Cystic Fibrosis

For those who have wondered what CF does to the body, I saw this diagram this morning and thought I would share.  These are all possible consequences of CF.  I truly hope we don't even have to deal with half of them!  There are even a couple for sure that are not on here (under the lung category they are missing bacterial infections and colonizations).

Look who's Two!

I can't believe it's been two years since Finn joined our family.  It feels as if he's always been here.  He is such a joy, so full of energy and very happy.  The two most frequent comments I get about Finn are, "He's so cute!" and "Is he always this happy?"  Yes, and yes.  (Although to the second I have to add the caveat, "As long as he's getting his way."  But isn't that true for every 2 year-old?!)  We are so happy that he is ours and that we have been able to enjoy two healthy and happy years with him.  We look forward to many, many more.

The first treat Finn received for his birthday (on the 17th) was a trip to the party store to pick out whatever balloons he would like.  Recently, our Wal-Mart has been pushing their balloon sales and Finn was always so excited about the balloons that I knew he needed some for his birthday.  So, while Kai was at school we went shopping.  These were the balloons that we came home with, and he was excited!

At first he was unsure what he was to do with them, but he was quite content to stare at the them and point while saying, "Elmo!"  When Kai got home from school, that all changed.  Finn has since learned about balloon races, letting them go and grabbing them again, and pretty much just dragging them all over the house (well, as far as Mommy will let you).

That afternoon, while Finn napped, Kai and put up streamers and a birthday banner.  We also finished wrapping the presents and got ready to decorate the cake.  When Finn woke up, he was so surprised by all of the decorations that he just stopped in his tracks.  It was cute!  And then he saw the presents and made a beeline and before I knew it he had a hole punched in one of them.  So, I was forced to put the presents out of arm's reach until Reid got home.

Once Reid arrived, the party began.  First, Sesame Street blowy-things.

Finn actually got the hang of this.

And, silly string!

Next, we opened presents.  His first present was a Leaptop.  He loves having his own computer.  Unfortunately, the video seems to be too large to load, but just know it's been a big hit here.

Present #2--From Grandma

We eventually got him to push on Elmo and make him sing this way.

But he's still not so sure about Elmo when he's singing loudly.

From Great-Grandma Hickman

Another new book from Kai.  Do you see who's holding the balloons here?

Finn really enjoys The Wonder Pets

These blocks have also been a huge hit.  Sorry you can't see them, but I don't have pictures of everything
and the videos don't all want to upload.

Finally, after a quick dinner, we ended with cake and ice cream.  Finn has 3 characters that he just loves--Elmo, Mickey Mouse, and Winnie the Pooh.  (or Elmo, M-ou, and Poo)  So, we went with a Mickey Mouse cake with Winnie the Pooh candles.  All of his favorite friends were represented.  While he completely refused to eat cake and ice cream, he did have a good day.  Happy Birthday Finn!  We LOVE you!

The cake really didn't look this bad.  We forgot to take a picture before we started taking it apart.  In this
picture, I had taken Mickey's face off which really upset Finn.  So, I just placed it back on while I was
going to get a knife to cut it.  But Finn really does look this cute!

Is he really just 4?

During my parent-teacher conference, Ms. Elizabeth said something that I have thought to myself many times--"It's hard to remember he's just 4."  It really is hard to remember that with Kai.  He has been talking for so long and he really is quite bright.  His vocabulary is very much atypical for a Preschooler.

Yesterday at the lunch table Kai asked, "Mom, do you know what ominous means?"

I shot right back, "Do you?"

"Yes.  It means there's scariness all around you."

"Wow.  Did you learn that at Preschool today?"

"No, that was on Martha Speaks."

Well, I'm sure it was on Martha Speaks, but I'm not so sure that they meant for a 4 year-old to pick up on that.  Next we called his dad who was equally impressed.  Reid said, "I think it's ominous that my 4 year-old knows the word ominous."  Yes, indeed it is.
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When I picked Kai up from Preschool today his teacher was commenting to me about how much he has going on in his head.  During story time today they were reading a book about a bicycle that got "too tired."  Kai apparently pointed out quite quickly that was a good joke, "Two tired!  Get it.  Hahahaha."

