Results

So I talked to Marilyn (our nurse at ALMC) today.  The culture results are in.  The results are negative - nothing was found in his bm's.  So that closes that one out.  I also talked to Vicki yesterday.  (We had to order more enzymes but we had to have her fax in the prescription because of his increased dosage.)  I told her about the appointment on Thursday and how I was waiting on the test results and that the x-rays only showed that his abdomen is distended because of gas, which we already knew, but there is no blockage.  Based on what Vicki told me, with the stool cultures coming back negative, we can pretty much chalk it up to the Omnicef (antibiotics) that he's on right now, because they can cause stomach flu-like symptoms.  He's on those until Thursday since all antibiotics for our little CFer have to be a minimum of 14 days.  By Monday, Vicki thinks, Saxon should be back to normal with eating.  Since he's still pooping, our big concern is keeping the weight on him.  There's no way he can be having daily poops with barely eating anything and keep up any weight gain.  We really don't want to go with a feeding tube, so we need to figure out WHAT is going on!!!!

Christmas Eve....

The kids are tucked away in bed, waiting for Santa to come as they sleep, excited to see all the toys and goodies they've been brought....  They deserve it... They're good kids..... 

Saxon is not back to 100%.... We had an appointment yesterday at the ALMC clinic.  Vicki told us that if his appetite wasn't back and if he was still having bad gas and irregular bowel movements, we would need to take him in.  I tried to get in to see Dr Ulrich, but he wasn't available, so we were referred to see the PA. 

The abdominal x-ray showed his abdomen was distended from gas.  Nothing else seemed to be abnormal, and his temperature was normal.  Andy, the PA, requested a stool sample, which had to be refrigerated and be brought back.  We were SURE to bring it back right away this morning!!  I didn't want that stinky poop in my fridge!!!!  I feel bad for whoever has to deal with that in the lab -- I wouldn't wanna be the one who opens that container!!  I have built up a tolerance for the CF smell, but even I was gagging when taking that sample!!!  So that's some potent poo!! lol!!  In the meantime, Vicki wants Sax on Miralax through the new year....

Tonight Sax did eat some ice cream.  I guess that's better than nothing.  And a few cookies.    Since he's not eating much, I'd rather him eat that than nothing....  I'm hoping we get some answers when the test results come back...... and that he doesn't lose any weight in the meantime...  But until then, we're going to try to have a good Christmas. 

(He was excited to open his Christmas Eve gift though!! A train from Raine, after they sprinkled reindeer food out in the yard)



Spreading reindeer food for Rudolph



(Hoping for) A Merry Christmas

Well, Saxy went back on antibiotics on Thursday.  He was getting pretty congested and had a lot of green nasal discharge.  He was breathing pretty loud at night and was running a low grade fever too.  Not fun!!!  He's on Omniceph, which seems to work pretty good.  We have to get it refilled about 10 days after getting it filled because once it's mixed, it's only good for 10 days.  He seemed to be feeling better after only 2 days, so that's a positive sign!!

But over the weekend, he started acting different....  We went shopping on Sunday, and he was getting crabby every time he passed gas.  And it's large amounts of gas, like an adult would pass.  It seems to be hurting him.  He hasn't been having as many bm's since we upped his enzymes, which he's not supposed to, but they have been VERY large.  He tells us he 'pooped' every time he gasses, and he cries.  He cries in pain for hours, and is inconsolable.  I called Vicki before doing anything since we can't mix meds with everything he's on already.  His Zantac should be taking care of the gas.... Vicki thinks that he's not completely emptying his bowels, so back on a regular dose of Miralax to help move things along.  I'm supposed to call Vicki back in the morning to let her know how things are going.  If he's still gassy and upset a lot, we may have to take him in to have an abdominal x-ray to make sure there's no blockage.  We will be able to do that here with Dr Ulrich, our regular doctor. 

Here's to hoping we don't have spend Christmas at or in the hospitals!!!

Living in MinneSNOWta!!

First blizzard of the year - and a full-fledged one at that!!!  It started about 7pm Friday night with rain and freezin rain and switched over Saturday morning.  We ended up with around 8 inches of snow between about 7am Saturday morning and lasted until the wee hours of Sunday morning.  Areas about an hour north of us and areas an hour east of us ended up with 15+ inches.  Daddy had a fun time trying to dig us out today - we couldn't even open the back door because the snow was part way up the door!!  And, as luck would have it, our snowblowers are not working!!  He got us dug out with the help of the neighbor's snowblower and the other neighbor's nephew.

