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, September 27, 2010

Monday - in every sense...

"It's a Monday kind of day."  Except today IS Monday.  And before it was even Monday, I knew it was not going to be one of the best days.

Sax spent the weekend being quite crabby - wanting to sit on Mommy's lap and wanting to snuggle.  He's been having some mild discharge from his left ear - fluid from having his tubes maybe?? I've never seen the discharge as liquid, just as dried waxy nastiness all over his ear and sometimes on his cheek  He seemed a bit feverish off and on during the weekend, but never too high.  He went to bed with Daddy, but as has been happening quite a bit lately, he insisted on sleeping in our bed.  At least, until he fell asleep.  When I went to bed about 12:30, I had to move him over to his crib since he falls asleep in my spot.

Raine woke up in the middle of the night last night crying because her ear was hurting - probably about 1130ish.  I gave her some ibuprofen and a warm wet rag for her ear.  That seemed to help, so I sent her back to bed about midnight.  I had a feeling.  I knew something was up... it was either going to be a long night or a long day....  Little did I know it was going to start before I was even out of bed!!!

I woke up to Saxon yelling.  Then Raine yelling.  Saxon throwing toys at me from the crib.  Then Saxon out of the crib and Raine yelling at him to get out of her room. And Daddy already at work.  Saxon yelling at me because I was trying to get him to lay down with me because I just wasn't ready to take on the challenges of today.  Raine yelling at me to get up cuz it's time to go to the doctor.  Wait, who's the parent here????

I got up and got the kids ready to go.  The kids were wild.  We were off to Same Day Clinic - I had called Raine in to school because we had to figure out why her cough wasn't getting better and why her ear was hurting so much.  We had to figure out why Sax has been feverish off and on over the weekend, why he's all gunked up, and why his ear is draining out.

For Monday morning Same Day Clinic was PACKED!!  We got to go up to Peds to see one of the docs there.  She actually knew a little about CF, which helped!!  Found out we'd had Sax on the wrong med - we had him on an anti-fungal instead of an antibiotic!!  (I guess that's because when I called and asked for a refill on his antibiotic, I was talking to the new pharmacist and I guess he doesn't know as much as the other 2 do.) 

Anyway, the verdict after all was said and done: Saxon has an ear infection in his left ear and that's what/why it was draining.  He's on ear drops and augmentin.  Hopefully this should clear everything up!!  He seems to be feeling better - he's LOUD again!!  And driving his motorcycle all over.  His nose is still running, but it's still more on the clear side, and that's just a fact of life with him.....  Raine has an ear infection in her RIGHT ear, and apparently has seasonal allergies now.... but her father did too.... so it shouldn't be too surprising.  She's on amoxicillan and Claritin now - funny that it's the same dosage as Saxon's!!

I have to take Sax for a weigh-in on Monday next week.  I called Vicki because he has dropped in weight again.  On the 13th he was 12.9 kg.  Now he's down to 12.3 kg.  It would be nice if he would just EAT... do like normal kids do and EAT, especially the fatty foods!!  But since he hasn't been feeling good, he's not even really drinking anything, even his PediaSure, the last couple days!!  We'll find out Monday what we do next...  **sigh** It was good while it lasted....

Here's him with his tired glazed look this afternoon, while fighting with Mommy about naptime......

So it was Monday.  Very much a Monday.  And I'm glad it's over.  Even if tomorrow isn't the best day in the world, it's got one thing going for it!!  It's TUESDAY!!

Monday, September 20, 2010

The first of the year.....

It was good while it lasted. 

About a week and a half ago, Raine started coughing.  Then her nose started running.  So Thursday, we took her into Urgent Care because her cough was getting worse, it was keeping her up at night, and her nose started running.  Just a bad cold.  Just postnasal drainage. (one of my LEAST favorite diagnosis!!)  At least they gave her some cough syrup with codeine to help her sleep, and Flonase to help with the congestion.

Tuesday night, Saxon's nose had started running a little bit, but it was clear.  Maybe it's just allergies?  He's on Claritin already.....  Wednesday night it was turning a little yellow.  By the time we got home from Urgent Care with Sissy, it was yellow-green - the beginnings of an infection.  Great.  At least there's no additional coughing!! 

