Todays appointment

today was his appointment that i have been dreading since his last appointment 

the one that involves putting him in a tube for x rays and poking him with a needle to get 5 viles of blood.  

more frightening than actually doing those thing physically are the results. 

on monday I mentioned to a friend that works at the hospital that I would be there today and she should stop by and say hi.  well after I get Ronan registered and halfway down to x ray i run into her and she informs me that she is going to hangout with me for duration of his appointment. 

This gave me such relief. Someone to help keep my mind occupied while we spend a lot of time waiting. Thank you soooo much. 

Well here are the stats 

Weight-24lbs 7oz

Height -29.6in (not much but fine. He did a lot last time)

O2-100 

His x rays were great. His lungs look awesome. Dr said pretty much equal to someone with a mild cold which is very good. :). 

I got to talk to everyone but the dietitian which is who I really wanted to talk to but that is ok. She had a family thing that she had to be at. We didn't get blood work back yet but the x rays is what I was afraid of. If things weren't clear then maybe nebulizers or something more to add to the routine. I am so relieved. 

God is good. Thank you so much for your prayers. I felt them and with the help of a friend I felt comfort. And so did ronan. Haha. He is soo funny. They put him in the tube for x rays and face him towards the wall he screams. They turn him to get his side and he can see the x ray techs and quiets down right away. He just wanted to see someone. 

It was just a good appointment. Thanks. 

an update but not

it is an update but not.

i have a lot of pictures and stuff to say but have yet to find the time to say it all and the patience to figure out the pictures.

it was just taking forever the other day and i just didn't think i had the time

 

but i felt the need to put it out there that Ronan has what they are calling his year cf check up tomorrow

it involves chest xrays, and blood work

xrays a year ago was alright...he screamed, but whatever

the blood work was bad a year ago....they couldn't find a proper vein and after the 5th try they went and got the guy that is really good at doing babies and he got what he needed in one poke and 10 seconds later.....so how do you ask for the big black lab tech please....not so politically correct. 

 

anyway just wanted to stay if you pray please pray. 

i am stressed about the whole situation and it just hit me yesterday that the results could be bad also....yesterday was not a good day.

 



One year

Sorry i am sucking at this blogging thing. 

I have a lot of blog posts I need to do, but won't get to it till after we are back from vacation

yes vacation without the kids to Cuba thanks to my parents...

 

Well here it goes. 

Ronan had a clinic appointment on the 10th

weight: 22lbs 13oz

height: 30in

O2: 99

Enzymes: 3 for a big meal 2 for small\snacks

 

He got a cold over Christmas and is on a antibiotic to clean up a cough that he had over 2 weeks.  pretty sure the extra mucus collected some sort of bacteria.

4 days into the antibiotic all of us except Zandria got a stomach bug

The stomach bug and the cold caused Ronan not to really gain weight, but he got taller.  Because he didn't gain weight but got taller he looks a lot skinnier and more like the other kids. 

 

Now on to the one year part.

Yesterday was the one year mark of when we got the phone call from our doctor. 

Bad parent that I am I couldn't remember the exact date until my mother in law reminded me that it was probably on the blog....sure enough there it was.  The day was no different than any other day as of late.  Percussion, food, nap, lunch, nap, percussion, supper, bed time.  Praying that he doesn't have to nebulize and that no one in our house gets sick.  Side note: my 6 year old and 4 year old are just coming to realize that not all babies get enzymes and percussion and nebulizing.  They thought all babies got that for a long time.  lol 

Over the past year we have nebulized twice and been on oral antibiotics 3 times.  I really don't know if that is a good year or bad.  I haven't really talked to any other parents or people with cf from Canada.  I read a lot from the states but they do things very differently. 

Health wise I would say he is doing very well considering how much sickness is floating around this year. 

We love him dearly and pray for him to stay as healthy as possible. 

Please pray for my in laws that everyone stays healthy and safe, and that everything goes as smoothly as possible.  That everyone sleeps well.  :) 

 



Last clinic of the year

So Ronan had his last clinic of the year before he turns a year

I was very nervous as we have had colds in our house and his O2 absorption was a bit lower than usual last time. 

