Cystic Fibrosis Vest Compliance

Don't give up no matter how long it takes!

Six years ago today we received the news that Samantha has Cystic Fibrosis. That knowledge created a flurry of emotions including fear, shock, horror, and confusion. As I look back over these last six years I realize that none of my initial feelings would be the overarching issue we would learn to deal with…the DAILYNESS of this disease. I’m sure some people I know think I talk about Samantha’s CF way too much. Others don’t even know she has it. And somewhere in between those two extremes is where we live…daily making sure she gets the preventative (and not so preventative) care that she needs.

Imagine how many times a day you breathe, eat, and go to the bathroom. Every one of those bodily functions is affected by Cystic Fibrosis. Therefore, each time Samantha experiences these seemingly normal activities we must consider what her body is doing or what treatments need to be done. Because of that, it is impossible to discuss Cystic Fibrosis without speaking the word “compliance”. Here is a piece of our journey…

Merriam-Webster defines compliance as "the act or process of conforming, submitting, or adapting to a desire, demand, proposal, or regimen."

Merriam-Webster would define Samantha as "an antonym of compliance":

• At 8 weeks she needed a spinal tap and fought so hard she stopped the spinal fluid from coming out. They barely got enough to run the needed tests.
• At 1-year she screamed so hard at her annual blood draw that she cut off the blood flow completely. What should have taken a minute, took MUCH longer as we tried to calm her enough to get it out.
• As recently as this week at her 6-yr annual blood draw 3 people had to hold her down…and they were working hard to do it!

There is no doubt in my mind our girl is a fighter.  The very part of her being that resists submitting to us is the same thing that will help her long term fight of this evil illness. But for now we battle the daily issue of compliance. I’ll use The Vest as an example. She has had The Vest for over a year, and to say it has been rough would be an understatement. Crying before, crying during, wanting to pause every couple of minutes, not letting me leave her side, and scared to talk because of how The Vest makes her voice sound. A treatment that should take 20 minutes has taken as long as an hour on some days.

As if that’s not enough, I also feel all alone. I don’t ever hear anyone else having these problems for this long. All CF kids will have compliance hiccups like this, but the parents try a thing or two and it all seems to fall into place. I’ve dreamt of the day that Samantha would happily watch a movie or tv show during an entire Vest treatment.

After 15 months, that day came THIS WEEK!

Tuesday we had the very first treatment that she didn’t ask for a single pause the entire 20 minutes. I was in awe!! So exciting! And then yesterday she played the Wii for the first time during a treatment! And once again she never asked to pause the treatment! She said, "Mom, this is awesome!"  Not only that, she told me all about the video game she was playing the whole 20 minutes!  I’ve never gotten more than a short sentence or two out of her! It’s seriously like dealing with a different child!

So I hope our story can encourage someone reading this who is in the middle of any kind of long term training with their child. Maybe it’s CF compliance. Maybe it’s been a year of potty training that feels like will never end. Maybe math isn't clicking no matter how you explain it. Whatever it is…don’t give up:

1. Explore every suggestion you are given. 
2. Keep trying without acting out of desperation.
3. And above all, remember to love your child whether he or she learns to comply or not.

Just because it hasn't happened yet, doesn't mean it won't happen!

Ndamukong Suh, What's up with you?

An event happened in the Detroit Lions Thanksgiving Day game that has everyone talking, and since I love NFL football I feel the need to jump in!  Defensive Lineman Ndamukong Suh hit the head of Green Bay Packer's guard Evan Dietrich-Smith into the ground 3 times and then stomped on his arm while walking away.  Here's a video of what happened:

And just to add insult to injury, here's what Suh said after the game:

If somehow you bought any of that, please go back and watch video #1.

Of course everyone in the NFL has a different way of expressing their opinion on this, but I am happy to observe that everyone is in agreement on this one thing:  There is NO place for that behavior in the NFL.  Thankfully, Commissioner Roger Goodell tends to have a pretty heavy hand for this kind of thing, so I suspect I will agree with whatever decision he makes next week. 

