Addy

My sweetheart. I was doing a photo shoot for my cousin and Addy jumped in! I couldn't pass up the chance...she was sitting so still, and smiling!

Happy Thanksgiving!

I am exhausted and will add more pictures later!

Happy Thanksgiving everyone! This was the first year that Ross and I hosted...for 29 people!! Needless to say, for a mama on IVs right now, that is a lot of work. I am pooped...and off to bed. No crazy black Friday shopping for me tomorrow...

I am so incredibly thankful for all of my family that was here and the family that was not. I enjoyed getting to talk to my brother today on skype...brought tears to my eyes, I miss him so much!

10 wonderful years!

10 years ago I had just started my first year at Malone College. I was young and enjoying all the freedoms that came with living on a college campus, away from home for the first time.

 I remember sitting in a required communications speaking class, bored as can be, and scoping out all the  guys that surrounded me. One caught my eye. A tall, handsome, brown eyed, dark hair, boy....barely a man, with the most sexy smile. He made my heart flutter, and gave me reason to wake up for that dreadful 8 am class, three days a week. Seeing him across the room, and watching him give his weekly "presentations"...made me giddy, even though we had never spoken a word at that point. I knew for sure that he was the guy I wanted to marry, the man I wanted to spend the rest of my life with. I know this sounds corny, and almost unbelievable, but couldn't be more true.

Week after week I would nonchalantly glance in his direction. I was shy, and had almost no experience with boys and dating. This went on through mid-October. One night I had plans with a friend of mine to hang out, and he had asked if his other friend could tag along with us. To my very pleasant surprise, this crush of mine was that friend. I was  formally introduced to Ross and it was love at first sight, and if not love, it was like-a-lot at first sight! Through this mutual friend of ours, we began spending more and more time together. I was not quite sure how Ross felt about me, but took a chance one night in the freshman guys dorm lobby and asked him out to see a movie. He said yes, and we spent almost every night hanging out and talking on the phone for the following weeks. This boy made my heart thump a million beats a minute and I couldn't get him off my mind...just ask my mom, I couldn't stop talking about him. I am sure all my friends and family were pretty sick of hearing about this Ross guy and even more sick of my girlie giggles and squeals at the mention of his name. I was in love. Head over heels in love.

 I had never told Ross about me having CF, we weren't even officially dating yet, and were definitely not exclusive. Sometime at the beginning of November I started getting sick, and was put into the hospital. At this point I had no other option than to let him get to know me, the real me, all about me. CF was not an issue for him and to make a long story short, he loved me for me. On November 15, 2000 he asked me if I would officially be his girlfriend. We have been together ever since. He purposed to me on October 1, 2002, and we were married on June 26, 2004. On December 9, 2005 we welcomed our first child, Caleb Ross into the world and 2 years later on June 12, 2008, our daughter, Adalyn Judith was born. We have built a wonderful life filled with love and joy together.

Ross still makes me giddy, and the very thought of him still makes my heart thump a million beats a minute. I look forward to him coming home every night from work, and I count the days until our next "date night". He is my best friend, the love of my life, and soul mate. I am never happier than when I am spending time with him and the most precious children that we brought into this world together. I appreciate everything about Ross. He is not perfect, but he is imperfectly perfect for me, and because of him I do believe in happily ever afters. Ross is my prince charming. I am more and more in love with him every day and cannot wait to spend the next 10 years of my life with him.

10 absolutely wonderful years together. 10 beautiful years. Gosh, I sure do love this man. I sometimes wonder what I have ever done to be so blessed.

How do I choose?!

This past week has been kind of crazy as most of you have been reading, but the exciting news is that we purchased some much needed new living room couches.

My living room is so empty right now. The old ones sold and the new ones will not arrive until Monday. I have a clean slate to work with as far as decor and accents, and for anyone that knows me...well let's just say, I LOVE to shop and I LOVE to decorate! I tend to have very expensive taste, on a little bit of a budget.

I came across an online store that offers just that on some of the most gorgeous and affordable coffee tables.

I am in love.

The possibilities are endless.

The yellow one may just be my favorite!

Good news, bad news.

I am not feeling up to writing much, so this will be short and sweet.

On top of the MRSA Staph and  PA (Psuedomonis) that I have been ecently culturing, I now can add to my list Steno. Maltophilia, E-coli and Aspergillus. Fun times. That my friends is a lot of cooties!

I will now be doing 3 months of antibiotics to hopefully wipe some of this out. What a nice holiday surprise!

My weight was down 2 lbs (in a week) and my PFT's (lung function) was up 5%. I guess that would be the good news even though I have about 10% more to go to be at baseline.

I promise that I won't be negative forever, this infection is just getting me down right now and I just want it to be over.

Friday.

