June 23, 2012


so i am so sorry for not updating sooner. 
things are crazy
my life feels like ....like....mmmm like trying to coral seven to ten cats into a small room without a door. 
i feel like i can't keep up with laundry, dishes, cleaning, and gardening. 
or there is always bottle cleaning and sanitizing, baby food making, baby feeding and nebutlizing. 
there is also the other two kids that want my attention let alone my husband. 
i feel pulled and stuck in chaos. 
beginning to think it would have been less work to have twins then a child with cf. 
but i love ronan. 

so since i posted last we started and are still doing the nebulizer
two weeks into it and the day before he went for a check up we noticed that he was breathing fast and shallow.  we counted he was taking about 80 breathes a minute.  not good.
so at his appointment we got a prescription for an inhaler.  great another thing to add.  another change in routine.  booooo
he has gotten used to it.  he likes little einstiens. 
at that same appointment we had a weight check.  he weighed 17lbs 5oz.   wow he gain basically 2 pounds in a month.  seems a little much at his age....but whatever.  they were happy.  i asked the dietitian how much formula he is supposed to be drinking.  she sad about 6-7 oz 6 times in 24 hrs.  uhhh ok.  not.  he drinks between 5-6 oz 5 times a day.  i told her this and she just said...oh ok, well keep doing what you are doing he is growing great.  haha.  love it.  but in the past week since i was there, he has upped it to 5.5 and 6.5 oz 5 times a day.  he is a chunker.
he has started food.  he loves it. 
he has started other things too. 
my zandria was sitting/crawling at just over 6 months.  early.   well ronan started sitting at 5 and a half months....crazy soon...and he his good at it too...he can reach for a toy slightly to the side and not fall.  yikes...hope he waits to to move too much....

my other kids....

zandria is 3 days away from finishing kindergarten.  she is soo excited about have a break...give it a week and she will be bored.  she is also excited about grade 1. 
i am not looking forward to the whole summer of fighting and wanting to watch tv and saying that she is bored.  but it will be nice not to have to make lunch for her, or drop her off or not get up if we are all sleeping. 
she is moving downstairs as soon at school is over.  she is excited she has a new room with new paint, and furniture....  so happy with how it turned out decor wise....we will see how she fares sleeping downstairs.
she loves to sing....we are contemplating putting her in music class just not sure where.....a little nervous of the cost of it all too. 

elias....well not much to say about him....he loves being outside...even more now that he has a tractor.....thanks to spencer.  he has such personality.  he is no longer as shy...but loud and talks nonstop.  seriously....SERIOUSLY...talks all the time he is awake.  we love him tho. 
he is excited too....he gets a different room to.  elias gets zandrias room and ronan gets elias room.  and we get ronan out of our room.....wooohooo.    for the first couple of days tho he gets to sleep downstairs with zandria in her trundle bed....they are really excited too...because it will be fun...

jeremy is working in wakaw and in the city for a bit...but by the end of july he will be working out of town.  I don't really like it as much cause i have gotten used to it....but an up is that we get fridays with him...as when he works out of town he works 4 10s.....fun...we plan on camping a bit.. so far he doesn't mind the work he is doing....i am happy for that because if he doesn't like his job than life sucks for him cause that is where he spends most of his time. 

well that pretty much covers our lives right now.  we have a week and a half of the antibiotics and puffer....she we will see what comes of all that....i will try to do a post of my kids new rooms as soon as they are close to done.  until then  good night. 

June 1, 2012


I never realized how much I have come accustomed to a routine and change.  My kids fault.
In the last month we have gotten into a routine and very comfortable.  Confident that we can handle this CF thing....And then things change.  GGRRRR

Once a month or so they do a throat swab on Ronan and send it away....basically checking to see what bacteria are growing in his throat.  What is in the throat travels to the lungs or vis versa. 
Well 2 weeks ago he had a throat swab.  On monday they called me to tell me he has small amounts of bacteria in his throat that starts with an S.....(they all have long funny names I can't remember).  It is a bacteria that does not really make him sick, but it likes to stick to the sticky mucus he has that he can't get rid of easily.  It causes long term damage if it sticks around too long.  Ok so what do we do now???  another antibiotic....NO....well yes, but different. 
We got introduced to a compressor and nebulizer.  He is on an inhalant antibiotic that is administered via nebulizer. 
Wow is it challenging. 
Ronan has the ability to be more active and wiggly than Zandria. 
Our world is all about timing right now. 
He needs to sit with the mask on for 15 minutes twice a day.
He hates the mask.
I hate the mask.
He doesn't have an infant mask it didn't fit.....he is too big...supposed to fit up till they are about a year old....and you want him bigger....bhhhahahahahaaa.
But the bigger has a bit of a gap on him....oh well. 
The meds are pricey but thankfully the Sask Health covers it all. 
Expensive enough that I feel bad dumping out the left over meds after his 15 min is done. 
Oh well....I have to fight with him for 15 min....not going to push it more than I have too. 

Can we have this all stay the same for a while now.....PLEASE????