3 Weeks until Christmas

December has been a mixed bag--good but hard and emotional.  Christmas time is a wonderful time of year.  I love the lights, the decorations, the music, and the smells.  But for the first time, my heart was touched this year and I was able to see it from the side of those who aren't as blessed as we are.  And that was hard.  I learned what it really means to "mourn with those that mourn" and I truly feel that I have been changed in a way that I never anticipated.  

This was Bree one night.  Yes, she was tired but she was also throwing a fit because it was Finn's turn to set the table and not hers.  I don't understand why my kids fight over chores!  I know I certainly didn't as a kid.  My kids see it as a wonderful to chance to help and be with mom and they all want it.  Ahhh!!

Finn attended a birthday party for his friend Ethan that first Saturday in December.  It was held at Dart Warz, a Nerf gun arena, and he had ad blast.  It was so cute watching these little ones run around with their Nerf guns.

The second week of December we had preschool at our house.  We were working on the letter M and so we glued macaroni onto our "M"s.  Our second day of preschool that week was canceled due to a 2 hour delay at the school district and then the next week we had to cancel due to illness, so this was the last day of preschool for the entire year.

This melted my heart.  Finn was looking at his returned/already corrected work from school (some of it was over a week old) and was correcting his errors.  He wanted to make sure that he had gotten it right!

This week was also a very emotional week for me.  On Monday the 5th of December, I had taken dinner to a local CF family whose son had also been diagnosed with stage 4 neuroblastoma.  He had beaten it a year or so ago and was in remission but right before Halloween they found that he had relapsed.  This particular cancer affects the GI system, which unfortunately is also affected by CF.  We met the family as they were coming out of a CF clinic appointment and it was the first time that Finn got to meet Logan.  I hadn't planned on the meeting as we generally try to abide by the guidelines published by the CFF to keep those with CF at least 6 feet away from each other at outdoor events and to only have one with CF at any indoor event.  But because of how late the doctor appointment was running and because I needed to get back to school to pick up Kai, I had to run the food inside to them and that is where we met up.  I hadn't seen Logan in years and I was so surprised I was pretty much speechless.  I was surprised by how little he was.  Finn is small and Logan was smaller.  I figured that years of heavy medications and tough medical battles had affected his growth.  The other thing that surprised me was his spirit.  He was friendly and seemingly full of life.  His mom is a hugger and I think I hugged her a good 3 times in those 10 minutes.  When a child relapses with neuroblastoma the odds of survival are basically non-existent, and everyone standing in that room was aware of it.  I came home that night and cried myself to sleep as the reality of never seeing Logan again hit me.  I kicked myself for what I didn't say to him and for forgetting to take a picture and not giving him a hug.  I cried because a child that reminded me so much of my own son was going to die and that was just not fair.  I spent the rest of the week fairly emotional but determined to find a way to serve his family again, if needed. 

That weekend, on the 10th, his mother posted that there had been a sudden and dramatic change in his condition.  And by the time I got home from church on Sunday the 11th the family had posted that he was not expected to survive much longer.  Logan was in his final hours.  I was heartbroken for the family and for him.  He passed away later that evening.

On Saturday the 17th it was Logan's funeral.  When he was first diagnosed with cancer two years ago, his family made a video for him with the song Superheroes by The Script.  It was the perfect song for him, right down to "he's got a beast in his belly that's so hard to control".  Logan was a true superhero in every sense of the word, and so it was only fitting that his funeral by superhero themed.  It was bitter cold that day (highs in the single digits) and there was snow and ice on the roads.  It kept many from attending his funeral which was unfortunate, but it was a beautiful ceremony.  I have been blessed over my lifetime to associate with many from different faiths and to attend services for different faiths over the years.  I have found that there is so much we have in common and I often find myself nodding in agreement to the words that their faith leaders share.  The funeral was no different.  The words of the pastor touched me.  I will admit to being taken aback initially by the number of people in jeans (including the pastor--at least his were black, though!) at the funeral, but once I got over that shock, it was beautiful.  I sat with another CF mom from the community and tried my best to keep my emotions in check.  I really wasn't that successful.  Attending the funeral of a young child is an emotionally difficult situation no matter who you are.  