This event is being likened to the "Albert Haynesworth stomp" of 2006.  Haynesworth stomped his helmet-less opponent on the head.  Haynesworth was ejected from the game and suspended for 5 additional games.  Considering the fact that Suh has been fined 3 times already for unsportsmanlike conduct many think in addition to another fine, Suh will be suspended for 2 games.  After careful consideration of this possible 2-5 game suspension, I have decided I want to see a 4-game suspension:

Game 1:  Head butt #1
Game 2:  Head butt #2
Game 3:  Head butt #3
Game 4:  Stomp on the arm

The BEST part of a 4-game suspension is that there will be 1 game left for Suh to play in the season.  And guess who the Lions will be playing?  The Green Bay Packers...again...IN Green Bay!!   And Green Bay can settle this the way it's supposed to be settled...by beating the Detroit Lions.

Thanksgiving Thoughts

This week I heard someone speaking to a group of people say something to the effect, "Just in case you didn't know, Thanksgiving isn't all about food."  That struck me a little funny at the time since the first Thanksgiving was literally all about the fact that the Pilgrims finally had food!  I know the point he was making...let's not gorge ourselves all day like mindless fools.  But as I contemplate our Thanksgiving banquet table this year, 2 thoughts keep popping up:

1)  I'm thankful for the food.  This year my family had some financial surprises that threw us for a loop.  For a few months, I was digging in the pantry on more than one occasion to pull out some canned tuna just to make it to pay day.  It wasn't pleasant!  Am I trying to say it was anywhere near what some people experience every day, every week?  No.  But did it teach me to be thankful for canned tuna?  Absolutely!  And when I bought groceries this week to make our Thanksgiving meal, I was particularly mindful that if that financial shock had happened in November, we would be eating tuna for Thanksgiving...and we would be thankful we were eating at all. 

2)  Jesus told a parable of a great supper to symbolize grace.  In Luke 14:15-23 we read that a man had prepared a feast, but everyone he invited had an excuse for not attending.  This man wanted his house full and all his food eaten, so he told his servants to go get the poor, sick, blind, and lame.  This is the invitation made by Christ.  His grace extends to everyone!  Sadly, those who often have their lives "together" don't recognize their need for the feast!  It's only those who admit their own need that cling to Christ's invitation.  So as I gaze on our Thanksgiving meal this year, I will ponder how that abundance of food represents the abundant, mercy-filled life that I live.

Aren't you glad you have been invited to the feast?

Good Friday: An Earth Day Testimony

Two years ago my birthday fell on Good Friday, and let's just be honest:  it was awkward being happy. How in the world could I fully enjoy celebrating my birthday on the day that my Lord gave his life for mine? This year Earth Day falls on the same day as Good Friday. Signs celebrating Earth Day are everywhere, and every one of them makes me a little sad. As much as I think we should care for our earth, I just wish the giant banners were marking Good Friday.

I wonder if anyone realizes the ultimate Earth Day was the original Good Friday.  Look what happened in Matthew 27:51-54...

At that moment the curtain of the temple was torn in two from top to bottom. The earth shook, the rocks split and the tombs broke open. The bodies of many holy people who had died were raised to life. They came out of the tombs after Jesus’ resurrection and went into the holy city and appeared to many people. When the centurion and those with him who were guarding Jesus saw the earthquake and all that had happened, they were terrified, and exclaimed, “Surely he was the Son of God!”

Did you catch that?  When the guards saw the earth quake, rocks split, and tombs break open, they believed!!!  The earth shared a testimony that pointed directly to the glory of God!

May we speak about the Creator as boldly as the earth did that day! 

And may those who hear us believe!

Hearts at Home Bloggers: The Miracle of Miracles

I am excited to be a part of the Hearts at Home blogging community! The third Thursday of each month this community will blog about a pre-selected topic! I can’t wait to read all the diverse and original points of view. So for this initial post, we will get the ball rolling with the following question:

Have you experienced any miracles in your life?

