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.

Monday, February 28, 2011

Just a Typical Mayo Day... Or Daddy Got Inked

Wednesday was our day for Spring Checkup!  Hi ho, hi ho, it's off to Mayo we go... or went.  It was a busy day.  It's a really good thing that the way the pre-appointment time was NOT an indication of how the day would go!!

We got off to a late start right away.  I hurried to unload my displays from the trunk so I could put the stroller in, keeping Raine moving and getting ready, packed the diaper bag, and let Daddy finish getting Sax ready.  Since we had to be there by 9am, our plan was to leave about 7:30am.   We had to drop Raine off at my friend's house since she couldn't be at the school before 8am, then dropped off some stuff for a client of mine and decided to hit McD's on the way out so Mama could get a Frappe and Daddy and Sax could get some food.  BIG MISTAKE!!! 

We got the Frappe and the OJ and were asked to pull ahead cuz they needed to make the steak for Daddy's burrito.  We waited...... and waited..... and waited.... and waited..... the worse part of where they want you to wait is that is where the smokers go to have their cigarettes, so even with the windows closed the smell of the smoke got into the car.  Finally we looked at the receipt to see if there was a time on it - we put our order in at 7:44.  By now, it was 7:59.  I sent Daddy in while I pulled the car around to the other side. 

Scot: Where is our food?
Lady: I gave it to you.
Scot: No, you didn't.
Lady: Yes I did.
Scot: You gave me the Frappe and the orange juice and asked us to wait.  Can I get a refund for the food since we're not going to get it?

She turns around and, sure enough, our order was still sitting by the window.  I don't think they would have ever brought it out!!!  So now we're already about 10 minutes behind (accounting for the 5 minutes it normally takes to go through the drive-thru).  We don't have time to deal with talking to a manager, so that got moved to Mommy's to-do list (and it got done Thursday, too!!)

We were cruising along pretty good until we got halfway to Austin and the roads started getting slick, so we had to slow down a bit.  Then when we got almost to 63, the car started acting up.  Daddy thinks it's the torque converter clutch solenoid (tcc).  When I try to speed up, the accelerator pushes back and the car doesn't want to speed up.  If I pull over, turn the car off, and let it sit for a minute, then it usually resets and works again.  Sometimes it resets and works without having to turn it off if I drive like that long enough, which is what must've happened because it started accelerating again ok.  That is, until we got off 52 and were heading to the clinic :-(  Daddy's going to see what he can do about that. 

We parked at the Damon parking ramp, as we usually do, and walked the subway to the clinic.  It never fails - old people walking 6 wide and slow down the hallway so you can't get around them, and stopping to take pictures.  Scot was putzing behind them, so I took over the stroller, said "EXCUSE ME" and speed-walked past them and the 3 blocks through the maze of subways to Mayo.  Saxon was beeping the horn on his steering wheel on the stroller the whole way too, so that helped and people got out of our way!!  We ended up being about 10 minutes late for our first appointment, which was with the social worker.  But that ended up being alright because she wasn't on 16 and ready to go either.  It all ended up working out.

Our appointment with the Social Worker was one that we had requested in addition to the other appointments we had.  We have been having a lot of trouble with our local Human Services office when it comes to insurance.  Our income has not changed even though I started a second job.  Between the 2 jobs I still make less than I had originally claimed on the initial application.  And Scot's income hasn't changed.  However, because I started the 2nd job, the case worker has been threatening to drop Saxon off the insurance because all of a sudden we're too close and are going to go over the income guidelines.  I don't understand this.  Plus she won't tell us WHAT the income guidelines are!!  So we asked the Rochester worker for some help.  She was able to give us contact information for an advocacy program for our county.  (I haven't had a chance to call them yet - but that's a whole different issue.  It's on my list of 'things to do' this week.)  I'm just so tired of the case worker calling and threatening us, then getting letters in the mail saying they don't have our info when I personally hand-delivered it prior to the deadline.

Our next appointment was with Vicki and Dr P.  They listened to him and asked questions about behaviors and appetites and stools and coughs - all the normal stuff.  We reviewed his treatments.  I suggested maybe increasing his CPT time to 25 minutes since it seems that things start loosening up about the time that his vest turns off.  Vicki said that was fine because eventually he'd move up to 30 minutes, so this is a halfway step.  She said there is no reason to do more than 30 minutes in any one sitting because the research shows there is no improvement with more time.  He doesn't seem to notice the extra 5 minutes anyway.  When it was time for Dr P to listen to him, Sax climbed up on the table and was ready to go like a big boy!  Dr P listened to his heart and lungs, and Sax took his big, deep breaths.  We mentioned how gassy Sax still seems to be, and Dr P said it sounded like there was quite a bit of gas in his abdomen.  It was decided that when we come back for his next quarterly checkup that we will see Dr E, the gastroenterologist.  There may be some digestive issues going on.  And when Sax is on his Zantac, it seems that he's a lot more gassy.  He's been dealing with a lot of gas issues since he was born, so we're not sure what to think.....

