getting more frequent. But for now (besides doing my meds..) I am forgetting that I am a sickie and going on enjoying everything. Before reality hits the next few months with everything going on.

I hope that you all had a Merry Christmas and that you got to have as many memories as I did. Much love...until next blog when I start crossing this off that list!!

Saturday, December 22, 2012

A few days before Chirtmas

That time is so here and I am such an excited girl. This is Laila and I making a gingerbread house at her school. I think half of it is already eaten, she loves it. It was awesome to be able to go watch her program and make this while feeling pretty good.

My list of things to do before we leave for home is getting smaller and smaller. Today was an entire day of wrapping presents with my awesome helper. Just to let a few of you know she wrapped and decorated a few by herself so excuse the short paper or the 10 bows or the tape that even the Hulk wouldn't be able to get through. But she had fun and so did deal with it! She even told me I was a great little helper. Thanks Laila, I do what I can.

As much as I don't want her to grow up I have to say it has been fun this year with her understanding more and wanting to help and all that. (And I have more patience because I have been feeling pretty ok.) And it melts my heart because she is way more into giving then receiving. She had to make sure everything was perfect and it brought a few tears up...phew I am doing something right with her. Gosh, I just LOVE her. She won't even tell Jeremy and I what each other wrapped, she is so good at keeping her secrets. Ha not much like her Mommy on that one. 

I hope that all of my family and friends have a wonderful Christmas this year. Full of being merry and good cheer and most importantly remembering what the season is about, CHRIST! I am still trying to keep the band-aid on my health so that I can do the same. I just have to remember to take my time and breathe and not over do it this upcoming week. I am ready for the questions about lung transplant and for all my family who are interested I am bring home quite a bit of paper work on how the evaluation in going to go down this April. For those who won't see me I do plan on blogging about this when the time gets closer and its not a season I am trying to forget I am sick.


Monday, December 17, 2012

Straight like an arrow

Yes, people that is one GOOD ha straightener you see!! I think I could sell one to every girl I know. You want a straightener,PLEASE buy this one because it works that well. And it works on every hair type. So far, it works WONDERS on mine, it works on my sisters and also my moms. Its one of the best.

The Instyler. It is a for sure and I will never wonder which one to buy again because this is the best and if it makes this fro straightener and smoother and SLEEKER and tame you know its a good one.

I am not allowed to tell everyone that this one got crossed off with help by a certain Aunt. So I won't. But I will tell her here that I love her so much and that she makes me smile more often than she knows. She is always there when I need to hear a nice few words encouragement. So thanks to that wonderful Aunt!!

So crossing out another thin on the list #46 Get a GOOD hair straightener. CHECK

Sunday, December 16, 2012

Well, Kris if you insist...

10 year old Cassie got her dream come true lastnight and 29 year old Cassie's heart beat just as fast as if she was 10 again. Kris Draper left me a voicemail. WHAT!? Oh my goodness #33 from the Grind Line (insert nervous girlie giggles...)

He happened to be at the same Michigan hockey game that my Dad was at and all of you who know my father know that he would do pretty much anything he can do to put a smile on my face and keep me in a fighting spirit. And well, he did it again. He Mr. Draper and asked him for a favor, "Would you call my daughter..." and went on to tell him my story.

When I was a young girl and there was nothing better than the Red Wings and especially Kris Draper of the Red Wings my Dad pulled out some stops and got me an awesome treat before a huge surgery. I got a signed puck, signed magazine and a few other items while sitting in awesome seats by the Wings tunnel at a game. THANKS KRIS I shouted as he skated unto the ice, me decked in my Kris Draper jersey that was more like a dress. (If only I knew how to bet and accessorize back then!) It was a night that I got to forget I was sick and be a girl who couldn't stop smiling. 

Now I wore his jersey for every game. And well I became a good luck charm in a certain member of my families eyes. The wings were hot that year (and ummm brought the Stanley Cup back to Hockeytown!) So I even woke up one morning with the jersey on my bed. Creepy...a bit, but it worked!

So almost 20 years later, on my phone is a message from that same guy. Maybe because I am still sensitive about the topic that shall not be mentioned...or maybe because I didn't expect it...or maybe because I know that my Dad did it out of all the love he has (and really probably a combination of all these and more) I got teary eyed and those tears fell hard. Kris Draper told me to keep fighting and that he was thinking of me and that well he was just such an awesome guy that he would walk away from my Dad so the message was just that much more personal. Now if that wasn't cool enough he asked my Dad for my phone number and permission to call me and talk to me again. Whether or not he will or not will be determined. But hey, he has my number and that in itself is cool. KRIS DRAPER HAS MY NUMBER AND KNOWS MY NAME AND STORY!!!!

So here is a big thanks to my Dad and Kris for making almost 30 year old Cassie feel like she was 10 all over again and make me have a little bit of pep in my step today. You guys did more help than you probably really know. GO WINGS!

Friday, December 14, 2012

Still a fighter

HAHA Laila was so sad...

So after today and sitting here trying to think of how to start this blog I have decided that its my last day to think about this until after Christmas. Mostly for myself but also for Laila, Jeremy, the rest of my family and my friends too. I realize that is affects my mood and there fore affects how I act or treat people and so since Christmas is my favorite time of year. The one time I still feel like a kid because I get that feeling in my tummy still when I talk about know the one where a bit of you thinks he could real. And then I think that I didn't come on this earth in human form knowing I was going to die a horrible death in order to save other people. So this is it until after Christmas and the New Year. 

The new year...2013 a big year here in the Husby house (and the Zell house in MI.) Today after much mulling and tears and fighting with myself I called the transplant team and scheduled my evaluation to see if I qualify for a new set of lungs. Scared? Understatement. Emotional? Terribly. Excited? Haha not sure yet.

The crazy thing is I had just got Laila out of the bathtub and was stirring cheese into Jeremy's lunch when I burst into tears. What would happen if I wasn't here. What would they do? Now I know that Jeremy is capable of taking care of him and Laila and I have faith in that 100% but I also think about how they need a mom and wife too. Things like this happened all day. I looked at the half lit Christmas tree and cried because what if its the last one or what if next year I am sitting in a hospital praying new lungs come. My thoughts were so messed up all day that my heart just other way to explain it.

I feel so silly about all this and I am sure some of you think I am. WHY WOULD'NT YOU GET ON THE LIST ASAP? THIS IS A GOOD THING YOU ARE GETTING THE EVAL! But as much as its easy to do it for everyone else its also very easy to not do it. Yeap, I know that sentence didn't make sense but thats how it all is in my head too. SCRAMBLED.

So April 2-5th I will be in Madison going through the biggest test of my life and I want an A. What a way to spend Easter right...getting prepared for the madness. But I think its a good birthday gift for my Dad (HAPPY BIRTHDAY DAD!!) I am starting pulm rehab soon (also starting setting that up today and PHEW its in Hartford!!) and looking forwarded to getting my package of all the information on how and when and why I have to go through the 4 days of tests and talking. The 2 words "Lung Transplant" has never bothered me as much as they started to today. I didn't even like looking at it as I was typing it. But Yes everyone I will be getting one and I will not stop fighting and yes I will do what it takes.

So there I did it and I posted it and now I am gonna drop it and have a wonderful not sick kind of 2 weeks. 

Wednesday, December 12, 2012

Building my way back up

Doesn't that oxygen look good on me HAHA!! I have been home for about 1.5 weeks and it feels pretty darn good. I was lucky enough to have family here the first week I was home to help do, well, EVERYTHING. They cooked, cleaned, cleaned, did things around the house, and cleaned. Thanks to my in-laws, Aunt Diane, and my beautiful mother. I am very nervous now that everyone is gone that I will fall downhill fast. Learning new things about how I am sicker than I think...and trying to be good a listen to my body.