When I asked him later about his joke he told it to me again.  When I asked if Ms. Elizabeth liked his joke he responded with, "She didn't get it."  Well, I wouldn't have either if she hadn't of warned me.  I guess that makes him smarter than both of us!

Super Heroes

Kai has really been into super heroes lately.  Not that he knows any of the common ones, he's just seen the idea presented on his regular TV shows.  For example, there are the Super Readers, Super Bungo, and Action Chugger.  When we were browsing the costume isle at Wal-Mart several weeks back he saw a costume that he called Super Baby.  In reality, it was a Superman costume for an infant (which is what his size still is categorized under!  Sad!).  He decided right away that was his Halloween costume.  When I told him that it wasn't Super Baby but really Superman, he asked "Who's Superman?"  Exactly my point.  Should we really let him dress up as somebody that he has no idea who it is.  Well, if it's Superman it's ok I guess.  So, this year he will be a super hero because he really wants to "save the day."

On Sunday the 16th Reid was talking with Kai in the pew before Sacrament started and he asked Kai who his favorite super hero was.  With a look of complete disbelief on his face, and shock in his voice, he said, "Me!"  It had Reid chuckling to himself on their side of the pew.

Now if only we could find some red boots!

Fall Leaves

This is my favorite of both boys.

These pictures were an attempt to recreate this shot.  I failed miserably!  My subject matter was not as cooperating this time.  :)

It's that time of year again where we turn off our sprinkler system and start raking the leaves. We seriously have way too many aspen trees! Between the rakes and the leaf blower we can always get a good pile of leaves, and the boys love to play in them. These pictures are from last weekend (October 15th). I have a feeling we might have to rake again. (Like I said, we have way too many aspen trees!)

Attachment Issues

It seems that every kid has something to which they are overly attached.  When Kai was younger, it was his hair.  We had some serious tantrums when it came to getting his hair cut.  One time he even grabbed the back of his neck and held on so hard that he left scratch marks.  I didn't notice them until we got home and I saw the little bits of blood.  Uggggh!  Well, for Finn, hair is not an issue, but rather it's his clothing that causes our problems.  He just doesn't like to get changed.  So, twice a day we have the potential for a melt down.  One particular night last week, I took off his shirt and tried to get him in his jammies.  He would not have it.  For some reason, I got distracted and ended up leaving the room.  He was still in his bedroom throwing a fit and digging through the hamper.  A couple of minutes later he comes out of his room like this.  Yes, this is the shirt he was wearing and yes he tried to put it back on.  Ahhhhh.....what am I going to do with this kid?  It's too hard not to laugh.

The shirt kept falling down and then he would just hike it back up.

Proud of himself

Wishing Star Farm

Last Friday (yes, 8 days ago!) we went with our friends to check out Wishing Star Farm.  The boys had a lot of fun and it really was a neat place.  We spent a couple of hours there before picking out our pumpkins and heading home.  I think my only complaint about the place is that it's so busy and yet there's only one slide, 5 ponies, etc.  We ended up spending most of our time waiting in lines.  And of course, then Finn LOVED the slide and wanted to go again but didn't understand that we would have to wait in the line all over again.  So, yes, it was a fun morning, but maybe next time we'll try to go at a less crowded time (whenever that may be).

Climbing the haystack

Kai loved racing the ducks down the rain gutters.  I love the colors in this picture.

Unfortunately, your duck doesn't race too quickly when it looks like this.

A tunnel or a swing?

This is about as far as Finn would venture in.  He didn't like it when it started to swing.

Finn spotted this train the minute we arrived and kept running back to it.  We wanted to wait for our friends to ride it.
Add that to my list of dislikes--only one train ride per kid.  Poor Finn.  Oh, and see how he doesn't actually
want to sit in the seat that faces backwards.  He just sat on the bottom of the barrel instead.  Thankfully Maddie was a good sport.

So, Finn didn't want to ride backwards and Ethan and Kai both wanted to ride backwards.
Good thing Kai's so tiny that they could share a seat!

Our train riders

On the hayride.  Finn just loves the word "ride"!

Can you see him dragging his feet?  Well, he was.....all morning!

