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.