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.

Wednesday, April 28, 2010

Did someone say bubbles?

The weather has been beautiful the last couple of days!! We have been taking full advantage of it and working Saxon's lungs at the same time. I decided it was time to start sorting out and getting rid of a bunch of stuff in the basement, so I turned Scrappy Man loose in the yard. He LOVED it!! The pollen count has gone down, so he's not as stuffy as he had been. He has started wheezing again, but after talking to Vicki yesterday, we have him back on Pulmozyme. Sax is getting a nebby of albuterol in the morning and a nebby of Pulmozyme at night. He's been a little wheezy though. I'm not too concerned since he is getting his meds and he's plenty active. If he gets lethargic then I'll start worrying. He found out how to open his sister's bottle of bubbles too!! hahaha!! Bubbles are almost as good as balloons!!

Monday, April 26, 2010

First Fishy!

Scrappy man has had a busy weekend! We went fishing again on Saturday. After sitting in his stroller playing with his fishing pole for a while, he decided he wanted out of the stroller and wanted to sit with Mommy. That was a good and fine. Every time Mommy cast, Saxon decided he wanted to reel in Mommy's line since it was in the water and his wasn't. And wouldn't you know!! The little turkey caught something!! We were getting ready to call it a day - Raine had caught a small walleye, which she had been VERY excited about, but that was it - Sax had just finished reeling my line in. I was lifting it out of the water and thought I was caught on a rock or weeds or something, until I heard splashing. I took a good look at his fishy - he caught a bass!! I must be teaching my kids good!!! :-)

Sibling rivalry has also resumed in our house. Anything one has, the other wants and fights for. And Saxon beats on his sister. And Raine pulls and hangs on Saxon. Last night he head-butted her right in the mouth and split her lip! It bled pretty good for a while, but we got it to stop with a cold washcloth and pressure. Then tonight after supper, Raine was trying to clean up her coloring stuff - markers, paper, etc. - and Saxon decided to jump on her back and was choking her. Pull him off, tell him Not Nice and swat his diapered behinder, and set him away from her. A couple SECONDS later, he's back at it again! I had to put him in timeout again, and he just sits there and SCREAMS or bangs his head. The rain is supposed to stop tonight, so I should be able to turn him loose outside to run run run, or in his words 'go go go' and 'go side.'

Sax has 2 appointments coming up in May in Rochester. We're supposed to go see Vicki and Dr Pianosi, the pulmonologist, on May 3rd, but we got a call today to reschedule because Dr P was called away. Saxon's appointment with them has been postponed to May 21st. They'll listen to him and do chest x-rays. On the 14th we go to see ENT and have another hearing test to be sure the tubes are working like they're supposed to. And hopefully the nasal polyps are staying GONE!! We are hoping he isn't going to need surgery for that again for at least a few more years.....

We are going to be in Rochester this Saturday, May 1. This will be our 2nd year walking in the Great Strides walk. Last year Sax didn't ride the best in his stroller, but this year should be better. Raine walked the entire 10k (6.2 miles) last year!! Maybe she can make better time this year. She is bringing a friend of hers with, so that should keep her busy. We have a different group walking this year. A few of the same from last year, but some newbies too. And this year we have our own custom t-shirts for the team. Scot is already talking about next year's shirts, but I think these will be ok for at least another year. It's great, too, because not only do we all match, but when we have our fundraisers, it's easier to pick out who's working and who isn't. We have extra shirts that we are selling for $20 each - $15 to cover our cost, and a $5 donation to the CF Foundation. Our team has raised somewhere around $850 right now. That's just what I've counted in our team account and online donations. We're still short on our $3,000 goal, but we still have some time. Maybe we can sell some teddy bears at the walk??? Or some roses?? Katherine from the Foundation said a lot of people were interested in them around Valentine's Day. Our team is going to go out for lunch after the walk to plan our next fundraisers and discuss where we're at for fundraising. Olive Garden is sounding like the winner!!

Well, it's 1125, the Scrappy Man is sleeping, and so is the rest of the house, save for me. Gonna have some QUIET time to watch tv before I head to bed.... Night all!!

