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.