The Mitten 2/24

Please bear with me as I try to update throughout the day - I hope to have six new posts by the end of the day (and because I'm far behind there will probably be a lot of pictures and not many words!)...

Peyton's class had a Reader's Theatre performance of The Mitten. Peyton was a speaker and was very entertaining. One of these days I'm going to figure out putting video off the camcorder (I can do it if it's a video off my phone or Flip but haven't attempted the camcorder). The entire class did a wonderful job and we are thankful for a great teacher that tackled this extra activity for the students.

They celebrated the performance with Popsicles and my girls are all about the banana flavor!

Because People Love Lists

(According to Christy) :)

Other things in addition to blogging that I have NOT done.

1. RSVPd for Peyton's classmates birthday party until the day of.
2. Remember what day it is...because when I did RSVP to that party, and said "Peyton isn't going to be able to make it to the party today", the Mom said - "The party is tomorrow".
3. Attended Activity Night. I remembered this when Peyton went to bed. She remembered and started crying. (I'm going to try to make up for this one by going on Peyton's field trip where I can take pictures to blog and then not get around to it).
4. Let our friend's dog Harley out when they were gone for the day. (He was fine, and we remembered today).

Would you believe me if I had scheduled to blog from 2-3a.m. this morning but at 2, I had to Spring Forward to 3 and lost that hour of blog time! (Hey, I'm trying to come up with any excuse I can!).

Someday this house will be all finished and my mind will not be in a hundred different places...

You Know You've Been A Bad Blogger When...

...friends e-mail you to make sure you are okay because you haven't updated your blog in so long.

...you are at the bottom of fellow blogger's blogrolls (at least the ones in order of most recent posts).

...you can't even remember everything you need to blog about.

...you make it a goal to update all three of your blogs and you don't even make an attempt.

...when you do attempt to update (just) one of your blogs you just type a lame list.

Monday (Just Not Today)

Last Monday the girls were out of school so we went down to visit my Daddy. It had been a very long time since we had seen him...I think we've only seen him for about five minutes since last July. Mackenzie had spent the night with Emily and I got the call when I was heading to pick her up "Can Emily come with us?" Of course! Valentine's Day Emily and family got a new addition - little Samson. He is the cutest thing!
When we got to FS, we ate at The Green Papaya with Dad and Neal (my youngest brother). It was YUMMY!

We stopped to see Mom and Ernie for a short visit before we headed home.

Soon

Soon I will blog again...It's just been a little crazy with the Wine Opener and a few things we've been doing for the house (all day trip to Springfield to pick up flooring and a range). But, I have a few things to blog about and plan to do it in the next day or so.

I did want to share that the Wine Opener for the CFF was fantastic! Latest word is that we raised $50,000!! A GREAT BIG thank you to everyone that helped plan and/or supported this event!

Last Week

I'm so far behind in posting!! So, this will be quite a bit from our past week (mainly from the weekend). Friday night Jason and I took Mackenzie out to eat at Guido's while Peyton went to KK's house for a sleepover.

Above - Anna, KK, Tyler Ann and Peyton.

Saturday after we picked Peyton up we ran a few errands for the house - looking at gas logs, cabinet knobs & drawer pulls and the list goes on and on. Will this house ever be finished? When will the decisions be over? Friday I picked up a paint fandex (fan deck?) - thinking it was going to fun to pick out paint colors. Nope, a little overwhelming actually. For lunch we ate at Jason's FAVORITE - Smokin' Joe's and stopped for ice cream at the HiDHo.

After all that eating we were heading home and passed a furniture store that was going out of business (and I'm so sad about this because it was a great one with things I loved) so we stopped to look and ended up finding bar stools for the island when we get in the house. When we got home we rested a little, Jason took the girls for a little batting practice then Mackenzie came home to get ready to babysit Kendall and Drew.

While Mackenzie was babysitting, Jason took Peyton on a little date (I stayed home to be close to Mackenzie in case of an emergency). They ate by candlelight at Chick fil A. So cute - look at that little rose in the cow's hand! Afterwards they went to Chuck E Cheese.

