Another Study

I'm glad today is almost over - it's been a busy, crazy day!  We spent most of it in Rochester.  When I say we, I mean me, Daddy, and Sax since Raine had school today.  It was a day of combined appointments.  And, unfortunately, I have no pictures to share from today.

My first appointment was at 7:15 am, so we had to leave home by 5:30.  Sax isn't allowed to come into the ultrasound room, so he had to stay in the waiting room with Daddy.  By the time I came back out, they had already left to go to Sax's first appointment, which was his PFTs at 8 am.  I caught up with the just as they were getting ready to check in.  Sax asked Daddy to go back with him when it was time for the actual test, so I camped out in the waiting room with my crocheting.  Scot said he did really well and was anxious to get the results, which we wouldn't see until Sax's last appointment.

After he finished his PFTs, we headed over to Peds for an appointment with the social worker.  This appointment was scheduled for 8:45 - but she didn't get there until after 9:30.  Wow.  We had requested the appointment with her because we are having some behavioral issues with Saxon.  We're not sure if it has anything to do with the baby on the way, because he never acted out like this when I was pregnant with Baden.  I've been getting worried because tantrums can last up to 2 hours or sometimes more, and sometimes involve him hitting and kicking people or throwing things.  We've both tried a variety of punishments, depending on the type of the tantrum and the behavior.  Nothing has been effective and we're lost as to 1) what else to try and 2) why he is doing this.  The only pattern we've noticed is that he claims to have "not gotten any rest" or he's "tired" and often correlates when he hasn't gone to bed on time the night before.  

We're also concerned that he has started exhibiting some OCD-type behaviors.  It's normal to wash your hands frequently, especially in the winter and especially when you are trying to avoid picking up germs.  Saxon has starting washing his hands up to 10+ times per hour.  If he touches the floor, if he touches his face, if he touches a toy that was outside, if he throws something away - almost any time he touches anything he insists on washing his hands with soap and water.  His poor little hands are getting chapped from it.

We talked through all of Saxon's behaviors and possible solutions.  She is referring us to some of her psychology associates to see what they suggest.  The first possibility is he is having sleep issues that we don't know about.  The other possibility she suggested was anxiety.  She left us to our next appointment while she checked into what to do next.

Sax's appointment with Infectious Disease (aka our CF nurse Vicki) went well - we found out his weight is 2 pounds, his BMI is up, and he's grown 1/2".  He did pretty good getting his throat culture - although Daddy had to hold his hands down so he wouldn't push Vicki away.  Vicki set us up for our next appointments for Saxon.  He'll be due back the beginning of March, so she put an order in for the first week since Baby Bump may be arriving any time in March.  Sax will be doing PFTs and meeting with GI, ENT, Infectious Disease, Pulmonology, and Social Work.

Vicki also told us that they are in the process of becoming an "accredited" CF center.  Currently they treat CF but are not accredited, but that doesn't matter to us.  We were told the only way it really changes is that at his appointment around his birthday, Sax will have all day appointments (which we already do anyway) from about 7:30 am - 2 or 3 pm and will be meeting with a few more specialists than he normally sees now, like Respiratory Therapy and seeing Dietary more frequently.

Dr P was Sax's last appointment.  We got his PFT results - 117%!!  And it's only the 2nd time he's ever done PFTs!  Overall Dr P thinks Sax is looking good, but is concerned about his keratosis.  Saxon and I both suffer the same skin condition where our skin doesn't shed right, which results in dry skin and the appearance of bumps on our arms and legs.  We are trying another kind of lotion to see if that helps, but we may end up vising Dermatology at some point.  

Dr P also decided that, since Sax's sinuses cause so many problems, we are going to put him on a regular regimen of antibiotics to prevent his polyps from becoming infected.  He's on a nasal inhaled steroid to help slow the growth of the polyps, but they don't prevent the infections.  Most of his colds originate from his sinuses.  Sax is currently on Bactrim 2x per day for a cold that he's just coming down from.  For the next 3 months when this round is done, we are going to be doing Bactrim 1x per day, every day, for 2 weeks on then 2 weeks off, to see if that prevents some of these colds and sinus issues.  If he gets sick in spite of this we will try to supplement with Augmentin.

We also decided on a new course of GI treatment.  Miralax and Colace can both cause your body to become dependent on the stimulation to keep bowels regular.  However, magnesium citrate does not have this same side effect.  We've noticed since he's started taking it, Sax has been having a lot less tummy discomfort, he is much more regular, and we've been able to eliminate his other 'bowel maintenance' medications.  Dr P agreed that we could continue with this course of treatment and reevaluate in 3 month.

