Sunday, October 28, 2012

Halloween

Halloween is by far one of my most favorite times of year mostly because the kids love it so much but truth be told, I have just as much fun decorating the house for Halloween too. Saturday night we had a Halloween party, we all dressed up in costumes and I cooked up some fun Halloween treats and snacks for supper. I know it was a hit because as we were eating Olivia looked at me and said, "This is awesome!", and in that moment I knew that all the time it took to make the treats for the mere 10-15 minutes it took for us to scarf them down was all worth it. I'm sure it'll be a memory the kids will talk about for quite some time and a Halloween festivity we continue around our house for years to come.

Landen is loving his x-ray skeleton costume and plays the part well, running around the house trying to scare the rest of us. Olivia chose to be a black cat this year and had so much fun being dressed up as a black kitty that she cried when I washed the nose and whiskers off her face last night so first thing this morning I had to draw a nose and whiskers back on. The girl loves her kitties! Jeff chose to be a motorcyclist and I was a Mommy Fairy.

I can't wait for Halloween night when the kids will get the joy of dressing up again to go trick-or-treating. Of course we'll have pumpkin carving this week too. So much fun!




Our Halloween supper. Halloweenies, Monster Mouths, Mummy Pizzas, Monster Fingers and Skeleton Bones that I made up, topped off with store bought cupcakes for dessert. 





Monday, October 15, 2012

Urgent Care/ER Visit

I hate that CF is a "rare disease" one that so many people and professionals don't know enough about. The looks of complete confusion and lack of understanding that I get when I talk about it are painful. Of course every word about CF that comes out of my mouth, I understand, I get, and to try to tell people who don't is frustrating, to say the least. To me it's not a rare disease, I know what CF is. It is the disease my daughter has, the disease that is trying to rob her of life, the disease her and I spend every single day battling to keep her as healthy as we can and here with us for as long as we can. CF sucks, I wish there was a cure, I wish it would all just go away.

Last weekend Landen came down with a cold. A week later his is still lingering. Despite all Jeff and my best efforts to protect Olivia from it last weekend, she was exposed before Landen even had symptoms and came down with it a few days later. So it goes and has so many times before, but it's still maddening, trying so hard to protect her to no avail. Landen's cold was just that, a cold. Olivia again, hasn't done as well with this one.

This past weekend we were visiting Grandma and Grandpa, 3 plus hours away from home. Saturday night Olivia developed a dry, hacking cough in the middle of the night. It became persistent enough that Jeff and I got up with her at 4:00 am to do her vest and nebulizer to help clear out the junk. Once she began her treatments it cleared the mucus and she coughed so hard she vomited it up a few times, at least she got it out. After her treatment and for the remainder of the morning once I got her back to sleep, the cough continued. After breakfast we packed up and high-tailed it back home. Olivia's cough remained and later in the afternoon she began to complain that her ear was hurting. 

I never run her into the doctor, unless it is scheduled or absolutely necessary and in the past 3 years I have never had to take her to urgent care or the ER. I avoid those places for as long as I can because obviously those places are crawling with germs. Beings it was a Sunday evening I figured I should at least call the on-call Pulmonologist from CF clinic to make sure they didn't want her to be seen since the cough had been increasing for near 24 hours and the crying of ear pain had been going on for a few. 

After speaking with the on-call doctor, she advised me to take her to urgent care to get her ears and lungs checked and go from there. I figured the visit should have been simple enough, we were essentially taking her in to see if she had an ear infection, make sure her lungs were clear and prescribe her a antibiotic if needed for the ear as advised by the Pulmonologist. We checked into urgent care first and after this and that they said her ear was red and would need to be treated but because Olivia has CF the physicians assistant in urgent care just wasn't sure if that was enough given her other symptoms. She then passed us off to ER, again because Olivia has CF. 

Thankfully, once we were there we got a very good doctor. He and I spoke at length about her symptoms and I said given the fact that both he and the PA in urgent care said her lungs sounded good despite the cough that it didn't seem necessary to do a chest x-ray, he agreed and said he'd treat her the same with or without the x-ray so we went without. In the end he decided to treat the ear infection with a course of Bactrim for 10 days. 

It was a whole lot of run around for almost 3 hours for an ear infection. Fine that they put her on an antibiotic to treat the ear as he deemed necessary. Frustrating that because people don't understand CF enough that they jump through all these different hoops and pass you from one place to the other "just to be sure". I'm certainly not downplaying the severity of CF at all, it sucks and I know it wreaks havoc and despite a person looking healthy on the outside, with CF they aren't, I get it. But honestly, an ear infection is an ear infection regardless of CF or not. To talk to someone who is supposed to be helping your daughter whom clearly doesn't understand all that CF is, is maddening. Again, the reason I have successfully avoided going to the ER and urgent care for the past 3 years. The same reason I try to avoid doctors anywhere other than the CF clinic where people get CF. The same reasons on many days, I wish we didn't live so far away from the CF clinic and hospital. 