So like I had said before I was getting a handicap sticker so that on cold days (and hot ones, or days I don't feel well) I can walk as little as possible before doing things I need to Christmas shop or grocery shop. They cold really does get me, and come to find out it is normal for CF patients to have one. I am really nervous about using it and getting the odd looks from people who think I am just using the sticker to get a good spot. I mean I don't have a cast or wheelchair or a limp, and to a person in public I look pretty healthy. I told my parents I would just tell people that my lung capacity is 27% and I would trade them spots in the parking lot vs. health anyday! Well, I used it today for the very first time and got looks from 2 people in a car...and I did nothing but feel sad. I wimped out and said nothing but just walked away with my daughter. Something I guess I just need to deal with.

I don't admit this very often to people especially this many people, but I feel this time I got sick and hospital stay really took a huge toll on me. I lost a part of my health that I won't be able to get back. I am getting sicker. But I hope that I can stay this way for awhile and work up to being able to pass my big test in a few months. Somethings I still need to set up and trying to pysch myself up for it. I just keep trying to tell myself that this isn't defeat, CF hasn't beat you. You can still beat CF. Breathe Cassie.

Have to switch gears before I get to my emotional wreck stage again....

Laila had her ballet show this past Sunday and did such a fab job. She kept telling us she was so excited and she danced her little heart out. I know I may be biased but she was the cutest and best ballerina out there. She knew it all and hit her cues and marks! Yay Lai!! Yeah yeah I know I am just being a mother...BUT ITS TRUE!!

We are getting ready for Christmas (slowly) here at the Husby household. We tried settng up our Christmas tree tonight but half the lights are burnt out so it looks pretty funny right now. Another prject for another day. We aren't sending all the Christmas cards this year so look for a copy on the blog and my makes me laugh. The presents are being shopped for (again slowly so I don't get burnt out) and Laila is learning her part for the Christmas program. Very excited, because this is one of my favorite times of year. 

I know I have been awful about my 100 lists so watch the next few days for a few blogs about it! Very excited!

Saturday, December 1, 2012

I am gonna eat everything I see!

I became friends with my nurse from lastnight. She stayed in my room for about 1.5 hours and we just talked like normal people. And then she switched so she could be my nurse again tonight. It is pretty nice to have somebody here to just be honest with and tell her I have no patience for the new nurse today. I mean I am pretty good with my nurses but when they need help from somebody...go get help instead of messing with my crap. Just get it done so I can get it done.

We have a new plan of action for the last congestion that is not going away and keeping me in this little D6/5 cell. They are thinking my ABPA is back and going to test it on Monday with a simple scratch test. And if it is guess what that means....PREDNISONE! I am sure a few people just cringed like I did. Fat, moody Cassie making a visit for Christmas. (Hold on to your Sharpies Ang!!) Umm lets just make sure I don't eat three burritos and then a box of Lucky Charms on top of it this time. But it would mean that they figured out what this hack is and it can slowly get cured enough that I can feel better. 

Here is a link about ABPA from the CFF:

I have been day dreaming about my first home cooked meal after this stay. I am dieing to have a hot meal made out of my kitchen with my food and I can eat as much as I want and have about 3 tall glasses of milk to accompany it. Huh I wonder if my appetite is starting to come back. Yay what a good sign. 

I am going to take this moment here to thank a few people for all their support. First: thanks to all of you who have sent countless texts, messages and facebook posts with all your well wishes and prayers. I am serious when I say those help make me want to fight even harder. I also want to thank Trish and Dave for sending me those wonderful CPops in the mail. That chocolate is so rich that if most "normal" people even looked at them they would gain 2 lbs. Plus umm HELLO they have silver and gold glitter on them so I feel a little awesome when I eat them. Next I would like to thank all those who have watched Laila while Jeremy needs to get some work done (April, Knoecks...) Thanks to Aunt Gwynn for coming up from Chicago for 2 days and making Laila's day!! Thanks to my in-laws who are leaving tomorrow to give Laila and Jeremy some more normalcy for awhile and my Mom and Diane for coming later this week. I am not sure either Jeremy and I could have done all this craziness without you. And of course I want to thank Jeremy and Laila Girl for coming every single day and stay hours at a time with me. And for bring my food that isn't from the hospital. I know this is just as stressful on you two as it is on me. Mommy will be home soon!

Ok, Cassie...remember to breathe...

Thursday, November 29, 2012

My name is Cassie...I have CF!

So you know something is up after 6 years of avoiding a CF support group, and I found myself in one tonight. I don't want to claim that I loved it, but I did like hearing about the guy who was 4 months transplant. Not too far removed from where I am now. Dear Lord, this will be ok.

I got word that I will be staying throughout the weekend. Sicker than I have ever been and still trying to be ok with it. And before I leave I need to do a six minute walk to see where my oxygen is at so I can take some home with me. Oh plus get my handicap sticker so I can stay level with this cold weather coming up. Again, dear Lord, it will be ok. 

Jeremy and I met with a member from the transplant team (a coordinator) yesterday to talk about a few things including what all happens. A scary mess of a meeting that left me overwhelmed and feeling very hopeless. I have fears of failing this evaluation and will let every down, including myself and family. Plus, then what happens when I have to look at my 3 year old knowing I can't continue the for her. Yes, I know to not think that way and to just kick some butt. But I just find myself with the major cases of the WHAT-IFS lately. 

"You know you could not make it out of surgery, you have to prepare for that"....AHHHH!! How do you prepare for that? How do I say goodbye to so many people and make sure all the words I want to say are said and that they all know its ok if I die. How do I tell Jeremy that he will be good and that Laila will be ok and not to worry because he is a strong person? How do I hug my daughter thinking it may be the last time I hug her...or that she ever hugs her Mommy. How do you do that?! She needs a Mom. I wish I could hug her right now so that I could be ok at this moment. 

Sometime reality is a big nasty thing. And listening to all that was reality. Jeremy and I are going to sit down together and with some family and figure out when the best time to schedule this work up/evaluation is. Yes, it will be coming up in the next few months...feb...march. So time to study for the biggest test in my life. What does that mean?

It means I work my buns off to do everything I can. I eat like crazy. Food is no longer just something for fun...its like medicine. When I am full, I need to grab that extra few forks full....and add butter to them. I start a monitored exercise in Hartford. Go someplace like the local hospital and work out while being put on oxygen and a heart monitor and having somebody tell me how and what to do. Start going into the hospital, even if Thanksgiving or a MI trip is around the corner...this comes first. Get more protein and more vitamins. The stronger I am and more I can prolong my life pre-transplant means the stronger I am and longer I can prolong my life post transplant. 

Tears, fears, and a positive attitude. I need to get the old me back again.

Wednesday, November 28, 2012

A tube feeding?!

Hey everyone. Ok so I have had a few days to calm down from CFcrabbyville and ready to update.

I am still as sick as a dog but my oxygen is up to 93% and my pulse rate is 98. And I am not having the oxygen on ALL the time. So two things are better off. I weighed 102 things morning but don't get excited, that should just tell you all how much water weight I am carrying from getting pumped full of fluids. A little funny really. 

A member of the transplant team is suppose to come talk to me today (or really in the next week I am sure) to give me some more information and talk about the evaluation. Although scary I am looking forward to knowing just a bit more of the big battle ahead of me. I like to be informed and please don't sugar coat this crap. I just hope I make a good impression in my sweatpants and dirty hospital hair....I'm looking good. It will be nice to get some questions answered and learn what I need to work on the most in the next few weeks or days or whatever the time limit is before the evaluation starts.

