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, November 26, 2012

Best. CF. Clinic. Visit. EVER!!!

Even Vicki and Dr P said it was... but I'll get to that in a second.

We finished up our Christmas shopping today for the kids, save for a few stocking stuffers left to pick up.  Scot, Sax, and I hit up Mill's Fleet Farm first, then hit up a restaurant we've never tried before thanks to a recommendation of a friend: Whistle Binkie's on the Lake.  Nice view, good food, and decent prices :)  We'll be going there again!  We're always looking for somewhere differet to try instead of the usual haunts, which can get old after a while.

Sax did what I can only describe as the most disgusting thing I can think of.... Daddy took him to use the bathroom.  While Daddy had his back turned, Sax decided to wash his hands - thinking the "pee biscuits" in the urinals were soap!!! GROSS!!!  Daddy scrubbed Sax's hands and gave him a huge lecture on what IS and what IS NOT soap.  Ugh - makes me shudder!!!

Sax had to be at the clinic at 1 for his GI appt.  It was just an annual check and everything looked really well, save for some mild bloating.  Dr E ordered a celiac test and vitamin check for his next checkup in Feb.

After GI, we had appointments with Vicki, Dr P, then the dietitian.  I wasn't sure why we were meeting with dietitian other than Sax's BMI has been varying so much.  I figured it would be another pep talk about getting him to do the impossible and gain some weight.

Vicki was in a really good mood when she came in for her appointment with Sax, in spite of a horrible head cold and sinus infection (very thankful she didn't want to share and masked up!)  She checked Sax out and send Dr P in for his part of the checkup.  Dr P seemed a little more excited than normal too... we wondered what was up.

We were told that, since Saxon started coming to CF clinic, he had his very best checkup.  Ever.  They said they have not seen him this healthy in the past 4 years.  His pulse ox was 100% and all the gunk in his lungs has cleared out.

The reason for the appointment with the dietitian, we discovered, was a final push to put some chub on the little man because in January his BMI was 59%, in June his BMI was 37%, and in August at his last appointment his BMI was down to 18%.  With the rate of decline, the discussion of a feeding tube was being approached again.

Well, Sax decided that's not what he wanted - because he finally gained weight.  And quite a bit for the time period!

He went from 14.9 kg to 16.3 kg in the last 3 months.

His BMI went from 18% to 64% in the last 3 months.

For someone with a serious life-shortening disease, hearing that he checks out the healthiest they've ever seen is one helluva reason to celebrate :)

So for his dietitian appointment, we spent the time discussing how we can keep him gaining, and what's going to happen when he turns 5 and we can no longer get WIC to cover his PediaSure.  The dietitian sent me some links and also suggested I look into finding 'homemade pediasure' recipes, which I've started checking into.  I'm hoping we can experiment and maybe find something that will work before we actually do run out of PediaSure.....

Wednesday, September 5, 2012


Haven't had a whole lot to post lately - which is a GOOD thing cuz that means Sax hasn't been sick.

On Friday, though, Sax had his quarterly checkup.  We got to meet the new CF nurse at our clinic - Marcia.  I've talked to her several times on the phone. And Sax has gotten taller.

But he hasn't gained any weight.

He's actually LOST weight.  His BMI has dropped from 26% to 18%.

Sax is going through another "I don't wanna eat" phase.  And it's kinda scary.  I don't want him to have to get a feeding tube.  But I can't force him to eat.  I try offering a variety of different foods for him to eat, but it seems he wants the healthy foods.  He won't dip his apples in carmel.  He doesn't eat fries anymore.  It's frustrating some days.  I guess the saving grace is that he does drink his PediaSure, so we have been loading that up with as many calories as possible.  I have a few tricks up my sleeve still that I'm going to try.  I'll report back on them if they do work out....

Dr P has decided to increase Sax's dosage to 4 Creon 12 with each snack, 5 Creon 12 with each meal, and 6 Creon 12 with fatty meals.  He also scheduled an appointment with GI for when he has his next appointment.

On the bright side - Daddy got inked again!  I took the kids to the park to play while he got his 4th rose - one for every birthday of Saxon's.  Sax decided it should be purple this time :)

Monday, May 7, 2012

Great Strides 2012

This year we had our biggest team walking so far!!!  THANK YOU to everyone who donated to our walk and to everyone who walked!!!