 

Well here it is:

weight: 22 lbs 12 oz

height: 29.1 in

that puts him at the 87-95 percentile

O2: 99 (woo hoo)

he had a throat swab done but they haven't called to tell me anything and it has been over a week since we saw them....so that is good. 

He also got his first of 5 RSV shots. 

he got one in each leg at the same time. 

they didn't expect him to be as strong so had a bit more bleeding them usual cause he kicked and moved.  He gets another dose on the 21st. 

 

he got stuffed up and snotty a couple of days after but is doing ok now....you can tell when he hasn't got enough sleep. 

I will do a full update on him around his birthday. 

 

 

Stuff

Alright.....I am giving warning right now.  Seeing as it is the consumer buy stuff time of year this is a post about stuff and money.  Stop reading if you don't want to hear my opinion. 

 

Well it is Christmas soon.  the title of my blog would lean everyone towards me talking about what is going on in my life....nope talking about stuff we buy and stuff we have and stuff as a country that we don't really need. 

 

This past week was my birthday.  I hate my birthday. I do not like the attention or anything like that.

I don't like money spent on me.

I have a lot of stuff. I am spoiled already with out it being my birthday.

but my husband likes birthday, it is in his family and his DNA really

For my birthday I wanted one thing....a pair of jeans that fit.

I have not had such in like 2.5-3 years.  I have started to lose weight so I thought it was time to go out in public in something other than yoga pants.

I hate jean shopping. 

I would rather go bra shopping and bathing suit shopping in the same day and then have to clean my whole house instead of pant shopping. 

but it had to be done.

I found a pair of jeans that cost a lot.....like A LOT....but they fit and that is hard for a bubble butt like I have.  I wish I could have fit in the cheaper ones....I tried :(

As we were in the store I asked my husband if he saw anything he wanted.  He used to shop at this store when he was in high school and living at home. 

He said no....he was kind of disgusted at the price of things just for the name brand.

He decided that he would rather just get a good brand that fit him from Costco. His thinking is what got me to think about this post. 

 

There are a lot of people out there that love designer clothes...same clothes as other places, same quality , but it has that name on it. 

I have done the test with lulu lemon.....they suck.  My Costco yoga pants didn't pill as quickly and I found them more comfortable....but that may be the style that I had. I will never buy another pair of lulu lemon yoga pants for $100 when I can buy better washablity ones from Costco for $18. 

When I found the jeans I bought I was flabbergasted by the price....but Jer said I should treat it like the experiment I did with the lulu lemon....so here I am testing out silvers. 

 

We used to be at the point where there was no bloody way that that was an option.

we were saving for a house a reliable vehicle and kids.

We have worked hard...Jer working his job and working hard...me working when I could but my contribution was mostly budgeting and being very smart with money and name brand clothes were not even an consideration. 

 

Financially our world is sucking it up right now. 

a lot of my generation and/or a bit younger assume that they need to start off at the same level that their parents are at when they move out. 

NOPE.

It took our parents hard work to get where they are....why would it be any different for us....why don't we have to work hard and put in our dues. 

and then there are the other type that do work hard, but squander their down payment for a house or good car, or saving for kids on name brand clothes and top of the like electronics and the most up to date in decor for their rental.....

 

It is the time of year for consumerism....I do take part because I am a gift giver...it is a love language of mine.  but I also don't ever spend more than I have in the bank...I don't take money out of saving for it...my kids only get one thing from us....along with a new Sunday outfit for Christmas. 

 

 

my kids have a lot of clothes....most second hand and no name brand other than gifts

my kids don't know the difference and when they do...I will teach them that there are some clothing that are worth it and some that cost that much just for the name and that is not important.

My husband wears Tommy Hilfiger and Calvin Klein jeans from Costco that cost no more than $28.  If I fit into some of those I would buy them....

 

Money runs the world.....God rules my world

God loves me....and provides what i need when I need it...a house to live in, food, a van, the clothes we wear. 

 

 

I have turned into a hermit for a couple of reasons...and this is one...

there are too many people that complain about not having a reliable vehicle or a house that they own...but spending ridiculous amount on their kids clothes and on their clothes in some cases.

