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, August 20, 2010

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!!!

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