It was a closed casket service but there were superhero figures on the top of his casket.  There was also a slideshow from his life and wonderful memories and stories shared by those who knew him best.  I was grateful to get to hear more about this little boy that I barely knew and to be there to show the family support.  At the end of the service they opened the casket for those that wanted to view him.  Initially I left the auditorium with the other CF mom and did not stay for the viewing.  But after signing the guest book and visiting in the foyer, I found myself alone and with some time and so I headed back in.  The auditorium was nearly empty by that point and Logan was at the front, all alone.  So, I went to see him and visit with him.  He seemed so peaceful, as if he was just resting.  I could nearly imagine he was breathing and just laying there asleep.  The whole day was beautiful and touching and just perfect for a child who was truly inspirational.

My kids all dressed up as superheroes to honor Logan

My superhero costume for the funeral which I borrowed from one of the 11 year-olds in our primary.  I'm glad she chose to be SuperWoman for Halloween this year, and I'm very glad her mom is my visiting teacher.  I think I may need a costume like this of my own.

As if there weren't enough emotional goodbyes in December (one day I should blog about my experience being released from being a Primary Chorister--it was the hardest release I have ever had), Finn had to say goodbye to his 1st grade teacher, Mrs. Van Wieren, on December 20th.  After struggling through the first half of the year, his teacher decided it was best for her, and her family, to resign.  We worked so hard to help her understand Finn and his needs and we were finally seeing good results, so to have her go has been a blow.  When he returns to school on January 9th there will be a new teacher, Mrs. Gracsyzk.  I've already had a meeting with her and have to say that I am nervous. That being said, she has substituted many times for Kai's GE teacher this year and Kai says he likes her.  I'm holding out hope that she will be a good fit for Finn.  I'm not looking forward to the transition period, though.  

While this is not a good picture, the memory is a good one.  As we were going through the hustle and bustle of getting ready for Christmas Finn had a day where he wanted to be good and helpful all day.  He said it felt good to be nice and so he wanted to see if he could be nice for a fully day.  That afternonn we were at Walmart and he insisted on pushing the cart and making sure his sister was happy and entertained while we shopped.  He really was being a good brother and was having a great day.
There was another day not long after this one where it was just me and Finn at Walmart. As we parked he saw a man sitting by the entrance to the store with a large backpack, sign, and a dog.  It was obvious that he was asking for money, but I wasn't sure that he was actually asking at that moment as I'm sure Walmart would not have permitted that.  Normally they stand along the road in that shopping center.  My guess was that he was just coming out from getting something in the store and was sitting by the entrance to rest.  Finn was immediately concerned for this man and, as always, I struggled with having no cash to give to him (I normally never have cash as we are pretty much a strictly credit card kind of family).  Finn looked through the car and decided we could give the man some of the snacks we had with us.  It was a great idea (one we had talked about a few times before but had never done).  Since the end of this summer I have kept a basket of snacks for the kids for when we have to run to lessons, etc., and it's been so handy to have right there.  Finn picked two Costco individual bags of trail mix to give to him, and I added a candy cane that I had in the front from Christmas parties.  As we approached the entrance to the store, Finn walked up to the man and handed him the trail mix and candy cane and said Merry Christmas.  The man was very receptive and returned the greeting and we went on in to do our shopping.  Finn skipped through the door and was delighted that he had been able to help out.  I love that he is learning the joy of serving, even in just the little things.  He is my more sensitive child and it is touching to see him want to help those we see who may not be as blessed as we are.  

Rounding out November

We came home from Thanksgiving and jumped right back into life.  There were only 4 weeks until Christmas and just 3 weeks of school to go.  

My own princess or fairy godmother!  If she waves her magic wand will it clean my house?

Bree had school at Ms. Lisa's house that week and they were working on the letter L, so they made lollipops out of rice krispy treats and licorice.  She loved her lollipop and decided it could count for LUNCH.

Finn right back at tennis.  If only I could get him to stop goofing around so much, he could be really good.