Most definitely! I’ve been very sick, and awakened one morning completely well! I’ve given and received forgiveness for wrongs that could only be possible with the intervention of the Lord. I’ve been on a mission trip to Kenya where an evangelistic conversation that began needing two translators ended in the American and Kenyan understanding each other directly! All very powerful experiences, but by far the most amazing miracle I have experienced is…

being raised from the dead.

You read that correctly. I have been raised from the dead. Romans 5:12 says, “Therefore, just as sin entered the world through one man, and death through sin, and in this way death came to all people…” Subsequently, 1 Corinthians 15:21 says, “For since death came through a man, the resurrection of the dead comes also through a man.”

Which is what makes Romans 5:6-8 MIRACULOUS:

“You see, at just the right time, when we were still powerless, Christ died for the ungodly. Very rarely will anyone die for a righteous person, though for a good person someone might possibly dare to die. But God demonstrates his own love for us in this: While we were still sinners, Christ died for us!”

He did that for me! He did that for me? He did that for me!! Miraculous!! While I was still dead in my sinful nature, completely unable to even make the first step towards Him, Philippians 2:8-11 says he took these ENORMOUS, MIRACULOUS, GOD-SIZED steps towards me:

8 And being found in appearance as a man,  
   he humbled himself
   by becoming obedient to death—
   even death on a cross!
9 Therefore God exalted him to the highest place
   and gave him the name that is above every name,
10 that at the name of Jesus every knee should bow,
   in heaven and on earth and under the earth,
11 and every tongue acknowledge that Jesus Christ is Lord,
   to the glory of God the Father.

And this truth in my life leaves me with no other response but the one Peter expressed in 1 Peter 1:3-5:

“Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead, and into an inheritance that can never perish, spoil or fade. This inheritance is kept in heaven for you, who through faith are shielded by God’s power until the coming of the salvation that is ready to be revealed in the last time.”

I hope that no matter what miracles you have experienced in your life, that you also have experienced this one. It will not only change your heart, it will change your eternity! If you don’t think you have experienced this miracle personally, please email me: experiencingeachmoment@gmail.com. I would be more than happy to talk with you about it! The miraculous work has already been done-you just have to choose to receive it!

Book Review: Same Life, New Story

"Move from what is to what can be by changing how you think and talk to yourself" is a description of the book found on the book jacket. I would add that Jill Silvious also emphasizes an important step before that: accepting your individual story (not denying it, resenting it, or running from it) so that you can embrace what amazing things God has in store!

Not only would I HIGHLY recommend this book, I actually have already endorsed it in multiple conversations ever since I’ve read it! Somehow Silvious put into words thoughts that have been swirling around in my head for quite some time. Silvious peals away at the lives of women from the Bible and present day women she has come in contact. In doing this, she shows us what a difference our lives can make if we accept our story…not someone else’s, not what we always wanted, not what is easy.

There have been so many things in my “story” that I didn’t want to accept and it was such a good reminder I’m not the only one! The Bible is full of women who were used to fulfill God’s plan, and who wants to be comfortable with their own story when the God of the Universe is writing one for you! This book will inspire you!

Disclaimer:  I received this book free from Thomas Nelson Books for my honest and impartial review.

Siesta Verse:Tax Day

If you love those who love you, what reward will you get?

Are not even the tax collectors doing that? 

Matthew 5:46 NIV

Wordless Wednesday: Giddyup Elephant!

Spring into Storage: Week #2, Coat Closet

I had to pick an "easy" project this weekend because I AM SICK!  Not much is going on around this house these days except trying to get well!  I couldn't get the whole closet in one shot, so I had to take a "top" and "bottom" photo.  Before pics:

Even though the whole thing seems a mess there are 2 main things that I wanted to change:

1. Clothes on the top shelf-those are clothes the kids have grown out of that need to be given away. Once I clean them, I throw them up there, so I need a box for each child so it's neat from here on. On the left is a stack of bags, and I've put them all in the black bag to use them whenever I need.

2. I thought these vertical storage shelves would be perfect for shoes. Well, I liked them, but the rest of my family couldn't quite get on board, so I needed to go back to the shoe rack we had at our last home. Whatever it takes for a 5 & 7 yr old to put up their own shoes!

