Friday, April 27, 2012

Dreams for Olivia & April in a nutshell

We made it through swimming lessons this week without a meltdown from Olivia so that was a huge success. This week she went with Daddy to work and colored at his desk. Olivia had a blast and is still talking about it daily. For the past 2 nights now she's been saying "I don't like it the pool" and "I go to daddy's work" where for the past 2 months all I had been hearing was "It's fun at the pool" so I think her trip to Polaris was a big hit and come our next swimming lessons night, she'll be ready to go back! So this week I am thankful for Daddy and Olivia's bonding time and Landen and my bonding time without any drama at all.

This past weekend, Landen came down with a cold and we immediately amped up our infection control measures the best we could, to no avail as Olivia ended up catching it too. So this week has been extra busy and stressful, dealing with 2 sick and crabby kids and having to squeeze in 1-2 more treatments daily, on top of the 2 we already do every single day, so time has been flying by. Thankfully, this just seems to be a head cold for both children and hasn't slowed Olivia down one bit. She still runs around non-stop and constantly begs to go outside and when we do go outside, she again is running and playing nonstop so I'm thankful that she doesn't feel too bad as she still has a ton of energy - she is a trooper indeed.

This year has definitely been tough with the kids being sick and all the scary things that pop into a CF mother's head about what the effects are from each illness. You'd think with how many times Olivia's been ill this year and how well she's done fighting off each one, I'd be a tad more at ease and feel a little bit more reassured that things will be okay, but I honestly don't think it's ever something I'll get used to or take lightly as you just never know when a "little cold" will turn into something so much worse for her. So with every onset of an illness, I'm more nervous, more anxious and definitely more stressed watching for symptoms that something else may be going on. Thankfully, I have hope, faith, love and one heck of a strong little girl that has been a fighter so far and continues to fight off each illness that heads her way - everyday I pray she continues to do so. So as this cold is slowly passing for Landen & Olivia, I hope it may be the last one for awhile. Landen only has a few more weeks of school and if he can make it without getting something else we should be in the clear because when we can control the situation(s), our kids usually don't get sick so that will be a blessing for the summer months. I'm definitely looking forward to summer, warmer weather and less illness where we can enjoy spending precious time with family and friends again.

Our first big "summer outing" will kick-off next Saturday, May 5th, 2012 with the "Dreams for Olivia" fundraiser in Windom, MN. It will be a day full of activities to benefit the CFF in honor of Team Olivia Oltmans. Beginning with an already full 73-person golf tournament, a silent auction and evening activities, the day/night will most definitely be unforgettable. Hilary over at Enspired is and has been selling washcloths, hair clips/pins and scarves with 100% of the proceeds going to the CFF. I still find myself sitting here completely amazed at what has all been done in just a few short weeks to prepare and pull this entire event together. All the time and energy that Tyann, AJ and Hilary have invested into putting this event on continues to amaze me. I am really looking forward to the event, seeing the support we have for our daughter on our mission to help find a cure for CF and raising money to help us get there.

There are many days I feel very much alone in my "CF world". After all, I am Olivia's primary care taker, beings I am fortunate enough to stay at home with the kids. I do her treatments, I prepare her meals and snacks and beg and fight with her to eat and drink as much as she can with the hopes that she'll gain an ounce or two. I deal with all of the medical, insurance and doctor stuff, I fight for what I feel is best for her, I ask questions when they need to be asked and I do everything I can in my power to raise money to support the CFF as they continue their research for cure. There isn't another person that I know personally who fully gets what I go through daily or who could wear the shoes I do. Jeff would be next in line of course, but beings he must work to support our family, he only sees a portion of what our CF life is really like day after day. Don't get me wrong, I am forever grateful and cannot express my love for him enough for taking on that burden, to be a sole supporter of a family, especially one with CF involved in itself brings a lot of stress - I love you Jeff and thank you for supporting us. So yes, many days I feel alone because no one but Landen, Olivia and I, know what our days are like day in and day out and that can be a hard bite to chew sometimes. On those days when you want to scream and yell and just say to someone "do you know what I mean?" and have them say in all honesty, "yes, I do", I just don't get that luxury. I know we have the most wonderful family and friends who love us, support us and will do anything for us, that I do know. I am so blessed and thankful for all of you whom have done anything and everything we have ever asked or needed and despite the days that feel to me my own and no one elses, I know we will never be alone in our fight for a cure.