It is Friday. Clinic Day. I am doing one last treatment before heading out to see my doctors. I know I am a few weeks from being done with these IVs, but I still am hoping for some sort of news that means I am heading in the right direction.

I think I am going to leave a few minutes early and treat myself to a coffee on the way.

Sounds like a plan to me!

I will update tonight on the happenings of the day...

So I am this bored.

So, I have been avoiding writing anything here lately since all of my most recent posts have been of me complaining. It is no secret that I have felt like complete crap lately...and to be honest, I have been pretty down about not feeling up to leaving the house. It is so frusterating when you just don't feel good. I do think I am improving on IVs, no question about it. It is just trading one sickness for another while on them. My cough has subsided, but I can't even hardly look at food without making a mad dash to the bathroom- and the couch has been getting a TON of attention lately. So, a little online "pretend" shopping is what has kept me entertained this evening. I have compiled the perfect list of items that would purchase to make me feel better laying around the house. Of course, I do what I typically do...add all the items to my shopping cart, drool all over my laptop, and then X out of the page after realizing that I have no money, haha. Want to see what was in my "cart" this time around? I am that bored. AND I am crazy about the new Army line of clothes and UGG's that Victoria's Secret offers.

I may just end up pulling out the good old credit card and getting myself a "Get well soon" gift. ;)

I really need a good movie to watch while doing IVs. All of this down time may just get me into trouble!

http://www.victoriassecret.com/ss/Satellite?ProductID=1284545100336&c=Page&cid=1284548325902&pagename=vsdWrapper

http://www.victoriassecret.com/ss/Satellite?ProductID=1265321285564&c=Page&cid=1284548325902&pagename=vsdWrapper

http://www.victoriassecret.com/ss/Satellite?ProductID=1265321285410&c=Page&cid=1284548325902&pagename=vsdWrapper

http://www.victoriassecret.com/ss/Satellite?ProductID=1265321384597&c=Page&cid=1284548208321&pagename=vsdWrapper

http://www.victoriassecret.com/ss/Satellite?ProductID=1265321755077&c=Page&cid=1265335959004&pagename=vsdWrapper

http://www.victoriassecret.com/ss/Satellite?ProductID=1265321387355&c=Page&cid=1265335959004&pagename=vsdWrapper

Caleb's Turn!

My kids are having WAY too much fun making movies of themselves. Caleb had a shot at it this afternoon, and Addy couldn't share the spotlight. My favorite part is at the end when Caleb is singing Jesus Loves Me and Addy says NO! Jesus loves me! Haha. I know my most recent posts are pretty boring, but my life is not all that interesting. This is about it! 

Addy ♥s making movies!

Addy's new obsession!

PS. I am starting to feel better. I ♥ weekends!

Well on my way to feeling better...Video Blog

An update via video blog...now I don't have to type it all out!

Trying out my webcam

Addy and I are trying out the webcam feature on my laptop. My joints are still pretty sore, so I think I may be doing a few video blogs until I start feeling better.

Time for IVs.

Back on IVs. I spent all day up at the hospital and the consensus is More IV antibiotics. My port was accessed and now I just sit and wait for the home nurse to arrive with my drugs. I am hoping to knock this infection out quickly, because I am so sick and tired of being sick and tired. This has been a LONG past few days. I am exhausted. I am in pain. And I overall, just don't feel good. I am ready to get back to being my happy self again. I could really use some positive news and some cheering up.

I know I look like crap (I feel like crap), but here I am all accessed and waiting.

***Edit***

(Later on in the evening)

I apologize in advance to all my readers who think I am always so happy and optimistic. I am going to use this blog as a release tonight. I am letting it all out.

I am in so much pain I could cry. My fingers are all twice their size. My knees are full of fluid. My ankles feel like they are on fire. I can hardly move. I have taken 6mg of Dilaudid. It is supposed to be one of the stronger pain-killers available- a type of Morphine, and I am still in pain. I have puked 3 times I hurt so bad.

I am not used to taking prescription pain-killers, my tolerance is not all that high, so why aren't they working?

I want to soak in a hot bath. I can't because of this stupid port.

I can't sleep. I am restless. Day two of Prednisone should have given me some sort of relief. My whole body is inflamed.

I start IVs tomorrow. I am praying, hoping, and wishing for them to kill whatever infection is causing this misery.

My lungs feel heavy. I can't stop coughing. I can't stop gagging. I don't want to eat.

Miserable does not even begin to describe how I feel.

I know that I won't feel this way forever. I will do IVs for a few weeks and I hope to be back to normal. For right now, I so desperately just want to fall asleep and wake up when that happens.

I don't want to be on IVs over Thanksgiving. I hate being sick.

I hate spending money on medication, doctor visits, and CF.

I want to Christmas shop, do fun things with my kids.

This sucks.

