Parent-Teacher Conferences

We had parent-teacher conferences last week for both boys.  It actually worked out that the kids were out of school on the 16th of October for conferences and then were off entirely on the 17th (Finn's birthday!)  I had a conference with Kai's teacher, Mrs. Pierce, on the evening of the 15th.  She is an older teacher (has been teaching for 35 years) and is more laid back and gentle than Kai's teacher last year.  She absolutely adores Kai and is blown away by his ability.  She tells me that kids his age may not appreciate him, but that all of the adults do because they know that he is going to be something important one day. What high praise!  I told her that Kai had mentioned a certain classmate had been teasing him a bit and she was a bit bothered.  She told me she didn't want him to get teased for his intelligence.  She sounded like she would go down fighting for Kai and is one of his biggest allies and guardians.  I am so grateful for her and for her influence in Kai's (and our) lives.  Another thing that I have noticed and been super grateful for this year is that there have been no complaints of him not completing his work.  He is actually getting it done!  And it seems that there is also less of it....at least there are less worksheets coming home.  Which is so, so nice.  I had heard other moms complaining about Kai's Kindergarten and First grade teachers being worksheet addicts, but I didn't understand.....until now.  It's nice not to have a bazillion worksheets coming home crumpled up at the bottom of a book bag.  Kai also has free reading time in class which he loves.  His teacher has a large library of books for him to choose from and I know he has been working his way through her Magic Treehouse Books, again.  Speaking of reading, at the conference Mrs. Pierce gave me Kai's test results from the assessment day held on the third day of class.  Kai tested at a 5th grade 8th month reading level.  It was just the 3rd day of 2nd grade!  Yep, that's my boy.  I'm super proud of him.  His results say that he would best be challenged by material on a 5th grade level.  Yowzers!  He has currently been reading a Space Encyclopedia by National Geographic at home and telling me all about dark matter.  Sigh....I still don't understand and my 7 year old does!   

Finn's parent-teacher conference was held really, really early in the morning on Thursday the 16th.  Of course Bree had a horrible night the night before and I was barely functioning and dragging myself out of bed, but I made it.  I will admit to being nervous about this conference.  With Kai, I pretty much know what I'm going to get.  This is his 4th year at school.  But for Finn this is uncharted territory.  And add in all of the times that his teacher has called me (about his medical stuff) and told me why she thinks some things are happening, well, let's just say, I didn't know what to expect.  The school nurse actually called me the afternoon before conferences to talk about Finn's recurring vomiting episodes at school.  I told her what was going on and it made sense to her, but when explained to Ms. Michelle she just didn't seem satisfied.  I don't know what else to say to her.  It seems like she just wants to tell me how it should be without listening to me as a mom.  And when she's listening I just get this feeling that she doesn't even really care.  I've become a bit exhausted trying to explain his stuff that this week I just gave up and went to school and picked him up early.  I'm going round and round with his teacher and just not really seeming to get through and I'm exhausted of it.  So, that being said, of course for his conference we talked about more than just his medical.  She showed me that he knew all of his shapes and colors and could accurately count up to 14 (he ALWAYS skips 15....but I knew that).  I was impressed that he had shown her that he knew most of his letters.  He is doing well with recognizing the capitals anyway, while the lower case letters are giving him a bit of trouble still.  He loves the dramatic play areas and tends to gravitate there during centers and so she said they are going to start redirecting the kids towards different centers before they go off to play.  She says he plays well with lots of different class mates and that she is working with him on managing his frustration and expressing his feelings.  I'm glad she is doing that with him as that is something we have been working on at home and so I'm glad for the reinforcement.   Overall, she has a no-nonsense approach that I feel has been a good introduction for Finn to school.  He is learning the rules and the importance of following them.  I feel that his behavior is improving ever so slightly and I'm glad to see the growth in him.  She isn't the friendliest of teachers with the parents, but at least Finn is learning and loves school, right??!

Towards the beginning of the year the aide in his classroom (who also happens to be a friend of ours from the ward) sent me these pictures of Finn playing at school.  Finn told me that in these pictures they are playing house and he is the dad and the little one behind him is the mom.  Ummmm.......no words!  I love it!