I am starting to eat more and....wait for it...having been doing some tube feeding. They switched formula and it seems to be doing my tummy much better than the other stuff. PHEW cause if I need to pack on pounds and have to do it this way too then I need my tummy to enjoy the ride as well.

My sugars are all over, but mostly high. From the past we know that when I get sick that this happens, but I need to get them regulated for this umm Sugars let go. I did need insulin yesterday and wondering if today will be the same.

I have one of my favorite nurses here on D6 and just makes me feel safe and like somebody is fighting for me when I need something done. YAY DEB! Thanks to everyone for all the kind words, thoughts, and prayers. And for those who have asked to come visit too...just a little crazy around here right now (or I'm spacey so I think its crazier than it is...either way!)

Plus Jeremy and Laila are coming to give me a little slice of home today. They came yesterday as well and I am pretty sure Laila thinks that the hospital is the coolest place on earth. She came in hugged me, kissed me, blah blah mom...took her shoes off, climbed in bed, pulled the covers off and asked to watch cartoons. What a gooseball (as Laila would say!) Jeremy and I did some Christmas idea shopping and card making. Then went for a walk...I lasted for like 5 minutes before I ran to cough and grab some oxygen. HAHA! Thanks you too for doing all that for me!

Sorry the last post was so grumpy and gloomy...just having a bad day. But as the antibiotics are flowing and the oxygen is coming I think I will be getting back a little at a time. But CF can still suck it!

Monday, November 26, 2012

Can I have a hit off your oxygen over there?!

I hate being sick. But what is worse is when you are 50x times sicker than you had thought. Thats how my day has been. This is the first time most of you will hear, but I am sitting in Madison hooked up to about 4 things. Not a very pretty sight. And my NP uttered the words, "you are towards the end of CF." GULP. The truth sometimes is way too harsh.

I came into the hospital knowing I was going to stay for a few days to get things moving on the month long sickness that has ruled my life. Well, looks like I am in for almost a week. Every number was way too high or way too low and I feel like a CF failure. And I know many of you don't like hearing me say that and can disagree to you are blue in the face, but I do feel like one.

My oxygen was at 87%. Yeap 87% so thats one test I don't have to take, cause I already failed it...Cassie gets oxygen for home. My heart rate won't go below 112 because of the no oxygen thing, heck my blood was even like BLACK. I am a whole...wait for it...96 lbs! Yeap lost 6 lbs. And I could go on but will save you all my sad grumpy mood. Lets just say I have a huge uphill battle to fight, and fast. I am also in talks with meeting a member of the transplant team and getting that whole things really rolling. So to sum this all up...SCARED.

But oxygen has proved to be my best companion right now, in a matter of 30 minutes my oxygen had already gone up to 92% and I am thinking that I will be able to get an ok night sleep tonight. (After I order more food, even if it is 5gm, right Jeremy!) So I hope I can be well rested for whatever the game plan is for tomorrow. 

I am so sorry this entire blog seems like a downer, I just am in a CF can suck it kind of mood. But I am hoping all my friends and family are having a good day and can be thankful for the health most of them have. Don't take it or time with people you love for granted. You never know when it could be taken away. While I can think of a few families who know this feeling and I love you guys very much. Go hug your children or call you Mom to just chat or sit down with your spouse and hold their hand. 

Like I said this is a battle...but one I need to beat so I can win the war.

Friday, November 9, 2012

I was a kid once

When I was a little girl I never had to be told I was sick. Or what CF was. I just grew up knowing I was a little different than most kids. 

Now the odd thing is that my sister is not that healthy either. When she was a baby she had open heart surgery and has had to go to the doctor every few years to check her heart out. We often joke to my parents that it was a sign they shouldn't have mixed Italian, Swedish and German together and that God was telling them ENOUGH! Ok all jokes aside I think that her being sick too helped a bit. Only because at least I wasn't the only messed up child in our families! (BTW she is doing AWESOME!!)

I was the ditzy little blonde you see up there posing because I was for sure thinking I could and would be the best model ever (you know if the bird thing didn't work out...only a few people are laughing right now and thats ok!) I loved to play Barbies or My Little Ponies with my sister. I was the girl who would rather wait til the last second to go potty so I wouldn't miss anything. I was the little girl who ran (very clumsily!) and didn't get out of breathe. Life was pretty normal, I just had to go to the doctors more often.

My parents did a great job to make sure I had a normal life and that is very important. I was normal after all, right!? If I was a good girl when I got a shot or stayed still during a sit with the ENT I could get a special treat...I remember one time my dad during an ENT visit (which he HATED) told me if I held still and didn't cry he would buy me a Barbie. Little did he know I didn't mind the ENT because it meant no needles. I sat SO still cause that Barbie was gonna be mine. She was so beautiful. The other thing my mom would do in high school was let me skip a half day after an appointment and let me relax while she and Grandma would make some lunch. If you have the bad, you can have some good too.

But I do remember getting certain new meds. Like my nebulizer or when I started to take my pills in capsule form and not mixed into my applesauce! I never questioned what it was for, I just did it. I also remember my first PICC line (Ok, I questioned that one and many of those after!!) And I remember every surgery. I look at Laila and just think, "How did my parents do it?!" 

But Laila is at that age (and seeing me sick so much) that she is starting to just KNOW about CF. Now I haven't been to the point, and not sure how or if I ever will be, in explaining to her how this is terminal. YUCK I hate that word...TERMINAL. I figure one day she will figure it out when she learns more through my doctors appointments, hospitalizations, surgeries, sicknesses and listening to her parents talk. But for now I am letting her enjoy the childhood she has without having to worry about her mommy and the thought of not always having one. 

Still now its time to do some work and rest up. Meds and water!

Wednesday, November 7, 2012


I am doing my respiratory vest right now so feel free to read this entire blog in a shaking voice. 

It was great to be back in Michigan and I miss it and am looking forward to going back. But now that I am in Wisconsin again its time to start feeling better. HAHA! I still feel like crud and even ran a fever yesterday. Way to go Cassie. But the fever broke during a night nap and I sweat it out and through my sweatshirt. 

It is crazy how I can say I am not going to let Cystic Fibrosis run my life, but in reality...of course it does. It always has and always will until either the cure is found or I am gone. But for now lets just keep the infections and germs to a minimal. Great season to want that to happen. I have a doctor appointment set up for December so we will see what he has to say and whether or not to go to the next step of a lung transplant...oh that those dirty words.

Jeremy and I went around to a few classes in Laila's school yesterday to talk to the kids about CF and he did a great job, as for me, I am pretty sure a few kids want CF so they can wear the vest. D'OH I didn't get thru to them. But at least they know a little more and maybe have good questions for their teachers and can raise some money. 

This morning we went to Laila's class and the girl was cracking me up. She was answering everything and the only kid who laughed when they were suppose to. Granted it was a forced laugh but it was still a laugh. One kid told us the vest was cool...Lai responded with a "My Dad is cool too!" Made his morning. While Jeremy was telling the kids how raising money would help me Laila says "Yeah to but a horse! WHAT?! No, girl to find a cure. But she loved having us in there and it was the first time she cried when she had to stay at school. Even though I was sad she cried it was kind of cute to watch her lip pucker and try to hold back tears before they ran down her cheek. But luckily she has an amazing teacher who made her a happy girl. 

I really need to shake whatever this nasty stuff is because its affecting everything including my mood and my house. But I am hoping that once the freeze comes my lungs will settle down a bit. PSH I hope so cause this no sleep thing is giving me dark bags under my eyes!  I NEED BEAUTY SLEEP :) 

Thursday, November 1, 2012

Still a great Halloween!

Looting candy from your child...I finally know the best part of Halloween. Thanks for the Snickers Laila!