Thanksgiving 2016

I love that our kids have the entire week of Thanksgiving off from school.  I also really like that Reid's sister is only 500 miles away and that it's pretty much a straight shot east.  It really is an easy drive.  The "hardest" part is getting to I-70 but it's not really "hard" it's just that I'm impatient to be on the interstate and start going 75 MPH instead of being on a state highway going through little towns and having to slow down and then speed up again.  So, those 90 minutes from our house out to Limon before we get on the interstate are my least favorite, but then once we get going it's a very easy trip.  It's also a super-bonus that Reid's parents have moved to Lawrence as well.  So not only do we get to visit and play with cousins, but the kids can also see their Grammy and Papa.  And we have two different places to stay so that we don't overwhelm one family.  Well, in theory we shouldn't overwhelm one family....

The weekend before Thanksgiving we decorated for Christmas.  It was the earliest we have ever decorated but knowing that we would be gone through Thanksgiving, I wanted to get the decorations up so I wouldn't have to worry about it when we got back.  I'm so glad we did that!  

We pulled the kids out of bed around 5:30 in the morning on Monday the 21st and loaded in the car.  Unfortunately, we actually didn't get going until 6:30, but at least it was an early start.  Traveling in your jammies is the way to go, as long as you don't mind getting funny looks sometimes.  But when you spend all day in the car except for a stop for lunch or the bathroom, it's nice to be comfortable.

 We got to Lawrence around 5:00 or so Kansas time which was good timing to head over to Kristi and Erik's for a pizza dinner.  The kids had a blast playing with their cousins.  It also happened to be Bryn's 14th birthday so we got to have birthday pumpkin pie (her tradition) and sing to her and watch her open presents.  We had decided to spend a couple of nights at Carl and Joyce's house so after all of that we had to head back to their house (about a mile away or less) and get ourselves unpacked and set up.  Unfortunately, traveling with medications and medical supplies is overwhelming to me at times and I have a hard time trying to find a set up at other houses that works for me and keeps our routine flowing.  Our kids ended up getting to bed around 10:30 that night (Kansas time).  Thankfully, for the most part my kids know to sleep in because we sure needed it after such a long day.

On Tuesday the 22nd, the cousins had school and so we were able to spend the morning at Grammy and Papa's and then meet up with Kristi and Maci for some lunch at Raising Cane's.  From there, Reid went with his parents to the grocery store and then back to their house.  Kristi and I went with the kids to Kohl's for a little shopping/browsing and then she went to pick up her kids.  The boys and I did some shopping on our own and then headed back to Kristi's house so the kids could play while Grammy and Papa rested.  After that we left the little girls at the grandparents' house and we took our older kids to Epic--a fun arcade and laser tag place.  We played a really fun game of laser tag (my first time ever) with all of us on one team against another family.  We had a great time and we had all worked up a sweat by the time we were done.  The kids then enjoyed a little arcade time before we had to head back to get the girls from Grammy and have dinner.  Once again, this was another very late night and the kids were up past 10.

On Wednesday the 23rd, we headed to Kansas City to shop at the Legends (outlet mall) and eat lunch at the T-Rex Cafe.  It had been almost 5 years since I had been there with the boys and Reid had never been.  We had a good time, but need to remember that the wait for food is horribly long and it's very overpriced.  But at least the kids had a good time and for the most part, no one got scared this time.  Yay!

Finn and Isaac adore each other.  They play so well together.  This picture was late but they were strolling hand in hand through the outlets while we were shopping.

As we were finishing up at Gap I was standing off to the side with the kids right by the front door while Reid and Erik were checking out.  Next thing I know someone walking into the store complimented me and Kristi on our window models.  It turned out a couple of our kids were out there posing.  Once we were alerted to it, the others joined in and wanted to be apart of the Gap display.  They were so funny!

On our way home from the Outlets we talked about where it would be best to stay.  While Grammy and Papa had more room for us, our kids were staying up way late as we were struggling to get meds and treatments in with everything being at their house, even though we were spending a lot of time with Kristi's family.  So we decided, to go ahead and move over to Kristi's house.  This ended up being a great decision as Finn could do treatments while playing with his cousins and my kids were able to get back to a normal bedtime.  Sheww!