While I was cleaning up, I put the kids' snow boots up high so they wouldn't get in the way.  The basket on the ground has gloves and scarves, and the walmart sack is a bag that I need to give to someone.  I love opening my coat closet now!

Siesta Verse: April Fool's Day

Since I knew I would be posting this verse on April Fool's Day, I couldn't help but post a verse about "fools".  The Bible has much to say on wisdom and foolishness, and I found this verse which is unfamiliar to me:

Resentment kills a fool, and envy slays the simple. 

Job 5:2 NIV

April Fool's Day Giveaways!!!

Don't be a fool on April Fool's Day!  Carrie, over at Reading To Know, is having multiple April Fool's Day giveaways ALL DAY tomorrow.  Don't miss out!  I hope to win something, and I hope you do too!

Book Review: Judgment Day

This mystery novel centers around a driven news anchor, Suzanne Kidwell, who has a cable show called Judgment Day.  She exposes anyone in power to get ratings, and in her attempt to get the scoop she tends to cut corners in the fact-checking department.  While investigating a string of missing teenagers, Suzanne finds herself in a great deal of trouble.  Before she knows it, she is being arrested for murder. 

As despicable as her actions have been, there is something likable about Suzanne.  This book is full of interesting characters...some honest and some evil to the core.  I would say it's an easy read that can be done in a few hours, but because of the variety of characters and interestingly woven plot it kept my attention! 

One final comment:  The book jacket says Suzanne is accused of murdering an entrepreneur, John Edward Sterling.  In the book, she is accused of murdering a woman and Sterling is a Senator she is investigating.  It doesn't affect the review of the book itself, but I just couldn't post this without mentioning that discrepancy. 

Disclaimer:  I received this book for free from WaterBrook Multnomah Publishing Group for my honest review.

Wordless Wednesday: Undeveloped Film

Just a few words:  I cleaned out my basement storage this weekend and found a roll of 35 mm film!  I had the pics developed ($10 at Walgreens.  Yikes!) and discovered they were from a trip to my husband's hometown, Girard, Kansas.  Based on the weather, the dog, no kids, and the car we drove, I think it's from a trip we made in February 2003 for the wedding of my brother-in-law and sister-in-law.  Kind of random since we bought our first digital camera in Spring 2002, but fun to see nonetheless...

Organizing Side Effects!

This weekend I started my Spring cleaning in the basement storage!  It was hard work, but something tells me it won't be the hardest room I plan on conquering!  In the midst of that project I was reminded about 2 side-effects of organizing:

1.  Organizing encourages creativity.  I was taking a break after removing everything from the basement storage, and in the big pile of stuff I saw these two items, a black crate and red ribbon (in the Christmas box):

 I suddenly had this idea to weave the ribbon through the crate.  Here is the result:

No, it's not the prettiest thing ever, but I put a piece of cardboard in the bottom (which could be covered with wrapping paper), and now it can house smaller objects because they won't slip through the cracks.  If I was actually planning it, I could purchase cuter ribbon (wouldn't a black and white polka dot be cute?)  I plan to use this for storage in my daughter's room which is decorated in ladybugs.  It will probably be stored away in the closet, but at least when she pulls it out to play with its contents it will match her room! 

2.  Organizing may require compromise.   Even though my dream is to have unlimited funds for organizing, that's just not realistic!  I have more than 10 spaces to work on.  Buying new containers for every single one can get quite expensive!  So I started using the items I already have  in the house.  I was originally going for a symmetrical look in this space, so I put a shoe rack on either side:

I quickly realized these were inadequate!  I wanted to put more on these shelves, but the shelves were too narrow and not sturdy enough to hold everything!  What I realized I needed was a tall bookcase, but the only spare one we have is black, not something I would pick in such a small space . As I told my husband my dilemma, he made a request of me.  He asked that I would use the black bookcase for a few weeks to find out if that is really the shelving that will work, and if so I can buy a bookcase in the color of my choice.  I said yes because I'm organizing these spaces to make my whole family happier, not just me!  So in addition to being an "after" picture, this is a picture of compromise:

Week #1, Basement Storage "After"

I can't wait to show you my reveal!  In case you didn't see my before pictures or "plan of attack" posted Friday, you'll want to see that here.  The next step of orgjunkie's P-R-O-C-E-S-S is REMOVE, so I took everything out and started with a blank slate. 