Until Friday.  Mommy woke up with a sore throat and a mild headache - almost a migraine, but not quite as severe.  Not at first.  Saxon started sounding junky.  Mommy decided we're really not going to be going anywhere too much, except Mommy had to work at a show.  Sax snuggled with Mommy quite a bit, then when Raine got home, started getting pretty wild.  She would go into a coughing fit from rough housing, then he would start coughing and his nose would run.  (I'm glad we bought the 3 pack of Kleenex for school so we had the 2 extra boxes at home!!)  Mommy's headache was getting worse and worse.  Mommy wanted to take a nap, but that wasn't going to happen.  Raine went with Mommy to work, and Daddy tried to get the Scrappyman to rest a bit to see if he would feel any better.

Saturday morning. 

Raine is barking.... no, she's coughing.  Sounds like barking.  Her nose is red.... raw.  It hurts from blowing it so much. 

Mommy has a headache - would have to say it's a sinus headache, still bordering on a migraine.  Feeling nauseated.  Can't lay down cuz then I can't breathe.  Supposed to be going to a welcome home party for my cousin... had to send our regards.  My sinuses and throat and body aches almost had me convinced it was the flu.  But no fever.

Sax is congested.  His nose is running pretty steady now.  He's coughing more than normal.  His breathing is raspy.  He tries to cough, but can't get anything up, or just isn't spitting it out.  We added in another thumpy (vest treatment) with another albuterol. 

Daddy had to go get more albuterol since we were out.  Getting some meds for Mommy and for himself too.  We still have an antibiotic on file, so we get that filled for Sax too.  Pharmacy calls - no albuterol refills left!! Oh no!!  Well, I have doc's cell number - I text him, and minutes later he texts back No Problem!  By the time Daddy got to the pharmacy, all the meds are ready to go!  The vest was knocking stuff loose.  Just really wish he would spit it out.....

Mommy broke down and went to get some mentholated cough drops then took some Sudafed PE.  Helped to clear the sinuses a little.  Eased the headache a tiny bit....

Saturday night Saxon woke up in the middle of the night.  No, didn't wake up.  Just started crying.  Crying in his sleep.  Wouldn't wake up.  He was between Mommy and Daddy.  Tried calming him.  Tried waking him.  Eventually he fell back asleep snuggled up against Mommy.

Daddy always gets up too early.  Mommy is more of a night owl than an early bird.  Daddy was up with the kids and had them eating before Mommy was up.  Mommy slept a while longer, trying to get rid of the awful sinus headache. It finally accepted defeat around supper time!!  What a LONG 3 days!!

Sunday was just a lazy day all around.  Supposed to go to a family reunion, didn't want to let g-g-grandma down, but didn't want to get everyone sick or get the kids sicker or Mommy sicker.  We just stayed home.  Sax spent the day riding his motorcycle from the living room to the kitchen and back, or snuggling and napping with Mommy, or snuggling with Daddy. 

Raine hid in her room playing with her Barbies, happy her brother stayed downstairs.  By this evening, everyone seemed to be feeling at least a little bit better.  Hoping everyone is feeling better this week and no more trips to the doctor for a while!!  Sax has 14 days on his, so we'll see what happens!

Monday, September 13, 2010

What does it all mean??

After some recent incidents in our lives, I've come to realize that I have based this blog on an assumption. In the header, I talk about Saxon being diagnosed with Cystic Fibrosis. But I guess I never really explained what cystic fibrosis IS!

If you're looking for the exact meaning and want to take the time to sort it all out, there is a great website that can explain it all to you. For those who don't want to look it up on your own, I'll help you out a bit.

Cystic fibrosis is an inherited genetic disease. We receive one gene from each of our parents. If a person receives one copy of the mutated gene that causes cf and one good gene, the person is called a cf carrier. If a person receives 2 copies of the mutated gene, one from each parent, the person has cystic fibrosis. In the state of Minnesota, we are fortunate enough that newborns are automatically screened for this and about 50 other genetic defects. If it weren't for the screening, we wouldn't have found out so soon!