Tomorrow will be a better day. It has to be.

All my CF friends know what I mean and understand how I feel.

I just want a break from it all. A chance to not have this darn CF haunting me or stepping in to ruin my life at the worst times possible.

I hate being a burden on family. I hate not being in control, especially when it comes to my own body. I just want it all to stop.

And if I was going to hire someone to come into my house and help me out, it wouldn't be a home visiting nurse. It would be someone to clean and cook.

And darn it, while I am complaining, I just want to shop for some new Ugg boots and a coat. (completely unrelated, but I feel like throwing it in the mix)

A make-over would be nice too. And maybe a new purse. But once again, CF has ruined that for me as well. Thank you Bactrim for costing me so much.

Ok, I am done.

I think I need a hug now and maybe a back rub.

NACFC 2010 - An Interview with Dr. Michael Boyle

This video gives SO much hope to those of us living our lives with Cystic Fibrosis. I have the (Double Delta) DDf508 gene mutation.

Ouch. Can't move.

I am going to give a short update because I am not feeling all to well, and warning, it is another venting post.

I have been feeling miserable all weekend. Last night was the kicker. I woke up this morning in extreme pain. I could hardly walk. Every joint in my body was swollen and tender. Ross had to carry my from my bed to the couch. I spent all morning whining and moaning. Prednisone was prescribed and I have some mild relief. Thank you Prednisone. I will take any relief I can get right now, even if you cause me to become constantly hungry, moody, and give me night sweats (at all times during the day). I am heading to clinic tomorrow to see what the next step is. I am thinking more IV antibiotics are inevitable at this point.

I could really use some cheering up right now, oh yeah, and a huge hug would be nice.

SNOW?!

It is officially snowing tonight in Ohio! Ready or not, the cold weather is here...and the snowflakes are a flying.

Caleb and Addy are probably more ready than me! I wonder how much we will wake up too?

...Santa Claus is coming to town, already?!

The BIG TOY catalog came in the mail today. Caleb and Addy were ecstatic! Of course, I had dishes to unload from the dishwasher-again, so I saw it as the PERFECT opportunity to entertain them (and give me a two second breather!). I gave each of them a crayon, and let them circle toys that they want on their wish list for Christmas. I told Caleb he could circle anything he wanted, but could only put a star by 5 of his most favorite toys. (Hey, I need some birthday and Christmas ideas!) I already bought him the Toy Story 3 blu-ray (hiding from him until December 9th!) and we are planning our annual birthday mommy and Caleb date to Build-a-Bear. Birthday is pretty much covered...but, this procrastinating mommy has done NO Christmas shopping yet, and I am on a little bit of a tighter budget this year. So, I really should get my hiney moving.

The plus side of this? Caleb gets to practice making circles, which he desperately needs to perfect (according to his report card...)

His 5 starred items..in no order of importance (How could I ask him to choose a favorite?!):

1. ImagiNext Bigfoot-$85.00

(This is a plastic Gorilla that has over 80 actions and phrases, It comes with a remote...hmmm)

2. Toy Story 3 Ultimate Buzz Lightyear Robot- $119.00

(A 16" tall Buzz that walks, talks and responds to voice commands. Sounds fun to me...but a little pricey, might have to pass it on to Santa!)

3. A Toy Story 3 scooter- $25.00

(self-explanatory, a skate-board with handle bars, and I like the price.)

4. Stinky the Garbage Truck- $45.00

(**this toy actually looks like a blast, may get it for myself!)

5. A guitar- $35

6. (he had a hard time stopping!)... Zhu Zhu pets.

This kid did not circle cheap, but each little star cracked me up! I would have never guessed any of those particular toys, but I am not surprised.

I remember doing this as a child. Of course, I rarely got anything I ever circled (who does?), but what wonderful and fun memories. My brother, sister and I would spend hours drooling over the Toys R' Us and Sears catalogs, initialing everything I could dream of with a CJS...just to be sure that Santa-or mom- wouldn't confuse me wanting something Matt circled! No guns or Lego's for this girly-girl.

Addy's list was a little more simple. According to her scribbles, she likes the whole My little ponies page, Strawberry Shortcake dolls, Barbies, babies, princesses, dollhouses, and pretty much anything that was pink or purple! My kind of girl!

I love seeing the world through the eyes of my kids...so innocent.

The lop-sided stars, the imperfect circles, the huge grins and belly laughs- while scouring over a toy catalog- nothing gets more simple than that. Pure joy.

And I got the dishwasher both un-loaded and loaded, in peace and in under 20 minutes.

More pure joy.

*Thank you Target and Toys R' Us for sending these out early. You will be the perfect baby-sitters during laundry folding, floor scrubbing, and dish doing moments in the Sommers' household for the next week.

Christmas 2009

Caleb-almost 4, Addy-1