Peyton was out of school all last week so she had her Valentine's Day Party on February 6.

Here is Peyton one morning of her break running errands with me in her pajamas after we dropped Mackenzie off at school.

Go Fish!

Peyton's 2nd Grade Musical was last night. They performed 'Go Fish' - and Peyton was a Shark (she was also the understudy to the Tiger Shark). They performed Oceans of Fun, We're Sharks, Commotion in the Ocean, and Roundup Under the Sea.

Bailey, Mackenzie & Madison. (Little brother entertainment provided by Sam & Blake).

Leighton

The Harpers got word last night that a heart for baby Leighton was on its way. Please keep Leighton and his family in your hearts, thoughts and prayers today. For updates, you can click on the "A Heart for Leighton" box to the right, it will take you to their CaringBridge site.

Peekaboo Article

Well, the February edition of Peekaboo has been delivered to local businesses with the article I wrote on Mackenzie and CF. I had a few friends already tell me they've read it (and learned more about CF). I also sold a few tickets directly because of the article. SO, even though I did not enjoy writing the article (I am not a writer!), I'm glad I did it.

Living with Cystic Fibrosis

Looking at Mackenzie you would probably never know she is living with a disease. Yet her body is in a constant battle. Some nights, when Mackenzie has an increased cough, I lay awake listening to her. The worries that I had when we first learned what cystic fibrosis was and what it meant for Mackenzie floods my thoughts and I wonder what irreversible damage is being caused to her lungs.

When my daughter, Mackenzie, was born she became one of 30,000. There are 30,000 children and young adults living in the United States with cystic fibrosis. Cystic fibrosis is a genetic disease that causes the body to produce thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections. It also obstructs the pancreas from helping the body to break down and absorb food.

When Mackenzie was born, she had a bowel obstruction and was flown by Angel One to Arkansas Children’s Hospital. She received her diagnosis at just four days old. We were devastated. We had heard of cystic fibrosis but really didn’t know what it was. After her diagnosis we went through several stages – including our own type of mourning. It wasn’t that we had lost a child, it was that we lost the life that we thought we were going to have.
We’ve spent the past eleven years tweaking her care as needed. Currently Mackenzie spends two hours a day doing chest physical therapy - treatments to keep her lungs as clear and healthy as she can. She does this by wearing a vest that vibrates to loosen the mucus and inhaling different medications using nebulizers. She also takes enzymes to help with her digestion. Four times a year she has an appointment with a fantastic pulmonary team at Arkansas Children’s Hospital. Her wonderful doctor, Dr. Robert Warren, encourages her to participate in physical activity to act as additional chest physical therapy and to not suppress her cough (coughing is very important for CF patients, but they sometimes suppress it to not draw attention to themselves). He also reinforces the importance of her nutrition. CF patients with 50% Body Mass Index have been shown to have better lung function but the problems with digestion mean she needs many more calories per day than most kids to achieve this and to grow. Mackenzie also is on rounds of antibiotics to battle bugs in her lungs. In our case, most of the time we are fighting staph.

Cystic fibrosis is not the same for every patient. Gene mutations, severity, and medications vary from patient to patient. Sixty years ago few children with cystic fibrosis lived to the age of five. When Mackenzie was born the average median age of survival was 31 and today it is 37. It is such a great improvement, but still a heartbreaking number for any parent.

We often joke that doing Mackenzie’s treatments is like brushing teeth, something we’ve been doing for so long we don’t have to think about too much. At four days old we were feeding her enzymes sprinkled on applesauce baby food with a spoon and “bopping” her for her chest physical therapy. I want to shout from the rooftops how proud I am of her for everything she does. I know she doesn’t want to wake up an hour earlier than her friends, spend two hours a day hooked up to tubes and take 30 pills a day – but she does it and almost always without complaining! On the rare occasions she does complain, it’s because treatment time is interrupting play time with her sister or her friends. I am so thankful for Mackenzie’s friends and Peyton – they are all so supportive and helpful. They make her feel good about her vest by thinking it’s so fun to put it on and vibrate, they help her remember her pills, and they don’t mind when she’s coughing.

