Lesson Learned

9:30 pm.  Bedtime?  Nope - it's bath time.  Why, you may ask, am I bathing my little man at 9:30 pm?  Well, we learned a very important lesson tonight.  Saxon cannot have anything to drink before doing treatments either...  We didn't think food would be a good idea, but we didn't think too much of him having about half of a sippy cup of PediaSure before doing his vest and nebby. 

Saxon and Daddy were sitting in Daddy's chair.  He did his nebby and vest... he was getting restless as usual.  Daddy was getting him to sing, and Daddy was singing the ABC's as usual.  Sax got all done with his treatments, came over and gave Mommy a high five, as usual, and went back to sit on Daddy's lap.  And let out a HUGE burp.  Followed by his PediaSure and part of his supper!!  :-(  Poor Daddy - all over his legs and shorts.  All over Sax.  Bath time.

At least he enjoyed his bath!!  And he loves his PediaSure (or P-Sure as he calls it!)

Some of his favorite words right now (with pronunciations!)

• 
  
  Raine (he says Rain-a)
• 
  
  Saxy (sounds like sassy)
• 
  
  Ducky (ducky)
• 
  
  PediaSure (pee sure)
• 
  
  Grandpa (apa)
• 
  
  popcorn (pa cone)
• 
  
  sorry (sa wee)
• 
  
  Abby bite! (clear as day, says abby bite!!)

By the way, Abby only nipped him once - whenever he gets his butt swatted, or pinches his finger, or trips, or anything, he says Abby bite.  If he breaks something, it's Abby broke.  Although, this last time when he broke the wheel off his monster truck, it WAS Saxy broke.  We'll see how long until it's Raine-a broke! lol!!

Poker Run Fun

Today was our first attempt at holding a CF Poker Run.  There has been some talk amongst us about making the Poker Run an annual event.  After how things went today, we have some ideas of things that we would change and things we would keep the same!!  First off, I think it was getting to be too long of a time for the kids especially.  Raine was restless and Saxon was getting tired.  He eventually fell asleep on me and was getting upset whenever I tried putting him down.  Finally he was tired enough that I could put him on the ground on a blanket that I had gotten out of the car (yeah, we forgot the stroller at home - didn't have enough room in the car!)  But he's such a cute sleepy head!

When Aunt Lori got to the Green Mill where I was with the kids, she started joking about 'shaking people down' for donations.  That turned into her and the kids (Raine, Saxon, and Lori's daughter Emma) going on the Poker Run!!  The girls carried a Vikings bucket around at all of the stops and asked for donations to help fight CF.  They did really good - they raised over $90!!!  It's hard to say no to those cuties!!

We had 13 cards played for our first attempt at the Poker Run.  After paying out for our High Hand Prize (2 pairs - 9's and K's) we still had made $70 (we also received a $5 donation at the Green Mill).  So $160 for our first Poker Run, and not much at all in expenses - just the tagboard, printing, and stamps.

Some thoughts for next year:

Keep:

• The Poker Stops
• Liability Waivers
• Cash Payout
• Not required to be present for drawing (last minute change)
• Prizes

Change:

• Hours - shorter (2-5?)
• Providing maps of the route
• More advertising
• Later in the year (end Sept/begin Oct) to avoid state fair/vacations
• Actual raffle (?)

These are just a few ideas.  Several people have expressed interest in future/annual Poker Runs.  We may be adjusting the price and offering a discounted price for early registration.  Some things to think about.  I'm going to be sending Thank You notes to the locations tomorrow and asking them if we can hold our festivities at their locations again next year.  We're open for additional suggestions!!! :-) 

You're A CF Mom...

