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 http://www.myduocal.com/.)

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.....

One of THOSE Days....

Today has been a day full of stress for mommy.... well, not COMPLETELY, but once the mail came, the stress set in....


I wasn't too surprised to see a letter from the CF Pharmacy addressed to Saxon - it would be a statement showing the charges for our last order of Creon12 along with the insurance payment totalling about $1200 (reminder for those who don't deal with the meds everyday - Creon is his enzymes for food digestion, and this total is for about 750 of them - almost a month's supply).  Which reminds me, it's almost time to reorder, but we'll wait until after tomorrow...  But anyway.  I opened it and checked it out and, surprise, there's a charge for about $1500 on there.  This SUPPOSEDLY was taken care of last month, and the month before, and the month before, etc....  I have been calling every month since August about these charges that should have been billed (and covered) by insurance.  And every month, our CF Pharmacy case worker tells me they're taken care of.  And the next month these charges reappear.  With the charges comes a finance charge too.  And a reporting of a past due bill (not that having a past due medical bill is such a major issue when you're dealing with as many medical bills as we go through - over $60,000 just for prescriptions the first year, closer to $40,000 this past year since no major illnesses, and over $100,000 in hospital bills for the first 2 years for Saxon -SOOOO THANKFUL FOR INSURANCE!) 


Again, what do I do?  Call CF Pharmacy and this time, I'm not dealing with the lady assigned to our case because obviously that's getting me absolutely NO WHERE.  I asked for the supervisor, verified Saxon's account information, and was put through to Michelle (which I have to note here because if I don't I'll forget her name for the next time there is a problem!)  I explained the problem and told her about how I had been calling once a month when the bill came and was continually told they were taken care of but they never disappeard from the 'patient responsibility' portion of the bill.  Michelle was going to check the account history and notes and call me back 'shortly', which only ended up being a half an hour later!  She asked who I had been dealing with.  I cannot remember the rep's name, but because our account is a Solvay Care account, we had a special case worker.  Michelle knew exactly who that was and said she was surprised that there were no notes on the account other than documentation of when we reordered our enzymes.  There was no record of me calling in about these charges.  She was very upset because every time they speak with a customer, it is supposed to be noted on the account.  Her train of thought?  Of course my call wasn't noted because the problem wasn't solved - which in all actuality she said only took a total of 15 minutes to clear up.  One problem up, one problem down!!! Yippee!!


The other piece of mail - addressed to me - made me nervous.  It was from Freeborn County DHS so it was something about the insurance - and the envelope was pretty thick....  I was VERY upset to see it was a 10-day notice of cancellation on the kids' insurance.  I called Patti - the case worker - right away.  I KNOW that all of the documentation and the proofs were at DHS because I PERSONALLY delivered them.  She had to check her pile and get back to me to let me know.  Well, sure enough, she found it.  Her reason for the letter?  Well, SHE doesn't sent the letters, they're automatically sent.  BUT the reason it was sent is because she 'hadn't gotten to it yet' to enter it into the system that the paperwork was received.  Major scare!! 


THEN she starts asking about my new business I just registered for but hadn't actually selling for yet and wants to know how much I make.  I don't know!!  I haven't even actually started yet - I just registered!  I haven't made ANYTHING yet!  Then she starts threatening that Saxon is going to lose his insurance because we make too much.  Between the TWO businesses, I'm not making what I originally filed on the application, so I really don't understand that.  Scot hasn't gotten a pay increase since we started gettin insurance for the kids, and I'm making about half of what I had guessed at on the application.  And I provided her with all the documents to prove it!  We have no worries about Raine losing her insurance because Scot's income doesn't count towards hers because I don't get child support for Raine and she's not Scot's biological child, although he treats her and loves her like his own :-) 


Anyway.


So, yup, I called Vicki.  I know there are guidelines that protect disabled children, which Saxon is considered because of his condition.  I asked her about getting us an appointment with the Social Worker at Mayo.  Maybe she'll be able to help us out.  I have done everything Patti has asked and provided her with every piece of paper she has asked for and then some,  and re-sent every document she has misplaced or 'not gotten'.  I have not done anything to give her any reason to think I've been misleading or lied to her, yet she threatens me about taking away the kids' insurance because she thinks I'm not being honest.  If I WASN'T being honest, I'd probably be getting a lot further. 