This massive pig was just roaming the farm.  This picture does not do it justice at all.  This pig was huge!

The pony ride.  Finn was pretty skittish about the whole thing and made me carry him the entire time.
I thought my arm was going to break!  (They made me walk with Kai and pat the pony's bum.  I don't know why.)

I caught Kai talking to the sheep.  I'm not sure what he was saying, but I love this picture!

Time to pick a pumpkin.

Finn thought it was more fun to roll the pumpkins than pick them.

Today's Funny Story

So, for the last 3 months our gas bill has indicated that there has been no change in our meter reading.  In other words, they claim that we aren't using any gas.  As a result, our bill has been a $10 customer fee--that's it!  The first month this happened the bill covered the month of July and so I thought that maybe it could be right.  The second time it happened, though, I called.  The gas company promptly refused to talk to me as the account is in Reid's name.  I was a bit miffed.  Last week we just got our third bill reflecting no gas usage.  So, the minute that Reid walked through the door I handed him the phone and had him call and add me to the account and ask about the bill.  The response we heard was "Well, it's just that time of year where you don't use as much gas."  Ok, I get that we don't use as much, but we're still using some.  Reid handed me the phone so I could "argue" with the lady.  My points--

1.  I turned my furnace on full blast as off September 1st.  This most recent bill covers the entire month of September.  My furnace ran nearly every night that month.
2.  I have a gas dryer which I use to dry at least 6-8 loads of laundry every week.
3.  I have a gas range and while I can't claim to cook every day, my family does eat!
4.  We have a gas water heater and I promise we take a hot shower every day!

So, how in the world can you tell me that over the last 90 days we've used NO gas?!  The lady on the phone said "Well, if it'll make you feel better I'll send a tech out to check your meter."  Um....YES!  Seriously, she was stuck on the time of year thing even though it's October and snowy out here.

Last Friday the tech came out.  I didn't see him or hear anything.  Today I decided to call and ask about their findings.  I explained the situation again (for the third time to a third person at the company) and asked what the tech found.  She looked at my account and said that he came out and read my meter and there was no change.  Those were his findings.  You're kidding right?!  At that point I told the lady that if they want to continue to give us free gas then I will stop complaining, but I will not be paying the $1,000 bill that is going to be coming when they figure this out a year from now.  She told me, "Oh, we'll work with you if that happens."  But I called her now so that won't happen!  No one is taking me seriously.  So, as it stands our meter still reads the same number it did in July and no one seems to care.  She did say that she'll call our local office and talk to them.  I have a feeling I'm going to have to call again next week. 

Despite the fact that I sound exasperated (which I am a little bit), I find the whole thing rather funny.  I have to.  We've had too many mishaps with billing over the last 2 years that if I don't laugh, I cry.  Please, someone else tell me that they have billing mishaps.  Or is it just us?  Maybe I just look at my bills too closely.  I guess I should find something else to do......like be a mother!  :)

Parent-Teacher Conference

Last week was my first ever parent-teacher conference.  I wasn't sure if I should even go or not, as I talk to the teacher frequently and knew that if there was anything to report I would have already heard about it.  But I am glad that I went.  It was nice to be able to see what she was teaching Kai and the approach that she was using with him one-on-one.  It made me proud to hear that he is already working on a kindergarten level and that he is one of the more advanced kids in the class.  She told me that Kai makes her feel like a rock-star!  She says he is attentive and helpful and just a good kid.  So fun!  Finally, she told me that Ms. Cathy (a woman who oversees the "child find" program and makes sure that the kids have the appropriate specialists) calls Kai the "star student".  Wow!  I love Kai and I am so proud of him.  School has been so great for him.  I'm thrilled with his progress and the program that we choose for him.

This is Kai's official class picture (the one they use for projects).  I laughed
at his closed eyes and his teacher said, "But that's so Kai."  And she's right.
It is SO Kai!

Annual Clinic Visit

Finn has quarterly visits with his specialist from Children's Hospital, but every year for his birthday he has what they call an annual appointment.  This is a more thorough appointment than the quarterly ones in that it includes lab work, x-rays, and eventually even more labs and tests.  Because of these additional tests this appointment always takes place at the hospital in Denver instead of the clinic location in Colorado Springs.  So, bright and early Monday morning Finn and I headed up to Denver for our day at the hospital.