While we were meeting with him, the social worker came back, consulted with him, and advised 2 current courses to pursue.  1) We were told to read a book on strong-willed children, follow suggestions in the book, and follow up with her in a week and 2) we will be pursuing the sleep study.  She also suggested we have Sax's iron levels checked, so labs were added to our day today.  (He did NOT like having his blood drawn - I could hear him screaming down the hall.)

Next week is going to be a bit of a stressful week.  I will be taking Sax to his appointments by myself, which won't be a problem unless the weather gets bad.  We have a consult on Tuesday.  Wednesday he reports for the sleep study at 7 pm.  One of us has to stay with him, which will be me since Scot will have to go to work in the morning.  I'm a little anxious about it.  I got some information about it and it doesn't sound like fun.  I don't think Sax is going to like have probes glued to him along with the other monitors.  We will be getting done sometime Thursday morning, then we'll have to be back on Friday to get the results.  We were told that there is a possibility that we may be able to get the results on Thursday, which I'm going to ask about at the consult since it would save us some driving!  At least we will know if his sleep is affecting his mood and temper after this!  If not, at least we can cross something off our list!

After Sax was done, I had a checkup with my doc for Baby Bump, which everything is looking good other than my blood sugar being slightly elevated still.  I had to get a new prescription for a glucose meter too since my insurance decided it wasn't going to cover strips for the meter I just got 2 months ago.  They made me switch to a more complicated and more expensive meter.  I swear, those people aren't very bright :/

After we were FINALLY done at the doctor's office, we made a few stops - went to the Girl Scout headquarters (which the store wasn't open, like I figured since it's Wednesday - so I'll have to go back next week), then Toys R Us (got a few Christmas presents even though Sax was with us!!) and Barnes and Noble (they didn't have the book, but Scot got a couple magazines and Sax got a few new things for home school!) 

But me.... I was just glad to get home and relax.... It's been a loong day!

Spring is finally here!!

It has been an odd spring so far.... especially considering we had a couple inches of snow only 3 days ago!!  Today it was FINALLY warm enough to turn off the heat and to open all the windows in the house.

I know I've been absent a bit from Bloggingland, but it's been crazy busy around here with doctor appointments, home school, and the house addition.  Sax is still working on home school stuff, but we have cut back a little bit and are focusing more on reading and learning words.  He's very independent and self-motivated though!!  I went to get his numbers workbook (which I had picked up at the dollar store) and found he had gone ahead and done a few pages all on his own!  I am so very proud of the work he has been doing and the effort he puts into it!!  He worries about missing out on fun or playtime, but I make sure he gets plenty of that.  Often he will work on his workbooks while his sister is doing her homework, so they are doing it together and he feels more like a big boy.

Since the weather was so nice today, we decided to walk to the park after lunch and play until Raine got done with school and we had to pick her up.  He loves going down the slide, and played on the swings for a while.  He also tried the monkey bars, which is pretty appropriate since he is quite the monkey!!!

When we got home from school, the two of them went out to play in the back yard since it's finally dried up a little bit.  Hopefully the clay won't stick to them too bad and the fresh air will wear them out.  If the weather is nice still tomorrow, I am thinking about taking the kids to the state park for a picnic since it sounds like daddy may have to work.

We are nearing completion on the house addition - the bathroom had a few more things it needs, the living room just needs trim and flooring, the mudroom and closet need paint, trim, and flooring (but they were intentionally left for last since everything had been piled in those 2 areas), and we still need to get the siding on the house.

On Monday Sax had to go in for a CT.  He had just finished his 4th round of antibiotics since January, and his nose was still running green and congested.  A trip to Urgent Care a couple weeks ago had found him to have a sinus infection, so I had alerted Vicki because I was concerned after so many rounds of antibiotics and the recurring stuffiness.  Dr P's flag went up too when he heard about it, which is why he ordered the CT.

Vicki called Monday afternoon to tell us that she saw a small polyp and some 'gunk' in his left sinus, and that it looked 'pretty bad.'  Dr P was out of the office for a few days, but I got a response from him today.  Vicki said he had looked at the scan and sent a note to Dr Cofer's office to see if Sax can get in for a check up sooner than what he's scheduled.  Apparently the "gunk" Vicki thought she saw is actually flesh and is most likely more polyps.  He put Saxon back on another antibiotic - this time 3x per day - that he will stay on until we get in to see ENT.  Dr P is pretty sure Sax is going to need yet another sinus surgery, and soon.  So now it's a bit of a waiting game.  If I don't hear from ENT by Friday, I'm supposed to give them a call.  So hopefully we hear from them soon!!!!