Finn's Health Update

There are several CF families that keep blogs and I follow a handful of them.  There is one that just seems to rub me the wrong way, though, and I finally figured out why yesterday.  She ALWAYS talks about CF.  Every single post is about how negatively CF impacts their life.  Now, it's not an outright negative blog, in fact she seems to be a pretty positive person, but there is a subtleness to it.  For example, her son with CF turned 5 last month and they had a bug-themed party.  But insted of just blogging about his birthday and party she made sure to mention that dirt carries bacteria harmful to CFers and so because of his CF they only used plastic bugs and decorations.  Ummm.....you mean to tell me that if he didn't have CF you would have decorated your house with real bugs and dirt?  And those dirt and worms cups wouldn't have just been for dessert?  I'm not buying it.  Anyway, I share this because I hope that no one feels that way about our blog here.  CF impacts our life every single day, but we don't dwell on it.  We try our hardest to live life within our limits and without making them feel like limitations or disadvantages.  I hope that's how Finn feels, anyway, and I hope that's what you see.

That being said, it's been a while since I've updated and there have been some changes.  So, it's time for a health update.

On September 8th, Finn had his "annual" CF visit.  This is pretty much the same as all of his other quarterly CF clinic visits except that with the annual they add bloodwork and like to talk to you a little bit more.  I knew going into the visit that Finn's weight was going to be a topic of concern.  Our running deal with his doctor is that as long as his BMI stays above the 10th percentile, she won't talk to us about g-tubes (a surgical inserted feeding tube in the stomach).  So, let me show you the charts.

This is Finn's height for his age.  You will see that he is doing really well and has stayed on the 25% curve.  As long as he continues to follow this trend, this will put him at 5 feet 8 inches as adult.  That is just awesome!  This is what the doctor and dietician are looking for when they look at the charts, a nice steady curve.  

This is Finn's weight for age chart.  You will not see a pretty curve.  What you see are a series of plateaus.  He gains and then there is a plateau.  Then a jump and, most recently, another plateau.  Becauase his height is following a curve, however, these plateaus will correlate with decreased BMI.  So, in other words, he gains weight and gets "plump-ish" and then he stretches out and gets taller and thinner.  Wash, rinse, repeat.  That's been his general growth pattern.  So, next I'll show you the effect on BMI.  

Here is Finn's not-so-pretty BMI chart.  Notice how there are clusters of plateaus and then a downward trend.  Then that huge jump (the highest X), was when we talked about a g-tube before (the lowest X was the measurement right before the highest X) and decided to add his appetite stimulant.  The stimulant worked well for a while, but notice the downwadr trend since that highest X?  We are now back down to where we were the lowest before.  

The best way I've seen the importance of weight and BMI described was on the blog that I mentioned earlier.  She says, "Nutritional status has a significant effect on pulmonary disease progression and survival in patients with cystic fibrosis.   In fact, young underweight patients have worst pulmonary function outcomes, likely because "accrual of lean body mass is the factor that is involved in the preservation of lung function."  The Cystic Fibrosis Foundation recommends that CF patients stay in the 50th percentile."  Finn's BMI at this clinic visit was 7%.

So, our clinic visit was once again filled with the discussion of a g-tube.  I still had many reservations at that visit.  My biggest one was that despite all of this, Finn is still my biggest child.  How can I wrap my head around making my biggest child "bigger"?  There was a lot of discussion with the two different doctors and the social worker about this very thing.  Our normal CF doctor says that as soon as we are ready for the tube to call her and she'll schedule it for us.  The other "new" CF doctor gave us a weight goal of 2 pounds and 3 months to see if we could meet it.  I was very skeptical that we would make the goal.