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

• You judge your kid's nutrition based on what's found in a diaper
• You have permission to "beat" your child multiple times a day
• You conversate with other CF parents and doctors about stool consistancy on a regular basis
• You ENCOURAGE your child to eat salt and fat laden foods
• You ADD extra salt and fat to your child's foods
• You're excited when your child gains weight
• You ENCOURGE your child to gain weight!!!
• When you're grocery shopping, you look for foods with higher calories and fat content
• You teach your child to dip his potato chips in melted butter
• You're not worried when your kid goes into a coughing fit - you encourage him to keep on coughing
• You make chocolate pudding using half & half or heavy cream and whole milk
• You ADD half & half or heavy cream AND Carnation Instant Breakfast to each glass of whole milk
• You get your AC fixed and check to see if you can write it off as a medical expense
• You know the importance of different colors of mucus
• YOU have to explain to the idiots in the ER exactly WHAT CF is to get the proper treatment!!
• You get excited when a medication only costs $100.00
• Your medical equipments costs 5 times the value of all 3 of your vehicles combined!! (Recently got his vest - retail price: $16,500!)
• The cash price of prescriptions for your CFer, for one year, is more than twice your annual salary!! (VERY thankful for insurance!!)  And that's not including anyone else's meds!
• You know the value of tying dirty diapers up in plastic bags EVERY TIME!!
• You get excited every WEEK your CFer is NOT on antibiotics!! (none since the end of March - knock on wood!!)
• Your doctor tells you to buy a stethoscope
• Your doctor has a standing order for antibiotics for your CFer - all you have to do is call and say "I need antibiotics, these are the symptoms" and they're automatically sent
• You have your doctor's cell phone number
• You meet a TON of doctors in specialties you've never heard of
• You feel like a hospital is your second home
• You know all the shortcuts through the hospital
• You can recommend to others what to order and what not to order from the hospital cafeterial
• You plan your vacations based on the location of specialized Centers and travel with an envelope of medical records

Stay tuned for Part 2 of "You're A CF Mom" coming soon!!

Hanging with Mommy

Mommy and Sax spent the day just the two of us.  Raine went to hang out with Great Great Grandma Betty while Daddy was at work. Saxon woke Mommy up this morning - he stood up in the crib, said "Mommy", then threw his teddy bear at Mommy to wake me up.  Kinda cute!!  We just kinda hung out most of the morning.  After lunch, we went "bar-hopping" - we did the Poker Run in reverse so we could go pick up the donations from the different locations and drop off paperwork for tax deductions.  We got some pretty nice stuff donated!!  Shirts, hats, gift certificates.... even a flag!!  Now we're just hoping for a good turnout!!  The weather is supposed to be nice - about 82 and no rain!  I hope that encourages more people to get out!!!

Even though we were in the car for quite a while, the little man stayed nice and cool with his new haircut!!  He looks like quite the handsome little man!!  The shorter hair should help him stay cooler for the last bit of summer that is left.

We were having a pretty good day, and Saxon only napped for about an hour, but seemed to be in a pretty good mood. Until about 830.  The short nap caught up with him and the resulting tantrums were not pretty!!  He was trying to wedge himself between the love seat and my recliner - and almost got stuck again!!

Daddy's working on getting nebbied and thumped so he can get to bed.  He likes getting high 5's when he's done nebbying.  Hopefully he'll sleep good tonight like he did last night!!  Tomorrow is going to be another "Mommy and Saxy" day while Raine goes to Grandma's again.  Hopefully he'll nap a little more - while we're HOME - so Mommy can get some homework done...  Then Saturday is the big Poker Run day.... Hoping for the best....

Feeling Fallish

The weather is finally cooling down a bit.  It's still summer, but it's cooler, less humid.  Saxon's allergies have tamed down with it, along with his wheezing.  He's been sounding a little bit 'gunky', but I'm pretty sure that is because he's getting shook up so well with the vest.  It is doing SO much more than we could do by hand!!  He's also becoming a lot more tolerant of it - only fighting it about half the time.  But sitting still for 20 minutes for ANY 2 year old is quite the challenge!!  That's not always the case, but more often than not.  We try singing to him and with him to keep him distracted.  We are surge to tell him "Good Job" when he's sitting good.  When we're first setting everything up he tells us "no nebby" but when he's done, he says "Sassy aww done!"  It's so adorable!!

 The cooler weather is such a blessing!  I think the kids are getting restless from being indoors so much this summer.  I try to get them out into the yard to play, but we keep running into 2 major roadblocks: 1) The heat and humidity are hard for Saxon to handle and 2) The mosquitoes have been TERRIBLE this year!!  Even with bug spray on, they find a way to bite.  I was shocked to find bites on the bottoms of my feet!!!  The city spraying doesn't seem to be helping much either.  I think it was better when they sprayed by ground instead of air - it was more effective anyway!!