Checkups and Norovirus

Sax had clinic on 2/18.  His chest xrays came back clear, his vitamin levels were good, and his weight was steady.  It was a full and busy day, with clinic appointments from 7 am until 4:15 pm.  We did our best to stay busy in between.  We got a beautiful view of the sun coming up. Saxon got to stay in his jammies for about half the morning just because we had to be at the clinic so early.  Some pictures from our day:

Sunrise over Rochester

Tired little boy

playing his leapster (Thanks Nana and Papa!)

Later in the day, my boys snacking, waiting for the next appointment

Daddy loves his Coke!

Got bored, so played with the wrap from his blood draw



Got a little snow while we were waiting

The only negative from his appointment was his culture results.  He cultured h. influenzae again, which is normal, but the amount that he cultured was high.  Dr P prescribed a 2 week treatment with Bactrim for him, which we started the following Saturday, Feb. 23.

On  Feb 26 Sax started having some tummy issues and was throwing up in the morning.  We had thought maybe it was from the Bactrim, except he'd been on it long enough that it didn't make sense.  He laid about most of the day and really didn't eat much or drink much.  Around 4:30 pm, we had some popcorn, which I thought would be good (like crackers) for his tummy.  That didn't stay down either.  This pattern continued all the way through Saturday, so he really didn't eat much of anything and wasn't drinking much.  I was worried about dehydration, so I called the clinic.  They had the same concerns I did and suggested getting him on Pedialyte to try to prevent dehydration.  It took him until today to finally finish off one bottle of it.  He has had a couple PediaSures since Saturday too, but he still isn't going to the bathroom much.  They are pretty sure his vomiting was caused by norovirus.

Last night when Sax started getting tired and whiny, I suggested he lay in my bed for a little bit.  He had been really clingy and had a few meltdowns.  He just didn't seem to be feeling very well and just wanted his mommy.  He had been coughing a little in evening too, which got worse as he was laying down, and he was breathing kind of heavy.  After an hour or so of tossing and turning, he decided he wanted to lay in his bed and wanted me to lay with him.  Less than an hour later, and more tossing, turning, and coughing, we decided to come down to the living room.  Sax said his throat, tummy, and back all hurt.  In the end, he slept on me in the recliner.  He was still up about every hour, so I decided we needed to call in to the clinic again.

When I heard back from Vicki, she thought this had been going on long enough, so we went in to see our local CF doc, Dr U.  Apparently mono and strep are going around in addition to the flu.  All of his labs came back normal, but there is a chance that the 24 hour strep culture comes back positive.  For now, we're going to go back on the Bactrim and really push the Pedialyte.  Unfortunately his weight dropped from 16.4 kg at his checkup on 2/18 down to 15.4 kg today.  He's so skinny as it is, we need to really push to get his weight back up.  He doesn't have any extra fat or weight he can afford to lose.

I was really happy that Sax's appetite seemed to perk up a bit at supper tonight.  He ate a whole DQ hamburger (minus the bun), a big scoop of mandarin oranges, and half of a mini M&M Blizzard for supper, and about an hour later he asked for a piece of jelly toast and ate a little over 1/2 of that.  We're going to be hitting the PediaSure and DuoCal hard this next week, and adding in some ScandiShakes.  I have to call or email the clinic tomorrow to let them know how he's doing, and I'm going to see about getting him back on weekly weigh-ins at our local clinic.  That way we can keep better track of his weight and catch any drops right when they happen.  Hopefully he'll be feeling better soon!! (and hopefully I'll have time/remember to update again soon!)

Best. CF. Clinic. Visit. EVER!!!

Even Vicki and Dr P said it was... but I'll get to that in a second.

We finished up our Christmas shopping today for the kids, save for a few stocking stuffers left to pick up.  Scot, Sax, and I hit up Mill's Fleet Farm first, then hit up a restaurant we've never tried before thanks to a recommendation of a friend: Whistle Binkie's on the Lake.  Nice view, good food, and decent prices :)  We'll be going there again!  We're always looking for somewhere differet to try instead of the usual haunts, which can get old after a while.

Sax did what I can only describe as the most disgusting thing I can think of.... Daddy took him to use the bathroom.  While Daddy had his back turned, Sax decided to wash his hands - thinking the "pee biscuits" in the urinals were soap!!! GROSS!!!  Daddy scrubbed Sax's hands and gave him a huge lecture on what IS and what IS NOT soap.  Ugh - makes me shudder!!!

Sax had to be at the clinic at 1 for his GI appt.  It was just an annual check and everything looked really well, save for some mild bloating.  Dr E ordered a celiac test and vitamin check for his next checkup in Feb.

After GI, we had appointments with Vicki, Dr P, then the dietitian.  I wasn't sure why we were meeting with dietitian other than Sax's BMI has been varying so much.  I figured it would be another pep talk about getting him to do the impossible and gain some weight.