Thanksgiving morning.  Joyce took care of the turkey and stuffing and Kristi made pies, rolls, potatoes, jello salad, etc.  I was quite impressed with Kristi and Bryn's teamwork in making this cherry pie.  It turned out yummy and pretty!

Thanksgiving itself was a wonderful meal and a great day.  The kids loved being with their cousins and enjoyed a fun "hike" mid-day over to Grammy and Papa's house with their Uncle Erik leading the way.  Erik has also recently purchased two antique motorcycles and he got them out and let Reid take one out for a spin while I rode on the back of the other one with Erik driving.  It was actually really fun.  I can see the appeal for sure!

The day after Thanksgiving we took a hike through the local nature park before heading to the Sandwich Bowl for lunch.  Seriously, Monument needs a Sandwich Bowl.  It was one of my favorite meals the entire trip.  Yummy sandwiches, yummy soup, and really good prices on kids' meals.  

We were joking that the 4 boys could be their own Gap ad as  they were all wearing the new sweaters they had bought earlier in the week at the Outlets.

That night, our last in Lawrence, Kristi got a babysitter for the 4 youngest kids and the rest of us went to Breakout Lawrence.  It was our family's first time in a breakout room, and the Perrins' second attempt.  Their first attempt they did not make it out in an hour.  This time we tried a different room that had a 28% success rate (yikes!) and working together, we did it!  It was such a fun and neat experience.  I would love to do another breakout room!

While we were in the breakout room, Santa visited downtown Lawrence and helped with the lighting of the Christmas lights.  So, when we came out we saw these lights in Downtown Lawrence.

We had a great time in Kansas for Thanksgiving.  The time went so fast and we were so busy!  The kids loved being with their cousins.  As we were driving away, poor Finn was in tears in the backseat already missing Isaac.  I have a feeling we might have to visit more frequently, especially since Grammy and Papa are there now and somehow we didn't get a single picture with them our entire time there!

The first half of November

It seems the more we are into a routine, the less I take pictures.  I may need to work on correcting that because no matter how "normal" our life may seem, pictures are priceless and these days go so fast.  I want to remember them and I want my children to remember them and know that we have loved them and the time we are together. 

Anyway, November was much of the same.  Finn's music class on Tuesdays, Wednesday tennis and scouts, Kai's piano lesson on Friday.  And preschool on Tuesday and Thursday for Bree.  On Thursdays I volunteer in Finn's classroom (as long as there is actually school for Finn and Bree), and on the other days I try to get through a school lesson with Bree at home and I also try to get in some treadmill time.  Add in the normal housework of dishes, cleaning, and laundry and I often feel that I need to adjust my schedule somewhere.  It would be nice to get up before the kids and get in a run and a shower, but I'm having a hard time dragging myself out of bed.  That should also be another goal to work on.  I'm sure it will happen soon.  I just need to get myself in bed earlier and set an alarm (but I despise alarms!).

This sign at Wal-Mart in November definitely made me gasp.  Really?!  Wow!  I feel like this year we have been pretty on-top of it in terms of Christmas.  There really isn't much of anything our kids need and, other than Bree, there isn't much they want either.  I've struggled with buying them presents as I feel we are spending money for the sake of spending money and that seems so wasteful these days.  But that being said, all of our kids will have a nice Christmas.  There aren't any really "big gifts" coming (except for Bree--once again), but some items that they will enjoy.  I think just being home with family, going to church to feel the spirit of Christmas, and eating a nice meal with a couple of small, nice gifts thrown in, sounds like a good day.  I hope they enjoy it!

The first weekend in November we did some dog-sitting again.  Peanut is a 13 year old female beagle that belongs to a friend.  We watched her for three nights and I have to say that as much as I enjoy having a dog to take on walks, and for my kids to play with, I found that it didn't make me overly happy.  We have been debating on a dog for a while, as it would be a wonderful thing for the kids, but I just wasn't really feeling it.  And considering I was wanting a beagle, the fact that having this beagle in the house didn't make me elated has been enough for me to think that we might be best as a pet-less family.  I know that it would be different if it were our dog, but the reality is that I have so much else going on in my life that a dog would just be another level of responsibility that I don't know I can take on.  If we had a dog, I would want to love it and be excited about it and feel like it were a member of the family.  And I just wasn't feeling any of that with sweet Peanut.  We did take her on a walk one morning and that was fun and she is a great dog, I just don't think I can handle one of my own.

