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!!! :-) 

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....

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!!!

Filling in the Blanks

In spite of my efforts, I have not been keeping up with the blog quite as much as I planned on!! So here it is on Tuesday, and I'm going to backtrack to Friday. Or Thursday, actually, would be better. And we'll go from there....


So on Thursday night was our Strides for Sax team meeting. We discussed the parade a little more, still brainstorming on what we want to do exactly for our float. Then we got to the nitty gritty on the Poker Run/Car Cruise.


We will be holding our Poker Run on Aug. 28th, 2010.


This will be open to anyone 18 years of age or older.


It's open to cars, trucks, motorcycles, anything with or without wheels that can make the trek!!


The route will begin and end at the Green Mill in Albert Lea. The stops will be, in this order,
1) the Alden American Legion, 2) Wildcats of Wells, 3) TB3's of Freeborn, 4) Hartland U, and 5) Bend in the Road of Manchester.


Each tally sheet played will draw a total of 6 cards, discarding one, and will based on the best 5 card hand.



Any player can have more than one tally sheet. The tally sheet must be presented before drawing a card.



There are 4 categories for prizes: 1) High 5 card hand, 2) Low 5 card hand, 3) Most CF Spirit (most purple), 4) Early Registration.


All tally sheets MUST be turned in by 6 pm. Prizes will be awarded at 7 pm. MUST be present to win. There will also be raffle style drawings for smaller prizes.





Registration forms will be available at all Poker Run stops or by emailing mindy_cff@yahoo.com. Payments can be made by cash or check payable to "Strides for Sax." Payment must be turned in with the completed and signed registration form.


Live registration will begin at 11 am at the Green Mill.


All participants must sign a liability waiver.




Completed forms can be mailed to Strides for Sax - Poker Run, 1211 Frank Ave, Albert Lea, MN 56007.




So, email or pick up a form and we hope to see you there!!


And that was Thursday.


Friday, Saxon and I made the trip to Mayo by ourselves. We had to be there by 9 am for x-rays. Daddy had to take Raine to school since Sax and I left at 715 to make the appt. We got there early, so we got in to the x-ray early. Our next appointment with Dr Pianosi was at 11.  We had a few hours to kill, so we wandered down to the subway, got some breakfast, then wandered around the clinic and subways for about an hour.  That got boring, so we went back up to 16th and watched Finding Nemo.

At 10:30 we were called back to talk to the social worker.  She was checking to see how we were doing as far as insurance and everything was going.  I told her I applied for MA and MNCare for the kids, since we haven't had insurance since I left my job.  She was going to call Freeborn County and talk to our local case worker about how long our application was going to take, especially since Saxon's medications are so expensive.  She also gave Saxon a new stuffed puppy.  He usually gets a new toy when he goes over there...

Dr. P was running late.  Vicki was gone, so we didn't see her.  I turned on a movie in the exam room (they have Video on Demand there!!) and we started watching Mosters vs. Aliens.  We didn't get to see the whole movie, but we saw most of it.  It was after 12 before Dr. P came in.  We looked at Saxon's chest x-rays - they were good and more clear than at his last appointment.  They hadn't gotten a weight on him, so Dr P took him to weigh him.  He went from 12.5 kg down to 12.1 kg since his checkup 2 weeks ago with the ENT.  I told Dr P that Sax hasn't has as many dirty diaper - he's having plenty of wet ones, though.  and he doesn't seem to have much of an appetite.  Dr P was concerned.  He ordered an abdominal x-ray before we left.  He wanted to make sure there wasn't any blockage... we wouldn't get the results right away....

So that pretty much summed up our Friday.... Saturday wasn't much of anything - just hung out at home and did some cleaning and gardening....