This is Saxon, our energetic little man who was diagnosed with Cystic Fibrosis when he was a week old. We gathered together many friends and family members and created Strides for Sax. Our mission is to raise money and create awareness for the Cystic Fibrosis Foundation to find a cure for cf. This is all about Sax and our team's efforts for the cause. As of the creation of this blog, Saxon is 21 months old, has been hospitalized several times for pneumonia, and had undergone 3 surgeries since his first birthday.

Monday, April 30, 2012


We started Sax on the double dose of Miralax on Friday as suggested by Rochester.  I was gone all morning on Saturday because I had class, but Daddy told me Sax had an 'accident' and pooed in his pants before he got up out of bed - probably because of the second dose.  That's ok, he couldn't help it.  Daddy got him to poo again on the potty chair Saturday morning. 

He hasn't gone since then!

No accidents, no more on the potty chair, nothing!!

He's been wetting plenty - and not having any acccidents that way.  He isn't even having as much gas anymore either.  There are a few stinky ones now and then, but not nearly what he was having before, which is good.

But he hasn't pooed since Saturday morning.  And it's Monday night.  And he should be having one a day.

If he doesn't go tonight, we're supposed to call Vicki back in the morning.  We may be Mayo-bound for a flush.

But this would actually be a good thing.  They'll be able to clean it all out and prevent any serious blockage.  We'll see what happens.

Keep Saxon in your prayers tonight that, if we go tomorrow, it everything "comes out" ok.

Friday, April 27, 2012

8 Days...

until we walk in our 4th annual Great Strides for Cystic Fibrosis walk!  Chocolate Roses for Cystic Fibrosis are flying out almost as fast as I can make them!!!  My mom had to go on a Zot-and-leaf-run again since she goes not too far from the craft store on her way home.  I was getting quite frustrated with some of the tape that we have because it's super sticky after putting on the roses.  I didn't think it should be that sticky, so when Sax and I were out running errands this morning, we stopped by Ben's Floral to talk to a florist.  (We don't use florists very often, but when we lost Baden in November, we ordered his floral arrangement from there.  We couldn't find anything that we completely liked, but had a few ideas and explained what we were looking for.  They did an AMAZING job and it turned out exactly as we had hoped!!)  I explained what we were doing and what the problem was that we were having.  The lady was very helpful and explained how it should feel and re-wrapped one of the roses.  I asked if they would be willing to donate some tape or if I could get a discount because of the organization.  The arrangement she offered was great - if I bought 12 rolls, she would donate 12.  My kids stole my business card holder out of my purse, so I didn't have any on me :(  I never thought to get our tax ID information from the state either, so I called our contact at the CFF for that so I have it next time.  I was able to leave her with a copy of the donation form, though, which I sent the original in today along with the information for the donation we had received from Pizza Ranch.  I'm going to be getting in contact with Sara again next week to discuss more about accounting for the contributions to our local group that aren't getting sent to the walk site and are being used by our group to raise money (ie, donations of materials/prizes for our group's local fundraisers which will eventually be sent in towards our team's overall goal.)

Raine was taking some around school and the secretary said we can bring a vase of them in on Monday.  She will put them in the faculty lounge with an envelope and a note of what they're for.  One day next week Raine is going to go over to Grammy's to sell roses in Freeborn.  We're also hoping to go door to door here again soon, depending on the weather.  Just seems to be kinda crazy this past week. 

I need to get an exact count, but we're creeping up pretty close to $500 in donations right now.  If you have not yet donated, you do it online.  My site is  Or, if you're up for a real tear-jerker, read

The Stinky Man! (it's a crappy conversation!)

I put a call in to Vicki today.  That's not a new way to open a post!

I've been a little worried, as a mother should be when something isn't quite right.  And when you can't put your finger on exactly what isn't right, it makes it that much harder.  Sax had been doing so much better with potty training, only having a few accidents with bm's but almost no wet diapers.

Well, this past week and a half, it feels like we've been going in reverse.  He's been hiding and having numerous accidents, both bm's and wetting.  I've talked to a lot of other moms and many assure me that "it's just a phase," which is what I've been hoping.

But then I started thinking....

One of the big issues with CF is the size, consistency, and smell of bm's.  (ok this is gonna get a little gross)  We've accused him of having accidents because quite often he has been smelling like he did.  Extremely potent poopy smells - enough to make this CF mama (who is used to the smell) gag!  He's been grunting and straining a lot when he passes gas.  I noticed that these gas episodes started about the same time he started having accidents too.  I suspected they may be related.  Which is why I called Vicki.