Now, what to put put back in!  I have this new freezer that needed to go in this space, so I put it in first!  I also purchased these brown shelves from a military mom for $10 and couldn't believe that they both fit!  I still have more to put in, so I don't know that they will stay, but I loved that they fit so perfectly.   

By the way, here is the pile of stuff that used to be inside this space:

The next step is where I spent the bulk of my time.  "O" is for Organize into piles.  This was going pretty smoothly until I came to this 3-drawer container.  I was stuck, so I slept on it: 

When I woke the next morning, I thought to go back and read the PROCESS again.  I realized that while I was working the PROCESS in the room,  I had not worked the PROCESS with this bin.  I had skipped "R"-I hadn't removed everything!  I promptly corrected that: 

It wasn't really fun dealing with the little things (so tedious), but I found a place for everything and threw away plenty.  For the entire space, I purged a trash bag worth of items and a broken Christmas box: 

Here are all my piles.  Under the picture I have listed from left to right what they are and where they have been relocated to:

• Halloween, Christmas, and Easter boxes went to the outside storage
• Black crate, nebulizer, and box underneath went to Samantha's room
• Black bag in front of that box went to the top shelf of the coat closet
• Wicker basket went to Timothy's room
• Electronics went to entertainment armoir in living room
• Tools went to the garage
• Luggage carrier and baby gates went to a specific area in garage designated to sell or donate
• Card tables went back into basement storage
• Sealed clothes went to top shelf of the laundry room

Next I needed to "Containerize" or find storage solutions.  As you can see this space already had several containers.  In fact, look at how many empty containers I had leftover!

There were 3 container choices I made:

1. The most important container I needed was the shelving to place my school and craft supplies on.  I'll talk more about my decision making process on that tomorrow, but the final conclusion was one tall bookcase. 
2. The pink caboodle pictured previously housed our craft paint and brushes.  However, a mom was selling a plastic bag full of those items at a garage sale for $5, so I needed a larger bin.  You'll see that on the top shelf of the final picture.  Now my cute caboodle is empty and any recommendations on what do with it would be greatly appreciated!
3. Once we put all the tools in a tub, we realized we needed one large tool box, which I picked up at Wal-mart last night.  Here's my hubby hard at work doing that:

I feel like it will take me some time using the new system to Evaluate and Solve/Simplify, but I tell you what...I sure am Smiling!  All of the kids crafts supplies, games, and my teacher books fit with room to spare!  (I just realized I forgot to adjust the shelves, but I'll chalk that up to an entire house of sick people.)  I just love it.  Do you have any ways I could make the space even better?  I would love to hear them!

Week #1, Basement Storage "Before"

Even though it is snowing outside my window as I type, this is the first week of Spring!  And to celebrate I am gearing up to do some Spring Cleaning.  I realize traditionally this refers to "deep cleaning", and I'll be doing that, but what my house really needs is some organization help!  We moved here in September, and I didn't get it set up from the inside out.  We've been blessed with the largest house we've ever lived in.  I couldn't be happier, but there is a small downside.  Even though there is tons of storage space here, there are are very little shelves to help with vertical spacing.  I am going to Spring Into Storage!

I will be using the P-R-O-C-E-S-S created by Laura, the Organizing Junkie!  The first step "P" is "plan of attack".  My plan is to organize all of the hidden storage areas in my home.  I plan to work on one space per weekend (except my outside storage which may need several)!  Since Spring started on March 21st and Summer begins June 21st, that means there will be 13 weekends of Springing Into Storage.  I am very excited!