Our walkers this year:
Me & Scot, Raine & Saxon
Amanda & Luke Buchanan & Cindy, Bryson, & Chelsey
Sam Wasmund & Jeremiah
Steph Terry & Zack
Tim & Steph Putzier & Gavin
Mary Holan
Abbey Jacobsen
Dallas Jacobsen

19 walkers - woohoo!!!

Our goal for next year is to get our team up to 25 walkers!!!  If you want to come join us, you're more than welcome!!!  Even if you don't raise any money, we still appreciate everyone who comes!

As of Walk Day, our team as a whole had raised and turned in almost $1,100!!!  I know we still have some money that is being collected, and some that has been collected and not turned in yet.

The day of the walk was a little chilly but not too bad.  I was kind of disappointed with the shorter route - we didn't get to walk as far along the river, which has always been one of our favorite parts of the walk.

To change things up a little bit this year, Scot dyed his goatee purple to increase awareness.  I tried to dye Raine's but it didn't take very well.  We ended up putting purple spray in her hair.  I dyed mine too, but mine came out looking almost black with a purple tint.  Steph Terry dyed hers too!  Hers turned out better than mine - you could tell hers was purple.  Next year I think I may bleach my hair first so that it comes out really purple.  It'll grow out eventually, so no big deal!

So now I'll leave you with some more pictures from this year's walk.

If you haven't yet, there is still time to donate.  Visit my website at

 On the way home, both my little ones were sleeping soundly.  This was Raine's 4th Great Strides walk that she completed, and Saxy walked almost the whole thing for the first time ever.

Progress!!! And a new plan...

Finally.  Sax is finally making progress!!! 

We thought he was doing so well Friday night when we got home and he pooped 3 times! We figured he would keep going and going and going after being pumped up with 1 1/2 liters of Golytely.

But that was the beginning - and the end - of his progress.

Saturday we had the Great Strides walk, which Sax walked most of, but that didn't help move things along either.  He went once Saturday night, once Sunday (which finally wasn't green!) and - wait for it!!!! - twice so far today - and not green!!! Yay!!  That means the old stuff is well on its way of being cleaned out!

Tomorrow morning Saxon will be getting another scan of his tummy done so we can see how much "stuff" is still sitting in there.  (Yup - they're sending me a copy of the scan, haha!)

We have a plan of attack:  For about the next 10 days, we're going to be giving Sax 2 doses of Miralax - once in the morning, once in the evening.  After that, we're going to a maintenance plan of Miralax 1x per day every day instead of only as needed.  We're being proactive to prevent any more constipation with him.

Hopefully we won't be having many more 'crappy' conversations any time soon!

Friday, May 4, 2012

Waiting and waiting and waiting....

Dr P and Vicki decided at 11:30 we needed to change his dosage from 6 syringes given every 1/2 hour-hour we are going to give him 1 syringe every 10 minutes through his tube.  I went to get Vicki after Sax got his noon dose because when he looked at me as I was adding it, he looked like he was going to throw up on me :(  And he said his tummy hurts now.

We had picked up some lunch about 11 - he got a grilled cheese and bacon sandwich, fruit, and chips.  He's still eating good, and he did pee.  We're pumping him full of OJ and water too to keep him from getting dehydrated.

Vicki just came in after we had her paged.  Sax was complaining that his tummy was hurting.  We're going to give him a break for about a half an hour while the Golytely does it's job.

TMI Moment:

According to our nurse, the way that Golytely actually works is by breaking down all the stool that is packed in there and making it liquidy, which helps it come out easier.  Dr P said everything in there is really pebbly right now, which is why Sax is have wet gas and it is coming out about this color green.  Ewww!!!

As I was typing this entry, Sax started yelling "I got big news!!  I got big news!!"  Daddy asked what his big news is... "I'm going poopy in my diaper!"

I'll bet the nurses were laughing at the site of us - I jumped up and grabbed Sax's hand and took off running down the hallway.  Vicki had said that there was a bathroom at the end of the hall so we wouldn't have to go out to the main corridor.  I yelled "Vicki, where's that bathroom?!?!?"  She started running, with me and Sax running behind, and Scot bringing up the rear with the diaper bag to get the little man in there.

He didn't go once we got in there :(  But his tummy is starting to gurgle and make noise!!  That's a good sign that the medication is starting to work!!!