People often ask, "is there anything I can do" and usually there isn't much, this life is ours, these are our cards to play, but the one thing that anyone and everyone can always do for us is to donate, spread awareness and raise money for the CFF to help us find a cure for our daughter. So come Saturday, when I see everything that has been done for this event, when I see all the people there offering their support and when I see all the money we have raised, I will feel so very blessed and I will feel full of hope. Jeff, Landen, Olivia and I, live this CF life every single day, it is ours, however, in the fight for a cure, we have a huge team, we have a ton of support and we will never be alone in that. There are so many other families out there who also live a CF life day in and day out and see all the good and bad that CF is. Even though I don't know another family personally, I do follow their journeys, their stories, their joys and sorrows and I know that if I ever needed to ask someone "do you know what I mean?", there are many other CF mom's out there that would say "yes, I do" and in that I do find comfort. So as we are just under a week away from this awesome event to benefit the CFF, I am thankful and proud to be a part of it, I can't wait to share with you all, how much money was raised through this event. Thank you again Tyann, AJ and Hilary for putting this event on and for all the hard work and energy you've put into doing so. Thank you to everyone who's donated, all the golfers and everyone else who is going to be there - we are blessed and sincerely thank you for joining in our fight to help find a cure for our daughter and all those with CF.

April 2012 in Photos

Coloring Easter Eggs


Best Friends Being Silly

Cool new Sunglasses

Landen Hunting for Easter Eggs


Olivia's Easter Egg Hunt


Landen & Grandma Pam
Flying a Kite on a Windy Day

Splashing in the Rain Puddles 

Dress-up Fun with cousin Braelyn

Landen's Bug Hat made at Preschool

Happy 8th Birthday Shelby
(We love you "Sister Ding")

Saturday, April 21, 2012

Note Regarding the Washcloth Fundraiser


**NOTE: 4/21/2012 - 
The Contact Me form on my blog has had issues where I have not received some of the messages regarding the washcloth fundraiser. I apologize for the inconvenience. If you emailed me using the Contact Me form and DID NOT receive a response the same day, I did not receive the message. Please email me again at bm_fiala@hotmail.com with the items you had requested. Even though most items are sold out, let me know which item(s) you had previously requested and we can work to knit you up another set.  Again, sorry to those of you this affected. I appreciate all the support and will work to get you the items you requested in a timely manner.**

Thursday, April 19, 2012

Oh, the joys of it all

Yesterday was Landen's first night of swimming lessons for this year, he was beyond excited that the day was finally here and talked about it all day long. I was excited too as this has always been special "mommy & Landen" time where it's just him and I and he gets that added attention he so deserves but never gets enough of. Olivia of course doesn't miss anything so all day she thought she was going to the pool as well. Ever since our trip to the waterpark w/ Grandma Pam and Grandpa George a month ago she says daily "it's fun at the pool" & "bucket's loud", recalling how much fun she had and reminding us all that the huge dumping splash bucket is indeed loud!

When I told Landen we needed to get our swimsuits on right after supper, Olivia followed him and went to her room looking for her swimsuit as well. When I saw her basket on the floor that she had been digging through looking for her swimsuit, it about broke my heart, knowing that she didn't get to come with us. Needless to say, for all the time her and I are together combined with the fact that she wasn't going to the pool with us, I knew it would be a meltdown when we left. Luckily, Landen and I were able to quietly exit the house while Daddy kept her entertained, so I thought. Jeff called as we were on our way home from the pool after swimming lessons and told us otherwise. Olivia had thrown a fit, was all worked up, wheezing and holding her breath like she does until the biggest wail comes out and you are encouraging her to breath as you can see the tinge of blue around her lips. These fits don't happen often, usually only when I leave without her, but when they do, watch out. I definitely feel and know I am so, so loved but it makes it that much harder for her on occasions when we are apart.