Vicki was in a really good mood when she came in for her appointment with Sax, in spite of a horrible head cold and sinus infection (very thankful she didn't want to share and masked up!)  She checked Sax out and send Dr P in for his part of the checkup.  Dr P seemed a little more excited than normal too... we wondered what was up.

We were told that, since Saxon started coming to CF clinic, he had his very best checkup.  Ever.  They said they have not seen him this healthy in the past 4 years.  His pulse ox was 100% and all the gunk in his lungs has cleared out.

The reason for the appointment with the dietitian, we discovered, was a final push to put some chub on the little man because in January his BMI was 59%, in June his BMI was 37%, and in August at his last appointment his BMI was down to 18%.  With the rate of decline, the discussion of a feeding tube was being approached again.

Well, Sax decided that's not what he wanted - because he finally gained weight.  And quite a bit for the time period!

He went from 14.9 kg to 16.3 kg in the last 3 months.

His BMI went from 18% to 64% in the last 3 months.

For someone with a serious life-shortening disease, hearing that he checks out the healthiest they've ever seen is one helluva reason to celebrate :)

So for his dietitian appointment, we spent the time discussing how we can keep him gaining, and what's going to happen when he turns 5 and we can no longer get WIC to cover his PediaSure.  The dietitian sent me some links and also suggested I look into finding 'homemade pediasure' recipes, which I've started checking into.  I'm hoping we can experiment and maybe find something that will work before we actually do run out of PediaSure.....

What a Bunch of CRAP! (a continuation of crappy conversations)

For those who may be weak of stomach, this is another one all about the poop - such is the life of a CF mom!!!

Sax had a bit of a poop last night, but nothing compared to his normal.  When they told me he was packed in, I told Vicki I just had to see it!  Yeah, morbid, but I'm getting pretty good at reading scans, so I wanted to give it a go.  I'm sure even if you can't or haven't read scans before, you can probably tell what this is....

All those wonderful bubbles on there are gas :(  Which is not coming out!  He's still not drinking the Golytely with the koolaid, so now we are mixing into his PediaSure, even though that's not generally recommended. But right now, we're in a state of "whatever it takes."  Vicki suggested I give him some more Miralax too, but I'm a step ahead of her on that one!!

After talking to Vicki, and her relaying the information to Dr P, we have a new game plan.

1) PediaSure mixed with Golytely - adding as much as he'll stand.
2) Pediatric Fleet Enema - administering round 1 tonight
3) Pediatric Fleet Enema - administering round 2 tomorrow morning
4) If progress is not being made at that point, contact Vicki's office for a 9am appt Friday
5) Friday morning - insertion of an ng tube and administration of Golytely through that. (note to self - bring jug of Golytely with if we go over so we don't have to buy more)

The hope is that once his colon is cleaned out via enema, hopefully he'll be able to go.  If he hasn't gone a significant amount by tomorrow at 3pm, Vicki will insert the ng tube, then we will have to spend most of the day walking around at Mayo.  That way, if he pulls the tube out, she can reinsert it.  He won't be able to actually come home until he starts going more, and if he doesn't go after THAT, then he'll be admitted and more drastic action will need to be taken.

So I guess we're praying for a crappy night tonight!!!

Over Packed (another crappy conversation!)

My CF family understands, but a word of warning to the rest of  you who aren't used to it - this literally WILL be a crappy conversation, as much of the CF life is centered around bm's and all the joys that go with them.  So if you have a weak stomach, you may not want to proceed!!


Turns out we're not going to Mayo - at least, not yet anyway.  After talking to Vicki this morning and not seeing any progress past the two little nuggets yesterday, Dr P decided that Sax needed an abdominal scan so we can see what's going on in there.  The order was sent to our local clinic to save us the hour drive unless it was necessary.


Sax was GREAT for his x-rays.  I noticed his abdomen seemed a little more distended than it did earlier this morning.  We had to wait a few hours to get the results from Rochester.  And, being the sadist I am, I asked that they send me a copy of the films.  Morbid, huh? But she is sending them via email tomorrow!! Haha!


What did they find?


Poor little man's entire colon is packed full.  Then there is a pocket of gas.  Then his lower intestines are packed full too.  My poor baby :(


I guess the good news is that all the poop is just packed and there is no obstruction.  From the looks of the picture, I'm told, it looks like some of it is quite old.  Which mean it, like his gas the past few days, will stink to high heaven when it finally comes out.