Sax has grown almost an inch since his appointment in November.  Of course everything is metric, but he's gone from 88.0 cm to 90.7 cm tall, which moved him from 30% to 36% for his age.  Like I said before, we knew he'd be short.  We have no control over that.  There was some concern over his weight though.  Since November, he has only gained .10 kg.  Ok, so it's a gain, but it's not much.. it's not enough.  With him getting a little taller and not gaining weight to go with the height, he has dropped from 61% to 53%. His BMI ranking has dropped from 83% to 67%.  We're happy he's still above the 50% mark, but he's getting closer and closer.  It's not helping that he's been so picky and not eating much lately!! (although last night he did eat green beans and steak!!) 

We didn't do a blood test this round, but probably will next time and recheck his iron levels.  Of course there was the throat culture too.  We haven't gotten the results of that yet, but I expect I should be getting those soon.  Sax is such a good boy when Vicki sticks the swabs down his throat.  He doesn't fight or bite down on the swabs.  He's also very cooperative when it's time to check his ears and nose.  Sax was told he's one of their best patients for that!! :-)

Our next appointment (and the last one Daddy was at for the day) was with the dietician.  We discussed options for increasing his caloric intake.  For his age (with his condition) his caloric need is about 2000 calories per day - which is what a normal healthy adult needs, to put things into perspective.  He loves his vanilla Pediasure, but that's not quite doing it.  Our dietician has requested a case of Pediasure 1.5 be sent to us.  One bottle has over 300 calories in it.  If he like it, we may be able to get that from WIC.  She said we can also add the Carnation powder to it, which we had been doing with his whole milk, to increase the calories even more, or buy the strawberry or chocolate syrup.  And butter.  In spite of what the WIC nurse says, butter is very very good for him.  Cholesterol is not an issue for him because to have cholesterol problems, you have to ABSORB fat.  He doesn't do that anyway, so we're just to disregard them. 

We're also trying something called Duocal.  The dietician has requested a sample of that be sent to us too.  There are 42 calories per Tbsp, so it's very close to the caloric content of butter (except without the fat and salt).  The Duocal can be added to his food and beverages and is supposed to add calories without changing the taste or texture of the food. (More info at

Now, during all of this is when Daddy snuck away, but for good reason.  He is doing his part to help create CF awareness..

Daddy's new CF tat - 65 Roses and Saxon.  This is his left forearm where it can be visible year round, and he's more than proud to explain to everyone exactly what it means :-) 

Daddy made it back just as Mommy and Sax were getting into the car, so he missed lunch and our ENT appointment.  Mommy and Sax went to Red Lobster and had a nice date and were served by our favorite waitress, who just happens to always be working when we're there.  Unfortunately there really aren't many kid-friendly places to eat in that area.  We usually prefer to eat lunch early and avoid the crowds.  We didn't have that option this time because Sax's appointment didn't get done until noon, but we had until before the ENT appointment.

We saw Stephanie and ended up seeing Dr Cofer before we left.  Mommy's been a little concerned because Saxon's left side of his nose has been bleeding a little bit.  I told them he's been doing well with his Nasonex, but we haven't been doing the saline since we weren't told to continue with that one.  Stephanie looked in his ears - which his left tube still looks good and is open, and his right has healed nicely - and looked in his nose and though she found something.  She called in Dr Cofer and they decided to do another nasal endoscopy.  NOT fun holding down a 2 year old while the doctors shove a tube and camera up his nose, then shove a suction tube up there.  Poor little man!!  At least it didn't bleed much this time!!  The sucked some nasty boogies out so they could see better.  It was a pretty clear path too!! Only one little polyp starting to form in the left side, and nothing in the right!!  Yippee!!  Dr Cofer gave him clearance to come back in 6 months now instead of 3.  The only change she made to his routine is the addition of saline nasal spray once or twice a day to help clear out the nasal mucus.

So all in all, it ended up being a pretty good day of appointments.  We stopped on the way home and got a new pet (for Mommy).

My hamster Saxon named Mouse
So I'll leave you with some fun pictures from the past week.....

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