I woke up yesterday feeling like such crud!! Of course, why not on Halloween when I want to walk door to door right?! So I made sure to rest as much as possible before the big night. It kinda worked, kinda didn't. I made the choice not to go door to door with the little one because of some factors. But was so thankful that I had 3 adults who were willing to dress up and walk as much as Laila wanted to!

We went to Aunt Dianes house and ate soup, enjoyed company and Laila got to have a Halloween to remember. Full of ghosts, goblins, and unicorns!!

The stories I heard where so super cute. I guess I taught my daughter about the unwritten rules of Halloween. When a lady offered to let Laila pick her own candy out she picked a tootsie roll (Moms rule: take only one candy!) So the nice lady told her she could pick another one out...another tootsie roll. One lady offered to take some back to Ge. Laila's response, "No she doesn't have a bucket!" (Moms rule: Laila is the only one with a bucket who collects candy, its just for kids!) She told one lady she couldn't have a big candy bar because she didn't have room in her bucket!

She had a ball and honestly thats all that matters to me. Even if I made a choice to not see it. It was hard and earlier in the day I got teary eyed thinking about her life not being normal because her mom is so sick. I started thinking how unfair of me it was to her. Luckily I have a good support system for her that steps in when need be (you all know who you are!!) One day I hope I can go house to house and watch as she pillages the village!

Monday, October 29, 2012

Just cough it out!!

Well, Jeremy got his wish and got to go see the Tigers in a World Series game!!!...and sadly got crushed when San Fran ran away with the sweep that night. But he still had fun and took Laila and I back to Michigan for some R&R!

Yeap, I snuck back to Michigan with only a few people knowing. I don't do that often but this time it wasn't for ALL fun and giggles, but to hel up on my antibiotics and get some extra help with Laila since Jeremy is super busy all week. I do have a great family, don't I?!

My belly is full and I am getting cozy and about to go to bed soon (I am supposed to watch Hocus Pocus with Angie, but she is laying with Laila and my guess is going to fall asleep. I love that little cult classic and so not ashamed to say I watch it at least once a year around this time. "Come little children, I'll take thee away..." Haven't seen it? You probably won't like it if you didn't see it as a child..kinda silly.

Laila was able to carve 2 "Jack O'Lamps" as she calls them in the last 2 days. One with PaPop and one with Aunt Ang. Girl loves them and it was so nice to be able to enjoy watching her have fun but save my energy for a night of trying not to cough. HELLO ANTIBIOTCIS...kick in!! And she will have 4 or more adults with her on Halloween, so I don't have to feel like a guilt ridden mother for not taking her out as long as she will want. She is very very excited for Wednesday night!

My dad told me I worry too much. (Stop shaking your head yes, dad!) But I feel the things I worry about our pretty legit. Like getting turned down for a transplant, umm hello people it could happen. And then what, how do I tell people I am a failure that way. How do I tell Laila that? He told me I need to worry about problems for that day instead of borrowing worries. The lung transplant thing is an everyday worry until the day I am feeling better and healed up, and then I will STILL worry. Sorry pops!

Well, Angie didn't fall alseep so I am having a sissy movie night on the comfy couch with maybe some cheerios to wash down another anitibiotic. Hope you all have a trick or treating halloween and happy reformation!! Can't wait to see pictures and post some of mine!!

Wednesday, October 24, 2012

Finding a cure

Yes I am still alive, just haven't had time to get on here and write. The last week has been crazy busy and now I am sick. UGH. Sick. Again.

Angie and Stacie came from Michigan on Thursday night so that we could have a wonderful "schnister" weekend. And boy what a weekend it was...

It started with our annual Halloween party/scavenger hunt. (This is a picture from the hunt. Challenge: picture of your team with a person in uniform...) We avenged Hartford for awhile, it was NOT an easy task! I am so geeked about being Thor, who wouldn't want to be the god of thunder and come all the way from asgard to help her team, am I right?! I had so much fun and was still feeling pretty good at this point so why not enjoy everyone at the party and all the pictures we were able to capture And HAHA there were some good pictures! Thanks for everyone who made this night one not to forget. 

Then onto Saturday night and the Cystic Fibrosis Foundation's Breathe of Life Gala at the Harley Davidson Museum in Milwaukee. One night we are avenging a town....the next we are trying to find a cure. 

It was a good time getting ready and all dolled up in order to enjoy a special night with some of my favorite people...and all while supporting my favorite cause!! There were so many wonderful people at the event. I was surprised how many people had remembered me from 2 years ago, it was very humbling. I chalk it all up to the cute little girl sitting behind me on that bike up there. Everyone wants to see that her have her mother for as long as she can. And really I want that too.

But this year was Jeremy's year. I didn't have to talk or have a panic attack because he did all the work! He was the guest speaker and he did such a wonderful job. One lady came up to us and said she joined the CF board after his talk. The director said it was the best speech she heard in the 25 years she had done it. Another gave me a kiss and wished both of us luck. Here is a little bit of the big guys speech:

"Living with CF sucks.  There’s no getting around it.  I can’t imagine what it feels like.  I don’t know what it’s like to wake up in the middle of the night not being able to breathe.  I don’t know what it’s like to cough up a cup of blood.  I don’t know what it’s like to face the idea of having a lung transplant that, even if successful, doesn’t mean a new lease on life.

Truly I don’t know what it’s like to have CF.  But I am here tonight because I do know what it’s like to listen to the woman you’ve known and loved since high school gasp…literally gasp for air…because the workload of sleep was too much for her lungs.  I know what it’s like to look at her and feel helpless; to feel scared out of my mind, and just be sad—but not be able to show any of it.

I know what it’s like to lie to my wife every day.  To tell her that she’s going to live longer than me.  To tell her that the reason I drink so much is because of stress at work.  To tell her that I’m not scared about the prospect of raising my hellion of a 3 year old on my own.  To out and out lie and tell her that I’m not scared or sad at all and that I don’t think about my 29 year old wife dying a scary, bloody death from suffocation.

I’m here tonight because I know what it’s like to need help, but instead always be the helper.  So tonight I am asking you for your help.  I don’t want you to come and help with washing the dishes or folding the laundry.  Your pity and your sympathy are great and appreciated, but I really don’t want them, either.  Really and truly, I just want your money."

Needless to say, it was a tear jerker. And now here it is Wednesday night and I have been sick since Sunday. I am pretty sure it is a mix between a cold and a flu. But I have been down for the count in a messy house and not being able to do much but sleep. I am hoping tomorrow I will be feeling good, since next week I am going into Laila's school and doing aCF talk. But even though I am a sick sick girl I did start part of another check off the ol' 100 list all thanks to many Sun Prairie girls....keep reading!!

Saturday, October 13, 2012

A full tummy

It's not even done and its turning out to be a nice little Saturday! Granted it was a long night with a tossing and turning baby so I didn't get a goodnight has been a good day.

Yesterday, Laila wasn't feeling very well. She ended up tossing her cookies so she got a special day. Daddy put a tv in her bedroom so she could lay in bed all day and just relax. (And I think it worked a little too well because she has soooo much energy and that I can't keep up, but it's ok because it means she is feeling well!)

Today is the funeral for our family friend and I wished I had been able to go, but this is when I don't like that lake in between my family and friends and me. I can't always get back. Instead I am making the most of the time I have on this rainy dreary day.

I woke up pretty early and took Laila back in her room and watched TV in bed (selfishly I was hoping she would watch while I napped...she was too talkative!) So I was up and on the slow move to get somethings done on this lazy Saturday. Haha Ok so I got nothing before I looked at Jeremy and asked if I could take an hour nap. Woo hoo bed here I come! I started to dream about pots and pans clanging...I know it surprises nobody that I would dream about food. But to my surprise it wasn't a dream. I was woken up from my nap by...