Friday, April 23, 2010

Rainy Days...

Today has taken a toll on Saxon by him being inside all day. His temper tantrums aren't getting much better. Daddy got a taste of them this evening. Our Monkey Man has been climbing all over and trying to climb out of his crib and his playpen. The newest climber for him is the toybox. We had to put the toybox in front of the entertainment center so Saxon wouldn't open the cupboards and pull all the movies out, and to keep him from pushing the buttons on the tv. That worked for a while. But not any more. Now he climbs up on the toy box and tries pulling everything off of the entertainment center. There isn't anything safe anymore!!!

Our little tornado took all of his toys and threw them all over the living room right after we got done cleaning up all of the toys. Our living room is a disaster zone now!! Raine, our little antagonist, has been provoking Saxon like crazy today.

Saxon has finally started fighting back. First he hit her in the face with his toy dump truck and made her cry a bit. Then he decided it was time to whip around a bead necklace he got in NOLA. That thing HURTS when you get hit with it!!

He has been throwing his squishy ball AT people too!!

And no one is free from his anger, either!! He's been taking it out on Abby-cat even!! She got a good yanking on her tail. Poor girl! I really think Saxon is missing his friends at daycare and that may be why he's been so temperamental... He misses not having any other little kids to play with besides his sister. I'm really looking forward to being at the cabin this summer. There are plenty of little cousins for him to rough house with there...

We got a call from Vicki, our cf nurse, today. The rest of the cultures from Saxon's surgery in March came back now. Saxon is growing three different types of yeast in his lungs. One type is from being on antibiotics almost all the time. One type is just environmental. I don't remember exactly what she said the third kind is. But Saxon is going to have to go back on an oral antibiotic again, but this one is only once a day. That shouldn't be too bad. And since it's a fairly common antibiotic, it shouldn't be too expensive either. That's another plus!! Hopefully the little man doesn't get sick again any time soon!! He's scheduled to go to Rochester for his next checkup with the ENT on May 3 and his next CF checkup on May 14th... I'm really hoping it all comes back clean - that would be the BEST Mother's Day present.... here's to hoping!! Now the little man is nebbying with Daddy - hope daddy has better luck with him than I had this morning!!!

Thursday, April 22, 2010

Undiscovered Talent

I tried my best to wear Saxon out yesterday. And Raine. We walked to pick her up from school, then walked around the lake which is about 5 miles. Fresh air is good for the little man!! Unfortunately, the pollen counts are high and Sax is 'predisposed' to having allergies. Scot has them, and I only had hayfever, but now have developed allergies. Our house is MISERABLE when everything is in bloom!!

Saxon is done with his TOBI for now... 21 days with the TOBI nebulizer. We haven't tried out the new nebby the pharmacy sent us because we still had some of the last TOBI left. We don't think Saxon will tolerate the new nebby very well either. I actually don't think he's old enough to understand how it works. With the current nebby, he puts the end of the cup in his mouth and inhales the medication, or we put it by his face as he's drinking his sippy cup. It takes about 15-20 minutes to do his nebby. With this new nebby, it's inhaled nasally and supposedly only takes a few minutes. However, he has to inhale the medication and hold it in for a minute. He's not going to be able to do that yet.

Starting tomorrow, we're back to Albuterol nebby's twice a day. I'm not sure if we're supposed to be doing the Pulmozyme again or not. I guess I should call Vicki, our CF nurse in Rochester, tomorrow to see what she thinks. Hopefully the answer will be no. Saxon's medical regimen is:

3 Creon 12 capsules with each meal/snack
1 ml Zyrtec once daily
1 ml Zantac 3 times daily
1 vial Albuterol 2 times daily
1 ml AquaDEKs multivitamins daily

Plus his couple of beatings. He's actually pretty low for his quantity of meds right now... Which is a good thing!!!