On Monday the 7th Finn had his annual visit at the CF clinic.  That means that in addition to our normal visit routine, we also had blood work.  Since the kids were out of school that day, Kai went to Nathan's house and Bree and Finn and I trooped into clinic.  I'm going to have to find a place for Bree next time because she's turning into a huge distraction and liability at these long doctor's appointments.  Boo!  Anyway, I was very proud of Finn for doing so well on his PFTs (lung function testing) and his throat swab.  He did this throat swab without barely any fuss which is HUGE for him.  After they had taken the swab I kicked myself for forgetting to ask him to cough and bring up stuff from his lungs so that we could get a good idea of what was down there.  In fact, I was pretty sure the culture would come back clean because his sinuses seemed to be under control at the time (and normally the Staph we get is from his sinus post nasal drip).  I was surprised to find out how wrong I was.  Not only did his normal Staph show up on the swab, but so did the dreaded Pseudomonas Aeruginosa.  This is a bacteria that is of particular concern to those with CF because of it's ability to cause long-term lung damage.  It is a bacteria that is rarely found in people without an underlying medical concern (so, basically you wouldn't find this in the airways of hardly anyone else) and it is opportunisitic.  The presence of PA is known to lead to inflammation, infection, and permanent lung damage, even without any outside symptoms that it is present.  I will say that when Finn came down with a cold at the end of September, early October, I was convinced that a bacteria was behind it because of the impact it had on his lungs.  After clearing up most of the sinus manifestations of the illness and nearly every other outside symptom, Finn continued to struggle to breathe during activity for a couple of weeks.  There was a Saturday in October where I had to bring his inhaler out to him in the street, as he and his brother were having bike races with the neighbors and he was struggling hard to keep up and was coughing quite a bit.  The other times he has had this reaction to an illness was when we had positive cultures for Haemophilus Influenza (H. flu), which is a bacteria that causes cold like symptoms and is quite common.  With this positive culture for PA, I'm wondering if he has been carrying it around for a while and if it is in his lungs and not his sinuses.  I so hope not!  Since this is his first time culturing this bacteria, we started with immediate inhaled antibiotics in an attempt to eradicate it.  Our doctor says we have an 80-90% chance of getting rid of it for a time with this course.  We did inhaled TOBI for 28 days, two times a day.  It added an additional 9+hours of nebulizer time during the months of November and December, and made us late to school a handful of times as well.  We will go back to clinic on January 9th for a retest.  If PA is still present, we will be doing this course again, as well as adding an additional oral med.  And then if that doesn't work, I believe the next step is two weeks of hospital IVs.  When Finn was younger, our clinic used to have the protocol of going straight to 2 weeks of IVs, so I'm grateful that has changed in the last 3 years or so.  But the presence of PA is concerning to me.  It's another step in his disease progression, whether it is manifesting itself or not.  It's just another benchmark and another reminder that yes, our child has CF.  And that is not fun.

Oh, and I should add that his lung function was at 92%, which is the best it has ever been.  I'm grateful that he has the technique down now so that we will be able to actually use these numbers to guide treatments and know what is going on in his lungs.  And as for his bloodwork, it all came back normal.  He threw a bit of a fit about that, but once the needle was in he realized it didn't hurt (we used EMLA to help numb him up) so I'm hoping he'll remember that for the future.

Halloween 2016

The week of Halloween my little kitchen helper was talking on the phone (it was either Grammy or Maci she was pretending to talk to).

The church Halloween party and carnival--Every year our Bears are in charge of the church Halloween carnival.  It's actually a required activity for them to earn their Bear.  Kai was going to run a booth he called "The Spinner of Doom".  Instead of making one, Reid decided to buy a spinner.  It's a nice one and it made the booth super easy.  The only problem was that Kai threw up the morning of the Halloween party (remember that stomach virus Finn had?  uggh!) and so he was unable to attend the carnival.  So, I had to run the booth with these two cuties running around the carnival on their own.  Kai was very upset to miss the party.  But luckily his scout leaders let him write me a thank you note for running his booth and counted the requirement for him.  Yay!  So, for Halloween, Finn was Iron Man, Bree was Doc McStuffins, and when we actually went trick-or-treating Kai was a stormtrooper.  I had to go to 6 different stores to find that silly storm trooper costume!