Last night Olivia's cough was still persistent despite continuing treatments every 5 hours but this morning she is doing better aside from complaining about her ear which the antibiotic should help alleviate soon. Still makes me question if I should have taken her in at all or if things would have cleared up on their own. There probably isn't a clear answer either way, what's right, what's wrong, did I make the right choice by taking her in . . . ?  Who knows. Being a parent is difficult, being a parent of a child with a chronic illness is more-so. Many decisions I make regarding Olivia's care I question with no clear answer. At least she is doing better this morning. Hopefully it all clears up in the next few days. Hopefully we can catch a break and Landen doesn't bring more germs home from preschool for a little while at least. Hopefully more professionals I encounter will one day understand what CF is and won't look at me with faces full of pity and like I have two heads when I talk. Hopefully, someday, there is a cure. 


 

Tuesday, October 9, 2012

Fall 2012

This fall we have had some absolutely beautiful days, the kind where you can be outside in a sweatshirt, the sun is shining, the winds aren't blowing you over and to look around and see all the beautiful changing fall colors, those fall days are awesome. I wish there were more of those than the cold, dreary, windy, icky ones we've been having lately.

We've taken advantage of the gorgeous fall days we have had and the kids have enjoyed some fun activities. My favorite fall activity is going to the pumpkin patch. It's a tradition we started when Landen was born and one I will continue to do for as long as I can convince the kids to come with me! The kids have also enjoyed many weekend trips this fall to what I honestly believe is their most favorite place on earth - Grandma Pam and Grandpa George's house. They absolutely love going there and get so excited whenever we tell them we are going to visit grandma and grandpa. They love the farm activities they can do at their house, the hot tub, the trampoline, exploring down by the big barn and all the other numerous fun things Grandma Pam always has up her sleeve for the kids to do. Olivia especially loves getting to see the kitties and their cute little puppy Muffy.

This past weekend Olivia was able to celebrate her 3rd birthday with a Hello Kitty party with my side of the family. She had a lot fun and loved everything Hello Kitty. As this time of year also gives way to so many germs, it's always difficult to get everyone together. We surely missed aunt Darci and Braelyn who weren't able to come because of illness but were very thankful the Johnson family and Grandma Dianne could come to help Olivia's day be extra special. Because sicknesses are always prevalent this time of year, Jeff and I have seriously talked about celebrating Olivia's birthday in the summer with my side of the family like we do with his side rather than around her actual birthday so that everyone can make it, thanks CF. Anyway . . . here are some fun fall photos from fall 2012. Enjoy.

Olivia and Landen enjoyed a ride with Grandpa George in the combine. I used to love combine rides when I was a little girl and still remember doing so with my grandpa. I am thankful the kids have this opportunity.

Olivia had the perfect view from atop Grandpa's cooler. This combine is so spacious that Daddy, Landen, Olivia and Grandpa all got to ride at the same time. They said I could have fit in too but I chose to stay back and capture the memories in photographs.

Enjoying a moonlit evening of star gazing from the hot tub at grandpa and grandpa's. This was Olivia's first time in a hot tub and she loved it.

Olivia's second favorite thing to do at grandma and grandpa's - jumping on the trampoline.

Grandma and Landen took a hike down to the barn to gather a bale of hay for fall decorating. It was over 80 degrees this fall day, Landen was hot and thirsty at the end of this adventure. 

Grandma Pam and I took Landen and Olivia to the farmer's market where they each picked out a pumpkin and decorated it. Their finished pumpkins are fall decor atop the hay bale that Landen and grandma fetched from the barn.  

Olivia, Landen and Grandma enjoyed a game of Candy Land with a bag full of treats. This is Landen's favorite way to play this game and I believe it was a close race between Olivia and Landen but Landen pulled through at the end to win the game.

The happy birthday girl on birthday morning.

On Olivia's birthday we took our trip to the pumpkin patch. Olivia is trying to pull daddy in the cart on our search to locate our perfect pumpkins. Not working too well!

Landen was all smiles when he found his pumpkin and did a fine job of posing for a photo on his pumpkin of choice.

Olivia's found her perfect pumpkin with a little help from daddy.

The pumpkin patch has some fun things set up for photo ops, here we are next to the haunted house. 

This one we thought was pretty cute and Landen was all excited to climb in the coffin.
 
We ended Olivia's birthday evening with presents and the putting together of her new big girl bed. For over a month I had been asking her what she wanted for her birthday and she'd tell me every time "a Hello Kitty bed", so we got her a big girl bed and I re-decorated her room in Hello Kitty. She loves it. 

Olivia's 3rd Hello Kitty Birthday party.

Eating pizza at the party.

Olivia, Landen and their cousins, Matthew, Emma and Mason at the party.

Olivia is getting ready for the party game, "Pin the Bow on Hello Kitty".

The birthday cake.

Happy 3rd Birthday Olivia!