Sax's First Tube (hoping for a crappy day)

Well, we are at the hospital, which means there was no progress at home with his Golytely and enemas.  Sax didn't want to come here (we didn't really either, but as a parent you do what you gotta do for your kids).  On the way he had a few (excuse the term) "sharts" but nothing other than that. 

The plan for inserting the ng tube was for Sax to sit up with one of us holding him and Vicki would just slide it right in his nose and down to his tummy.

Yeah right! Our kid isn't going to be that easy!!!

It turned into me wrapping him (swaddle-like) in a blanket, Scot holding his legs down, a nurse holding him from behind, and me pinning down his hands while he kicked, screamed, fought, and spit at us!  Man does this little boy have spunk!!!!

We have the tube in now and have administered 4 oz of Golytely through it.  Sax has even been helping to insert it into the tube.

Every half hour, we're going to insert another 2 1/2 oz, so hopefully we'll be making progress soon!!

Right now, him, Daddy, and Buppy are snuggling on the couch watching Cars.  This exam room is pretty much gonna be our room as long as we're here today. 

At least we have a beautiful view.

Where the river is in this picture is pretty close to where our Great Strides walk is going to be tomorrow

Please keep him in your prayers....

Thursday, May 3, 2012

"Going" Nowhere (more crappy conversation)

**Disclaimer** this will be another "toxic" conversation about the joys of cf poopies - Nose plugs required beyond this point!!

Last night we implemented the new plan of attack.  Sax was drinking the Golytely with his PediaSure.  After Daddy got home and we'd eaten supper, he had a small, very mucusy/stringy poopy.  A little later we gave Sax his first enema.  He didn't fight us too much - he laid on a towel on the bathroom floor, Daddy held his arms and legs in place, and lucky Mommy got to administer it :/  Not on my list of favorite things to do, but right now I'd do about anything to make my little man better.

After a few minutes of laying on the floor, Sax wanted to try sitting on the big potty - until he got scared.  So we put him on the potty chair.  He did end up getting some out - but just a little more than the amount of liquid we put in :(  To get him to stay sitting on the potty a little longer, I decided he needed a haircut.  The weather is getting warmer anyway, so it's time for a summer shave.

Posing to show off the new cut :)

Daddy bribed Sax with beef jerky to get him to drink more of his "kool aid" plus he drank another whole glass of PediaSure.  We thought for sure we'd be up all night cleaning up diapers!  While snuggling with Daddy, Sax was acting like he had to go again.  Poor little boy went to sit on the potty even though he'd already gone a little in his pull up - but it wasn't what we expected to find.  Instead of super stinky poo, we found a ball of mucus!  I hate to think how much of what we saw on the scan is actually just that super sticky nasty mucus!!!

So there was no progress made the rest of the night last night.  For as much 'stuff' that is crammed/packed in there, he should be pooping a whole lot more than what he's done!  I still don't know how he's not in pain!!!  He's still eating decent!  If by 3pm he hasn't made more progress, then we go the next step and we'll be at Mayo tomorrow.

From the motherly standpoint, this is honestly freaking me out.  There are so many complications that can arise from intestinal blockage.  They are saying he doesn't have any blockage from what they can see, but with how incredibly bound up he is, I'm not completely sure.  It sucks anyway when there is something wrong with your child and you can't do anything about it, even if it doesn't seem to be causing him any pain or discomfort at this point beyond a low-grade fever.  But with everything that happened with Baden and his intestinal blockage..... enough said...

Wednesday, May 2, 2012

What a Bunch of CRAP! (a continuation of crappy conversations)

For those who may be weak of stomach, this is another one all about the poop - such is the life of a CF mom!!!

Sax had a bit of a poop last night, but nothing compared to his normal.  When they told me he was packed in, I told Vicki I just had to see it!  Yeah, morbid, but I'm getting pretty good at reading scans, so I wanted to give it a go.  I'm sure even if you can't or haven't read scans before, you can probably tell what this is....

All those wonderful bubbles on there are gas :(  Which is not coming out!  He's still not drinking the Golytely with the koolaid, so now we are mixing into his PediaSure, even though that's not generally recommended. But right now, we're in a state of "whatever it takes."  Vicki suggested I give him some more Miralax too, but I'm a step ahead of her on that one!!

After talking to Vicki, and her relaying the information to Dr P, we have a new game plan.