When we got home Olivia warmly welcomed us, "Hi, Wanden, Hi, Mommy" so I figured all was well, proceeded to finish up with snacks, baths and then off to bed for the children. The rest of the night was quiet until a little after 1:00 am when I woke up to Olivia's blood curdling scream, so I ran to her room and noticed she had vomited. She's done this a few times in the past and we and her CF doctors attribute it to CF mucus junk, something acidic that she has recently eaten or the added mucus/drainage during times when she's sick, so I didn't think much of it, just figured it had something to do with her bedtime snack as she's not currently ill. She asked for juice after vomiting so I figured she must not feel too bad if she's willing to drink as I so vividly remember days when I would vomit as a kid and my mom couldn't get me to drink anything. The last thing I wanted to do was put something more into my already unsettled stomach. So we headed downstairs and I got her some juice, put her in her rocking chair to clean up the vomit on the floor and here she starts puking again, and again to the point where Jeff says to me "is it even worth continuing to change sheets/blankets/towels if she's going to keep puking every few minutes"? Realizing I wasn't able to keep up with the cleaning anyway, I cleaned up just enough for her to be comfortable and focused on comforting her, and finding us a "vomit free" area on the floor in her room to get situated and camp out for the rest of the night, armed with a puke bucket and the hope that it might help to prevent some of the laundry and carpet cleaning that surely would ensue the next day. So after vomiting on and off again for the next few hours, around 4:00 am she was finally settled and asleep on her mattress on the floor next to me, thank goodness. After all of that I figured she must have some stomach bug but then I realized that stuff usually comes on fast and we hadn't been anywhere since Tuesday so that was unlikely. Then this morning, when she woke up shortly before 8:00 am all chipper and spunky and back to her sweet normal self, Jeff and I realized that it must have all been caused by her getting so worked up from mommy and Landen leaving. All the crying, added drainage and mucus flowing into her already higher than normal acidic stomach must have been enough to set it off because she is clearly fine this morning, eating, drinking and running around without a care in the world. For this, I am very grateful, the last thing we need is for her to be vomiting sick and losing the precious few ounces she actually has gained in the past month and a half. Clearly, as if I didn't so know already, CF kids are amazing, to be back to her normal self after such a short amount of time, amazes me. Even at 31 years old, I'd still be sulking in bed if that was me instead of her, sick to my stomach all night long!

So today I'm thankful that Olivia feels better, yet it's another one of those "not so fair" days in Landen's eyes. Olivia was getting added attention this morning because she was "sick" and whenever Landen is ill, he feels as if he's getting punished because he spends more time away from Olivia to help ward off the spread of germs, so clearly I too see it as not fair. Oh the joys of CF.

Now I just need to figure out how to prevent this from reoccurring over the next 5 weeks during swimming lessons so that I can still spend my special time with Landen without having a repeat of last night's events.

Friday, April 13, 2012

When you least expect it . . .

I know I've heard time and time again about people surprising you when you least expect it and I'm realizing that over the past 2 weeks this couldn't be more true. In less than 2 weeks some wonderful people have re-entered into my life and come up with a wonderful day of events planned to raise money for the CFF in honor of Olivia that we will put toward Team Olivia Oltmans' Great Strides walk on May 20th. I am without words to express how I feel about this, aside from saying it is pure amazing! Each day I process this information a little further, I feel more and more blessed, I truly do. After many, many years, the fact that these wonderful people would be touched enough by Olivia's story to take action, do something and raise money for the CFF is just pure humbling. I'll never be able to thank Tyann, AJ, Hilary and so many others enough for what they are doing, because to me, it's so much more than putting on an event for the Cystic Fibrosis Foundation, it's so much more than a fun day filled with wonderful activities to support a great cause that's near and dear to my heart. To me, these people are taking action to save my daughter's live. How do I ever express my thanks for that? I Am Blessed.

2-1/2 years ago, I vividly remember sitting in Children's Hospital in Olivia's quiet, stale and dark NICU room as she had recently returned from surgery and we were processing the new information that she likely had Cystic Fibrosis. I remember looking at my tiny baby in an isolette, breathing with a ventilator and hardly recognizable behind all the tubes, wires and machines and trying to think of something positive that could come of this shock I was just previously faced with. I must have been a glass-half-full kind of gal back then, (I'll get back there, all in do time) and I looked over at Jeff and I said "we are going to fight this, Olivia will do amazing things, look at all she's overcome in just a few short days" and I ended it by saying "and how amazing will it be if we can be a part of the day when they find a cure". I believed it then when I said it, and I believe it now. When a cure is found and announced, I won't be a person watching it on the news or hearing about it through the media and thinking with a passing glance, "oh that is wonderful". For me it will be life changing and my dream will have come true. There is nothing I want more in this world than a cure for CF for Olivia and all those who live with this disease. So here's to raising more money for the CFF to get us one step closer to that cure. Thank you Tyann Marcy, AJ Smith & Hilary Mathis for putting on this event, for choosing to help my dream come true and for choosing to help me save Olivia.