Wednesday, October 3, 2012

37%

Today Olivia had her 3 year old well check with her pediatrician. We of course are always concerned with her weight and watch it very closely and usually end up cringing the moment she gets on the scale for her minimal weight gain or worse yet, weight loss. Not today.

Olivia has been on periactin to increase her appetite for just over a month now and I am beyond thrilled and filled with emotion that it is actually working. I've noticed over the past month that she eats better and she will on occasion actually tell me "I'm starving, I want a snack", which is music to my ears, regardless of how much work and fight goes into getting her to eat enough of her snacks and meals. On any given day I would rather sit with her for hours on end to get her to eat enough to gain weight by mouth that is for certain but even so it still is draining, wearing and emotionally challenging at times. However, at least it is paying off with the help of the periactin. In just 5 weeks, Olivia has gained 2 lbs. Her weight today was in the 37th percentile. This is so huge for her, she has been in the 10th percentile or less for weight since July of 2012, for over 2 full years. So today this news was the greatest news ever. I am beyond thrilled. With hope, perseverance, prayers and the help of periactin we have succeeded in our fight to get her to gain weight. This is awesome and was cause for celebration here at our house today. A good day indeed.

I know we are gaining ground but our fight is not nor will it ever be over, there will always be setbacks. Olivia has always struggled with weight and we will continue to have to work very hard to get her to continue to gain with the help of the periactin. I can only continue to pray that it keeps on working and her appetite keeps up so that she can get enough calories each day to continue to gain. But as it goes with CF we take things one day at a time so today I am thrilled and happy for Olivia that she has gained weight. We still have a long ways to go to play "catch up" to get where she needs to be for her weight and I know tomorrow will be another day full of hard work and more than likely some struggles to get her to eat enough but for the rest of the night I'm going to enjoy a job well done and face the challenges of tomorrow as they come.

Monday, October 1, 2012

Happy 3rd Birthday Olivia!

To even begin to explain how I feel that my baby girl is now 3 years old seems near impossible. I'm filled with a mixed array of emotions. Terribly sad that 3 years have gone by in the blink of an eye and extremely happy that she is growing up and has been relatively healthy considering all things for these past 3 years. Over the past 3 years our lives have been filled with many ups and downs, whirlwinds and life changing events that to put it all into words just wouldn't do it justice. Olivia has grown up so much over the past 3 years that it just continues to amaze me. She has turned into such a big girl and I am extremely proud. To know where her journey began 3 years ago and who she has matured into today is remarkable. She is an amazing little girl, full of life and love and independence. She is a true joy.

3 years ago our lives changed when we welcomed a daughter into our family with loving and open arms. A few days later our lives changed again when she was ripped out of our arms and hospitalized to undergo surgery to later be diagnosed with cystic fibrosis. There were some very dark days back then and when I see where she is today and where we are as a family I'm amazed. Things were so foreign and scary and I had no idea how to climb out of the dark hole I was in. I'm pretty sure during those first few weeks I hated everything and everyone because it just wasn't fair and such a wonderful joyous time when I should have been bonding with my daughter was instead spent in the sterile, quietness of a hospital room praying for her recovery and waiting for the day when I could hold her again free of wires and tubes. Ugh.

We've all grown up a lot in the past 3 years there is no doubt. So as much as I can't explain exactly how I feel on Olivia's 3rd birthday today, what I do know is that these past 3 years have been blessed and I would not trade them for anything. Everyday I pray for a cure and everyday if I could, I would wish CF away in an instance and everyday I hate this beast that is CF that wants to rip the life away from my daughter. Birthdays are nothing to take for granted, it's a special time to celebrate the gift of life and cherish the years had and pray for another year to come. So today most of all I feel . . . happy. I also feel blessed. I can't say that last year at this time I could say I felt blessed but I have grown a lot in a year. I have hope and I have faith and I know that God is beside us, walking along with us in this journey and carrying me through the days where I feel too weak to go it alone. Today and every single day, I feel honored, blessed and loved. I feel all these things not only because I have a wonderful daughter, son, husband and family but also because I am and do feel extremely honored that God thought that I was a strong enough mother to care for Olivia, love her like she deserves to be loved and do everything in my power to fight for her life every single day against cf. I feel so blessed that God knew that Olivia was meant to be my daughter. As much as I hate CF, the one thing okay about it, I can't force myself to type good there, so the one thing okay about it, is that it has brought my family closer together, it has made us appreciate all the small things and the big things so much more, it has made us never take a single day we have here on this earth for granted but most of all as I have climbed out of my dark hole these past 3 years and accepted and cherished my life, it has renewed my faith in God. So yes, today of all days I am happy and I can honestly say I love my life, it is not easy, our journey is full of bumps along the way but I wouldn't trade it for anything, Olivia has changed our lives for the better and I am so proud to be her mother. So today, Happy 3rd Birthday Olivia, I love you so much!

October 1, 2009
2010
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2012