The defect in a person such as Saxon causes him to sweat out most of the salt in his body. The mucus in his lungs and organs is very thick and very sticky. It clogs his lungs and blocks his pancreas. As a result, kissing him tastes like kissing a potato chip. His skin tastes salty, especially when he sweats. He often coughs. He is very susceptible to respiratory infections and a simple cold can easily progress into pneumonia. This is why when Sax was in daycare, he was almost always on antibiotics. The clogging of his pancreas is what is causing his weight issues. The mucus doesn't allow his pancreas to release the enzymes needed to break down and absorb his food. This explains why he has so many bowel movements when he was first born - he WASN'T ABLE to absorb what he was eating! The balance of enzymes is very important - too few and he doesn't absorb enough, too many and he gets bound up.

Maybe this will help. A listing of all of his most frequent medications, and what purposes they serve.

Albuterol - What's that? A bronchodilater. It relaxes the muscles in the airways and makes it easier to breathe by increasing the air flow. More commonly used for asthma relief.
How taken? Nebulizer medication
Dosage - 1 vial once daily. When respiratory infections/illnesses/allergies are present, 2-3 vials daily.
Cost? - Approx $9 per month

ABDEK/Vitamax - What's that? Multivitamins. Since so much of his food is not absorbed, these vitamins supplement his daily menu.
How taken? Oral solution
Dosage - 1 ml twice daily
Cost? - Approx $15 per month

Claritin - What's that? An antihistamine. It helps to relieve sneezing, runny nose, and itchy, watery eyes. This medicine is used to treat the symptoms of indoor and outdoor allergies.
How taken? Oral solution
Dosage - 1 tsp once daily
Cost? - Approx $13 per month

Creon 12 - What's that? A pancreatic enzyme preparation consisting of pancrelipase, an extract derived from porcine pancreatic glands. Pancrelipase contains multiple enzyme classes, including porcine-derived lipases, proteases, and amylases. 12,000 USP units of lipase: 38,000 USP units of protease; 60,000 USP units of amylase capsules have a brown opaque cap with imprint "CREON 1212" and a colorless transparent body. The shells contain black iron oxide, gelatin, red iron oxide, sodium lauryl sulfate, titanium dioxide, and yellow iron oxide.
In English please? Basically, it's pig enzymes that Saxon has to take orally every time he eats. The enzymes help him to break down and digest his food, and also helps break down any mucus he swallows (although not completely). They come in 6,000, 12,000, or 24,000 units. They are effective for 40 minutes before he needs to be re-dosed. The dosage is based on weight. He upped to the Creon 12 when he was at 6 of the Creon 6 - less to haul and less capsules to crack open!
How taken? We open the capsule and dump the granules into applesauce (the acid from the applesauce helps the enzymes do their work) and he takes them orally
Dosage - 3 capsules with each meal or snack
Cost? - Approx $800 per month

Exlax - What's that? Stimulant laxative to relieve constipation - taken with Miralax to stimulate bm's.
How taken? Orally - chewed
Dosage - 1/2 piece of chocolate approx 1-2 times per week
Cost? - Approx $6 per box of 24

Miralax - What's that? Laxative to relieve constipation - non stimulant. Taken with Exlax
How taken? Powder added to beverage -orally
Dosage - 17 g approx 1-2 times per week
Cost? - Approx $6-8 for generic

Nasonex - What's that? For adults and children aged 2 years and older, NASONEX® Nasal Spray is approved to treat seasonal (outdoor) and year-round (indoor) nasal allergy symptoms. At least, that's what it's GENERALLY used for!! Saxon has used it per the referral of Dr Cofer, our ENT, since he was 1 to keep his nasal polyps from reforming.
How taken? Inhaled - Nasal spray
Dosage - 1 spray per nostril, 1x per day
Cost? - $200+

PediaSure - What's that? A vanilla shake that provides protein, vitamins, and minerals needed for healthy growth and development.
How taken? Orally - in place of milk in sippy's
Dosage - 3 cans per day
Cost? - Approx $50 for a case of 24

Pulmozyme - What's that? A synthetic protein that breaks down excess DNA in the pulmonary secretions of people with cystic fibrosis. Pulmozyme is used to improve lung function in people with cystic fibrosis by thinning pulmonary secretions and reducing the risk of respiratory tract infections.
In English please? It breaks down the film of dead white blood cells left behind after CPT and mucus clearance, and thins out the mucus still present to help the CFer cough it up.
How taken? Inhaled - nebulizer medication
Dosage - 1 vial daily
Cost? - $1600-$1900 per month