Well, my DARLING, ADORABLE little man has found a way to SERENADE his mommy.... He played his song for mommy last night - kind of an early birthday present. His instrument of choice - a TEAPOT. Yes. A new purpose for a girl's playtoy. He 'plays' the teapot by putting the spout into his mouth, and humming/yelling through it. And "shhh" means "crescendo." I know Saxon is just practicing for his big debut. We have a musician on our hands! His sister thinks she's a singer, so maybe the kids will start their own band!!

Wednesday, April 21, 2010

Terrible Two's? Not for a couple months still, right?

Whoever came up with "terrible two's" missed the mark. Or Saxon thinks he's already two. I'm not sure what is causing his attitudes, unless it's from not being with all the kids from daycare. I need to set up a playdate or two for him to see how that would go. Poor little man. Not knowing how to channel his energy!! Poor mommy and sissy!! We're getting the brunt of it!! I'm working really hard on teaching him how he SHOULD be acting. Pulling out Sissy's hair is NOT ok. Hitting Mommy with toys and throwing them at Mommy is NOT ok. Throwing food is NOT ok. Been trying to help him find constructive outlets. Bought some tennis balls since he likes to throw balls. They're just the right size, but not too hard. Turn him loose in the yard and let him RUN!!!! I'm trying. His tantrums with his headbutting is not getting any better!! He has so many little bruises on his forehead he looks like he's been beaten!! I'm hoping he stops doing it and his forehead clears up before we go to his next appointment in Rochester.

The kids and I went fishing yesterday for the first time this year. Saxon's first time ever!! Got him his first fishing pole - Spiderman. They didn't have any other options for poles. I just tied the little fishy weight on the end of his line, and he had a high ho time playing with it!! He'd swing it around, push the button, let it drop down, then reel it back in! When I caught a little crappie, Saxon got excited and started squealing. I held it in front of him, and he reached out and touched it, then started squealing even louder and giggling. He LOVED it!! I'm going to have to take him fishing again!! I was surprised that he sat so well and just played with his fishing pole...

Sax has finally fallen asleep. 2 hours now to do whatever I need to do. Need to start planning our next Strides for Sax team meeting. Need to se tthe date. We only have 10 days until the walk. Hoping we get some more donations before the walk. Our next fundraiser isn't going to be until afterwards. Still brainstorming on ideas. Trying to find something that won't cost us anything or little to sponsor so that we don't take another loss. I'm really liking the auction idea... just gotta see what the team thinks.... Thinking a Poker Run would be low cost for us, too, so just gotta see what we can do!! I'm open to any other suggestions anyone has!!

Monday, April 19, 2010

Headbutts and AC

Sax was quite the handful today!! From not wanting to get dressed when we took Sissy to school, to throwing cookies across the living room!! He was occupied, happily, playing with his big blue truck - if he could slam it into the tv. Ok, it's partly our fault. The truck only makes noise when the front end crashes into something. But the tv? Really. No Saxon, SpongeBob does not want to go for a ride in your truck. He's not coming out of the tv to play! He didn't take much of a nap this morning. He snuggled on Mommy's lap and watched SpongeBob for a while and slept ON me (not that I minded - I caught a few winks too!!) until the phone rang. Just the pharmacy calling to make sure his TOBI was going alright. Time for lunch after that anyway. Beans - yummy, pulled pork - didn't touch it. Cookie! Cookie pwease!! Cookie goes flying off the tray 2 seconds after I set it down. TIMEOUT!!

Put him in his pack and play. Little turkey knows how to manipulate us though!! His poor little forehead is covered with bruises. To try to get OUT of the playpen, he headbutts the bars on the side, making himself cry and saying Ow!! At first I fell for it and took him out when he started doing it. Now he does it EVERY time he doesn't want to be in there. He's smart!! Can't believe how quick he picked up on that!!

The summer I was pregnant with Saxon, 2 years ago, our AC stopped working. Not sure what was wrong. The compressor would heat up and the fan would blow, but no cold air would come in. I was big a miserable, having a July baby!! Spent my time under the ceiling fan with oscillating fans going. Last summer wasn't too hot, so we got lucky with that. Called the AC guys today, though, cuz looks like it's going to be a HOT summer!! Surprising, I called them after 3, and they still made it here this afternoon and got it fixed... but the major shocker was the cost!! If I would have known it was only $112, I would have done it before! Live and learn!! Our nurse had suggested, though, that it may be possible to put it as a 'medical expense' since it is a necessity for Saxon to have. I'll have to check into it....