I have talked to Finn and Kai about what a g-tube would mean and how they would feel about it.  I have been surprised by Finn's reaction.  Just two weeks ago he brought it up out of the blue and told me that he would like a "tube".  He says he wants "to grow up" and that it's hard for him to eat enough food.  Kai has concerns about the machine going at night and possibly waking him up.  I admit that I have the same concern.  But as I have processed and thought about this so much over the last 6 weeks or so I have come to a feeling of peace about it.  I don't want to put my child through the surgery (and there's still another piece of this puzzle I haven't mentioned that I am still wanting to fight) and I don't want to make him feel anymore different than he already does, but I want to give him the best chance I can.  I want to make sure he is as healthy as possible so that he has the resources to fight CF.  When the time for a g-tube comes, I have come to peace with that.  I don't know when it will be, but I'm sure it will come.  And that is ok.

Since the appointment, we have been pushing high calories on Finn.  And it seems Finn's GI issues are getting more aggravated.  I'm wondering if the high fat and calories are just too much for his body to handle.  He has thrown up at school twice now and also at home several times.  He has thrown up so hard at home the last two times that there has been a teeny amount of blood in what comes out.  He is getting more and more constipated, even on antibiotics.

Speaking of antibiotics, at the clinic visit he had a cold he was "recovering" from.  I suspected another sinus infection.  We put him on antibiotics at the visit.  He cleared up pretty quickly but within a week he relapsed again.  His cultures came back showing that he was growing Staph again.  I hoped things would clear up with sinus rinses and we finally got him doing that consistently every night now, but it didn't work.  He went back on antibiotics last week and had another visit with the ENT yesterday.  Interesting enough, his weight was up almost the entire 2 pounds that they wanted him to gain!  The ENT did see, though, secretions coming from his right maxillary sinus cavity and so he took some cultures from that area to see what we are dealing with.  I have money on Staph. His surgery in May showed that his right side was filled with polyps and Staph.  So, interesting that the right side is the same one giving him trouble agaoin.  The ENT told us to continue the antibiotics and add another sinus rinse in the morning (so now he is doing them morning and night) and to come back in two weeks.

I am so proud of Finn and how he is handling all of this.  If you've never done a sinus rinse, it's awful!  You shoot water up one side of your nose and tilt your head forward to make it come out the other side.  It's not fun.  And yet, he is doing them twice a day with hardly any compliant.  He hates the taste of the antibiotic and yet, he doesn't fight me on it.  In fact, he cried when it wasn't ready at the pharmacy because he said he knew he needed it.  He is a champion when it comes to doing what he needs to do to feel better and take care of himself and I'm proud of him for that.  He says that he wants to share about CF with his friends.  We will see how and when we will do that.  I've noticed that as he has gotten older that there has been the occasional comment from his peers.  I know at some point he will need to decide to educate them or not and it seems like right now he wants to do that.  I will do my best to let him lead in that aspect.  I love him and I'm proud of him (yep, I said it agin!)

Anyway, if you've made it this far you deserve a pat on the back.  I know this isn't the most coherent of updates, but it is what it is for now.  To those who support us on this journey, thank you.

My First 5K

Back in May I began the couch to 5K program.  I had heard that by the end of the program you would actually like running.  I was very, very skeptical.  But I did it because it's something I've been curious about and wanting to do.  I plugged along through the program taking my time as I had no real set goal other than to finish at some point.  So, if I found that a week was particularly difficult for me, I would repeat it the next week until I felt ready to move on.  I ended up finishing the program and running 5k towards the middle of July.  And then I didn't know what to do.  I didn't have much motivation to keep it up and with the end of the summer getting busy, it was really easy to make an excuse not to run. So, I didn't.  It had been about a month since I had ran when one of my friends from the ward mentioned that there was a "Pumpkin Run" on a farm on the south end of town that her family enjoyed doing.  The run was five and half weeks out.  There was also a short run for the kids which I thought would be great for the boys.  I stewed over it for a couple of days before talking to Reid and finally committing to the run. So, I began again at about the middle of the program hoping to be ready for the Pumpkin Run.  Along the way, I definitely had some regrets.  Especially when kids would get sick and not sleep, or cut teeth and not sleep, making it difficult for me to get in my training.  And then of course, I would try to do my training during Bree's nap time, which is also the only time I can mow the lawn.  And then after mowing the lawn, I'm normally stuffed up from allergies for a week afterwards.  So, anyway, the point is that training was tough.  But I had already paid the entry fee so I was committed.