Tobramycin - What's that? Tobramycin, better known as TOBI, is an aminoglycoside antibiotic used to treat or prevent certain kinds of bacterial infections in the lungs. It will not work for colds, flu, or other viral infections. Often used for treatment of pneumonia.
How taken? Inhaled - nebulizer medication
Dosage - 1 vial daily when ill with pneumonia/respiratory infection
Cost? - $4,000+ per month

Zantac - What's that? A type of antihistamine that blocks the release of stomach acid. It is used to treat stomach or intestinal ulcers. It can relieve ulcer pain and discomfort, and the heartburn from acid reflux. Most CFers suffer from some acid reflux
How taken? Orally
Dosage - 1 ml twice daily
Cost? - unsure - once I know the cost of it, I'll update this!!

I'm working on a page of "key terms" which should be coming soon!

Any other questions you are curious about, just ask!!

The only stupid question is the question not asked!!!

Going Up Up Up....

Vicki just called. 

I miscalculated. 

When we were in Rochester, his weight was 11.3 kg. 

Today, his weight was 12.9 kg.

What does that mean?

That means we don't have to go back to Rochester until NOVEMBER!!

That means he is GAINING weight!!

That means he went from being in the 12th percentile for weight, all the way up to the 47th percentile!!

That is HUGE!!

That may not seem like much to some people, but for a little man with CF, that's HUGE!!

It means one less month of doctors.

It means one less day Daddy has to take off work for medical reasons.

It means one less drive to Mayo and exposure to the germs.

It means one more step in the right direction.


Busybody Boy

Saxon has been keeping Mommy and Daddy pretty busy lately.  He's been constantly GO! GO! GO!! But that's OK!! It helps exercise his lungs.  It keeps him healthy.  He's got quite a bit of his dad's spitfire in him too!!!  Nap time is becoming more difficult as he thinks he will miss out on something if he naps.  Yesterday was almost awful in the late afternoon because he REFUSED to slow down.  He could barely stand up!! But that wouldn't slow him down!!

I'm just amazed at how fast Saxon is catching on to things.  His new favorite kids shows are Umizoomi and Mickey Mouse Clubhouse.  He also LOVES watching Monster Jams (monster trucks) when they're on.  Last Thursday when Scot got home, Saxon went and climbed up on his lap with a book.  It was a Dora book about flying kites.  Well, that little stinker was pointing to the pictures telling Daddy exactly what everything was.  He's also starting to count!!  We've been working on just counting to five right now when he's in his vest doing treatments.  When Umizoomi is on and they ask the audience questions - Saxon ANSWERS them!!  When it's time to say Super Shapes or Pattern Power, he says it right with them!!  When they ask if the shapes fit or if something is right, he will nod yes or shake his head no - and he's RIGHT.... he's a smart little whip!!

Here's a few pictures of him watching Umizoomi and doing the "Umi Shake"

It's so funny watching him do that!!  Especially when it's time to "crazy shake" - he usually makes himself dizzy and about falls over!!

He also still has a thing for clothes baskets and Rubbermaid totes.  He will dump the clothes or toys out of them so HE can play in them!

Such a silly little man!!

We have temporarily upped Saxon's vest and nebulizer treatments.  He's been playing outside quite a bit, and he's been sounding kind of snotty and coughing a little.  We pat him on the back to try to get him to cough stuff out, but he can't quite figure out how to get it out.  We think it's allergy-related since he's not showing any other signs of being ill and he's not acting any different.  We're going to keep an eye on it.  If it doesn't clear up by the end of the week, I think I'm going to call Vicki or Dr Ulrich and see about putting him on antibiotics.

Saxon had to go to the doctor today for a one month weigh.  He weighed in at 12.5 kg at his last appointment.  This time he was at 12.9 kg.  I have a call in to Vicki to see if that means we are going in to Mayo in October or if we get to wait until November.  I'm also really hoping Saxon decides he's going to start eating more!!  He's drinking his 3 PediaSures per day, but he's still not eating too much... It's frustrating.  All we can do is keep trying!