Laila climbed into my bed and handed me my pills and a napkin with a huge smile on her face while Jeremy carried my food and milk. Eggs, turkey bacon, toast, hashbrowns...the whole nine yards! I got to eat breakfast in bed and just relax while Laila was being fed and the dishes were being done. JEALOUS?! Yeah I would be too. Thanks a million Jeremy and Laila for my yummy food and coming out to a clean kitchen!

Just a cool way to start a busy a nice little day. Now I get to get a few things done, watch Michigan and relax. Ok so if I am watching Michigan I take back the relax part (c'mon Denard!!) Thanks to a rainy day and Jeremy and Laila I get to cross off another item on my list...#68. Have Breakfast in Bed...CHECK

Wednesday, October 10, 2012

An odd day I guess

Today I have been feeling blue. For selfish reasons. A family friend passed away from ALS last night and I talked to him often about our fights. Now his fight is over and we all rejoice that he is in the Lords hands and has no more suffering. But, we all will miss him and I will miss my inspiration. He never lost his faith or he never once complained about his life. I looked up to him and the way he fought so well and really in quite good spirits. I am glad I had the privilege to know him. And I am glad that now he has had the privilege to know heaven.

I have still been feeling pretty good, but today I was moving a little slower. I am just glad I still did a few things that needed to be done. Including some laundry. This was the first time I did laundry since I coughed up blood and I would be lying if I didn't say that I was nervous. PHEW no coughing and no blood. So glad and a huge sigh of relief.  Luckily, I still have a husband who cares enough to make sure I am not over doing it and doesn't mind getting the laundry for me. Thanks Jeremy! 

I am trying to learn ahead of time (by making a list...SURPRISE...) what all needs to be done in a certain time and the longer I have to do it the slower I can go and easier on my body it is. But there is never enough time, ever, right?!

Laila had another great day at school today...really just a great day in general. She even took a nap with Mommy. A little snuggle bug (she read me a book and kissed my cheek goodnight before she fell asleep, could the little girl get much sweeter!?) 

I guess my mind is really ready to write too much but I knew it had been awhile and just felt like having something on my blog for the week. I promise I will get things back to more normal and will start to write a little more and the things I know I need to write about. But tonight I am gonna sit back after a yummy dinner and just watch the Tigers hopefully clinch the series. And continue with that list...

Thursday, October 4, 2012

Take a breath

Mushy brain again today. I have too many things running through my head. What do I need to get done in the next few weeks? What should I make for dinner? Ugh I have to do laundry again. Is Laila going to be a good girl today? Sad, Laila wasn't a good girl. Should I keep this around or get rid of it? How many days til Angie and Tay get here...not soon enough?! How can I get more things crossed off my list, am I gonna be able to do it? Is my health gonna let me do all this? OK so those are just a few things, but you get what I mean right? 

My breathing is getting heavy again and I just need to put all efforts into making sure I do what I need to bust out the bike again. Get ready Laila! Being sick is such a vicious circle of you need to do this in order to be able to do that so that this is good enough to do that...did you follow that, cause that statement is just as crazy as the circle. My weight needs to be up so that I am fight infections, but my lungs need to be in good order so I have an appetite in order to eat and gain weight. And then add how the coughing makes me so exhausted that my body tries to shut down and rest for awhile. That hurt my head just thinking about it.

And having the support and love of those around me only helps that. So thanks to those who call or leave message asking how I am, or wondering what they can do to help. I need all of you and all of the support and friendships I can. You help more than you more! It is so important to me that you want to be there for me or care or just don't back off because of silly reasons I can not control. Thank you a million times over! (Raising my glass of milk) This one is to all of you!

Today I started the process on another item on my bucket list. And one that means so much to me personally. But I don't wanna jinx the fact that it might not work yet, so I will keep my lips zipped for now. The best is only one person knows about it...and its the person that called! Haha!! I put the rest of my photo shoot pictures on my facebook page. Thanks again Hyer Images for all your awesome work and patience.

My guilt pleasure is on TV right now, which means goodnight blog and readers. And since this girl is trying to keep her weight on and up I am gonna smash on some Frosted Flakes...they're GRRREAT (if thats not a sign that I need to go to bed...!)

Wednesday, October 3, 2012

An apple a day

(I couldn't upload a picture today so here is a cute one of Laila!)

I didn't get much sleep last night because I couldn't get my chest comfortable. I couldn't lay on either side or I would cough. I couldn't lay on my back, because I would cough. I couldn't lay on my tummy, because I would cough. I couldn't lay in the normal ball, because I would cough. I think you get it. I finally got out of bed at 4 am and did another round of my neb and then was able to untighten my chest just long enough to get a few hours of sleep. 

So with a few hours under my belt I threw dinner in the crock pot, got myself ready and woke up Squirt in order to head over to school for Laila's very first FIELD TRIP. So excited that I was able to go with her, just an awesome perk of being a stay at home mommy (now I want to clear the air and say I am not saying ANYTHING bad about the mom's who work. As a matter of fact, I have often said I give you all a ton of credit because I know for sure I would not be able to do both.) But it didn't help that I was outside in the damp air walking up in down hills and then sitting on a some hay. If it wasn't bad enough that I was stupid enough to do yard work yesterday. But it was worth it to watch Laila have fun with her friends and pick her own apples. (And be there for a snuggle when she was the only kido who fell!)

My house is still in pretty good fashion. Just a quick sweep and it will be back to a good clean order. So happy that I am still able to keep up with it. Lets hope this continues, right?! I am still in the process of crossing things off my bucket list. And I think in the next few days I will have one done...fingers crossed. 

Thanks again to all those who have offered to help me, if I haven't responded its because I am trying to figure out my schedule and how best to get your help. But there are some AWESOME ones out there...more memories to make and more crossing off to do! 

It was also very cool to hear so much feed back on my blog over this last week too. People that I never would have thought are reading this...probably right now...and it really does humble me quite a bit. I know I'm not the best writer, but it feels so good to just be able to write things out. So THANKS A MILLION for all the reading and positive feed back. Anything you guys have questions about in my CF life please ask, cause I am not sure what you wanna hear about besides what I have been typing. Also...stayed tuned cause I am gonna be writing about another very cool person in my life.

Monday, October 1, 2012

A quick blog on a quick weekend

What a whirlwind of a weekend. I MADE IT! I made it to Michigan and through the weekend without coughing up and more red stuff (I don't like the word blood...too scary!) But I can tell you I have never EVER been so scared to cough or hear a wheeze or to walk to much or to pick things up, or really to do anything! I didn't want to ruin what was a nice weekend and I didn't want to not have to tell people that red stuff came up. But thanks to me actually listening to the doctor and by the hands of God I healed!!

The rehearsal and wedding went well. And so did Team Cassie's cornhole tournament. But don't worry I breathed deep and made sure not to go crazy. I knew my limits and followed them (which blah is so hard for me to do because I wanna be with everyone I know when they are together!!)

I now have a new sis in law. Welcome to the fam Aunt Theresa! Laila had a ball dancing all night. She loved being with her aunts and cousins (sorry uncles she was loving her girls!) Jeremy and I had fun too. He did a great job on his best man speech, knocked it out of the park. It was nice to see everyone from the past and of course those who came from MN.

I only got to be at cornhole for 2 hours but those few hours were a blast. They had 42 teams sign up and the crazy madness started. I got to see the Zell family and so many friends, which means so much love going around. It was a huge hit and look for it again next year Team Cassie fans!! Thanks for coming out eveyone.

And here I am now sitting in WI on the floor with my daughter trying to recover from the weekend. I need more food and sleep and this girl with be back. YAWN. I need a weekend from the weekend. And this week might not be it. But hey just need a few carbs and naps hehe! I am sure you can tell by this blog that my mind is tired and not witty, psh I'll be back again next one.