As if life wasn't crazy enough that week, preschool was at my house.  So I threw a Halloween party for our little 3-4 year olds.  I had planned on taking more pictures but it's hard to run a party for 6 kids and take pictures at the same time.  This is Eleanor eating her donut off the string and Bree's little "best friend" Xander is off to the side.

Other than eating donuts off a string, we had a spiderweb walk where the kids had to stay on the web and pick up all of the spiders and put them in a cup.  It was a fun game.  One mom came to help for a small part of the party and I am SO glad.  In this is picture is Molli (dressed as a queen) and Wally.

We had two crafts that day.  This one on the top was a create your own bat out of shapes.  Bree took it quite seriously and had to make it just right but I was impressed with the various interpretations of a bat.  And then under the bat was a pumpkin patch where I had drawn a pumpkin vine and written the letters we have learned so far and they had to match those letters to the correct uppercase letters (which were written on fall stickers to decorate the vine).  They needed a lot of assistance on that project!  Yikes!

We enjoyed some good weather that week and it was one of the few times that I can say trick-or-treating in Colorado wasn't bad at all.  We went with friends this year in their nicer neighborhood and my kids SCORED!  In just one hour, everyone's pumpkins were utterly full and heavy with several pounds of candy.  

Another view of bike riding that day

Reid wanted some bright yellow shirts to wear trick-or-treating so he bought a 2-pack and all of the kids had to try it on and take a picture with daddy.

And just because it was 2 days after Halloween I'll throw in a picture of  food happiness.  It's not often that I cook this meal, but when I do it feels like heaven.  It's sausage lentil soup and then rolls (these are from Texas Roadhouse).  I don't make this often because I'm the only one who really loves it and so I end up eating the whole pot of soup over the course of several days and that's enough to make me think twice about making it again for a long while.  But it's yummy and one of my favorites and just feels like comfort food perfection.

Finn's 7th Birthday

 Ahhhh.....technical difficulties.  The reality is that I barely sit down at the computer anymore and when I do, it's after the kids have gone to bed and I'm just not in the blogging mood.  And then there is the complicated issue of getting pictures from my phone to the blog (or from Reid's phone to Google photos to the blog.)  The picture issue is what has held up this blog post for nearly two months.  But here it is--Finn's 7th birthday!

Finn's birthday this year got spread out over several days.  Lucky kid!  His actual birthday fell on a Monday, but we gave him his big present on the Saturday before hand.  He got a brand new, BMX-style bike.  It's a 20 inch bike, which means it's just slightly too tall for him to get on and off easily.  But we figure by the time it's bike-riding weather again next year, it will be just right.  For now, when it is good enough weather outside to ride, Reid has taught him how to use a rock as a stool to help him get on the bike and he taught him how to "crash" to get off in the grass.  He loves having a big kid bike.  And the awesome green color is also a huge plus!

Learning to steer into the grass to crash and get off

 On Monday we celebrated Finn's birthday with birthday cookies at school and then dinner out to Texas Roadhouse.  I should have suspected he wasn't feeling well when he ate very little of his dinner.  He ordered all of his favorites and normally this is the dinner we can count on him eating quite well.  He loves the rolls, fried pickles, steak bites and mac 'n cheese.  But this particular night he just wasn't eating as well as I would have thought.  We managed to get the car in the driveway before he threw up.  Ugghhh....poor kid.

He did sit in the birthday saddle.