Of course, I asked right away if we're doing an enema or what the plan would be.  Unfortunately because of how unbelievably sticky CF poops can be, Dr P said it would be in effective.  So instead, we're trying something called Golytely.  Normally it's given to adults before a colonoscopy and apparently has an awful taste.  The usual dosage is 1 L over 24 hours, but we're supposed to try to give him 1 L over 12 hours (or however quickly we can get him to drink it).  It can dehydrate him, so we have to give him other beverages in between.  We were told he most likely won't want to eat much and he will probably have some stomach cramping - but it's better than the alternative!  He can be on this up to 3 days, and is supposed to continue it until 'stool is clear' - ie, he's basically pooping water :(

It has a slightly salty smell to it and Sax doesn't really seem to like it much.  We were going to wait until tomorrow to start it, but I think it's worth Mommy missing out on a little sleep to make my little man feel better.  We were told to add some sugar-free KoolAid to it to help with the taste - Vicki suggested Cherry or Grape covers the taste well. 

We are supposed to add it directly to the Golytely one sippy cup at a time.  They also said it tastes much better served ice cold, so we even dropped a couple ice cubes in there.


With doing this 'clean out,' I am a little disappointed though.  We have Sax pretty much potty trained until he started having trouble pooping.  We had to buy some more pull ups (Walgreens brand, which we love!), baby butt cream just in case, and wipes.  We were warned that the first couple will be pretty normal poops for him, but they are going to get looser and looser until he basically will have no control.  This will really help with the clean up part at least!!


The little bit of the Golytely he's already drank tonight has helped - he had his first poopy! It wasn't very big, but still, it's progress!!!! Yay!!!!  

Rochester-bound?

We started Sax on the double dose of Miralax on Friday as suggested by Rochester.  I was gone all morning on Saturday because I had class, but Daddy told me Sax had an 'accident' and pooed in his pants before he got up out of bed - probably because of the second dose.  That's ok, he couldn't help it.  Daddy got him to poo again on the potty chair Saturday morning. 

He hasn't gone since then!

No accidents, no more on the potty chair, nothing!!

He's been wetting plenty - and not having any acccidents that way.  He isn't even having as much gas anymore either.  There are a few stinky ones now and then, but not nearly what he was having before, which is good.

But he hasn't pooed since Saturday morning.  And it's Monday night.  And he should be having one a day.

If he doesn't go tonight, we're supposed to call Vicki back in the morning.  We may be Mayo-bound for a flush.

But this would actually be a good thing.  They'll be able to clean it all out and prevent any serious blockage.  We'll see what happens.

Keep Saxon in your prayers tonight that, if we go tomorrow, it everything "comes out" ok.

The Stinky Man! (it's a crappy conversation!)

I put a call in to Vicki today.  That's not a new way to open a post!

I've been a little worried, as a mother should be when something isn't quite right.  And when you can't put your finger on exactly what isn't right, it makes it that much harder.  Sax had been doing so much better with potty training, only having a few accidents with bm's but almost no wet diapers.

Well, this past week and a half, it feels like we've been going in reverse.  He's been hiding and having numerous accidents, both bm's and wetting.  I've talked to a lot of other moms and many assure me that "it's just a phase," which is what I've been hoping.

But then I started thinking....

One of the big issues with CF is the size, consistency, and smell of bm's.  (ok this is gonna get a little gross)  We've accused him of having accidents because quite often he has been smelling like he did.  Extremely potent poopy smells - enough to make this CF mama (who is used to the smell) gag!  He's been grunting and straining a lot when he passes gas.  I noticed that these gas episodes started about the same time he started having accidents too.  I suspected they may be related.  Which is why I called Vicki.

Sax is on omeprezole (Prilosec) which should take care of any gas issues he has.  He is also on a pediatric dose of Miralax 1x per day, which should help with constipation.  I asked her is we should consider a consult with Dr El-Youssef, who is Sax's gastroenterologist.  I wondered aloud if there may be something bound up or blocking in there.  I also wondered aloud to her if maybe when he's straining to push out the gas, he's just pushing so hard that he can't help but have accidents.  He doesn't seem to know whether he had an accident or if it was just gas, and has often told me he pooped when he hasn't, and vice versa.  We know he is absorbing the fat and calories he's getting because his bm's aren't greasy at all.  They have actually been quite hard.

Believe it or not (I didn't know this) CFer's actually can get constipated.  Which is what Vicki thinks is happening.  She thinks the gas we're smelling is old gas trapped behind some extra-sticky poo caught up in his bowels.  That's why it smells so horrible.  Even though he's still going, he's not able to get everything out.  And she agrees that may be why all of a sudden he has started having accidents again.  (Besides the occasional one every kid his age has because they're too busy playing and "forget"to go.  Knock on wood - he hasn't had any accidents in his bed either!!! yay Sax!!)