You know, damn those who do what they're SUPPOSED to do.  The people who screw the system and lie and cheat make it worse for the rest of us honest people.  All the more reason people should be REQUIRED to take a drug test to get assistance just like those who have to take a drug test to get a job.  I can't believe illegal immigrants can get assistance when the legal residents can barely get it.






A little bit of a rant again, I know.  But there are some things, like this insurance issue, that really get to me.  Another, for those who facebook, is people who constantly use 'FML' in their status postings.  So many of these are over the stupidest things!!  'Oh, I love him, oh I hate him, we've been together 2 weeks and he hasn't called me in the last 2 hours, FML!"  Drama over who-likes-who, mommy-and-daddy-took-my-phone-away, I-don't-get-to-go-out-and-party-tonight, I'm-grounded-from-the-computer, I-live-with-my-parents-and-don't-have-a-job-cuz-mommy-and-daddy-pay-for-everything-for-me-and=my-life-is-so-hard, I-don't-wanna-work-but-I-wanna-buy-toys-all-the-time, I-wanna-be-treated-like-an-adult-and-make-my-own-decisions-but-don't-wanna-be-responsible-for-my-actions.... Seriously?  This is FML rationale?  Some people need to grow up and realize what's important in life.


My out look?  I-left-my-well-paying-awesome-benefit-job-and-a-lot-of-good-friends-to-stay-home-with-my-kids-and-struggle-to-make-my-own-businesses-work-because-my-kids-are-worth-it-and-no-matter-what-life-or-cf-throws-at-me-I-can-make-it-through-and-I'm-going-to-do-my-best-to-love-learn-and-enjoy-my-life-every-step-of-the-way.  I'm-gonna-fight-to-take-care-of-my-kids-every-day-and-help-my-son-beat-his-life-shortening-disease-and-help-my-daughter-and-everyone-else-understand-and-do-what-I-can-to-create-awareness-and-try-to-keep-my-positive-outlook.


I've had a helluva day today.  I'm trying VERY hard to stay positive and to find the bright in everything.  Some days, like today, are harder than others.  It's hard to keep my head up and my eyes dry.  Not a complete success today.  Major anxiety attack after talking to DHS... But I'm making it through with the support of my daughter and my son and my amazing husband.  And I'm praying we're going to have a good day tomorrow with positive results at Mayo with all of our appointments - Dietician, ENT, Dr P, Vicki.  Daddy told Sax we're going to see Dr P tomorrow and Sax's response?  Yay!!  Saxy get toys!! :-)

You're A CF Mom...

You know you're a CF Mom when....

• You judge your kid's nutrition based on what's found in a diaper
• You have permission to "beat" your child multiple times a day
• You conversate with other CF parents and doctors about stool consistancy on a regular basis
• You ENCOURAGE your child to eat salt and fat laden foods
• You ADD extra salt and fat to your child's foods
• You're excited when your child gains weight
• You ENCOURGE your child to gain weight!!!
• When you're grocery shopping, you look for foods with higher calories and fat content
• You teach your child to dip his potato chips in melted butter
• You're not worried when your kid goes into a coughing fit - you encourage him to keep on coughing
• You make chocolate pudding using half & half or heavy cream and whole milk
• You ADD half & half or heavy cream AND Carnation Instant Breakfast to each glass of whole milk
• You get your AC fixed and check to see if you can write it off as a medical expense
• You know the importance of different colors of mucus
• YOU have to explain to the idiots in the ER exactly WHAT CF is to get the proper treatment!!
• You get excited when a medication only costs $100.00
• Your medical equipments costs 5 times the value of all 3 of your vehicles combined!! (Recently got his vest - retail price: $16,500!)
• The cash price of prescriptions for your CFer, for one year, is more than twice your annual salary!! (VERY thankful for insurance!!)  And that's not including anyone else's meds!
• You know the value of tying dirty diapers up in plastic bags EVERY TIME!!
• You get excited every WEEK your CFer is NOT on antibiotics!! (none since the end of March - knock on wood!!)
• Your doctor tells you to buy a stethoscope
• Your doctor has a standing order for antibiotics for your CFer - all you have to do is call and say "I need antibiotics, these are the symptoms" and they're automatically sent
• You have your doctor's cell phone number
• You meet a TON of doctors in specialties you've never heard of
• You feel like a hospital is your second home
• You know all the shortcuts through the hospital
• You can recommend to others what to order and what not to order from the hospital cafeterial
• You plan your vacations based on the location of specialized Centers and travel with an envelope of medical records

Stay tuned for Part 2 of "You're A CF Mom" coming soon!!

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!!!