I often wonder when Mackenzie sees her first star or before she blows out the candles on her cake if she wishes for puppies… a cell phone… clothes… or does she wish to not have cystic fibrosis. If by chance she is wishing to not have CF, there are a lot of people working on making that wish come true. I expect Mackenzie – and all the CF children I’ve met along the way – to live a long full life. Family, friends and strangers help us every year to raise funds that will make sure this happens. Not only does this research help to extend Mackenzie’s life but it also helps improve the quality of her life. Jason and I are fortunate to have very supportive friends – they bring us dinner after a hospital stay, they participate in fundraisers, and they listen to me when I need to vent. I’ve also met other CF parents that I now call my friends. We all work together to raise awareness and funds to keep increasing that average median age of survival and our children’s quality of life. All the while we work to fulfill the hope to grant my wishes — a cure for cystic fibrosis.

Ice-Land Day Two

Day two for ice and it is so beautiful. I just wish it weren't causing so much havoc for so many people. They've already cancelled school for us tomorrow - I'm wondering if we'll even have it on Friday. I'm just glad they let us know already - they normally like to wait to tell us until the last minute.

I'm starting to notice something in all the sledding pictures - little sister doing all the pulling while big sister kicks back. They had to come in a few times for hot chocolate breaks.

Our power has stayed on and we feel very fortunate for that since so many are still without. Last night blown transformers were lighting up the sky and today all the ice is falling off the power lines. I was without internet this morning and it is so sad how hard that was. I've already started the soup for dinner (hooray!), glad I hit Walmart before all this!

Ice Day

Horrible ice today! This is what it looked like on the blades of grass and trees this morning - and it only got worse.
At one point today, I heard kids playing outside and went to look out the windows to see what crazy neighbor kids were out playing. Those crazy kids were MINE! They spent a while out there playing in the ice. Sledding (pulling each other around) and eating "Popsicles".

After they played outside for a while, they came in and we lost power! It was off for a few hours - we got a couple of games of Monopoly Junior in and started getting all the candles ready and the power came back on. So now we're showered and fed and Mackenzie is doing her treatment in case it goes out again. We are lucky to have it now as a lot of our friends are still without and have been for a long time. No school again tomorrow.

Weekend Recap

We are iced in! I'm excited for the girls to be home but I'm really hoping we don't lose electricity! Over the weekend Mackenzie didn't feel well on Saturday so we stayed home (we had planned to go visit my Dad but hopefully we'll get to do that next weekend - and celebrate the Chinese New Year). Sunday Mackenzie was back to normal and we went to Tara's to celebrate Cadence's 2nd Birthday. We love this birthday girl!
Here Cadence is opening the gift from us (My First Purse) with Molly and Taylor.

Cadence also got a vacuum cleaner and I got to witness Mason's love of them first hand. So cute! Peyton got one of those fun sticky things that flip down the window (I have no idea what they are called). She also got a couple of things that she is going to put in her treasure box for her friends...this cracks me up. She keeps a couple of bins of party favor type things so when she has friends over they can pick a prize.

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Great news - Mackenzie is up to 76 pounds! So she's gained about 2 and a half pounds this month. Amazing what a small change in meds will do.

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Also - Jason came home Sunday! He had been traveling all week. He left last Monday, traveling for work to Michigan. He came home Friday - for two hours - then left for a fun trip. We're glad to have him home!

On A Roll

Peyton had her second awards ceremony yesterday and I was a few minutes late. This house building stuff cuts into everything - we had to miss Mackenzie's entire ceremony last week when it was rescheduled due to the snow day and we already had plans to meet and pick out a few things. Peyton was on the A Honor Roll and got certificates for Colton's, Chili's, and Chick Fil A (so, those will go in the drawer and I'll find them to use after they expire!). The big hit was the certificate for Perfect Attendance which was for Cold Stone. She didn't get that one, I think one day I checked her out a little early, we don't really aim for perfect attendance but both girls very rarely miss school. Especially Peyton who LOVES school and is even disappointed when we are out for a break.
Peyton didn't mind that I was late - afterwards she said "perfect timing" joking with me (because I had just missed her going up on stage), I said "I know, just in time for you to all turn around and thank your parents".