1) PediaSure mixed with Golytely - adding as much as he'll stand.
2) Pediatric Fleet Enema - administering round 1 tonight
3) Pediatric Fleet Enema - administering round 2 tomorrow morning
4) If progress is not being made at that point, contact Vicki's office for a 9am appt Friday
5) Friday morning - insertion of an ng tube and administration of Golytely through that. (note to self - bring jug of Golytely with if we go over so we don't have to buy more)

The hope is that once his colon is cleaned out via enema, hopefully he'll be able to go.  If he hasn't gone a significant amount by tomorrow at 3pm, Vicki will insert the ng tube, then we will have to spend most of the day walking around at Mayo.  That way, if he pulls the tube out, she can reinsert it.  He won't be able to actually come home until he starts going more, and if he doesn't go after THAT, then he'll be admitted and more drastic action will need to be taken.

So I guess we're praying for a crappy night tonight!!!

The Struggle

It's barely the beginning of Saxon's first full day on Golytely and we're already fighting.  

He wants his P-sure, not the "grape kool aid" and he's being quite vocal about it.  I'm bribing him with his new favorite snack to get him to cooperate - marshmallows!  There's not much for calories in them, but hey, whatever works!!!!!

He's still running a mild fever, but the doctor's office said that's normal with this high of a level of constipation.  Sax is also being super whiny and clingy, which may be because of tummy ache.

He hasn't gone yet today, but he's starting to get a little gassier.  In spite of the fighting, he has drank almost 1/2 a glass of his Golytely... I'm wondering how to get the full liter down....

It's gonna be a long - and hopefully "crappy" - day!

Tuesday, May 1, 2012

Over Packed (another crappy conversation!)

My CF family understands, but a word of warning to the rest of  you who aren't used to it - this literally WILL be a crappy conversation, as much of the CF life is centered around bm's and all the joys that go with them.  So if you have a weak stomach, you may not want to proceed!!

Turns out we're not going to Mayo - at least, not yet anyway.  After talking to Vicki this morning and not seeing any progress past the two little nuggets yesterday, Dr P decided that Sax needed an abdominal scan so we can see what's going on in there.  The order was sent to our local clinic to save us the hour drive unless it was necessary.

Sax was GREAT for his x-rays.  I noticed his abdomen seemed a little more distended than it did earlier this morning.  We had to wait a few hours to get the results from Rochester.  And, being the sadist I am, I asked that they send me a copy of the films.  Morbid, huh? But she is sending them via email tomorrow!! Haha!

What did they find?

Poor little man's entire colon is packed full.  Then there is a pocket of gas.  Then his lower intestines are packed full too.  My poor baby :(

I guess the good news is that all the poop is just packed and there is no obstruction.  From the looks of the picture, I'm told, it looks like some of it is quite old.  Which mean it, like his gas the past few days, will stink to high heaven when it finally comes out.

Of course, I asked right away if we're doing an enema or what the plan would be.  Unfortunately because of how unbelievably sticky CF poops can be, Dr P said it would be in effective.  So instead, we're trying something called Golytely.  Normally it's given to adults before a colonoscopy and apparently has an awful taste.  The usual dosage is 1 L over 24 hours, but we're supposed to try to give him 1 L over 12 hours (or however quickly we can get him to drink it).  It can dehydrate him, so we have to give him other beverages in between.  We were told he most likely won't want to eat much and he will probably have some stomach cramping - but it's better than the alternative!  He can be on this up to 3 days, and is supposed to continue it until 'stool is clear' - ie, he's basically pooping water :(

It has a slightly salty smell to it and Sax doesn't really seem to like it much.  We were going to wait until tomorrow to start it, but I think it's worth Mommy missing out on a little sleep to make my little man feel better.  We were told to add some sugar-free KoolAid to it to help with the taste - Vicki suggested Cherry or Grape covers the taste well. 

We are supposed to add it directly to the Golytely one sippy cup at a time.  They also said it tastes much better served ice cold, so we even dropped a couple ice cubes in there.

With doing this 'clean out,' I am a little disappointed though.  We have Sax pretty much potty trained until he started having trouble pooping.  We had to buy some more pull ups (Walgreens brand, which we love!), baby butt cream just in case, and wipes.  We were warned that the first couple will be pretty normal poops for him, but they are going to get looser and looser until he basically will have no control.  This will really help with the clean up part at least!!

The little bit of the Golytely he's already drank tonight has helped - he had his first poopy! It wasn't very big, but still, it's progress!!!! Yay!!!!  

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!

Thursday, January 26, 2012

You're a CF Mom (part 2!)