The first time I ran a 5K was July 17th.  The first 5 minutes of this was walking for warm up, so this was a 36 minute 5K.

My last 5K on the treadmill before the run.  This was the Monday before the race.  I wanted to give myself time to recover from this run before the race.  The first 2:30 of this was walking, so this was a 32:36 5K.

  The Pumpkin Run was held on Saturday October 4th at Venetucci Farm on the south side of Colorado Springs.  We arrived with a good amount of time to find most of the people from our ward who signed up and get me in place for the start of the run.  At that point, Reid took the kids over to McDonald's to play (with some of the other kids from the ward) while I ran.  My race began at 9:45am and I anticipated that I would take 35 to 40 minutes.  My goal was to finish around 35 minutes.  During my training, I had done a few runs at the elementary school track on Saturdays when I could, but that was a totally flat and smooth run.  This run was around and through a farm.  They listed it as "relatively flat".  I guess relative is, well, relative in Colorado.  Clearly I have a different definition.  My longest outside run up to this point had been two miles, but I had done 5K several times on the treadmill and was able to maintain a pace that should have had me finish in 32 minutes.  But that was without the hills.

This 5K course started with a decent downhill and then was relatively flat for most of the middle section.  But if you go down, you must always go back up and there were two fairly brutal hills in the third mile of the race.  I did well at the beginning and was able to jog/run the whole way up until mile 2.  At that point the muscles in my shoulders and neck were burning and I couldn't figure out why.  In training I had always put my iPhone down on the treadmill but for the run I was carrying it.  I don't know if that was causing me to change my arm swing or tense up my shoulders or if it was something else entirely, but I knew I couldn't keep going.  Luckily there was a water station not too far after the mile 2 marker and so I stopped to walk through the station and give myself a bit of a rest.  After turning the corner after the water station, I came face to face with one of those brutal hills.  So, I kept walking.  In total, I probably walked for 1-2 minutes at most.  Once I hit the top of the hill I renewed my pace.  The last hill was just minutes away from the finish line and it was at that point that I passed someone from the ward, and I have to admit that I was quite proud of that.  This is a lady who is somewhat "athletic" (she's done a triathlon in the past and plays basketball with the guys in the ward at times) and is significantly taller than me.  She also started the race more in the middle to front of the pack, while I went straight to the back (I stood at the starting line with a lady who had a 4 week old baby in a front carrier!).  Anyway, passing her was a highlight of the race for me.  (Don't worry, I'm not telling her and she doesn't read this blog!)

I finished the race in 33 minutes and 24 seconds, which is pretty gosh darn awesome in my opinion.  I was 99th overall in the race (out of several hundred people) and 11th in my age group.  It was hard....one of the hardest things I have done in a long time.  I was disappointed that I had to walk a bit, but I was also really happy with my time.   

The race results.  See number 99?  That's me.  And yes that says that a 7 year old and a 9 year old beat me.  That isn't even the worst of it.  See the 63 year-old that beat me by two minutes?  There was also a 70 year-old man about a minute behind me.  Nope, I'm definitely not fast!

After my run, there was watermelon and bagels available for the runners as well as a few information booths advertising other things on the farm.  We hung around and visited with friends until the kids' race started at 11am.  Both boys ran the 400M race and did great!  At the end they both received a blue ribbon which entitled them to pick a pumpkin out of the field.  After getting those pumpkins we headed back to the car, very much worn out for the day.  

The boys lining up for their run.  Reid ran with Finn to help him out, because Kai runs faster than him and he gets upset if he is left without anyone with him.

Bree drinking some Gatorade while waiting with me for the boys.

Kai came around the corner before I was ready to grab a picture.  So, I only have one of Reid and Finn running together.  I was proud of Finn for being able to run the whole way.  He had a pretty bad sinus infection at this point and wasn't feeling 100%, but he did it.  

It was a good experience.  I'm glad I did it.  I can't believe I'm saying this, but I want to do it again.  Somebody pinch me, please!