So now the treatment plan:

• Lots of water
• Lots MORE water
• Double up on Miralax dosage with pediatric dose
• Vicki will check with Dr El-Youssef to see if there is any added treatment needed
• Vicki will call me on Monday to see if it helped.

The downside to the increased Miralax is that any "accidents" will be messier to clean up (good thing laundry is pretty much done!!)  On the bright side - he did poo on the potty chair today!!!  Those are few and far between! 

(As I'm typing this, Raine is yelling at Saxon that he pooped his pants - but it's just the gas :(  My poor little guy.)

And to leave you with a laugh, here's his bear wearing his (bleached) underwear.... (don't mind the pile of unfolded clean clothes in the background!!!)

Prilosec Pills and Omnicef

I have some updating to do, as usual.  Up until today, we haven't had too much in the way of health issues for the little man. Or, not major ones anyway.

Sax just moved into his sister's room into new bunk beds.  He likes going to bed more now because he has a big boy bed now!  The top is a twin bed (Raine's bed) and the bottom is a full-size futon (Saxon's bed).  For now we're leaving it set up in couch format since that's all the bigger his crib mattress really was anyway.  It seems to be ok with him, plus he kinda sinks into the crease, so he doesn't move around too much and hasn't fallen out.  As a precaution, Daddy has been putting up the baby gate in the hallway so that if Sax tries to go from their room to ours, he can't accidentally fall down the stairs.  (This isn't too much of a problem unless pregnant Mama needs to use the bathroom in the middle of the night!! lol!!)

We tried Sax on Prilosec liquid suspension for a while.  This was a total failure.  He hated, and I mean HATED, the taste of that.  No matter how we tried to disguise it or hide it or mix it into anything else, he still wouldn't take it.  Well, Vicki came through for us again.  She called and asked if she had heard me right when I said before that Sax was swallowing his enzymes whole.  This was GREAT for the little man!!!  There is a 10mg Prilosec capsule that is very similar in size to Saxon's Creon 12, which is the right dosage for him.  Well, since he'll swallow his enzymes, we just told him it's like a white enzyme, and he swallows it with no problem!  If this works like it's supposed to, it SHOULD cut down on his tummy problems even more, help him absorb more of his food, and boost his weight.  We're keeping our fingers crossed!  He's already started eating more!

We are also monitoring Sax's weight since at his last appt he was down again.  I have set up bi-weekly weigh-ins with the clinic here in town.  Last week, Sax weighed in at 14.2 kg.  Today, when I had to take him in to Urgent Care, he weighed in at 14.4 kg.  Pretty good for only a week.

Yes, we were in Urgent Care today.  Not fun.  Tuesday Raine had been sent home from school with a sore throat and fever.  She's started a cold around Saturday or Sunday with a little coughing and a runny nose.  Took her into Urgent Care when the school said that strep throat was going around.  Sure enough, strep and an ear infection.  10 days of antibiotics for her.  I kept her home Wednesday, per doctor's orders, while the antibiotics took effect.  Wednesday night she was up half the night blowing her nose and coughing again like she did Tuesday night, so I kept her home on Thursday too.

The problem with having a sick child at home is that the other will usually end up sick.  I'm surprised it took as long as it did. 

I tried to keep the kids separate, Raine kept her hand sanitizer and Kleenexes with her at all times.  (Poor girl has been blowing her nose so much that she's been having nose bleeds.)  I told her she needed to rest so that she'd feel better.  Couldn't send her to her room to lay down because then the little man wanted to be up there.  He wouldn't nap and would just keep her up, so I just told her to lay on the couch.  Her number 1 complaint?  "It's no fun having to rest and watch your brother play!!"  Of course, this meant about every 5 minutes I was telling her to get back on the couch, or telling him to get off the couch and off his sister, or telling her to put his toys down before he spread too many germs.

Today we sent her back to school - she wasn't resting much at home anyway.

This morning, at 5 am, we got a wakeup from Sax, wanting to crawl into bed with us.  And sounding congested.  And gunky.  And just plain clogged up.  Have you ever listened to someone talk or breathe, and you just can't help but clear your throat or cough because you can just hear the junk in their throat??  That's what he sounded like.  And as much as he coughed, it didn't sound like it was loosening up.  Him and Mama went to sit in the recliner so that he'd be a little more elevated and could maybe breathe a little better.

Daddy did a thumps and nebby treatment on the little man about 6 am.  Sax and I went to Urgent Care about 8 after dropping Raine off at school.  The nurse thought it was cute that Sax knows the routine for getting weighed in - walked over to the scale and took off his shoes, then stepped up like a big boy!!  We went to the exam room and waited for the doc from there.  I made sure to let them know that yes, he's already gotten his flu shot (family activity Tuesday night - lol!!  Except for Raine, who can't get hers until she's feeling better.) 