Here's part 2 of the CF Mom series - lol!!

You know you're a CF Mom if................

You can talk about the smell, color and consistency of poop while you're eating and not think twice about it

You can make recommendations from experience that can greatly improve others' first hospital stays

When you go on a trip, you have to have a separate bag for all of your CFer's meds, and it's about the size of your CFer's suitcase

You feel sorry for the lab people at the clinic - they don't know what they're in for when they open that stool sample!!!

You kind of fear potty training because you KNOW how awful those poopy training pants are going to be to deal with!!!

You babysit another little one, and you start looking for their enzymes and meds at feeding time

You forget what it's like NOT being a CF mom!

You try giving the receptionist at the doctor's office your CFer's info instead of yours because it's just a habit.

You have more doctors' phone number programmed in your cell phone than you have family members.

You can drive the 1 hour drive to see your CF team with your eyes closed.

You don't know your child's weight in pounds, just kilograms, since that's how the clinic weighs him.

You get really excited when your CFer decides to eat a stick of butter like a banana :)

You don't know the everyday, common names of a lot of medications since your child has been on so many generic variations that the technical name is easier to remember.

You 'sniff' strangers the first time you meet them to determine if they smoke or not.

At doctor appointments, your CFer's doc hands you a list of meds for you to look over because reading off the list takes too long and too many are difficult to pronounce.

You're excited when your CF is only on 5 medications.

You send your CFer to someone else's home with a 'care sheet' so they know when/how to administer meds, even if they're only there a few hours.

You have your CFer's clinic number memorized.

When people ask how your CFer is, you ramble on using medical terminology about throat cultures and medications and forget the other person's life doesn't revolve around hospitals/clinics.

You have extensive experience fighting with insurance companies - and generally end up winning.

You become a respiratory illness expert.

Wednesday, January 25, 2012

The Results Are In....

Vicki called us with Sax's polyp and lavage culture results.  We were hoping he wouldn't culture much, if anything, but we weren't that lucky.

They found a tiny bit of strep, which they aren't worried about, but he cultured staph again along with haemophilus influenzae.  It seems like he cultures this more often than not when he has this throat cultures.  Dr P decided to do a course of 2 weeks on amoxicillan 3x per day, and gave us a refill also.  Sax is scheduled for a followup with Dr Cofer on Feb 3.  We are supposed to ask her if we will need to go a 3rd week on the amoxicillan.  Sax's eye has been gooping up a bit, but Vicki figured the same as I did - it's from his sinuses being clogged as they're healing, and the antibiotics should clear it up. 

Sax seems to be feeling more like his old self.  He was a little feverish the other day, but now seems to be better.  We've discovered just how much he needs his naps though.  It's hard to handle his tantrums on days he hasn't napped. :(

Monday, January 23, 2012

Road to Recovery

We got to go home late Thursday morning.  I was too tired to update then and have been trying to catch up on sleep and taking care of a crabby Saxy since we've been home.  Dr Cofer said they removed a lot of polyps and 'gunk' from his sinuses, put tubes in, took a sample from and flushed his lungs, and are culturing the samples from his lungs and his polyps.  Once the cultures come back they will decide what antibiotics to put him on.  She figured he will probably be on TOBI again for a while. 

Sax is having some discharge from his ears still and a little bleeding from his nose.  He's supposed to be taking it easy, but what 3 year old does that???  When he's playing too hard, or gets worked up and crying too much, it makes his nose bleed.

Some of his meds have changed for now:

At least until his next check up, no:
MADdy nasal rinse

New meds:
Saline nasal spray (4x per day)
Pain reliever/fever reducer (every 4 hours)
Medicated ear drops (5 drops, 2x per day, for 5 days)
Albuterol Neb increased (4x per day)

He's supposed to go back for a checkup in 2 weeks, then a repeat audiogram in 6 weeks.

Sax took his Buppy in with him for surgery, so Buppy got a new 'collar' for surgery (since the wrist band wouldn't fit his arm.)  When the nurse took the IV out of Sax's hand, though, he didn't put pressure on the hole right away and blood gushed across Buppy's back.  I got most of it cleaned up.  Buppy is going to need a bath.  But here is a picture of him and Buppy snuggling on the couch once we got home....

Hopefully, once the swelling goes down from his surgery, it won't look like he has 2 black eyes all the time anymore.