Sunday, April 18, 2010

Disasters - over and over again....

Trying to find the humor in the situation. There's gotta be some, right? We slaved and slaved away for null results....

Strides for Sax held our second fundraiser of the year..... It was looking to be a big one for us to follow up the sloppy joe dinner in March. We were serving pulled pork sandwiches or hot dogs, chips, baked beans, and beverages. We had a bake sale to go along with it. I spent 3 days myself just making candies, fudge, cupcakes, cakes, oyster crackers, and other goodies for the fundraiser. Several others made goodies for it too. It was held at the Union Center here in Albert Lea 11-3. We had ads in the Tribune and Shopper, KAAL TV, Visitor's Bureau, Tribune Weekend Planner, and posters almost everywhere, plus the word-of-mouth advertising for over a month. Everything looked like it was falling into place. We even got the rental fee waived for the Union Center. Talk about Great!!!

Then it was Saturday....... I was up early, had the car packed.... ready to go get the buns for the lunch. Got to Hy-Vee, gave them my name - No one knew anything about them!!!! First bad sign. 1 customer service rep, 1 bakery call, 2 intercom pages, and 3 managers later, and the buns were tracked down. Yes, I ordered them in advance. About a month ago. I talked to Steve. Oh? Steve didn't say anything or leave a note?? Here's my receipt, I paid for them yesterday. He said they would be here after 6 am. Tom rang me up. Is he here? Half hour later and I was on my way to the Union Center. Damn, I'm running late.... I had the key, supposed to be the first one there.... Oh, no one else is here yet!! Need to get the food started!!! Grabbing the roasters, put pork in one, hot dogs in one, beans in one...

Mandi was the next person there.... she had brought some of the buns that wouldn't fit in the car. She, Raine, and I hauled the stuff in. Mostly them as I was trying to get food going and coffee made, etc. This meat doesn't seem to be getting very warm. The roaster was warmer earlier. The beans are ice cold!! The hotdogs aren't warming up either!! What the?!?!?! More of the team started arriving. I told them what I had been doing and everyone jumped in and started getting ready, finishing setting up the bake sale... But why wasn't the food warming?? And the CD player isn't working???? Tripped a circuit. Try another outlet. Another circuit!! On and on!! I can't even count how many times we tripped the circuits!! My small roaster was doing fine heating up the pork - until I plugged in the coffee maker!! Tripped another!! Pretty soon it's 10:45, my sister is on her way to pick up food for her coworkers, and nothing is done!! We got the hot dogs and meat going finally. Beans are cold - throw them in the nuker!!! CRAZY!! The beans were STILL cold when our first customers showed up.... fortunately it was someone I knew, we nuked more beans - crisis averted!! Supposedly....

We didn't expect a huge rush right at 11. After all, the Family Fun Fair was going on at the mall. And the Fountain Lake 5 run. We figured people would start showing up after the run and on their way to/from the fun fair. Oh, here's another couple coming in!! Oh, we know them too.. My Great grandma and cousin. A little later - oh, here's someone else!! It will get busy. We still have some more time!!

A flop. A disaster. How else to describe it.... unknown. Our total turnout: 10 customers (not counting the 10 takeouts). After all of the advertising we did and all the work that went into it, and running to Northfield to get the t-shirts the night before, it was a hard blow to us all.... Now to recover from this.. disaster. The team is rallying together and brainstorming.

Only 2 weeks until the walk. Next fundraiser won't be until after then. But then after that, we have a few more ideas we may try out.... If the team hasn't lost heart. But our team is great. Don't think a little bump will deter them much!!

Thanks to the team for all their work in spite of the lack of turnout!! Erin, Brian, Steph, Brandon, Scot, Saxon, Raine, Damion, Zack, Sam, Mandi. You all did fabulous!!