More of Bree

She has begun to insist on sitting on the couch just like her brothers to watch a TV show

She has this absolutely adorable "princess" dress that her Aunt Kara got her and I had her all dolled up and ready for church one day.  There is even a matching bow in her hair, but she wouldn't pose for me at all.  She was being a big grump!

One afternoon I was sitting on the floor with my phone and she crawled into my lap and started to cuddle with me.  I turned on the camera to take a selfie and she said "Cheeese!" too!

One day when we said "Amen" to the prayer I looked up to catch Bree "unfolding" her arms.  So the next time we said I prayer I peeked and saw that she had developed her own arm folding technique.  Any time some says the word "prayer" she puts her hands like this and is ready to go.

17 months old!!

At 17 months old she weighs about 17.5 pounds.  She has a good 15 to 20 words (although that has changed in the last week since she turned 17 months old) and she has finally found some foods that she consistently likes.  She likes chicken nuggets, pancakes, cheese, scrambled eggs, ice cream (sometimes...and sometimes it's too cold for her), Boost Breeze (we call it "juice" here), pizza, mandarin oranges (from a can), most fruits (she'll at least put them in her mouth and chew for a bit.....she still struggles to swallow some things), peanut butter and jelly (sometimes), many cereals, teddy grahams, and I'm sure there is more.  I finally don't feel helpless to feed her anymore, which is fantastic.  It was so hard in the past to know that she was hungry but yet have no idea what to get her to eat.  Now I can generally find something that I know she will eat.  Yippee!  She takes one two to three hour nap a day and sleeps through the night most nights (as long as she isn't cutting a molar...those have been awful!)  She has 9 teeth (two are molars and the other 7 are the front ones....4 on top, three on bottom), and dare I say that I'm about ready to dub her eyes "hazel".  But don't quote me on that one just yet!

Lollipop Park

The kids had a day off of school on Friday September 19th, so we decided to cash in on some Groupons we had purchased for an indoor amusement park in Denver.  The park was called Lollipop Park and was just a small area located inside the Family Sports Center in Centennial.  The Sports Center had an indoor ice rink, indoor climbing wall, and some restaurants/snack bar.  I'm sure there were other things, but I really couldn't look around because the kids were begging me to do other things and I wasn't going to pay for it at the time.  Anyway, it was a big place.

When we pulled up, the parking lot was PACKED.  I could not understand why.  We got inside and got our wristbands for the park and learned the rules.  There are a total of 6 (yes, 6!) rides and two bounce houses and a very short plasma car track.  Only one ride was operated at a time and so whoever was there circled the park in a group getting on one ride and then the next.  When we were first there we were circling with maybe 6 or so other kids and were able to make it through the 6 rides in about 25 minutes or so.  Let's just say, I'm glad that we had Groupons as I would never pay the $14.95 they charge for a ride pass.

On the back half of the first circle I found out why the parking lot was so full.  Training camp for the Avalanche was being held in the building and was open to the public and the media.  Yep, it was pretty crazy!  Anyway, Kai seemed to be having some difficulties waiting his turn in line and being patient with the younger kids, so we went through the rides two times before deciding to head out for lunch.  Kai had a meltdown on me and I knew we needed a break.  The closest place we found that sounded good was Noodles and Co so we stopped there.  It was my first time there, and I think it will be my last time for a good while.  I ordered Mac and Cheese for the boys, spaghetti and meatballs for Bree, and Pad Thai for me.  The boys ended up with plain macaroni, no cheese.  Bree got plain spaghetti noodles, no sauce and no meatballs.  My order came out ok, but geez.  I had to send everything back and even then I wasn't convinced they got the boys right.  She honestly sprinkled a handful of grated cheese on to the macaroni and brought it back.  Yep, not going back.

On the Ferris Wheel

Our selfie on the Ferris Wheel

Spinning super fast on the tea cups

Bree and I spun much slower

The plasma car race track

The Avalanche training camp through the safety glass

Riding the train.  Finn's meltdown at the end of the day came because he did not get to be in the engine of the train.  And he refused to ride anywhere else

Bree on one of the train cars.  She liked the train but I wasn't allowed to ride so she had to be able to see me pretty much at all times.  So, I walked around and around as best as I could.