Hopefully he'll be healed enough to go outside and play too.  We've finally gotten snow!!  Can't wait to take the kids sledding and build a snow fort :)

Thursday, January 19, 2012

Asking for a Prayer

Everything went well with Saxon's surgery yesterday, but since it was so late he ended up being inpatient.  We're still at the hospital, I'll update about the surgery and his new meds when we get home, but I'm asking for prayers for Sax.  A bladder scan shows that, even though he hasn't peed yet, that his bladder is full.  He had a barely damp pull up last night and, in spite of IV fluids, still hasn't gone today.  He also hasn't eaten and has barely drank anything.  He won't be allowed to go home until he eats, drinks, and pees.  Please keep him in your prayers.  We'll all anxious to go home - no one moreso than Sax..

Wednesday, January 18, 2012

Ready To Go

We're sitting in the waiting room right now waiting to for Sax to get called back for what is going to be his 4th surgery in less than 3 years.  He is having a nasal polypectomy, bronchial lavage, bronchoscopy, and having tubes put in his ears.

I was really irritated when we called for his report time last night.  Normally he has to be at the hospital around 6 or 7 am when he has his procedures, especially since he has to fast.  Well, we didn't get that lucky this time :(  His report time was 12:30 pm!!  How do you tell your 3 1/2 year old child that he can't have anything to eat or drink?  I think it's just cruelty!  So, being the 'good mommy' that I am, I kept Sax up as late as I possibly could and sent Daddy to bed (ONE of us needed to get some sleep...)  I got him in his jammies, gave him some loaded PediaSure (DuoCal plus Carnation Instant Breakfast chocolate), got him a few snacks, and turned on the Wii.  He and I played Monster Jams until about 2am!  I figured, if he couldn't have anything to eat after 4am, I'd just let him snack all night.  Letting him play on the Wii ensured he stayed up a lot later, too.  I reasoned that the later he stayed up, the later he would sleep in the morning.

And it worked.

I got out of bed a little after 9 this morning (courtesy of my two fur babies) and went downstairs to find Sax sound asleep on the couch.  He had gotten up a little earlier, but after Daddy walked with him for a few minutes and then turned on cartoon, he crashed.  He slept until I got him ready to go about 1030.  The whole ride to St Mary's, he was pretty quiet too.  Sax just looked out the windows and pointed out all the semis he saw.

He just asked for a PediaSure when we were getting his vitals taken.  I promised him that after he 'does a nebby' for the doctors, I'll give him some M&M's and a chocolate PediaSure.  We brought Buppy with us today too.  Buppy is going with Sax for his procedure and even has his own wristband (around his neck since it wouldn't fit his paw).  I'll post a pic of him after we get home...

We have about an hour wait still.... So he won't go in until around 130.  The procedure is supposed to take 1 hour 45 minutes.  His last one was supposed to be 1 hour 30 minutes, but took 3 hours... so we'll see what happens.  They said if we don't hear anything after 2 hours to ask at the desk.

Sax and Daddy are playing monster trucks to kill time and to keep Sax distracted.

I'll post after we know more.  Just keep him in your prayers for now....

Saturday, January 14, 2012

Always Playing Catch Up...

So it's been a while since I have updated this.  Sometimes life gets in the way.  Sometimes there's just nothing to say.  Sometimes it's just too hard to say what you really want to say.  I don't know.

It's been a rough few months.  Sax became a big brother on November 12, 2011, then we lost our Little Warrior on November 20, 2011.  It was a very difficult time for all of us, even though Sax doesn't completely understand all that happened.  You can read about Baden and his life and struggles at  Sax tells us often that his brother is an angel and has wings in heaven.  He also tells me often that he misses him.

Saxon really hasn't had too much happen (other than a couple minor colds) to write about until now.  Christmas was nice and quiet, thankfully, and we got to spend it with our family.  Here's a nice group pic :)

We spent 2 days this past week at Mayo.  On Tuesday he had a full day of appointments, plus Mama had a morning checkup (which went great!)  Sax's first appointment was at 7am for a fasting blood test.  Raine stayed at Aunt Abbey's so that she wouldn't have to get up so early to be dropped off.  I was up at 330 and couldn't get back to sleep.  We had to leave about 5am anyway.  Daddy and I couldn't have anything to eat either because it wasn't fair to Sax.