Wednesday, September 26, 2012

Red is no longer a color I like

I don't have a clever way to start this blog. A way to grab your attention and hold on to it. Maybe because my mind is in a fog or because I just don't feel like trying to be clever. I should be really excited tonight and doing my normal hustle and bustle the night before a Michigan trip. But instead I am sitting in Jeremy's chair with comfy clothes, hood up, and the computer on my lap; all while Jeremy does the packing, bathing of the child and cooking of our dinner. SIGH.

This morning was school pictures (which Laila had to have many takes because she Rev'd every picture they took...which is the Zell way of saying the girl couldn't have a natural smile!) and while they were taking them I told Jeremy that I had this weird cough that wouldn't stop. It wasn't a hard cough or a long cough, but a nagging deep cough that just wouldn't go away. Oh well, its allergy season, right?! I got home after dropping her off and cough a big nasty cough that brought up some good junk (any CFers out there reading this you know what kind of cough and junk I am talking about!!) and felt so good just to get that out. I thought and still think it was part of the last deep infection that finally hit close enough to the surface and broke up just enough to work it out. Ahhh...a little more relief!

I went on with my normal day, shower, clean, watch a little tv and rest, pick up Laila from school, lunch with friends and back home to get more things done. Just one more load of laundry and I was done and could start the process of packing...that big process of never knowing what and how much to pack. I carried the small load down and just had to clear my throat...which lead into some liquid coming up. Well, since I had just eaten some Lucky Charms (always a kid a heart right) I thought my tummy just didn't settle well. Then the coughing started...

I walked up stairs with what I thought was more crud to spit out in my mouth. Patoueee...I spit it out and saw it. Blood filled the sink. I coughed more. More bright red blood. I screamed for Jeremy in between coughing and spitting out all blood. BRIGHT RED BLOOD.  I was coughing up all and only blood. I mean I have coughed small amounts in mucus before..but this was just gooey red blood. I knew the time would come when it would happen...and really I have always been OK with talking about dying, but never could joke about coughing up blood. It was too scary. But here I was in my own fear.

Jeremy ran and got jeans on and said we were going to the hospital..."everythings going to be just fine, Cass" is all he could say (and only thing he will still say when I ask him if he was scared.) So I did what I am sure anyone would do, call your doctor! The one good thing about this all is I happened to do it on a Wednesday, which is the day my dr happens to be in the office. And I was lucky enough in my fear to be able to talk to him directly. Thank goodness he was there and could talk to me about it. 

"Most likely a huge vessel that broke during the day and it needs to heal and stop the bleeding. Don't rush to the ER because the anxiety and everything going with it could aggravate it more. You need to be a pre-Madonna and do NOTHING all night. If you are coughing up a lot still in the am you come here. Don't drive tomorrow. Don't pick Laila up for awhile. If you cough up a ton on your drive tomorrow you find the nearest ER. If you cough up in MI then you rush  to UMHS."

So, yeap, here I sit with the computer on my lap trying to heal something I don't know how to heal. CF snuck up on me and it scared me.  It grabbed a huge fear of mine and through it in my face...and out in the sink. And trying to not have anxiety or excitement is so hard. Don't cry and breathe deep. Don't cry and breathe deep. I am ready for a cure.

Tuesday, September 25, 2012

Over 5,000!

Holy Cow! I have had over 5,000 views on this blog. I am seriously blown away. Thanks everyone for reading, I must not have bored you yet!

I am still feeling pretty stinking good and I am working on keeping up my weight. Thanks to Wal*Mart and their nice sale on cereal right now, I can't stop eating. Nor can I keep my cereal stock, well...stocked. I still don't have any crackles in my lungs YAY. My arm itches a little less YAY. Still have some energy YAY. Was able to get everything done on my to do list (mostly) YAY. And I have been able to keep up with my house very well super YAY!! Thanks to everyone for all the thought and prayers the last few weeks. It was nice to hear from all of you, I need support more than I lead on to.

I am pretty excited because Jeremy and I are helping Laila's school with a Cystic Fibrosis fundraiser. This includes talking to the kids and teaching them a little about CF. And because its a huge hit, my vest is a must to get the young ones to remember and talk about it. I am trying hard to think of a way to get Laila involved...when I am gone (whether it be in 1 year or 20) I want her to be  wonder speaker and rep for CF. Get the awareness out and be able to tell her story. Start them out young right?! (Although last time I got her involved she stood in front of the crowd and started to take her dress off...sigh...) 

After this weekend (which is so busy I am pretty sure if I blink I will miss it!) I am going to take a look at my list and get a few more things checked off. I have a few in progress, you can check the list to see what I am doing if you care to, but really want to nail some down. I have a few in mind so watch out. 

Tomorrow is picture day for preschool and I worried too much about it. Its more pressure on a parent than I thought! Do you go timeless? Or do you go with whats in style? What color do you do? Now what about the hair? Ok that last question has to be revised a little...Now what about LAILA'S hair?! Thats something to think about when we wake up. But I let her pick from an option of 3. And no, it doesn't have purple or glitter...I am just as shocked as you are!!

Well, cereal is calling my name and I am going to get some progress done on my 100 things list (you may ask what it is...just wait a week or two and I will fill you in!!)

Saturday, September 22, 2012

"Fly like an..."

...So this is what happened on my way home from Madison! I know, I know, you can't tell from the picture. But thats because I couldn't get a picture. But this was a moment later!

I SAW AN EAGLE IN THE WILD! I am pretty sure it was a gift from God, because I have taken that trip many times back and forth over the last few years and never even knew eagles lived there. But there is was, an the wild. 

I was just driving and groovin' to my tunes while my child was napping and I saw this bird go in for some road kill. So I was like, "Geesh this vulture needs to move. Huh...I didn't know vultures claws did that. WOAH, thats so not a vulture." I slammed on my breaks and like screamed! Too bad nobody was around to see it with me (well, Laila was there but obviously you can see by the picture she was sleeping...)

It was amazing. They are beautiful!! I totally think America has a wonderful symbol in that big bird. Eagles always remind me of my grandpa Doddie! I am getting excited all over just thinking about it, and now I want to see another one. EEE!! Another unexpected cross of the old list...#5. See an eagle in the wild

Thursday, September 20, 2012

Giddy Up!

Look at her...RIDING A PONY!! Laila loooooved this way too much! And this was just part of an awesome day.

It all started with sleeping in until 7:30 and being able to get myself ready while my beautiful daughter slept in even longer. Even though I was hooked up to my medicine the entire time, it was great to be able to wash my face, brush my teeth, do my makeup and all that stuff without a little shadow! (Yes, I love my little shadow but as all those moms...and dads...know sometimes its nice to be able to do things by yourself.) 

Off to Madison Laila and I went to get my picc line pulled. The whole ride over all Laila talked about was how she wanted to see a pony and pet one, and maybe even ride one. The funny thing is she had no idea what was in store for her, I hadn't told her anything but that I was going to take her to give her a surprise. I like to think that maybe we are so much a like that we can read each others minds...but I know its just her seeing a horse and talking about it.

I blew my PFT and the numbers stayed the same, but since I was feeling so well and able to breathe better they said they would pull it. I was very excited because it meant getting my arm and skin back after 2 weeks. I itched and rubbed and ahhh did it feel good. (But now it is so entirely sore it brought me to a few tears...yeap I'm not as strong as many of you think!) Laila watched as they pulled and she did a great job. She stood by my feet and asked a bunch of questions..."does it hurt momma?" And the cutest part was when the nurse told me to take a deep breath and hold it, well, Laila did it too. Def gonna be a little nurse or doctor. Love her.