The doc we saw today was a new one for us.  Her name is Lynn Kelley and she is semi-retired.  I was very surprised when I told her about Sax's CF, and she said she spent some time studying specifically in CF!  She also knows Dr Henry, the other pulmonologist that we see at Mayo when Dr P is gone.  We thought that was pretty cool, and she completely understood our concerns with Sax's breathing.

Sax did pretty good for his entire exam, including his throat culture. She said his lungs are sounding good and pretty clear. His O2 sats are 98% (which she said was due in part to his morning nebs), and his ears look fine. She did think his throat looked a little red and irritated and his glands are a little swollen. The rapid-strep test came back negative, but she said they will still culture it and I may get a call in a day or two if it changes. I asked if we could do an antibiotic to fight the cold/congestion and to head off the possibility of strep. She said that's exactly what she thought too - and the antibiotic will help prevent the cold from turning into pneumonia too.  Sax is sounding pretty hoarse anyway and he's got a pretty nasty, barky sounding cough.  It's the kind of cough that makes your chest hurt just listening to it.

We're running him on a 10 day dosing of Omnicef.  Hopefully with the changed medications, we won't have the same digestive issues we've had in the past with it.  Honestly I think Omnicef is about the best antibiotic he can be on since it seems to really take care of the problem pretty quickly.  I was surprised that the dosage is so low (only 1/4 tsp) but Sax love the strawberry-vanilla flavor and asked if he could have more after taking it.  We're keeping his treatments at 3 times per day - hopefully that will do it.

I'll post later in the week with how he's doing.

Checkups for Sax and baby

Haven't posted in a while, but fortunately there hadn't been anything to post about!!  Saxon's checkup 3 months ago was good, with the exception of him needing to gain weight.

Yesterday we were back in Rochester for another 3 month checkup.  Unfortunately this appointment wasn't all we had hoped it would be.  Our first appt was with x-ray.  Of course Daddy had to take him since Mama can't go in there with the little one on the way!!  Sax did NOT want anything to do with the x-ray - he screamed and fought Daddy enough that he had red spots under and around his eyes.  As soon as he was done with that, it was on to see Vicki and Dr Henry.  Normally we would be seeing Dr P, but he is out on medical leave.  He should (hopefully) be back sometime in Oct, but they're not positive.

Sax's weight is at 14.4 kg, up only .1 from his last Rochester visit, but up .4 from his 3 year checkup here in Albert Lea.  Again we were told to fatten him up!!  (We figured that one is a given.)  He fought the throat culture like crazy too, when he had been doing them so well.  Dr Henry pulled up Sax's x-rays when Vicki was done with him, and the films didn't look too well.  She pointed out how there was more infiltration in the upper lobes of his lungs and along his heart line.  (For now we are upping Sax's CPT to 3x per day and adding in 5 minutes of manual CPT on each side for those upper lobes.  The way his vest fits, the upper lobes are where the straps are, so there isn't as much compression in that area.  Hopefully this will work!!)  She said there was a spot on the lower part of one of his lungs that she was concerned about.  Dr Henry said the spot is either a dense clogging of mucus, or could also be a spot where part of his lung has collapsed.   This showed up on the May x-ray also, I guess, but Dr P never mentioned it.  Sounds like for now they are just going to watch it.  Sometime next week we should have the results back from Sax's throat culture.  After discussing the awful effects of Zantac with friends on CysticLife, we've also gotten Dr Henry to give Sax a prescription for Prilosec to see if that will work.

Today Mama and baby had a checkup - 21 weeks, 3 days.  We found that the pocket of blood has not dissipated at all - looks to be about the same size it was before.  Mama is still bleeding.  Baby weighs about 1 lb now, though, is the right size, and the baby's heartbeat is strong.  We weren't to excited to find out the baby still has echogenic bowel.  This could mean either 1) the baby swallowed blood and it's taking a while to digest, or 2) it could be a precursor to meconioum ileus, which would mean the baby would have CF.  If it is meconium ilius, the baby will likely need surgery right after birth.  Of course, the surgery would have to be done in Rochester.  We have told our doctor here, Dr Yahya, that we would like to have the baby in Rochester.  We have already been over to see a high risk specialist there, Dr Rose.  According to Dr Rose, the game plan is that we will start steroid injections at 24 weeks to help baby's lungs develop.  Because of the complications I have been happening (which, according to Dr Rose, are rather rare) he said it is quite likely the baby will come before 34 weeks.  He also said they would be following my pregnancy a lot closer and we would have frequent ultrasounds.  I need to call him to see what the plan is.  Albert Lea doesn't seem too willing to follow what the specialist says.  We may end up bypassing Albert Lea altogether depending on what Dr Rose says.