I have a problem with needles, so Scot went in with him for his blood draw.  He is such a trooper!!  When they stuck him with the needle, he said "Ouch."  After a minute or so, Sax said, "I wanna be done."  Then when they took the needle out, he said "ouch" again, then asked if he could have some stickers now.  That was it.  No tears, no fighting or fussing.  (Must get that from Daddy - hahaha).

Daddy took him to the next appointment - for his chest x-rays - without me since I was at my appointment.  Sax didn't want to put the hospital shirt on, but sat just fine all by himself and posed for his x-rays.  He's NEVER been as cooperative as he was Tuesday!!  Such a BIG BOY!!! (Although it is sad that he is so used to the procedures that he knows what to expect....)  I also didn't make it back from his audiogram, but apparently that was better than it had been in December.  (He had an ENT-only appointment in November, where he practically failed his hearing test and we found there was fluid behind his ear drums again.)  Sax knew what he had to do and was having fun flinging frogs, trains, bugs, and other miscellaneous items around the room when he heard the beep (yes, he was supposed to be flinging them.) 

I met up with "the boys" right before the appointment with Dr Cofer, his ENT.  Her assistant checked him out, then she checked him out.  There is still fluid behind his ear drums.  His sinuses under his eyes are swollen and it looks like he has bags under them.  There are also a few polyps in his nose again in spite of using Nasonex.  She is going to put another set of tubes in his ears and remove the polyps.  She ordered a head CT to check out his sinuses and see if there are any deeper polyps and to see if his sinuses are opening up.  We warned her that Sax does NOT like the CT machine, so she also ordered sedation for him.  The CT was scheduled for Wednesday and surgery scheduled for Wednesday, January 18th.

The last 2 appointments for the day were with the CF team - Vicki and Dr P.  Vicki did the usual checkup except for the throat culture.  When Sax has his surgery next week, Vicki and Dr P have requested a bronchial lavage, so they will do the culture then.  We watched Cars 2 while waiting for Dr P.  Sax fell asleep and stayed asleep through the entire appointment.  He listened to Sax's lungs and looked over the x-rays.  His upper lungs have cleared up quite a bit.  The deposit that Dr Henry has pointed out didn't seem to be showing up any more either. 

We really think switching the Pulmozyme back to morning may be helping :)  I've also been using the Wii Fit to bribe Sax to do his morning treatments - after thumpies and nebbies, he 'gets to' run after a puppy.  He has fun and exercises his lungs a little more!

We were also very happy to find out that his weight has increased - he's up to 15 kg!!  That's the highest he's ever been!!!

Wednesday we went in for Sax's CT - and that was a mess.  We were told he needed to fast because of the sedation.  His appointment was at 8 am.  About 9 am the technician finally came to get us.  They weren't planning on sedating him and just wanted to strap him to the table.  We knew it wouldn't work, but just to show them, I tried laying Sax on the table.  He freaked out!  It was like trying to hold down a wild animal!!  I told the tech - again - that he was supposed to get sedation! 

I don't understand why they weren't ready - it was noted on the appointment sheet we got.

We were sent back to the waiting room.  A few minutes later a nurse came in to tell us they were waiting for the anesthesia team.  Because of Sax's CF, he can't have the regular sedation.  The CT team apparently didn't know this, even though it was in Sax's orders - grrrr!!!!  We were moved to a private waiting room until 1015 when they were FINALLY ready.  By this time, Sax was extremely upset because he was hungry and thirsty.  I don't blame him!  He hadn't had anything to eat since 7pm!

I feel bad about lying to Sax to get him to take the anesthesia, but it had to be done.  We were back in the room with the CT machine, and he was getting scared again.  I told Sax that we were going to do a nebby treatment so he wouldn't be afraid to put on the mask.  This did the trick - within a couple minutes he was sound asleep.  He needed an IV as a precaution with the anesthesia.  Then it was another hour at the hospital while he was coming out of it.  He wasn't completely up to par until later in the afternoon. Sax was suffering from motion sickness on the patient shuttle when we went to pre-register for his surgery, and then in the van.  Since his stomach was empty he was just vomiting up mucus and stomach acid.  I felt so awful for him.  Around 3 we finally got him to drink a little water and eat a few crackers.  Later in the afternoon/early evening, his appetite picked up and he ate some more food.

I'm sure I won't have a chance to write again until after his surgery, so it will be Wednesday night or Thursday, depending.  The surgery is planned to be outpatient, but it depends on how deep into his sinuses Dr Cofer has to go.  We were told to pack a bag just in case....