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.

Friday, June 25, 2010

Flash Me Friday

So I totally know it's Flash Me Friday, and I've been a bit behind.  So I'm doing 3 flashes today!! :-)

So here's the Saxmobile!!  My 97 Chevy Malibu.  Yes, it STILL says Strides For Sax!!! on the back from Great Strides in the beginning of May.  Yes, I know it's almost July.  But ya know what?? It makes the car a LOT easier to FIND my car in the parking lots!!! hahaha!! 

Sorry, you're NOT going to get to see much of the inside... it's a pit....haha.  But I love my car - my hubby bought it for me for my birthday when I was pregnant with Saxon.  It was getting a little too hard to get in and out of my 2-door Neon being huge and prego!!  Plus, 4 doors are just so much more convenient with the 2 kids.  I was going to post pictures of the other 2 vehicles, but Sax spends most of his time with me in the 'bu.

So, the next Flash I missed - is looking through the front entry-way.  We don't use our front door, so the view from the front entryway isn't the best.

Inside the playpen, what do we see???

It's my little Scrappy man napping with his bears!!

And now onto THIS WEEK's Flash - Where do I kick my feet up?  Well, here it is... very specifically, MY recliner!!!  My computer is within grasp, my file box is my side table with all my most important papers and, of course, my phone.  I have my own little corner to hide in.

So here are my flashes!!  Feel free to join in with your own flashes!!

Now down to business!!  Saxon had a GI appt with Dr E on Wednesday.  Daddy took off early to go with. To sum it up short - appointment was great!!  If we need anything we're supposed to call him.  Sax is gaining weight.  His bm's are getting back to normal.  He is still taking the Exlax and Miralax, but not every day now.  We're just doing it every other day.

We did a little shopping on Wednesday to get ready for Saxman's birthday party that we're having on July 10th.  His birthday is actually on the 8th, but the 10th is a Saturday.  We're having a Bikini Bottom Birthday, courtesy of Spongebob.  We got Spongebob invites, gift bags, hats, and a pinata.  We also  got a bag of candy and toys with a Spongebob theme to stuff the pinata with.  This should be fun!!  I'm going to make ice cream cone cupcakes since everyone seemed to like those last year!!

Last Saturday, the 19th, was our first night without both of the kids at home.  It was difficult for me, but night at the same time it was nice to have some "mommy and daddy time" without the kids.  They stayed at Auntie Lori's while we went to a wedding and a surprise birthday party.  I think Auntie was a little intimidated at first when we were explaining all of the medications to her.  But she did fine with them anyway!!  They're looking forward to the next time they get to stay with her!!  And they were happy to see us when they got home too!!

Well, that's all the updates we have for now!!  Hope to post again soon, but until then, Love and Prayers!!

Be At Peace & Breathe Easy, C-man

This battle with CF seems to be all encompassing.... there is never a part of the day that passes in which we aren't reminded of the battles we and our children face because of this horrible condition... or disease, which I try to refrain from calling it... which puts so much stress on us.  Not even a meal can pass without the reminder that it is always there... there is no escape... there is no cure... 

All we can do is pray...

Pray for a cure...

Pray for an answer on how to make everything better... pray... pray... pray...

As the mother of a CFer, I spend a lot of time doing just that. 




I pray today for another CF momma.

I have prayed since I learned of her little CFer's struggle.  It pains me to read what she has gone through.  It pains me to think of her little CFer losing his battle.  I prayed for his comfort.  I prayed for his strength.  I prayed for his recovery.  I prayed for his breath.  God works in mysterious ways and many of my prayers seemed to go unanswered for Sarah's little C-man.

Conner lost his battle with CF last night.

Now I pray for his peace.

I pray for his family to have the strength they are going to need to make it through the next battle as they lay him to rest. 

We know C-man is no longer in pain. 

We know he no longer struggles for each breath.

We know he no longer suffers.

He glides on the wings of angels. 

This post is in red intentionally.  Red was Conner's favorite color.  Although I never knew him personally, got to know his mother and about their family from their blog and facebook.  But Conner and his family have touched me more than I could ever try to explain.  They have touched my whole family...

Now I pray that if I ever cross that bridge, I have the support that Sarah and the Jones's have.  I pray I have the strength to make it through.  But most of all, I pray that is not a bridge I will ever have to cross.

Like Sarah, I have a 7 year old.  My world would not be complete without her.  I have my little man, who is my CFer.  I pray I never watch him struggle to breathe.  I pray I don't watch him suffer.  I pray a cure is found before it is too late for him.  It's already been too late for so many.... I couldn't imagine losing either of my babies.... No one should ever have to bury their child so young... No one should ever have to bury their child.

It's not fair.

Life is not fair.

Children deserve the chance to live their lives, not to have it revoked before they are given the chance to experience life.

This is my renewed commitment to fundraising. We are going to work harder to raise money for the CF Foundation.  There is a cure out there... waiting to be found... and we are going to help to find it.

The suffering has got to end.

My stomach is in my throat as I write this.  I can physically feel the pain in my own heart.  It tears me apart to just think of my own child going through the pain.  It makes my chest cramp and tears come to my eyes.