The kids and I went grocery shopping on Friday after Raine got out of school - and it was CRAZY already at 3pm!!  We needed milk, eggs, bread, potatoes, and some snacks- ya know, the normal stuff - but the milk and bread were about sold out, not to mention the bottled water!!! (what happened to the days of just melting snow during a blizzard?  or filling empty milk jugs with water??)  Sax was really excited since we actually got one of the kid carts (for the first time).  I put a bag of taters in it right away so he wouldn't tip it over going around corners!!  Just had to be careful, though, cuz he had his own ideas of what he wanted to get....

Saturday the kids spent the day playing together pretty well, and Saxy clung to Daddy a lot.  Daddy woke up early and wasn't feeling too well. Mommy was sick all day, so spent a lot of the day sleeping, or trying too.  Stomach bug.... not fun!! It's a shame it was too cold to go out and play in it today!!  Our high temp was 0 degrees with a -15 windchill - not ideal for the kiddos especially since Sax won't keep his hat or mittens on!!  Maybe later this week we can get out and play - it's supposed to get up to 18 by Wednesday!!  If I can only find a way to keep him bundled up.... Hmmmm.....

My heart aches...

Why do bad things happen to good people??  Why do thoughts cloud my mind and try to drive me to insanity??  Why must there be so much pain??  Why can't we do more to protect our children??

My thoughts have been driving me crazy lately... just reflecting on so many things that have been happening.  It makes me think.  I think the thoughts I don't want to think.  I think the thoughts that scare me most.  I hate reality.  I hate feeling helpless.  Even more, I hate being helpless.

My heart aches because of these thoughts.  My heart bleeds for others who are suffering.

Why is the world so addicted to others' pain?

Why is the world so fascinated with death and the end of the world?

So much of our lives are really NOT our lives.  So much of our lives are outside of our control.  When you really think about it, there is so little we can control.  It's out of our hands.

I hate not being in control.  I'm a fighter.  My family is a family of fighters.  We will not give up.  We will not give in.

I am so discouraged and my heart is aching for those I know, even though I don't actually know them.  I see how they suffer.  I can feel their pain.  I can't imagine all they are going through, but I feel for them.  I cry for them.

I feel for the parents whose children have lost their battles.  I feel for the parents sitting beside their children as they battle for their lives.  I feel for the parents who are battle their own health wars, but still must put up the brave front to put their children's needs first.  Some of these parents will be reading this...  You know who you are.  You know what I'm talking about.

There are times when we need a timeout.  There are times when these demands take their toll on the parents.  It takes a toll on the kids too when Mommy and Daddy get stressed out.... We can't be the best parents we can be if we don't take care of ourselves too.....  Sometimes we lose track of the whole picture, the bigger picture.... but what is the bigger picture?

The panic attacks have been coming back again.  In full force.  It's hard to keep them down.  Maybe it's this time of year....  Maybe it's because I know of the stress that comes with this weather, and the stress that comes with the holidays, and the stress that comes with winter illnesses...  Maybe it's just all in my head and I'm finally losing my mind....

Some days I am just in awe while watching my kids.  To think, I gave them life.  I snuggle with them and hold them close.  I watch them sleep.  I watch my husband sleep.  I love them all so much, I don't know if they know how much.  When my Saxy is sleeping on my lap, I just snuggle him so close.  When Raine falls asleep against my side, I want to wrap my arms so tightly around her so tight and never let go.  They both are growing so fast.... too fast....

I don't know if my husband knows how grateful I am for him or how much I love him.  I try to tell him, but it's so hard to find the right words.  The past (almost) 7 years, he has been one of the best things in my life!!  There are many things, particularly in the past 3 years, that I don't think I would have made it through without him, without his support.  I know it's hard for him at times too, and he tries so hard not to show it.  And I know there will be many more difficult times in our future.  But with him, I can take on anything.

At least, I hope I can.

I'll admit it.  I am scared.

I read some of the case studies for the new medications.  I read about treatment plans for CFers with different gene mutations.  I read about g-tubes, picc lines, nebulizers, hospital stays, surgeries, lung transplants, colds that turn to pneumonia in the blink of an eye.  We have gone through some of these.  We know how fast things can start to go downhill.  We know how fast it can all snowball.  We know how fortunate we are to have Dr Ulrich's cell phone number for serious/emergency situations. But this doesn't decrease my fears.  Every cough, every cold, fills my heart with dread.