Great job Peyton!

Happy Birthday Cadence & Article Photos

Sweet little Cadence is getting so big! The girls and I met Tara and Cadence at the Marketplace for dinner. Cadence turned 2 today and she is so adorable! We will celebrate with her more this weekend.
Peyton shared her fruit and Mackenzie shared her fries - that's a lot of food for a little girl!

After school I needed to get a few pictures of Mackenzie for the article I wrote on her and CF for Peekaboo. I had submitted a few others but wanted to get some that were more current, I have no idea what they'll use.

Aww Shucks!

It's been so nice over the past couple of days getting to know so many wonderful, inspiring individuals and families that share their lives with CF. To my friends that blog - if you click on any of the new blog links I added. You will undoubtedly find a CF patient, wife, husband, mom, dad, or friend with an amazing story to tell. I've also found so many that, like us, have found positive things from living with this disease. I have to add something else to my list of the positive aspects of Mackenzie having this disease - that she has it NOW, in the age of the internet. Where I'll be able to show her, at the click of a link, so many inspiring people!

People really know how to make a girl feel special! Christy, Somer, Lil Chris' Mom, Angie, and DeAnn (if I left anyone out, please tell me!) all welcomed me with a blog award:

This award is passed along to new bloggy friends - and I have so many to choose from, so I want to share it with all my new friends and pass it along to all of those that have a link to the right under "CF Families"! (Is this cheating?). Thanks for all the kind words, I'm looking forward to getting to know each of you better.

Fellow CF Family Bloggers

Yesterday when I sat down to watch Thursday night's Private Practice and realized the storyline on the previews I'd been seeing all week portrayed a family where the dad and both children had cystic fibrosis I went to do a search on the internet to see what (if any) feedback it had received. I still haven't watched the show BUT that search led me to this huge world of CF family blogs - CF parents, patients, husbands, wives... So tonight, I'm up way past my bedtime checking them all out and leaving them messages (I hope they don't mind, it's late and I can't think so I'm copying and pasting the same message in each).

Also, I spent this week working on an article for Peekaboo magazine on Mackenzie and CF. If I get my courage up I'll post it (as long as everyone promises to remember I'm by no means a professional writer). It will run in conjunction with info on the Wine Opener fundraiser for the CFF - link to get tickets to your right!

Better post this now so I can get back to pouring through all of these new blogs - amazing people!

Please take a moment to visit these blogs - Kelly and Jenna - both of these Moms have recently had babies that have been flown to other hospitals for more care. I've only met Kelly once but I've followed her blog for a while, including her journey to have Harper. Jenna is a friend of Kelly's. I remember how heartbreaking it was when Mackenzie was flown to ACH when she was born and all thoughts and prayers were so appreciated! While you are at it, please check out Laine, Rich & Leighton's CaringBridge site too.

We Went to See the Wizard

Pre-Blog Flashback - Peyton right after she turned 5 (in 2005) as Dorothy for Halloween:
Last night the girls and I went with Michele and her girls to see The Wizard of Oz at the WAC. Last year we all went to see Annie, so it's becoming a January tradition. Unless of course next January it's something like Sweeney Todd.

We stopped at Marketplace to eat before we went - Elise and Mackenzie with their Chocolate Mess and then Peyton and Anna with their Chocolate Chunk Cake.

The show was wonderful! We loved it and had a great time.

"Strike It Rich"

Peyton had a Showcase Night last night to share her studies of numismatics. Jason and I learned a lot (including the fact that second graders are unbelievably proficient on PowerPoint - Thinking back to when I first started using a computer in school...6th grade we had one or two computers - we would play Where in the World is Carmen Sandiego on rainy days). We also learned a lot about money. This lesson has definitely piqued Peyton's interest in currency. Here she is with her slide on the PowerPoint presentation:
Above is her checkbook (I'm thinking about turning ours over to her - Peyton, if you are reading this, I'm just kidding) and the money she printed.