Once we got home, he just wasn't feeling up to cake and he only made it half way through opening his presents before he asked to go bed.  That green bucket--that's his that he keeps for his tummy episodes and it makes me sad when it has to follow him around the house.  That night I moved his mattress into the living room and I slept on the couch next to him.  I had his feeding pump going super slow (10 mls an hour--that's 2 teaspoons) with only water and miralax.  This is the third time he has had continuous vomiting like this and I'm still unsure if these episodes are typical stomach bugs or if it's indicative of a blockage forming.  Blockages are quiet common in CF for many reasons and with Finn's chronic constipation we are lucky that we've never had a severe one.  But, these episodes make me wonder.  Anyway, with his pump on a slow drip he was still not keeping anything down.  It took until nearly 4am for the vomiting to stop and for his tummy to finally keep a little fluid down.  And not long after that he had a good trip to the potty and it all seemed to be getting better (see my confusion about constipation/blockage?).  Clearly he stayed home from school the next day and I worked on getting him hydrated and rested.

Tuesday the 18th he was excited to finish opening his last two presents and he even let us sing to him and have cake.  He never did have any cake himself, though.  He just wasn't ever up for it.

The last gift he opened was a Star Wars jelly bean machine.  He loves Star Wars and jelly beans so he was thrilled with this!  I was secretly hoping we could use it as an enzyme dispenser but it turns out that the enzymes just didn't work with the machine which means he actually has to use it for jelly beans.  I can tell you that he's not disappointed about that!

 On Wednesday the 19th he went back to school, but later that night he threw up again.  Good thing there was no school scheduled for Thursday and Friday as it was Parent-Teacher Conference time.  Thursday he did have a CT scheduled for his sinuses and so we had to drive to Highlands Ranch (south side of Denver) early in the morning to be there.  He was a champ and even allowed me to leave the room while he did the CT on his own.  I stood in the control room and unfortunately have enough experience looking at his CTs to know that what I was seeing was not good.  I was right, as his ENT called within two hours to tell me that he had complete opacification of all of his sinuses and that he needed surgery.  We were still in Denver at the time and I didn't feel like talking so I just let it go to voicemail and listened to the message after.

So, you know those technical difficulties I mentioned earlier?  Those are what are keeping me from rotating this picture.  It would just be too much work, so you'll have to deal with it sideways.  Sorry!  Anyway, the reason we were still in Denver when the ENT called with the CT results was because we decided to take the opportunity to stop at Park Meadows Mall and visit the Lego and Disney stores.  We first had lunch at Chick-Fil-A and then we moved on to the fun shopping portion of our day.  Can anyone say "Retail Therapy"?!

Bree at lunch

 The boys spent their allowance money on purchases at the Lego store.  It was the first time they had spent their own money and they have been saving it for quite a while.  Both boys had enough money for a really good Lego kit and so they had a hard time deciding which ones to get.  After they made their decisions, we headed to the Disney store where Bree and I were in heaven.  Seriously, walking into the Disney store is almost as good as being in Disney World.  I love it!  Bree is in love with Doc McStuffins these days, but since we don't have cable she doesn't get to see it often.  She was enamored with the whole display of Doc McStuffins toys, though, and asked for all kinds of them for Christmas.  I think she thinks Santa is made out of money!  Since the boys had bought some new toys, when we got back to the car I gave Bree some toys that her Aunt Kristi had brought for her during the summer and that I had been hiding away for just the right moment.  She got an Aurora and Cinderella doll, and Sophia the First dress up shoes and a new princess crown.  It more than made up for not buying anything new for her that day.

Here she is later that day wearing her new princess crown while swinging at Sister Longshore's house while Kai was in piano lessons.

And hear is the big 7 year old swinging.  He looks so thin in this picture.  Since his g-tube he has gained quiet a bit of weight (at least 15 pounds in the last two years) but he also looses it very quickly.  With the stomach issues he had going on, he ended up losing a good three pounds in a matter of days and I could immediately see it in his face.  Unfortunately, at this point we were only three days into the stomach issues and it would be a couple of more weeks before I figured it out.  :(

 Since my kids did not have birthday parties this year, I gave Finn the chance to pick an activity for his birthday and I let Kai invite a friend to come along with us.  Finn choose the North Pole (much to my encouragement to find something else) and then Kai invited his friend Nathan from church to come along with us.  So, we went to the North Pole on Saturday the 22th to round out Finn's birthday week.  I was smart this time and took a Dramamine on the way to the park and so I was able to handle the rides much better than I did last year.