Here is a list of the spaces I intend to tackle.  They are in no particular order:

1. Basement Storage
2. Laundry Room
3. Coat Closet
4. Kitchen Pantry
5. Built In Desk
6. Linen Closet
7. Timothy's Closet
8. Samantha's Closet
9. Master Closet
10. Garage
11. Outside Storage

I am a big fan of the before and after photo, whether it be a makeover or room decor, so that's what I'm going to do!  I will start by posting a "before" photo some of my general plans.  I'll post it on Friday if I've had enough time to think ahead!  When you see the before pics you'll think: "Alicia must have made those spaces look extra messy so her after shot would look better!"  Let's go with that.  And then after the weekend, I'll post photos of the P-R-O-C-E-S-S and the "after" shot!

Let's start the fun!  Below are before photos of my basement storage room.  This is an interestingly shaped space.  I think you can tell in the photo since it's under the staircase it has a slant in the ceiling, but at the entrance the space is full height.  There is about a foot on each side of the door to the wall.  This is the only closet in my basement where I homeschool, so I hope to eventually use this room for storage of all things school and craft!   Wish me luck!

March 2011 CF Clinic Visit & Update

It's been a couple of crazy weeks with Samantha.  We had clinic on March 14th, and it was stressful.

Ultrasound

Samantha's blood work in Dec was normal except for liver enzymes.  The doctor ordered an ultrasound, but since this very same thing happened the year before with a clear ultrasound, there was no rush.  We have a 50 minute commute to our clinic, so the clinic scheduled the ultrasound for the same day as our next clinic visit.  Hardest part of the ultrasound is that it was scheduled for 11am, and Samantha had to fast (food and drink) 6 hours prior.  By the time of the ultrasound she hadn't eaten for 15 hours. 

Clinic had a rocky start

We were shocked how great everything went all morning.  Unfortunately, as the ultrasound was finishing, Samantha's hunger turned to headache.  She started screaming in pain, and there was no calming her.  We rushed to lunch, but she wouldn't even eat anything because her head hurt so bad.  This was the state she was in when we showed up to clinic.  As members of the CF team shuffled in and out of room, it was obvious that clinic wouldn't go very smoothly.  After many tears, she finally fell asleep on my chest.  Praise God!  After about a 20 minute nap, she woke up happy as a lark and said, "Mom, I'm ready to go breathe hard!"  Thankfully, we got PFTs and throat culture done!  PFT were okay-she had mastered the long exhale, but still needs to work on the fast exhale at the beginning.  Culture grew staph, which is normal for her.

Weight

The hard part of the day was her weight.  It was down significantly from 3 months prior.  Height was 65th percentile, but weight was 35th.  Makes the BMI under 25th percentile.  We talked at length of the need to get that weight back up, and a weight check 6 weeks out was scheduled (can't believe that's only 4 weeks from this Monday!).  In hindsight, the fact that she hadn't eaten for about 18 hrs by clinic time HAD to play a roll, but I don't know that it would have affected her weight by the 2.5 lbs she needed to be at 50th percentile.  And very gently, the doctor did say we would monitor this closely, and if we couldn't turn this trend around we would discuss options such as the "g-tube".

G-TUBE

There is just no way that word makes a parent feel good.  I know many CF moms who are thankful their child got one.  It changed everything for the positive!  I'm sure if we have to resort to that option I will feel the same way (especially knowing the stress I feel now), but the g-tube is considered a last resort for a reason.  None of us want it!

Trying (and failing) to add calories

We came home and tried to get Samantha to make more fattening choices than raw broccoli and fresh strawberries (with no dips).  She felt my stress, and she completely rejected anything "good" for her that she normally did eat.  By Friday she had lost more weight, so after many wonderful suggestions and the support of a dear CF mom, I went on a food vacation last weekend.  We backed off worrying about food, and then I called the nutritionist on Monday.

Regrouping

Our nutritionist recommended a sticker chart that included 3 potential rewards:  a sticker for every 10 minutes of sitting at the table, a sticker for 5 bites of something, and a sticker for 5 drinks.  Whenever she earns 5 stickers, she gets 10 minutes of time with me or dad doing the activity of her choice!  She has responded very positively to this.  Also, some medicine was ordered to increase her appetite, which I picked up yesterday and will start her on next week sometime. 