After lunch we headed back to Lollipop Park (since we had all day passes).  There were a lot more people this time around and it was taking nearly 45 minutes to rotate through all of the rides.  Bree was big enough to ride about half of the rides, as were several other little ones.  But the adults couldn't join in on some.  It was nearly impossible to get them all buckled in and sitting down at the same time.  Some would sit patiently and then patience would run out and they would stand up just the attendant got others to sit down.  It was a joke that sometimes required nearly 10 minutes just to get a ride going.  Towards the end of our second loop around, Finn melted down on me.  By this point it was nearly 3 or so in the afternoon so we decided to head out.  We had to stop for gas on the way home and made a quick stop at Sonic for milkshakes (after the day we had, I deserved one!).  The boys loved Lollipop Park.  I personally have no intention of ever going back.....but don't tell them that!

Funny Bree Videos

Palmer Lake Reservoir

So, while I didn't take any pictures of the rest of us for that first month after school did, thankfully, Reid did!

While our Kansas cousins were here we had talked about taking a hike to the Palmer Lake Reservoir.  Some friends had recommended it, but we had never tried it and after reading some reviews on the internet I started to get nervous that it wasn't as "easy" as our friends had led me to believe.  So, we decided that we would try it first to see if it was kid-friendly.

Posing on a boulder/rock along the way

Reid on the rock

Our view for the hike up

On Saturday August 30th, we set off on our hike.  It was a pretty day for the hike and we found it pretty easily.  Our friends had said that it was a bit of an uphill hike at first.  Hmmmm.....I figure these friends must be pretty frequent hikers because it was uphill ALL the way in my opinion.  And one stretch was fairly steep, especially for my boys.  Kai can't stand weeds and bugs and seriously made me laugh and lose my patience at times.  Finn is a good hiker but can tire out easily and needs to hydrate more often.  It was slow going up the hill  But we made it.....and it was worth it for the view!

Beautiful reservoir!

Now that we've done it, we know what to do to prepare to take a bunch of kids on the hike.  It's definitely a hike that is worth repeating.  In fact, after this hike we decided that we should do family hikes every Saturday until it got cold.  Unfortunately, that hasn't worked out, but that is definitely worth making a goal for our next bout of good weather.

Since School Started

Things have been busy, and yet not busy at the same time, since school started.  I was looking at pictures and realized that I went a whole month taking pictures of nothing other than Bree.  Ha!  Bree and I really enjoy our three hours together every morning.  Although, honestly, most of the time we are getting errands done or cleaning up the house.  I try to make sure to save some time to do things that she would enjoy (such as the park or the library or even just playing in the toy room), but I wish there was more time to do that.  I'm hoping that as we get into winter that there will be more time to just chill at home, but I guess that would rely on me being a bit more organized and willing to get things done during other times of the day.

Normally, Bree goes down for a nap right about the time Finn comes home from school.  So that means that Finn and I have time to play, or do treatments if needed, and eat lunch etc.  I also use that time to do things that I can't do very well with Bree running around (such as mowing the lawn and running on the treadmill).  But it does make it hard to get errands done in the afternoon.  By the time she wakes up from her nap we are normally crunched for time if we want to get anything done and be back in time to get Kai from the bus stop.

So, I guess that explains what I mean by busy, but not busy, too.

Anyway, here are some pictures from when school started up until mid-September.  (In other words, Bree time!)

She LOVES to color!

And yes, she still loves her sweet treats.

It turns out that she likes to play dress up, too.  The pumpkin costume is her favorite.  We tried it on to see if it would work for Halloween and then she didn't want to take it off.

While I was busy upstairs she found her infant car seat (which I was cleaning up to sell) and she decided to get in.  All of a sudden I heard crying and I ran over to find her stuck in the car seat!  Yep, I laughed and took a picture before I got her out!

First time painting.  Look her brothers are there!

I got smart after this and took off her white onesie.