Sax is on omeprezole (Prilosec) which should take care of any gas issues he has.  He is also on a pediatric dose of Miralax 1x per day, which should help with constipation.  I asked her is we should consider a consult with Dr El-Youssef, who is Sax's gastroenterologist.  I wondered aloud if there may be something bound up or blocking in there.  I also wondered aloud to her if maybe when he's straining to push out the gas, he's just pushing so hard that he can't help but have accidents.  He doesn't seem to know whether he had an accident or if it was just gas, and has often told me he pooped when he hasn't, and vice versa.  We know he is absorbing the fat and calories he's getting because his bm's aren't greasy at all.  They have actually been quite hard.

Believe it or not (I didn't know this) CFer's actually can get constipated.  Which is what Vicki thinks is happening.  She thinks the gas we're smelling is old gas trapped behind some extra-sticky poo caught up in his bowels.  That's why it smells so horrible.  Even though he's still going, he's not able to get everything out.  And she agrees that may be why all of a sudden he has started having accidents again.  (Besides the occasional one every kid his age has because they're too busy playing and "forget"to go.  Knock on wood - he hasn't had any accidents in his bed either!!! yay Sax!!)

So now the treatment plan:
  • Lots of water
  • Lots MORE water
  • Double up on Miralax dosage with pediatric dose
  • Vicki will check with Dr El-Youssef to see if there is any added treatment needed
  • Vicki will call me on Monday to see if it helped.
The downside to the increased Miralax is that any "accidents" will be messier to clean up (good thing laundry is pretty much done!!)  On the bright side - he did poo on the potty chair today!!!  Those are few and far between! 

(As I'm typing this, Raine is yelling at Saxon that he pooped his pants - but it's just the gas :(  My poor little guy.)

And to leave you with a laugh, here's his bear wearing his (bleached) underwear.... (don't mind the pile of unfolded clean clothes in the background!!!)

Tuesday, April 24, 2012

11 days til Walk Day

I took the kids out for a walk after school yesterday.  I had spent the last couple days making Hershey's kiss roses for cystic fibrosis.  Attached to each rose was a label "THANK YOU for supporting Strides for Sax and the Cystic Fibrosis Foundation"  Hopefully having the websites on there will help spread awareness for cf.  I thought it was pretty sad that a lot of people just flat out told the kids NO.  (I was walking on the sidewalk, pushing Saxon's stroller with the bag of roses in it, and Sax was going up to the doors with Raine.)  We are not asking for a set amount per rose, just a "free will donation" and hoping that will pan out better than a set amount.  It seemed to yesterday too!  We didn't get many people who said yes, but the kids did raise $31 from the few who did!!  If Sax hasn't been so tired today and I didn't have sooooo much to do today, I would have taken the kids out again today to try to collect donations.

Tomorrow I know we won't be going out for long, if at all.  The forecast is calling for rain.  We are holding a team meeting at 7:30 at our house to discuss some ideas for a fund raiser this summer.  My brother had some great ideas that I think we're going to take and run with!  The plan is to assign some duties amongst the team, then we'll all check in/report back when we go for lunch after the walk. If anyone shows up.  I guess I am getting a little frustrated since the number of active members of our group has been dropping.  That includes the number of walkers and the number of volunteers at our events.  But what can we really do?  Hopefully this next fundraiser is successful and we're able to create some awareness and draw in some people!!!

As of right now, my family (Scot, Saxon, Raine, and I) have collected a total of $331 for the walk.  It's short of our goal, but we're hoping to at least get to $400!!

Sunday, April 15, 2012

Countdown to Walk Day

This year has been a little stressful when it comes to preparing for the walk.  It just seems like nothing is going right... no one is able to make it to the meetings, we don't have enough support to plan any fundraisers, and when we have planned fundraisers, no one shows up.... it's hard to know what to do and what we can count on.

This year our team is walking not only in honor of Saxon, we are also walking in memory of Baden, who we lost in November to CF.  But our actual walk team is pretty small again this year.  Our team's goal is $3,000, but as of right now (less than 4 weeks to walk day) we are still sitting at $0.

We had played with the idea of Trick Or Treating for CF wearing our Strides for Sax shirts, even though it's not fall and CF Awareness Month is May.  But we've decided we're going to try to do our Chocolate Roses for Cystic Fibrosis again... Recruit a few people to make them, then go door-to-door selling them while wearing our shirts.  In the past, we had said $1 per rose, but we're going to do it a little bit different this year - it's going to be a freewill donation for each rose.  We're really hoping to be able to raise SOMETHING doing this.  We're looking for volunteers to help both with making and with selling the roses....

Wish us luck!