Saturday, May 5th 2012
Golf Tournament at the Windom Country Club
Registration @ 2:00 pm
Tee-Off @ 3:00 pm
Evening Activities at the Country Club include:
 A DJ from 8 to midnight, a silent auction, food and so much more. 
*Silent Auction Items are still needed*

Hilary Mathis of  Enspired a local Gift Shop in Windom, MN will be selling some of the handmade items I've created as a fundraiser to benefit the CFF. Be sure to stop into Enspired on Saturday, May 5th to see what she has. 

For more information on donating to the Silent Auction or for information regarding the event, contact me and I'll get you in contact with the individual whom can assist you further. 
Event details can also be found on the Citizen on-line website.



Monday, April 9, 2012

Robbing Peter to Pay Paul

Ugh. The past few days have been hard. Landen has been feeling glum lately, one look at him and you can tell not to mention the things he says which reinforce it. I'm sure a lot of it has to do with the attention he craves and doesn't get as often as he'd like combined with the fact that he's 4 going on 5 and is at a tough age, which still doesn't make it any easier to deal with. I also believe that the life we have been leading after accepting CF into it 2.5 years ago is finally coming to a head. After Olivia was born and diagnosed with CF, we really just shut out the outside world as much as we could, partially due to shock and not knowing what else to do at the time but also in her best interest, to keep her healthy, to keep germs and sicknesses out and to do all we could and had control over with a disease that you can't control much with, but most of all to give her the best chance at many, many tomorrows. Doing all that, we chose not to go to large family gatherings, playdates, busy places with crowds of people and so, so much more, leading to a very sheltered life. Many days in a row would pass where the kids and I didn't leave the house, or go outside, we were sheltered and even though it's a little bit less now, we still are.

Now we are paying the price. Even with Landen attending preschool this year and getting out of the house and around other people and kids, he still is so very shy and quiet and it takes him a very long time to warm up to others if at all, when we are around them. Preschool to him is a place where he gets sick and then Olivia gets sick and everyone is on edge. It's not a place about fun and friends like it should be. I blame myself for this and I feel terrible. I seriously feel that I am robbing Peter to pay Paul, I'm sacrificing many things that a typical 4 year old should get to do in order to keep Olivia as healthy as possible - but all at what cost? Jeff and I go back and forth on this subject all the time and neither of us is ever right, there is no right answer - it just sucks. Sacrifices are a part of life and especially parenthood, that is a given, but really, one should not choose to have to sacrifice social interaction but yet we did and do because there are times when Landen or Olivia have become sick after being at a function with other people. I hate that I have to make daily choices on what not to do and where not to go, sacrificing important life events for my son and daughter in order to protect Olivia and keep her healthy. It is my choice, I know that but is it the right thing to do? I don't know now and I don't know that I ever will know what the right answer is. I don't know if or what things I should change or if I can, I just plain don't know. With CF there are limits already and I hate that I am limiting our lives more because of it but I just don't know where to draw the line and what things to let go. I can't tell you how I will feel the day Olivia comes down with a lung infection that causes irreversible damage after being somewhere that I could have chosen not to be. I know it's inevitable and will happen, people get sick, but being a glass half empty sort of person, it's how I'm programmed and thus why I choose to do or not do the things that I do. There are so many things I wish I could change, there are so many things I wish we could do. So many days I wish we didn't have to live this sheltered life. So many days I wish that I could go to a store with the kids and not worry about all the people coughing, sneezing and hacking around us. So many days I wish we too could go to the family gatherings we so often miss out on and when we do go, I wish we could relax and not be on edge that maybe just maybe someone might be sick and my kids will come down with something in the following days. So many days I wish I wasn't constantly worrying about germs, illnesses and this beast called CF. So many days I wish that when we were around other people it would be fun and carefree. CF, germs, illnesses, life expectancy, transplants, irreversible lung damage, weight issues, g-tube and so much more are forever engrained in my mind, I'll never think carefree again like I used to. So many days, I wish we could be free from CF and the daily worry of it all. Every single day, I wish for a cure.