So please help us.  Help all of us.  Help us pray.....

Thursday, June 3, 2010

More Meds

Today has already been a long day for me.  I'm a bit worn out, but I'm not used to being up at 5:30am anymore.  Just a small sacrifice to make for the health of my little man. :-)  We needed to be in Rochester by 7:45am for Saxon's GI consult and appointment with the dietician.  We saw Dr El-Yusseff and his intern Rachel.   He is a gastroenterologist.  They didn't see anything wrong with his tummy.  Dr E is worried that Saxon may have fibrosis of the colon, but said it is not likely.  He considered doing an x-ray of Saxon's colon, but decided to do the conservative approach and put Saxon on Mirlax and Ex-lax to see if we can get his bm's a little more regular and so they're not so firm.  Yes, one of the many joys of being a CF mom involves analyzing your child's bm's to see if his diet or medications need to be adjusted.  Hahaha.  This should make for some INTERESTING diapers in the next few days!!!!

After seeing Dr E, we met with the dietician.  One of the things she told us I already kinda knew - we need to stop babying Sax with his food - if he's not going to eat what he's given, too damn bad!!  We need to figure out how to up his calories still though.  One thing that has changed is that we are giving him Carnation Instant Breakfast Chocolate twice a day with his whole milk.  We are also supposed to be starting to add some cream/half and half to his milk.  She also gave us a book with tips and ideas of how to increase the calories in his foods.  Some of the things they want us to add are interesting - like adding eggs to tuna salad and powdered gelatin mix to cereal and topping with cream.  I feel bloated just THINKING about some of the foods he's going to be eating and that we're encouraging him to eat!!  I actually DID add melted butter to his applesauce today - it was kinda weird, and I think he is trying to adjust to it... 

Wednesday, June 2, 2010

Filling in the Blanks - Part Two!!

I left off with Saturday, cuz it just seemed that entry was getting too long... So now to Sunday.  We went to the Cabin on Sunday to hang out with the family..... The Blomquists and the Jensens..... 

The kids had all kinds of fun playing with the water and splashing each other, even though Saxon didn't get to go in the big pool.  Mommy and Daddy didn't bring our suits, so we couldn't go in with him, and we didn't have any ear plugs for him, which he would need since he had the tubes put in his ears

The kids were having water fights in the pool, and jumping in and splashing all of the adults.  The chlorine was a little strong - Raine's eyes were pretty red when she got out of the water, but it was the first swim of the year, so it will balance out...

Since Saxon couldn't go in the big pool, he decided to play in the wading pool (aka the puppy pool - Bruno Blomquist was bathing in the pool...)  That didn't stop him!!  He was splashing and in and out of the pool, and playing with water guns.  His favorite was to sit on Mommy or Daddy's lap and try to shoot the water gun - but he would shoot himself or us in the face!!  His fingers wouldn't work right to aim the gun away from himself - he had to use his thumb.  But he was having a lot of fun!  This was the first of what I'm sure are going to be MANY weekends at the cabin... and the kids just LOVE playing with their cousins.  It's so nice they have kids close to their own ages to play with!!!  And it gives me and Daddy a chance to sit back and just watch for a while.

It stormed Sunday afternoon for a while and then again Sunday night.  We got home about 9pm, then the power went out.  It stayed out for about an hour and a half, so we couldn't do Saxon's nebby without power!! By the time the power came back on, everyone was asleep or about to sleep, so we just did an extra thumping in the morning.

Monday was a mellow day... we pretty much just hung out around the house, did a little yard work, and went fishing.  Raine had baseball practice so we didn't stay fishing too long... She has her first baseball game tonight.  Can't wait!!

Yesterday, Tuesday, I got a call from Rochester.  Saxon has an appointment on Thursday for a GI consult.  I was concerned, since I had not heard anything back from Dr P.  The person who called didn't know what the results were from the x-ray, so they had Vicki give us a call.  She said the x-rays were fine, there wasn't any blockage, but that's why they were concerned about the weight loss and decreased appetite.  It's possible that it's just normal 2 year old behavior, but we would prefer to be on the safe side.  They said a GI specialist may find something that they missed since the tummy is their area of specialty.  We have to be at Mayo 9 at 745 tomorrow morning, then we have an appointment with a dietician afterwards.  Hopefully we should be done by 10, but ya never know!! I won't hold my breath on that!!

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 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....

Tuesday, June 1, 2010

(Friday) Bloghop!

Hahaha, yeah, I know it's not Friday.  Crazy busy weekend so I missed out on the bloghop... but not really since Jen didn't close it... Thank you Jen!!  So here's my picture for the hop... the fridge... which would have been GREAT if I would have taken the picture right away!!  I just cleaned it out on Tuesday!!  But that's short-lived!! Haha!!

We USED TO have more magnets on the bottom of the fridge, but we seem to have a little man who enjoys taking them off... which wouldn't be so bad... if he wasn't THROWING them in the GARBAGE!!  The first time it was kind of cute... then it just got to be ridiculous when it was EVERY time he was in the kitchen... so now, no magnets!!  Kids... you just never know what they're going to do!! :-)