Hopefully we'll find something out soon and get everyone on the same page.  It's hard to manage care when people aren't communicating and the right hand doesn't know what the left is doing!!

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!! :-)

Spring Cleaning

Oh, it's beautiful outside!!  The temps are up to the 30's and 40's this week - which is a big deal in Minnesnowta in February!!  Everyone's getting spring fever and thinking about airing out the house, along with the cleaning to be done!!  Our little CFer is doing a little "spring cleaning" of his own.

I called Vicki again this morning - big surprise for me, right?  Every blog entry I have pretty much starts or ends with "I called Vicki" - lol!  But we love her so much - she's like family, especially for all she's done for us!!  I told her that Sax is sounding a little rattly - very little if any nasal discharge, just a little more rattling in his chest than normal, no fever, appetite is fairly normal (for him). 

She says everything sounds good, if he was bigger, we'd ask him to cough to try to get him to get the stuff up.  She laughed when I said "Saxy cough" and he started coughing on his own (a little game we've been playing to 'teach' him to cough - which is actually really good for him and his condition!!) 

Basically what's going on?  All winter he's been indoor in dry air.  Even with the humidifier running, the air indoors is not as moist in the winter as in the summer.  Spring is actually the best time for CFers because there is SO MUCH moisture in the air.  His nebby is supposed to help him breathe in more moisture, but we only nebby 20 minutes 2-4 times per day.  Now that the snow has been melting, the moisture content of the air is increasing, and he's breathing in more of that moisture, plus he's been running and playing a lot more outside.  The mucus in his lungs has been dry because of the dry air, but now the mucus is starting to absorb the moisture too.  This is causing it to loosen up, which is causing the rattling.  If we get him to intentionally cough, he may be able to knock it loose and get it out!  I asked, "So basically, for him, it's spring cleaning?"  She said she never thought of it that way, but yeah, that's probably the best way to describe it!  The spring air is cleaning him out.

So what's the plan?  Sax is going to get 3 CPT (vest) treatments per day now until he stops rattling.  Vicki doesn't work Thursdays, so if anything changes I'm supposed to call her Friday.  She was also leaving a note with Dr P.  Giving him an extra albuterol treatment is optional - depends on if HE wants it too, or if he seems to need it.  Otherwise, we're back to Rochester next Wednesday for his next checkup.

I'm going to leave you with a few pictures from Friday night - bowling with the kids!! 

Baby Thumpy!!

I was trying to get my little man into his vest and he handed me Raine's baby - "No Mommy!! Baby thumpy!! Baby nebby!!"  He went so far as to try to get out of his vest and put it on the baby.... Oh, I love this little man. He keeps me on my toes.  He's decided now, when he does his morning treatments, he doesn't want to sit on my lap after he's done with the nebby - which is good that he's moving around and exerting his lungs more.

Saxy with his bear and Raine's baby.

That bug he had took a little while to let go.  He was getting better, then got worse, coughing, fever, not eating, lethargic.  We had to make another trip up to see the PA, and made a call to Vicki to keep her posted since we had no idea of what was going on.  Thankfully we didn't have to go back to Mayo!!  They figured it was just a virus that was hanging on a little longer than normal.  He got his appetite back for a few days.  Now it's been 3 days since he's eaten a good meal - it was lunchtime on Monday when he ate a full meal.  It's frustrating, especially since it's so important for him to put on the weight!!!!  I'm hoping that it's a 'stage' and that he'll outgrow it soon!!!!

We have 2 weeks until Sax's next appt in Rochester.  And 2 weeks until Daddy gets his CF tattoo :-)  He's really excited about it - wanted to be sure he gets it before the Walk on May 7th!  I'm not even positive what it's going to be - don't know if he does either - just know he has the time scheduled. Mommy already has a Saxy/CF tattoo....

When it was fresh - purple rose for CF, 4 leaf clover for my little Irish man.

Our fundraiser is all planned - just need to get the posters made now and start hanging them up :-)  We are serving Sloppy Joes at the Aragon Dart Tournament 11am-5pm on Saturday March 5th.  The price is $3.50 for a sandwich, potato salad, and chips and $2.00 for each additional sandwich.  All proceeds benefit the Cystic Fibrosis Foundation. We are still looking for volunteers for 3 hour shifts - 11-2 or 2-5.  Please contact me if you would like to help serve or hang posters!!

The Great Strides walk is coming up on May 7th at 9am.  We walk rain or shine.  We have Strides for Sax team t-shirts available for anyone who is interested in walking.  You can register by visiting our Great Strides website.

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...