Now, I intended to take my camera along on our trip, however in the rush to get out of the house I didn't realize that I forgot it until we were away from the house.  So, we'll have to do a photo documentary next time (which hopefully won't be for another year!).  I, therefore, apologize for the lack of pictures in this post.

The appointment was fairly standard at first.  We were checked-in with weight and height.  Finn measured 33 inches tall and weighed 10.9 kg or 24 pounds.  (At least I saw 10.9 on the scale, but the nurse wrote 10.7 on our paperwork.  That translates into only 23 pounds 9 ounces.  I guess we'll have to wait until he gets weighed again at the pediatrician next week.)  Then we were placed in our room where we were first visited by the respiratory therapist (RT).  Finn was having a great time running around and playing with the bead toy in the room.  He did not want to stop to get his oxygen level measured, or to let the RT listen to his lungs.  We eventually got his oxygen saturation of 97 and then she gave up on listening to his lungs.  He did not want to be bothered.  

Next we were visited by the nurse. With the RT and the nurse, I told them about this cold that Finn just couldn't seem to shake.  He started into a cold 4 weeks ago, but there still seemed to be a lingering cough and the very occasional clear runny nose.  Both of them took note of this, but he was running around and being Finn.  He looked and acted fine.  Obviously, he couldn't be that sick.  After talking with the nurse, we got Finn his "stickers" with numbing creme on it for the nooks of his little elbows.  This had to be the funniest part of our appointment.  He did not like having these on and felt like he couldn't bend his elbows.  He kept walking around with his arms extended and whining with a pouty face.  He would ask me to take them off.  I eventually got him to sit on my lap and read books.  

Our third visitor was our social worker.  We had a good long talk which really bothered Finn.  He started getting angry with the whole situation.  He was trying to play on his own while I talked, but he "couldn't" bend his elbows, his creme was leaking out of his stickers and so he thought he was dirty, and he was just done.  He seriously started giving her the stink eye.  We were laughing so hard.  He was simply way too cute.  (And being the sucker that I am, I took his stickers off.)

Finally, the doctor came in.  After once again explaining this lingering cold, we put Finn on my lap so she could take a look at him.  By this point he was so tired that he just sat there and let her get a good long listen. She was listening for so long that I started to worry.  And then she asked me if I noticed how hard he was breathing.  Well, yes, but he was just running around right?  And then she showed me that he had some minor chest retractions (breathing in so hard you can see his rib cage).  Um.....uh oh.  Finally, she said that it sounded as if his right lung did not have as much air as his left.  This left her concerned that he might have one of two different possible problems--either pneumonia (which really wasn't likely as he had no other symptoms) or a small portion of his lung had collapsed.  Apparently, kids with CF are more susceptible to this.  Yikes!  So, at that point she said if either of these were the case, Finn would need to stay at the hospital.    Double yikes!  Instead of continuing with our appointment as scheduled, so sent us straight down to radiology to get a look at his lungs.

Finn was so excited to get out of that doctor's room.  He ran through the halls of the hospital, pushed the elevator buttons and was as happy as could be.  He even was a gem while waiting our turn at radiology.  He found some other boys (who were much older by the way) to play with while they watched the perpetual motion machine and they had a blast.  He was not at all thrilled with being held down for his x-rays when his turn came, but it wasn't bad and then we were on our way again.

While we were at radiology, the doctor called down and asked us to stop at the lab before we came back up.  So, we made our way over to the outpatient lab and waited.  And waited.  Turns out they forgot about us.  Once we had that taken care of it wasn't bad.  After all of that drama with his "stickers" earlier, it turned out that the numbing cream was still working and so the blood draw wasn't bad at all.  Finally, we were back to our pulmonology appointment.

