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.

Tuesday, January 25, 2011

Another Antibiotic, Another Illness

Thursday, after all of our running, Saxy and Mommy made a trip the the clinic.  His nose went from running a little and his head was congested, to blowing out large amounts of green mucus and wheezing.  Any other day, I would just call the doctor to get a script for the antibiotics, but the wheezing had me more concerned.  After talking to 3 different people on the phone, we had an appointment scheduled with one of Dr Ulrich's PA's for 10:45 am.  Much shorter wait time than going through Same Day clinic or Urgent Care, and we get a CHOICE over who we see, which is great. 

This PA Michael seemed pretty good like the last PA we had (Andrew).  He listened to all of Sax's symptoms, what treatments we've been doing, and what my thoughts and suggestions were on his illness.  Sax was really good about the exam - he even climbed up on the table by himself!  Michael looked in his ears, mouth, and nose and listened to his lungs.  He said Sax's lungs sounded ok and he thought any sounds he may have heard were made by the postnasal drainage.

We requested that Saxon not be put on Omnifec this time.  The Omnicef DOES work, but it also causes him not to eat and causes a lot of bm issues... and we've have success in the past with Augmentin, so that's what we decided to go with - 2x per day for 10 days, along with 3-4 vest treatments per day with Albuterol for the first 2-3 and Pulmozyme with the last.  At first it looked like this all was going to work... not so much now.  Many other CF moms suggest we give him probiotics to combat the bm issues - well that's all fine and dandy - IF he would EAT!  It doesn't matter what foods we try giving him if he's not going to eat them!!Last night was a really bad night for Sax... He kept Mommy up until 2am... If he decides to nap today, I think I will have to nap too...

Now, in fundraising, we are having a StridesForSax team meeting tomorrow night to plan for our upcoming fundraiser on March 5.  We are serving food for the annual Aragon Dart Tournament.  The agenda is to discuss and set pricing for the meal, make posters, and discuss any further fundraisers we may want to do.  It's also time to get registered for the Great Strides walk.  Just go to our site to register to join our team today!!  Or, if you would rather just make a donation, you can do that here too!!  We're hoping for a good turnout!!

Wednesday, January 19, 2011

Here we go again....

Another call to Vicki today at Mayo.  Sax's head is congested, but he really hadn't been having any discharge. Wasn't too sure what to do, since usually it's running pretty good.  I told her I thought I'd up him to 3 rounds of CPT with 2 albuterol nebulizers and one Pulmozyme.  She said that sounds good, with the addition of a saline nasal rinse.  He took the first one pretty good - a lot better than he did his CPT and nebby treatments!!  He even took his Nasonex without fighting!  (I'm not sure why, but he's been fighting us pretty good on those the last few days.  It might be because he hasn't been napping.  When he hasn't napped, he has a tendency to fall asleep during treatments.  And I think he knows this too....) 

Anyway.  The first dose of nasal spray seemed to loosen things up a little.  His nose started running a little.  It was all clear discharge at first... I kept wiping his nose.  Then I made him mad cuz I wouldn't give him a sucker.  So he decided to blow all the snot he could out of his nose.  And it was nasty green.  Yup, you guessed it!!  Infection, which means more antibiotics... back to omnicef.  Hopefully he won't get the gas and icky stomach he had with the last round.  If I'm lucky, I can get ahold of Dr Ulrich and maybe get him on something different that won't bother his digestive system so much.  The Zantac he's on doesn't seem to help with the situation at all.  He has enough trouble with gaining weight as it is, we don't need to do anything to hinder it anymore.

Sax's lungs seem to be sounding alright.  I think the cold/congestion is all in his head.  He coughs a little and sounds a little gunky, but it sounds like a stuffed up nose and postnasal drainage.  I'm really hoping that's all it is.  I'm worried too, though.  I'm worried he may have polyps again.  When I was trying to get him to blow his nose and was cleaning it out, it looked like the insides of his nose are swollen.  He's already had 2 surgeries to remove them.  We're hoping to be able to go 3-5 years before he'll need them again.  The Nasonex is supposed to help suppress them.  But until very recently, we had a lot of trouble giving it to him.  We go back to the ENT in Feb when we have our other appointments.... hopefully they don't find anything....  Keep our little man in your prayers...

Sunday, January 16, 2011

Starting out the new year!!!

So I know I've slacked a little bit, so we're going to play a little catch up....

Saxon finished his omniceph and hasn't been having as many tummy issues or poopy issues!! Yay!!!  We're happy to say he is starting to eat more again too!!!  Not as much as he had been eating before, but still doing pretty good.  It's not an every day thing that he DOES eat, but he does eat more often than not.

On New Year's Eve, Raine had a couple friends over to hang out and one to stay the night.  The girls had so much fun, and so did Sax.  It was so sweet that they included him in on their games!!  The girls stayed up until about 2 am, and Sax had crashed about 12:30.  That's still pretty late for all of them though!!

He was especially enthralled with the noise makers and all the balloons.  I figured to have a REAL party, ya gotta have balloons!!  We drew pictures on them.  Sax still has a few of them around the house more than 2 weeks later!!

Today Daddy, Raine, and Saxon went sledding.  It was Sax's first time really going down a hill.  We've had him out playing in the show, and Daddy has pulled him in his sled before, but this is the first time down the hill.  Mommy couldn't go cuz I was helping Grandma and Grammy with a few things (Grammy broke her shoulder before Christmas, but she's doing good!!)  Daddy said Sax did really good, even when he fell out of the sled.  He went down all by himself a couple times too!!!  Our little man is fearless!!

Earlier today, though, he had a little incident.  We were making lunch and the kids were playing upstairs.  We heard Sax start crying, so Daddy went to get him.  Apparently he hadn't been in Raine's room playing with her - he had been in OUR room playing...... and fell and cut his eyelid!  Daddy didn't see anything at first.  A little later when Mommy was snuggling with him, I noticed he had a little blood on his eyelid.  Unfortunately we have to be super careful putting anything on it cuz the antibiotic cream says to keep away from eyes....  I did a warm compress that did seem to help....

Hopefully the next few days will be uneventful... Our next Mayo appointment isn't until the end of February, hopefully we won't have any more doctor appointments for him before then!!