Too many children are losing their battle with CF.  The average lifespan is too damn low.  I'm not ready to lose my son.  I know that no one is ever ready, but I'll be damned if I'm not going to do everything in my power to fight this disease every step of the way.  If it comes down to me giving my son one of my own lungs, I wouldn't even hesitate.  It's sad that so many others won't give up their organs even in death.  Those lungs aren't going to do anyone any good buried and rotting in the ground!!

For now, I'm going to be thankful.  Or the best I can be.

I'm going to fight tooth and nail to keep my son alive and beat this disease. 

I'm going to appreciate every day that my children are in good health. 

I'm not going to take my children or my husband for granted.

I'm not going to give a damn what anyone else thinks - I'm going to do what's right for my kids and their health.  Don't be surprised if we don't stick around if someone is sick or has a cold, or reeks of cigarette smoke, or if the temperature is too hot.  I have to do what is right for my kids.  And I'm not going to bring them around others when they're sick.

Don't use guilt trips on me - I'm done with them and they're not going to work.

Don't play my children against me or try to turn them against me.  When the time comes, they will understand why we do what we do.

I'm trying my best.  That's the best I can do.

I've said it before.

I don't want your sympathy. 

I don't want your pity.

I want your understanding, support, and love.

And I don't think that's too much to ask for.

The Holidays are coming!!

"It's beginning to look a lot like Christmas" and feel like it too!! This week it finally starting looking more like Christmas.  We got 4+ inches of snow on Friday night into Saturday morning - a good excuse to stay home!!  Mommy did have to go to class on Saturday, but it was just across town, which was ok.  Daddy tried taking Saxy and Raine outside to play while he shoveled.  Sax loved the snow, but would not keep his mittens and hat on, so he had to go back into the house :-(  I'm really hoping we're going to be able to get him to keep them on soon so we can go sledding and build snowmen.

Sax has developed a love for trains - taking after his daddy!  Raine has a Thomas the Train wooden set, and the two of them play so nicely with them!!!  The first words out of his mouth in the morning "Train!! Train!!"  We have to actually put the trains into the basement to get him to do anything!! But it's nice that the kids can play together nicely with something!!

This past weekend was the Toy Train Show at the mall... both the kids loved it so much!! Raine looks forward to it every year, and now that Saxon is old enough, he gets pretty excited!!  We wandered through a couple of times and looked at all of the elaborate displays... and it was officially decided that Saxon needs some of his own trains to play with instead of just his sister's.  Raine picked out a few pieces, with the help of Daddy.  We buy a lot from one of the vendors there, and he always has a gift for the kids with our purchase.  In the past, Raine has gotten plain train cars that she can paint herself - one of which Daddy painted for her.  This year, Saxon got the gift - a Thomas engine that matches the one Raine has.  Now they each have their own, and couldn't be happier!!

Tuesday saw Saxon and I making a trip to Mayo all by ourselves.  Daddy went in to work late so that he could take Raine to school at 8.  Mommy and Saxy had to be at the ENT at 9 am for a checkup with Stephanie, Dr Cofer's nurse.  The appointment was to check to see if his ear infection had cleared up or not in his left ear, and to see the progress in his right ear and determine if the tube would need to be replaced. 

And the verdict is.......

NO SURGERY!!!!  The left ear was all clear of infection, and there was nothing draining in his right.  There was just the residual hole from where the tube had come out.  But there was no drainage visible either!! Such GOOD news!!!  Saxon's lymph nodes in his neck are still a little swollen, but Stephanie said that is nothing to worry about.  She said she wants to see Sax in 4 months or sooner, so we have decided to schedule his ENT checkups at the same time we do his CF checkups to save a trip.

So, in the spirit of the season, here's some of the things we're thankful for this year:

• Good health throughout our home
• Only 1 surgery for the year for Saxy
• Daddy being SO AMAZING that Mommy can stay home to take care of the kids
• Family and friends that have stood by us through all the difficult times in the past year
• A wonderful daughter who is so helpful to Mommy and Daddy
• Terrific doctors that actually care about our family
• A much-needed getaway for the family
• Daddy having plenty of work at the shop
• Mommy's business filling in the gaps
• A SUPER supportive CF community

Now to pray that we make the rest of year as uneventful as it has been so far.......