When we returned to our room the nurse met us and said that they would try to get us through as quickly as possible so we could go home.  Yes, we were getting to go home.  The x-rays didn't turn up either of the problems that were the concern.  They did, however, turn up an area of inflammation in his middle airways.  The doctor also pulled up his x-rays from last year and the same area was clearly visible, just slightly smaller.  The "diagnosis" she gave was airway disease--which is pretty much a non-diagnosis.  We're not sure what has caused this inflammation or what it means.  (If you google "airway disease", you'll find reactive airway disease which is apparently thrown around the same circles as asthma.  Could this be the early stages of an asthma diagnosis??)  Frankly, they didn't even seem sure what to do about it.  So, they extended his antibiotic prescription for 2 more weeks and added a steroid for 5 days.  They said that if his cough didn't clear up in two weeks, we may have to head back.

We finished up our appointment by meeting with the nutritionist, getting our paperwork (including a letter for airport security explaining all of Finn's medications and equipment), and stopping to get me a flu shot on the way out.  Finn was so happy to be free that he practically ran through the halls, only to crash within minutes of hitting his car seat.  Poor thing had missed his nap on Sunday and here it was 2pm on Monday.  He needed his sleep after all he had been through.

Now that it's Friday, we're nearly done with the steroids, which have gratefully cleared up the cough.  When watching him tonight, though, he still seems to be breathing hard and maybe still has chest retractions.  But I don't know for sure.....or at least I don't trust myself.  Thankfully, we'll be seeing his pediatrician next Wednesday and then we won't need to see the pulmonologist for another 3 months.  That's always my goal....to not have to go back or call them for 3 months.  We take it just 3 months at a time.

Just for fun, here's a look at his home care paperwork.  We get these after every appointment.  Just look at all of his medications.  Yes, it's a little crazy!

A Song From Kai

CF Thoughts

Along my sidebar are several links to CF websites.  While I don't read them frequently, I do find myself browsing the sites every once in a while.  And when I do I often wonder why I don't do it more often and when I have more time.  There are some gems of advice in those websites and some of it is advice that I could actually use right now.

On a daily basis, however, I do follow a certain CFers blog.  Recently he had a discussion about how parents have positively or negatively affected a CFers life and treatments.  It was definitely interesting and something that I really need to think about.  What has stuck with me over the last couple of days, though, are some comments made by readers about traditions with their treatments and clinic visits.  One person talked of getting new jammies for every hospital stay.  Another talked of going to breakfast on clinc day.  I feel as if Finn is starting to get old enough where it's going to be time to really put some thought into how we're going to talk about it and approach it with him.  He's doing so well with all of his treatments that I want it to continue to be a positive thing for him.  So, I'm trying to figure out what I can do to make some of this special and encouraging for him as a 2 year-old.  Does anyone have any ideas?  I was debating on maybe getting him a new toy for clinic visits.  It's hard to sit through a 3 hour doctor's appointment, so a new toy sounds like it'd be good for both of us.  For daily treatments he normally gets to choose what show he watches while we do them (lately he's been choosing Yo Gabba Gabba, which I can't stand, but he loves.  He watches it with a permanent smile on his face.)  Does this sound like enough for a 2 year old or do you all have some other ideas?  I'm totally open!

The First of the Season

Today we had our first snow of the season.  Overall we got somewhere between 3 and 4 inches.  Thankfully, the sun came out early in the afternoon and so we headed out as a family to play.  We sure did have a lot of fun.  Kai was excited to build a snowman and throw snow balls.  We did both and had a great time.  Finn, however, was quite hesitant of the snow at first.  He certainly didn't want to walk in it or be put in the middle of the grass surrounded by it.  After some time of being outside, though, a large snow war broke out.  Reid was pelting me and I was retaliating.  In the middle of the war I looked down to see Finn walking slowly toward me with a small handful of snow.  He then threw it right at my legs and smiled.  It seems we found an activity that even he enjoyed!  So, I ran in to get him some mittens and he had a great time throwing snow.  It was a fun family afternoon.

Reid totally got Kai!

Reid's working on a snowman while Kai is enjoying the fresh snow.

Finn wouldn't walk in the snow.

It's never too cold to ride a plasma car apparently!

Or you can ride a tricycle backwards.....

The snowman!

Too cute for words

Good thing he doesn't have great aim!

I know it looks like I'm stepping away from his throw, but I was actually stepping into it.  He threw to the side of me and so I moved to the side to try to get in the snow.