Pink Eye

Tuesday morning Samantha woke up with her eyes stuck together (totally freaked her out).  A dr's visit a few hours later confirmed pink eye.  She had a bit of a runny nose, but her ears, throat, and lungs all sounded clear.  For two days we treated pink eye and kept Samantha secluded.  Wed night, I took Timothy to Kidz Club, and Samantha was generally fine.  By the time I got home 3 hours later she had a fever and a bad cough.  BAD COUGH.  It came on quicker than anything ever has.

You know you're at an awesome CF clinic when...

One call to the clinic, and they ordered Augmentin for her.  The coordinator also was concerned that the sudden onset and fever was indicative of the flu.  She wanted me to go back to our gen peds office and have Samantha tested.  By now it was mid-morning, and the entire pediatric office shuts down at noon on Thursday for a meeting.  At a military hospital, really???  The soonest they could get me in was Fri morning, so I called the CF coordinator back to ask if she wanted me to wait until Fri or go to the E.R.  She said, "Neither.  I'm going to call you in some Tamiflu."  I LOVE THIS PLACE!  So without even a dr's visit, I got Augmentin and Tamiflu.  If she's not better by the end of the weekend, something is seriously wrong!

Needless to say, weight has taken a back burner in the midst of one of Sam's worst sicknesses ever.  I'm still doing the sticker chart, but now our emphasis is 4 breathing treatments a day and taking these 2 new meds.  She tends to lose weight during sickness, so I am praying continually that God will protect her and motivate her to eat!  Per the nutritionist's instructions, I am only weighing Samantha once a week, so that will be on Monday!  She weighed 37.5lbs last Monday, so we'll see...

Wordless Wednesday: Favorite Food

For more great Wordless Wednesday photos head over to 5 Minutes for Mom.

March 2011

It's been so long since I've linked up to What's On Your Nightstand? that I feel a little like "coming home"!  My favorite part of this meme is it gives me a chance to evaluate and prioritize my book reviews and joy reading (which hopefully overlap!)  Some of these have been on my nightstand for a few months, so I'm hoping this will give me a little accountability to see some different items on my "nightstand" next month!

Family Life Marriage Bible by Dennis and Barbara Rainey

The Five Love Languages of Children by Gary Chapman & Ross Campbell

Judgment Day by Wanda L. Dyson

Made to Crave by Lysa TerKeurst

Same Life, New Story by Jan Silvious

For we do not have a high priest who is unable to empathize with our weaknesses, but we have one who has been tempted in every way, just as we are—yet he did not sin.

Hebrews 4:15 NIV

Made To Crave by Lisa TerKeurst

In January, my friend Stephanie of Stephanie's Mommy Brain blogged about her experience reading Made to Crave.  You can read her amazing testimonial here.  I was privileged enough to win one of two copies of the book from her, and have been on my own Made to Crave journey ever since.  Can I just say this isn't easy?  It's fulfilling and meaningful and life changing, but I want it to be fun and exciting.  It's not. 

For any readers not familiar with the book, a quick summary would be that we are meant to have our needs met by God and not food.  And when food (OR ANYTHING) else besides food meets our needs everything gets out of whack (sp?)  This is not just a passing idea for me...this is a lifelong struggle.  It's a battle that I am facing meal by meal and minute by minute. 

I have been making small steps since I received the book (starting to work out semi-regularly, cutting out sodas, etc), but on Monday of this week I finally started eating well.  By eating well, I mean getting some fruit and vegetables into my daily plan and not eating ice cream.  This is day 3, and it's just hard.  I walk around the house with the book close by saying to myself, "Alicia, you were made for more".   So, I'm doing it, but not exactly happily.

After hoping to start blogging regularly again in February, I haven't.  Ever since Monday I haven't written any new Facebook status updates.  Why?  Because all my energy is being taken up by redirecting my cravings from food to God.  I don't mean for this blog to turn into just a food blog, but it is supposed to be about "experiencing each moment".  These are my moments right now. 