Then off to Christys house to ride horses. Laila was so excited her little body couldn't sit still! She even got to brush Reba and get her ready for her saddle. So we went to the ring...or merry go round if you speak in the language of ride her. She couldn't stop smiling!! She had a blast and rode for about an hour before we peeled her off, which lead to tears and being able to see the other horses and sit on Reba again. 

Christy, thank you so much for spoiling Laila (...and me) and giving us a wonderful time today. I am pretty sure she has the pony riding bug now. Maybe she should ask Daddy one for Christmas!

After a few more goodbyes we headed toward home when all of a sudden out of the blue I got to be able to cross something off my bucket list....stayed tuned :)

Tuesday, September 18, 2012

"I need to sprayed"

I am so super excited because this has been a pretty cool week so far! It started with my wonderful sis, Angie, and our friend Emily coming into town to clean...ok DEEP CLEAN...our house. I will admit that I have not kept a house that I am proud of. But now its nice to be able to look around and see through things and be able to eat off the floor again (ok don't worry we don't really eat off the floor!)

They scrubbed every inch of this house and didn't complain about it once! And if that wasn't awesome enough the girls didn't do this because they expected anything in return, or to hold it over my head for years. They did it because they love me! And Laila girl helped as much as she could! She sprayed the windows, she sprayed the table, she sprayed the floor, she sprayed Angie, she sprayed the counter, she sprayed the oven...I feel I don't need to go on, you probably got the gist of her favorite chore. But she really did work her tail off making sure to be like a big girl and help. (She did clean walls and floors to...and cried because she wanted to "wash the house" even more!)

I am not sure if this is a first step in my accepting help of not. And really not even sure if I want it to be. No let me state that one differently, PART of me doesn't want it to be. One side knows its ok and good and the right thing to do to accept the help which is offered up (and this was huge for me to let these girls do this!) but the stubborn part doesn't want to admit that I need that help yet...or at all! But hey I am working on it!

So girls, THANK YOU THANK YOU THANK YOU for driving all night, letting Laila wake you up both days early, spending all day cleaning, taking me for hot chocolate and Culvers, and making me laugh and smile the entire time! (Emily, she asked me if I could get that car game on my phone with "the spinner things like this (as she shows me how to spin it!)) Next time you come I hope that it can be all fun!

I get my PICC line out on Thursday (I am literally counting the hours down) and so very excited to feel the blood rush back into that part of my arm. And then to be able to use my arm again. I am feeling pretty darn good and am hoping this clean house will help me stay feeling so stellar. Let's hope this great week keeps up!

PS: I got my Hyer Images photos back tonight! GEEKED! Here is a little sneak peek:

Thursday, September 13, 2012

Two Awesome Cousins

I love these two very much! They have the biggest hearts ever. They do things for everyone else...not because they want anything back, but because they love to make people happy! Especially their family.

Dawn and Tom are my cousins (well Dawn because she HAS to be...Tom because he married dawn and was forced to be!) and I seriously think they are some of the best people in the world. If I lived closer they would get sick of me, because I would want to see them at least once a week. 

I will also say...before I get in trouble with the rest of them. That I love all my cousins and am very close them them all! But Dawn and Tom are pretty special! I didn't have get a chance to have them in my life all along and it was just a bit ago that I got to get Dawn back and have Tom come with her...I consider myself very lucky. We are a very close family and ever since the passing of my uncle in Dec 2010 we all have be a ton closer. Family is forever.

I wanted to write about these two because they gave me a wonderful surprise in the mail today. A FRESH BAKED PECAN they know me or what!? This is just a very very small example of the things they have done for me. More examples: a few more pecan pies, making sure to see me when I can come home, being at every CF event possible (including working the garage sales which is a tough job), treating me like gold, and of course treating Laila like she was a true niece! 

Dawn and Tom love Laila just as much as she loves them. Another example of their kidness: they found her a big wheel...but not just a big wheel but a PURPLE big wheel. And they drove it up to Ann Arbor to give it to her and then took us to dinner. They spoil us rotten.

So, Dawn and Tom, I want to take this time to let you know how much I love YOU! I wish I had the years back that I didn't get to talk to you as much. I wish I lived closer so I could see you more. You too make me laugh, smile and feel very safe. I know that you have my back and care about me more than most cousins care about each other. Well, I feel the same way. I love you both very much and am glad to have you as mine. I claim you :) and that says a lot right?! Thank you for everything you both do for me, my family, and the fight against CF! Believe it or not I love you both 100x more than I love the pecan pie that I may or not be eating right now!! 

Tuesday, September 11, 2012

A little ballerina

Could my little ballerina get much cuter? This makes my heart happy...she loved her first class. Watching her giggle, dance, have fun and be a good listener all at the same time just makes me take a deep breath and think...Ok I must be doing something right. Then to watch her come home and show Jeremy and I what she learned was a nice feeling too. Growing up gal!

Today was one of those days that CF has to be in my thoughts and I can't escape it. Jeremy stayed home almost all day sick as a dog. Poor daddy! So this means I need to watch what I touch and make sure to wash my hands and not touch my eyes, nose, or mouth as much. Yes, the good thing is that I have a PICC line so I am getting very good drugs to knock away whatever he has...or just keep it to a minimal. (Look at that...a positive for having an IV right now!)

But this doesn't mean that Laila can't get the nasty bug and I will have to be even more involved with it. So hand sanitizer is a good thing to keep around the house so I can give her some once in awhile. The other good thing is that the weather is still very nice so I could just take Laila out. Park here we come! She was so excited to spend the day there, but was hard for me because I couldn't help her since I can't lift her.

Jeremy seems to be doing alright. Lots of over the counter medicine, kleenex and water! Hoping that when he wakes up after a good nights sleep...with help from meds...he will feel a ton better! Maybe even want dinner! Dr. Laila has been making sure he stays warm and that he gets lots of love. Poor girl is taking care of both of us now! 

I just dislike that it seems like no matter what I am going to get sick. Laila is going to bring bugs in from school. I am going to touch a shopping cart and get a cold. Jeremy visits somebody in the hospital and brings crud back. I hear somebody cough or sniffle and I am on alert. I can't get sick...I just can't. And I know I have done this too, but people are just inconsiderate about sickness. If you are still at the stage where you are contagious PLEASE STAY HOME as much as you can. What may be a small cold for you may be a life threatening cold for somebody else. It's just such a hard thing because everyone wants a normal life and to be able to go and do the things they want to do, and people who are sick just have to be on full alert and shelved with sanitizer no matter where they go. (Sorry for the rant, its been a peeve of mine since I was a kid...)  

I am driving into Madison AGAIN tomorrow to get my dressing on my PICC line changed...I feel I need to find a better option so I don't have to waste time and gas on this 10 minute crud. But I suppose it is better than getting an infection in my blood stream (EEPS!!) CF can suck the money, life and normalcy outta life. BLAH. 

Well, seeing as I should gain some more weight I better go eat some food. Drs orders...right?!

Sunday, September 9, 2012

Laila's Life

Laila and I were feeling very silly yesterday. I think it was mostly because we missed eachother so much. These photos are from our 30 we took of making funny faces (haha Lailas face on the last one CRACKS ME UP!) I did throw in a nice one of us before church just because I wanted to show everyone that we can clean up well.

I had a good time with Laila yesterday after her 3 1/2 hour nap...guess I am not the only one who gets exhausted while I am in the hospital! And as a side note this meant I got to watch Michigan ummm win too (Blue you better step it up!) It makes me very sad that because her mom is sick that her life gets a tad crazy too. I wish I knew how much this impacts her for the future. Is it gonna make her stronger? Will she be nervous when I go into the hospital more? Will she just think this is normal?