This morning was a bit of a stressful one on Mommy.  Raine had a dentist appointment at 11.  The kids fought before her appointment.  They fought during her appointment.  They fought after her appointment.  They pretty much fought right up until I put Saxon down for a nap and Raine went upstairs to play with Barbies.  Sax wouldn't stay in the pack and play of course, so he ended up napping on Mommy's lap for a while.



Since the temps were in the 70's and more tolerable today for Sax especially, he and Mommy and Raine walked up to Farmer's Market with our friend Erin. Raine walked pretty good, hardly any complaints.  Saxon didn't make a sound, period, until we were almost home.  That's shocking for him!! When we got home, he played nicely with his sister without fighting until Daddy got home.



Both of the kids had checkups on Monday.  I've been worried about Saxon because he hasn't been eating much lately.  He ate his Maltomeal for breakfast, a spoonful of applesauce for lunch, a little bag of gummies mid-afternoon, and 2 bites of Daddy's pizza for supper.  He HAS been drinking 3 cans of PediaSure per day now, which seems to be helping.  At his appointment at Mayo, he weighed 11.3 kg.  On Monday at his checkup, he weighed 12.5 kg.  We have to go back on the 13th for his next weigh.



We don't have too much else going on.  School has started for Mommy.  School starts in a couple weeks for Raine.  We're trying to plan another family outing or two before long - Mommy is really hoping to take the kids to the apple orchard to pick apples.  Opa and I are going to make homemade applesauce since we go through so much with Saxon's enzymes.  Plus it should be pretty fun!!!  i will keep info posted!!

The Hottest Walk in Town!

Today was Kernal's Days.  Strides for Sax had a float in the "big" parade in the "big city" of Wells. (for those of you not from the area, Wells is pop. 2000 - lol!)  It was VERY hot out there.... the Tootsie Rolls and the chocolate roses were starting to MELT on us!  Here are some pictures of our signs and our float.  I know I still need to get the other pictures posted on here... Hoping to get to that this week!!

Our float w/Uncle Ward's Studebaker

Grammy riding on the float

Already advertising for next year!

Dallas and Abbey, my siblings, with Raine and Saxon,
and Opa in the background before the parade.

It was about 90 degrees when I checked the thermostat.  Missing from these pictures are Daddy, me, and Steph.  I'm sure we have some pictures of us around somewhere!!  We passed out our Chocolate Roses for Cystic Fibrosis, Tootsie Rolls, Mini Tootsie Pops, and CF Teddy Bears.  We handed out posters for the Poker Run too.  (Sounds like a lot of people are just waiting to see what the weather is going to do on if they're going to show up.)  We also came up with an idea for our next (July 3) float - sticking with the red, white, and blue patriotic theme, but making it 65 roses - artificial red white and blue roses!!  Something to think on a while....

After the parade, we didn't stick around Wells - we had to find a way to cool down - especially for the little man!!!  We hit the gas station for some cold beverages (but we DID drink water the whole parade route - Opa brought a cooler!!) and some electrolytes (Gatorade) for Sax, some salt for Scraps in the form of potato chips, and headed to the cabin.  Sax fell asleep on our way there!

The cabin turned out to be a GREAT call - Daddy sat on the deck with Opa while me and the kids took a dip in the pool to cool off!  It was Saxon's first time REALLY playing in the pool.  He didn't like the ear plugs, but realized he got to play more with them in.  I would put him up on the ladder, and he would jump to me, and I'd catch him after he hit the water.  A couple times I let him go under, and he giggled and loved it!  He didn't like when it was time to get out of the water though!!  If it would have been up to him, we would have stayed in there a LOT longer than we did!!

Well, Mommy's face is sunburnt and my legs ache, I'm tired, and the rest of my family is sleeping.... I think it's about time to join them...

Move it Mommy!!

The summer has been just flying by, and in spending so much time with my children and getting my business going, keeping this up has kinda taken a back seat unfortunately.  So now here I am again trying to bring things up to speed.  It's been a busy month and a half!!  But we'll make it a fairly quick summary.  My camera battery is dead, so I will try to upload new pictures tomorrow. 