I know someday it'll get better, someday Olivia will tell us what she wants to do and we won't be able to say no to going places and seeing people. But for now, it's just hard. I hope Landen gets out of this glum stage soon. I hope Jeff and I can find ways to make this sweet, sensitive, take-everything-to-heart little boy of ours feel so special again. How do I make a 4 year old understand why we do or don't do things? How do I tell him we do things to keep Olivia healthy and have him understand that we aren't choosing her over him? How do I again make him feel that he's as important to us as she is? Right now I don't know the answer, but I hope I can figure it out, because right now it just breaks my heart. I want to see him interact with family and friends without being afraid he will get sick. I want him to want to play with other kids and not be so shy or afraid. I want him to enjoy school. I want him to be happy. I want to find a happy medium where we can be sociable with other people and still keep Olivia healthy. I so much more than anything want a cure for CF so that the answer to all these questions will be solved for me, until then, I'll keep muddling through and do what I can to protect both of my children equally as best I can. For now that'll have to be the answer to my questions, to do the best I can for both Landen and Olivia and accept the choices I make. At least summer is coming and that usually means less illnesses and the time of year where we reintegrate into social events and get to be around family and friends again. Hopefully this will help Landen as well.

Thursday, April 5, 2012

Wow!

Words can't even begin to express all the emotions that are flying around the house today. Ever since Olivia's diagnosis of CF when I asked the doctor "What is it?", my goal has been to spread awareness with the hopes of raising money to support the Cystic Fibrosis Foundation on their quest for a cure. Jeff and I are pretty quiet people, we are homebodies and don't come from all that large of families so I knew this would be a challenge, to touch people and get the word out there about CF, what it is, how it affects those whom have it as well as their brothers, sisters, moms, dads, friends and other family. So I started with Olivia's CaringBridge site and this blog documenting Olivia's journey with CF to inform our family and friends about what CF is, what daily life is like and to promote awareness for events we participate in. Then, after seeing videos about CF I decided to make one of my own, featuring our family, and our all star, Olivia. I've made 2 so far with my second one being my favorite. I posted her new video on this blog and on Monday sent it out in an email to family and friends to watch, share, pass on and inform them about our upcoming Great Strides event. My sister Amber whom has a Facebook account, posted the video on her page encouraging others to watch, learn, inform themselves and take action by making a difference. And now all I really can say is WOW! In just 2 short days, our hometown of Windom, MN has some very gracious people who watched the video, were touched enough by Olivia's story that they took action and have come up with ways to help promote awareness and bring in donations for the CFF and Team Olivia Oltmans through 2 wonderful events, all occurring in just 1 month! I can't even begin to express how touched and humbled I feel by the overwhelming amount of support we are receiving for the CFF. With 2012 already being such an amazing year for us in the CF community with the release of Kalydeco, I know that it is now more than ever so important to keep up the momentum to fund the research to find a cure for all those with CF. I've heard buzz about drugs treating the underlying cause for 90% of those with CF by 2020. This to me is bittersweet, even though 2020 isn't that far away, it is still 8 years away and with a disease like CF where you never know what tomorrow will bring, 8 more years seems like a lifetime so all of this support that we are receiving now when it's so important to keep things going to fund the CFF just humbles me, I can't even begin to express my gratitude. So thanks to Tyann Marcy, AJ Smith and Hilary Mathis a fundraiser, "Dreams for Olivia" is being planned in Windom, MN on Saturday, May 5th, 2012. These wonderful souls are hosting a golf tournament and Hilary will be featuring some of my knitted washcloths in her store Enspired that day as well for people to come in and purchase with sales going to the CFF. For information about the golf event fundraiser you can contact Tyann Marcy at tyann.marcy.pbvl@statefarm.com or Hilary Mathis at enspired@live.com.

More details to come as I receive them.


Monday, April 2, 2012

Knitting Fundraiser - HERE IT IS!



Knitting for the Love of Olivia - It's Here!!! We are done and the washcloths are ready for purchase. To purchase click on the "Knitting Fundraiser-BUY HERE" Tab at the top of the blog or CLICK HERE to view the items for sale. Remember 100% of sales goes directly to the CFF, Team Olivia Oltmans for our 2012 Great Strides event. Thank you for supporting Olivia.