I believe that my CF made me have to grow up (in a sense) faster than a normal child. Even though I wasn't the sickest child nor the worst case of CF, I did have to go through things that I wouldn't want a child of mine to go through. But as a child I never looked at this as a burden, but more as just something I had to do. I never thought it odd that I did and my friends or family didn't. I just thought it was my life. 

I am hoping that Laila doesn't have to grow up to fast even though her mom might not always be there. Maybe her life is just different, still normal...well as normal as it can be. I am very lucky I have Jeremy who makes sure she can come see me (and that I can see her!) and I am very lucky Laila has so many people in her life that want whats best for her too. When I go into the hospital I feel great that people are willing to add her to their routines so she is taken care of! Thanks everyone for doing that!

I wondered how much little Lady understood so thought I would ask her a few questions. Some of her answers made me smile:

Why does Mommy have medicine: because you are sick
What does Mommy have: a boo boo
Why does Mommy cough: cause you have Cystic Fibrosis (now she does say this pretty well but really I couldn't tell you how she says it. But then she tells me to cough so she can pat my back.)
What do the nurses do for me in the hospital: They listen to your heart
What else do they do: they get your doctor tools
What is your favorite part of the hospital: Getting food and just playing with 'pluter (which is a computer in Laila language)
What does Mommy do because of her CF: (She fake coughs)

I think my girl will make a good nurse or doctor one day. Her bedside manner is already tip top...she tells me that my arm is so beautiful! She loves to help me with anything she can in regards to my medicine. She helps me secure my PICC extensions on my arm, she cleans my medicine before I hook up, she pushes the flush into the PICC, she pats my back when I cough. Yeap, I see a PhD or RN in her future. Dr. Laila...paging Dr. Laila!

Saturday, September 8, 2012

PICC Line...SchMICC Line!

Home after a short little visit to D6! Why is it that after a hospital stay, no matter how short or long, I am always more tired when I get home? This time the nurses were so wonderful about letting me sleep all night and not waking me up for vitals. Yet, YAWN, I am still exhausted! So I am gonna write this through a very foggy mind!

I said goodbye to Laila at school (thru more tears) and got ready to go to Madison. One more good shower and hair do before I don't have full use of my arm. We were off...and had to be there by 12. It was pretty darn quick in the pulm clinic...which now I am not really sure why I had to go thru all that stuff because we all knew I was going in. But alas! I blew my PFTs, which are now UP to 29% (this is up 3% so I was kind of excited because that just means after this it could go up even more. WOO!

Going in I knew that I was going to have to jump on the scale, and I totally got the nervous but excited feeling. Please, I just don't want to have lost weight...and maybe even gain a pound. So I jump...ok so i stepped...onto the scale and prayed. It was calculating and my eyes didn't leave the scale! DRUM ROLL PLEASE....102.6!! Boom...I gained 4 lbs (and to note I only had 2 tacos and a pop from Taco Bell in my belly!) That means I gained enough weight to have my BMI (body mass index) over 18%...which means NEXT STEP TOWARDS TRANSPLANT (another blog about this one later!)

Now to go to admissions and get into D6 and my room. Sign up at 1...don't get into your room until 3:30. Like that helps anyones anxiety (you may ask what I did during that time..I shopped at the mall then got back and waited...and cried. Then got into the room and had to wait 2 more hours to get my PICC (and in the mean time Jeremy went home to the little princess) and start my meds. Why did I have to go in so early when you knew I wasn't going to get a room because it was crowded?! I could have picked Laila up from school, like a good mom!

So as many of you had seen on FB I brag about good nurses quite often. MOST of my pulm nurses on D6 are amazing and go up and above to make sure that I am set and ready and that everything I could need or want is met. Not because I am a pain and demand it, but because thats who they are. But why is it that for every 10 good nurses there is 1 cruddy one? Like why when I was already upset when I get into my room the nurse, who since I can't say the name I gave her out loud, we shall call MUFFIN...was a not nice person. One line she used in my ear range: So another nurse comes in to get my vitals to start things off and she didn't have a mask or her gown or gloves on (CF patients need their nurses and dr to wear such things so we don't catch outside cooties.) So she said "Oops I hadn't realized I needed to put them on." Ok, no big deal to me. But then Muffin says to this nurse, "It's Ok, its not like you are gonna die or anything." And in response I say to Muffin, "You are right, I just could..." and the stare off started. Girlie, please, I will win this one! So thanks again to all my nurse friends who are wonderful and care so much for their patients!

Not too much happened when I was in the hospital...since I wasn't in there long. I got a few tests done. I talked to Brooke my NP (so my favorite NP switched to a place closer to home and I was very very upset...brought me to tears because her and I had a good relationship and she was one person who knew how to talk and handle me!) about the next step into transplant land. Got a visit from Laila, Jeremy and Aunt Gwynn....which left with Laila SCREAMING my name down the hall as she left. Oh my poor baby (she has been very clingy yesterday and today!) 

I still have my picc line and am doing medication here at home (hooked up while I started to write this!) and have a doctors appointment next week. Thanks to Aunt Gwynn for coming and helping with Laila, feeding my family, and cleaning part of my house. I hope you all have a person like Aunt Gwynn too...everyone needs one! Now I can start to get back to a "normal" routine of more meds and keeping my sanity for the next 2 weeks. So here is to getting healthier and packing on even more pounds!!

Tuesday, September 4, 2012

Waving the white flag

Laying down and not being able to fully breath is not ideal! And seeing as I am not getting any better or staying very healthy now that I am off antibiotics means its time to surrender and go in.

I was kicking and screaming yesterday knowing that when I woke up I would have to call the doctor and tell them when I wanted to go in. So I was pretty sure that Sept 11 would work...I could still make it for Laila's school and her first day of ballet but be out and ready for picture day and to head back to the great state of Michigan. It's all in the timing. Until I called and they said I had to come in tomorrow...and at noon. So there was the wrench and start the anxiety attacks.

Think, Cassie, think. As I was on the phone with Bruce (Bruce...really?) who I can only assume is another new nurse, I tell let him know that I will go in and thats fine but I warned him that I WILL be out before Monday. Hey, I know that you gotta do what you gotta do and yes, I know I have to give up somethings to win the war; but giving up some things in my daughters life now doesn't work. I have to be there to get her to her first ballet practice! Thats important to me! So I will fight and be a good girl in order to get out as early as possible.

Now to get everything done before I go in tomorrow. Another anxiety attack! After a few deep breaths and talking to my sister and Jeremy I am ready to start tackling my list. Most important...what to do with Laila since I can't be there and there are times that Jeremy can't be either! (Let me say I don't know how people who don't have the flexibility Jeremy that has can pull this crap off!) The texting and phone calls start. I will skip all the drama and tell you that Laila is covered with people to watch her. And really I will skip even more of the anxiety and tell you that I pretty much have everything almost done for tomorrow for myself! Today was one of those days I just feel guilty that I have to be sick! Tears a plenty!

With all that said I still have anxiety. I have things that run thru my Laila's life going to be crazy for those days? What if she needs me and I can't be there? What if she wakes up in the middle of the night and calls out my name? Will Jeremy get his work done?  And that is just the tip of the iceberg. But there are things that are getting me through these anxiety ridden fears. Like now I will feel better and for longer and maybe even feel good enough to gain some weight! Weight means being on the BIG LIST.  I want to be on that transplant list...NOW! 

So here is Tuesday before  my little "staycation" in the hospital and I'm tense and wondering what I am forgetting to do! But a nice sigh of relief because we JUST talked to Aunt Gwynn...she is coming tomorrow and making sure my family is settled and Laila will have her normal life and Jeremy can do his job. BREATHE CASSIE! BREATHE CASSIE! BREATHE CASSIE!

More to come from Madison...