Saxon just turned 2 on July 8.  We had a big party at our house for him the following weekend, with lots of friends and family!  The kids played in the pool and on the swing set.  Mommy was getting a little worn out from all the prep, so I broke down and bought a birthday cake.  (That's ok, I will have PLENTY of years still to make birthday cakes for my kiddos!!)  We had a SpongeBob theme, with a pinata and yellow plates and 'beachy' decorations.  He LOVED all the SpongeBob toys and especially his bulldozer... we had trouble getting him to put it down long enough to open the rest of his presents!!!  The little man seemed to have a good time though.  We even got Great Grandma Nancy in on the pinata fun!!!

It's been a little tough playing referee lately.  Him and Raine have been fighting quite a bit and there is a little bit of jealousy going on.... We're doing everything we can to try to resolve that issue before it gets out of hand.  Hopefully that doesn't take long.  We've been trying to show her everything he goes through because she has the impression that his checkups in Rochester are fun.  We let her see exactly what he goes through at the checkups and she sees how hard it is and that it isn't fun and games.

As far as Saxon's health, we have some good news and some bad news.  The good news is we are still (knock on wood) without antibiotics!!!  This is the longest he has EVER gone without them!!!  It's such a relief that we haven't had the additional medications and unscheduled visits to the clinic and the hospital!!!  The issue with his lymph nodes has pretty much resolved itself with the use of Claritin.  I've been giving him his allergy medication later in the day so that if he IS exposed to mosquitoes, he doesn't have as major of a reaction.  He swells up pretty good when he gets bites, but that's one of his allergies!! (just in the bite area!!)  Dr P said we will be doing another allergy test before long to be more certain.  The bad news is Saxon's weight is not where it should be.... it's going down again....

We had an appointment at Mayo last Friday, the 13th.  The appointment went pretty well.  Since Sax is 2 now, his vitamin dosage has increased.  Since he is not gaining any weight and getting really picky about eating again, we have started supplementing with PediaSure.  SOOOO happy that WIC covers it and we are covered by WIC!!  He had started out at 2 cans per day, but now we are doing 3 cans per day and are having the PediaSure with Fiber.  That may alleviate any future digestive problems.

The kids have insurance again too!! FINALLY!!!  It only took FOREVER for the county to process the application and decide what they wanted.  The BEST part is that they made it RETROACTIVE to MARCH 1!!!  That is really helping with the bills - we have almost $100 credit just from the prescriptions, just at ONE of the pharmacies!! :-)  At least SOMETHING is going in our direction now!!

We just got a new nebby for Saxon!!  The one we had was the travel version that is not meant for use multiple times a day every day.  So Vicki got a prescription for us for a new one, which was covered by insurance since it was the first one we have requested from them. 

We also got Saxon's vest!!!  It just came yesterday (although I was told that it would be here Wed, and told I needed to sign for it, but both proved to be FALSE).  We had an RT come down from St Peter to show me how it worked.  Saxon didn't really like his first treatment with it - I suppose it scared him and it's something new.  But now that he's done it 4 times (twice yesterday and twice today) he's starting to get used to it and not fighting as much!!  Plus it really cuts down on our therapy time, since we can do his albuterol and Pulmozyme nebbys at the same time that he's getting thumped! So instead of 40 minutes twice a day, it's 40 minutes TOTAL for the day!!  I was told to expect a call from the insurance company in about a week so we can let them know how things are going with the vest.  It had a pretty price tag on it though - $16,500!!!  But that covers a lifetime warranty, replacement parts, and larger vests as he grows.  One step forward on our battle!

We are getting ready for Sunday now.  Strides for Sax has a float in the upcoming Kernal's Day Parade.  We're not positive on what exactly we're doing for the float, but I'm sure it will come together in the end.  Opa has donated money for the candy for the parade.  We're also going to give out some of the teddy bears that we have left from before, and we're going to pass out more fliers for out Poker Run. 

I'm starting to get a little worried about that.... really hoping we have a good turnout since we haven't gotten any early registrations.  I'm at a loss of what to do... If this fundraiser is unsuccessful, I don't know if I'll have the heart left to invest my time and energy into another!!  It's so frustrating, especially after all the work and money we put into these events!!! It's disheartening to think that people just don't care and that the support isn't there!! I would do anything for my little guy, but I'm just wondering what I CAN do anymore.... I don't know anymore.....  I guess all we can do is to hope for the best!!!