Friday, September 27, 2013

Ebbs and Flows

It's been pretty quiet here on the blog simply because life has been pretty quiet.  We've settled into a routine that feels pretty comfortable and makes the days go quickly and, in general, relativey easily.

Our mornings are pretty basic--kids get up, I feed them and make sure they get dressed and then they move downstairs to get Finn's morning treatments in before we leave for school drop off.  While they are doing treatments, I get myself ready and pack Kai's lunch if I haven't already.  I also get Bree ready, fed, and pump.  Most of the time we're running out of the house with my hair pretty wet, but hey, at least I showered!  Well, most days I shower.  :)

While Kai is at school, our day seems to go fast.  Having a baby break the day into segments for you tends to make everything go faster I guess.  Bree either falls asleep while we are dropping off Kai or really quickly after we get home.  While she naps, Finn and I have our time together.  We play with toys, do crafts, read books, try other new activities, do chores, etc.  Since her morning nap is normally a long one, Finn and I have some good time together.  After Bree wakes up, I feed her, pump (if I have to), continue chores while the kids play, etc.  Bree is normally ready for a nap again right around lunch time, so I will set Finn up for a "Word World" picnic and then take Bree back to her room for nursing and cuddling and hopefully sleeping.  And then our day repeats again.  More time with Finn, more chores, and by the time Bree wakes up again we are getting ready to pick up Kai from school.  After school, Finn and Kai run off to play which gives me time to feed Bree, put her down if she needs it, pump, etc.  And finally it's time for dinner and Reid comes home for our nightly routine of dinner and treatments.  It's funny how quickly the days go.

Kai's Update

Kai seems to be doing well in school, at least academically.  He still does not really like school at all.  One day last week he woke up only to come out to the living room and curl up and cry on the couch.  He says he misses us while he is at school, but then he also confessed he misses the electronics, too.  That made me less than happy and we had a nice talk about that once I had cooled off a bit.  Needless to say he has been told that there are no electronics for him during school hours whether he is here or at school.

The last weekend in August Kai declared "Kai and Finn" day.  It was a day that he dedicated to playing (aka bossing around) with his little brother.  Those two are still best buddies and I love it.  It just makes it harder for him to go to school.

One day about two weeks ago I met Kai at pick up to find him in a pile of tears.  His teacher told me that he was upset because he had not received a stamp on his "Bee-havior" chart because he took too long to pack up.  She told me that he is slow and he needs to learn the consequences.  Well, we are fully aware he is slow.  I think he was most upset that he might get in trouble with me.  He didn't.  We talked about how he could try again the next day and practice packing up faster and that seemed to resolve the issue for the time being.  He came out of school carrying his folder yesterday because he didn't have time to pack it, but he had received his stamp so I guess that's an acceptable solution for his teacher.  Sheeew!

I have volunteered as Kai's classroom "Volunteer Coordinator".  Unfortunately, there aren't very many parents willing to volunteer and I don't feel like I'm being much of a help.  Because of my concerns with leaving Bree, I have yet to volunteer in the classroom, but I have taken work that can be done at home to help out in the classroom.  I've been doing a lot of cutting for his teacher.  I hope it's been helpful.  I'm hoping to get into his classroom soon.
This was a clssroom assignment that is hanging up at school.  They were suppossed to write something that began with "I like me because...."  This is what Kai wrote!  Good grief!



Kai's class has classroom mail.  He has come home with two letters this week.  I can't quite make out all of this one, but I do get, "You are nice."

For some reason, blogger keeps turning these upside down even though they aren't upside down on my computer.  This one says, "Kai, you are cool.  You are awesome.  You are nice.  You are caring.  You are really nice.  You are my friend."  Love it!

Finn's Update

With all of his one-on-one time with me, Finn has had a busy month.  We started out the month by working on potty training.  We started on Labor Day.  That first day he had accidents up until 6pm at which point it seemed he finally caught on and made it to the potty.  Day two we started with accidents again, but it clicked again around noon.  Finally on day 3 we had no accidents.  He did really well for about a week and then started having accidents again.  After nearly another week of accidents, he finally got it again and we are now nearly two weeks accident free.  I am super proud of him and have promised him a trip to the toy store as his reward.  He even woke up with a dry pull-up this morning.  Like I said, he's doing great!

On September 9th, Finn had his annual CF clinic visit.  It was LOOONNNGG!  Four hours at the hospital was driving all three of us (me, Finn, and Bree) crazy.  But it was a really good report and Finn was relatively well behaved.  He impressed me most with his blood draw.  We had the nurse put some Emla cream (it numbs the skin) on his elbow before we went for the draw.  And when the lab tech tied the rubber band on, I started to get worried, but we turned his attention to the TV and when the needle went in he said "Ouch" and turned to look.  He looked at the needle and said, "That doesn't hurt!", and that was the end of that.

Finn weighed in at 32 pounds, which was 1 pound less than he had weighed at his GI appointment 2 weeks earlier.  I knew exactly why he had lost the pound, though, and after a talk with the doctor and dietician they agreed that I could increase his enzyme dose to 6 pills when he has his Ensure Plus drinks.  I have been mixing those drinks with whipping cream and he is losing quite a bit of that fat and calories because of his enzyme dose.  Since that appointment he has gained a half a pound back.  It doesn't sound like a lot, but it's the first time he has gained weight without being on Periactin (his appetite stimulant)in over a year.  So I'm very happy about it.  And next week he will cycle back onto his Periactin.  I'll admit I'm really curious to see what happens to his weigh with the Periactin and enzyme dosage change.

Other than that, the doctor asked us to restart Flonase.  Finn had been a bit stuffy with just a little green junk for two months, so hopefully Flonase will take care of that.  However, since that appointment Finn has caught a minor cold (Kai brought it home from school) and he has become more stuffy.  Gratefully though, he hasn't developed a chesty cough.  We have done treatments three times a day and reintroduced Hyper Tonic Saline, too, to help out.  So far, so good.
Fishing for letters

Helping me make banana bread


I pump a lot.  This is what happens when Finn is left to his own devices.  He hung up all my bangs for me using a bungee cord!

Finger paint


Playing chalks in the garage today
So, yeah, it's been pretty quiet here.  Which for the most part is good.  I'll do Bree's update in her 5 month post on Sunday--WOW!