I know Lisa's book has spoken to a lot of people, and yet I don't hear anyone sharing the struggle I feel.  If you know of someone blogging their battles to crave God instead of food, please write it in the comments!  I've spent 37 years using food to address all my different emotions.  I have a lot of re-learning to do.  And it isn't fun.

My "Siesta" verse for March 1st is Hebrews 4:14...

Therefore, since we have a great high priest who has ascended into heaven, Jesus the Son of God, let us hold firmly to the faith we profess.

I haven't decided when I'm memorizing each verse, but in the end I'll have Hebrews 4:12-16 memorized.  I love this!

Kick Off to Great Strides 2011

This is Alicia speaking on behalf of Team Sam for Great Strides 2011:

I am 37 years old.

In most families, other milestones like “sweet 16” and “over the hill 50” are important markers. But in our family, the number 37 never leaves the forefront of our mind. Why?

The median predicted age of survival for those with Cystic Fibrosis is 37.

Samantha’s median age life expectancy is the age I am right now.

My cousin died of Cystic Fibrosis at 2 months old. In the span of one generation, research has come so far that the life expectancy is now 37. As wonderful as that is, I know what 37 years feels like and I do not feel like I am at the end of my life. In many ways, it is just beginning.

When Samantha reaches age 37, I want her to feel the same way!

From now on, when you hear the number 37, I want you to remember Samantha who spends hours a day taking medicines and doing treatments so that she can extend her life little by little. You can help her and the 30,000 other Americans with this disease by giving to our Great Strides fundraiser!

In a little twist to our Great Strides fundraising and in honor of the age 37, I am asking that you donate $37. Obviously, we will accept any dollar amount, but as a reminder of this age and what it means to Samantha’s life, I am asking for a specific number this year! This money will go towards finding new medicines and new treatments that improve each CFer’s daily life and extend this median life expectancy. Do you have $37? It will not be wasted!

To donate right now, click on the following link:

LIVING BEYOND AGE 37

Any donation will be appreciated!

For more info about Samantha's Cystic Fibrosis, visit our CF Blog, Great Strides for Team Sam!

Winter Weight Off

Over at 5 Minutes for Moms, Janice has started a series called Winter Weight Off.  For me, this would best be described as "WinterS Weight Off" since my weight has accumulated over many years!  I need to lose more pounds than I would ever want to admit, but I know that the weight I have now is from poor food and exercise choices of my past.  I can't undo those decisions, but I can make healthy choices today, meal by meal. With that in mind, I have joined up with the Winter Weight Off and look forward to everything Janice is going to share! I can't wait to learn.  In addition to this, you can expect to see posts very soon that will share the various tools I am using to make this weight come off!

Favorite Super Bowl Commercials

Was it just me or were most of the commercials a bust this year?  Hello, marketing group at Doritos, what were you thinking? Even though I found myself saying, "that wasn't funny" over and over, I did see a few I truly enjoyed...

Everyone passed this one around before Super Bowl Sunday, but it's still really good, so I'll post it too! Notice only Volkswagen and Bridgestone got my vote this year!

Super Bowl XLV: I've Picked a Team!!

Yesterday I wrote what a challenge I have picking a team for the Big Game.  Today, the Cystic Fibrosis Foundation, posted the "Steelers Use Super Bowl Stardom to Help Support CF Foundation", and VOILA my team is picked.  Evidently, the Steelers are long time supporters of the CF foundation.  That's one thing the Steelers and I have in common! 

Super Bowl XLV

Sunday is Super Bowl 45.  And while I'll always be happy to watch pro-football, there are a few things about this Super Bowl that disappoint...

1. The Cowboys are hosting it, and I STILL haven't been to a game inside the new stadium
2. The Cowboys are hosting it, but they aren't in it!
3. The Cowboys are hosting it, and the NFC team is the Packers!
4. The Cowboys are hosting it, and the AFC team is the Steelers!

Give me a break!!!  I don't even know who I want to lose more! 

There better be some good commercials!