Reid and Bree taking a selfie on the Christmas Ornament ride

Finn, Nathan, and Kai on the bucking bronco type ride

Bree LOVES rides and loves having her picture taken on them!

Kai and Nathan--Why can other people's kids look at camera and mine just can't?  I have gone through all of these pictures from our trip and seriously, Nathan is looking at the camera in almost all of them and Kai isn't looking in a single one!

Bree and Finn

My Ham on a motorcycle--Love this girl!

Everyone on the polar bear

And a final picture before we leave for the day.  We spent more time there that day then we ever have.  We were there just an hour or so shy of closing time, after having arrived right when they opened.  The kids had a great time.  

Finally, on November 2nd Finn had his 7 year well check.  I nearly cancelled the appointment as he had just recently been seen by his normal ENT, had a follow-up for a second opinion with another ENT the day before, and had his annual CF appointment scheduled for the next Monday (the 7th).  But on Monday the 31st I got a phone call from the school nurse to inform me that a confirmed case of the flu had been reported in Finn's classroom.  And since he hadn't had his flu shot yet, I was worried and decided to keep the pediatrician appointment, solely for that flu shot.  I'm so glad we kept that appointment!  I was reminded why I love our pediatrician and drive 25 minutes to see her when there is a pediatric office literally out my back door a half a mile away.  She asked about the ENT issues and I was grateful for her feedback and advice.  And then randomly, I mentioned that Finn had started throwing up 2 weeks prior and still was experiencing a complete lack of appetite and random vomiting every few days.  She was convinced that he was constipated and sent us for a belly x-ray.  I was so glad to get that x-ray because as I mentioned earlier, I'm not sure what causes these episodes.  The belly x-ray showed that he was completely and utterly full of poop.  Enough that even the radiologist was impressed.  And most doctors will tell you it takes a lot of poop to impress a radiologist.  The pediatrician called me when she saw the x-rays and told me that "any other kid would be writhing in belly pain".  We had been talking about his pain tolerance and the fact that he just may be used to living with pansinusitis and honestly, she's convinced that his pain tolerance is just incredibly high.  Between the CT scan and then this x-ray, I'm leaning toward agreeing with her.  The poor kid has no idea what it feels like to be normal.  I got off the phone with the pediatrician and walked in to see Finn bouncing around the tennis court having a great time at his weekly lesson.  He sure did not look to be in any pain or discomfort.  So, that first weekend in November, once he got home from school and had a good long 3 day weekend, we ran a miralax/ex-lax cleanout.  It is amazing how much good that did for him and his appetite.  Oh, and since then I have found out from another family that visited the ER for a stomach virus around the same time that there was a stomach virus going around that caused about 24 hours of acute symptoms but then lingered for 2-3 weeks just causing your gut motility to go really slow.  Because of Finn's already slow motility and CF GI issues, I'm sure that this virus just paralyzed his system and caused all of this back up.  I'm glad we've got him back to normal now.  And I'm glad that because of his CF diagnosis, I have the tools at home to take care of these issues and don't need to go to the ER (like that other family did).  I grateful the doctors trust me and allow me to take care of him at home, as several CF families thought we should be admitted to do this in the hospital.  The reality is that because of all of the medications and the G-tube that we have for him, everything they do in the hospital, we can do here (except IV fluids).  And so, for that I am extremely grateful that his CF diagnosis leads to much more proactive care which in turn keeps us in the comfort of our home instead of in a hospital.  What a blessing!  And what a crazy 7th birthday this kid had.  We love him so much!

The pediatrician texted me this picture of his x-ray.  A normal belly x-ray you can see some black snake like lines which are the intestines and air (black equals air, white equals bone, and gray equals other).  Notice all of the gray in Finn's x-ray?  That's tissue just full of stuff.  All the way full.  And on the right (his left) is his g-tube.  The x-ray technician made me angry as she came out and started asking all kinds of questions about it in the lobby.  She clearly had no idea what a feeding tube was or why one would have one, and she certainly didn't respect his privacy in asking and talking about it in the waiting room.  Ahhh.....joy.