 

I am not perfect with money and in a lot of other ways...but i don't think I am careless with it 

 

 

 

Sorry if this offends you....but it was on my chest and I had to get it off.

and I will get back to you about whether I see silvers as worth the money. 

New Look-----update

my new look
what do you think??
I am in a dark mood lately
don't think it is the weather....not sure what it is, just like the black.

I am feeling very discouraged
Ronan is doing ok, but seems to not be normal
I know I know...he will never be normal, but they said we should try to treat him and everything thing about it as normal as possible
it is hard when you have a constant fear of colds and sickness during cold and sickness season
I am also almost at the end of my rope for Jeremy working out of town
we were not as prepared for this stint as others
from what we understood is that most of this bid was going to be in town
Jeremy has been working and staying out of town now since August
pretty sure he will be out of town till Christmas or a little after
if Ronan needs to be on Tobi again I am not sure I will survive


Now to his update. 
Ronan had a clinic appointment on Friday
last month-21 lbs 2oz
70.2 cm
O2-99%
This clinic
21 lbs 12 oz
71.6 cm
O2-94%

That last number is the part that worries me
the less weight gain is alright considering he had a stomach puking thing a week and a half before
the height is dependant on the day and whether Ronan decides to stretch out or not so don't super take that into account
that last number they like to have at minimum 92, but Ronan has never been lower than 98
what has changed?  what can i do to help this? 
I did ask this and they just said it happens
there must be something that i can do

I have recently done some searching for cf related blogs
I would love to find some other people that are doing this too
but I don't feel comfortable doing this in person....I have recently taken up the hermit lifestyle, not because of sickness....just sick of people I think....I don't know really
yeah so I have search it...and come up with a lot of interesting and informative cf blogs
but they are all from the states....they do things different have different drugs at times and the such
so if you know a Canadian blogger that has cf or a child with cf I would love info
my real go is to be in correspondence with someone via the Internet
i did meet another mom in the hospital but our kids aren't allowed to play with each other  and i still am a hermit and just love to text, email and tweet.

well i have to try to find out where i can go to get our whole family the flu shot and Elias his 4 year shot.....do you want to hold him twice...i don't
harder than you think considering there are flu shot clinics all around but we need the other immunization and also need Jeremy there to help hold him down.  he is strong


Well since i am a hermit i am hoping to write on here more regularly. 
thanks for reading and feedback on the new look would be great. 

Life, It is a bit crazy.

****warning a little whining from this point on so if you don't want to hear it do not continue****



 

 

 

life has started to pick up a bit with school starting

in 2 days we started everything

 

last week thursday we started another round of tobi (the inhalant antibiotic that he was on for the month of june) we also started an oral antibiotic also....got to get rid of this bacteria

and since this is the second time with the bacteria we are trying to make it stay away be doing it for a bit longer

so twice a day i take 20 minutes to do chest percussion and another 20 or so minutes to nebulize

and he has a bit more of a cough this time around....seems like more flem so i am trying to remember and make time to do an extra percussion in the middle of the day

when we all have to be out of the house by the time i drop zandria off at school it is a busy morning

yesterday was the first of said mornings

zandria in school(gr 1) elias in preschool and ronan and i heading to costco

we did it

all of us dressed clean and ready to go

in the evening zandria had her first music class....she loved it...can't wait to play the piano more

 

this morning was different

i had to show so i got up half an hour earlier than the day before

the kids woke up about the same time

but everything was a little off

at 8:20 when we are usually in the van and close to driving away i was just done nebulizing ronan

so that means that he is not fed yet and not changed yet

the other kids are and so i get a half bottle ready for him and i bring his close along and his cereal

did i mention that i had my women's bible study this morning

yep as other ladies were entering i was sitting at a table and feeding my baby

before signing him into the nursery i changed his poopy diaper and close and gave him his oral antibiotic

oh and did i mention that zandria was about a minute from being late....we- no I hate being late

i hadn't met her teacher yet and still haven't...a little annoyed

 

that brings us to tonight

zandria gets to start tidal wave

she is going to be one tired girl

 

so we started grade 1, preschool, music class, bsf, and tidal wave all in 2 days

crazy

 

oh and forgot to mention that jeremy is working out of town so i am single parenting it from monday to thursday

all you single parents out there deserve a medal and a holiday or even just a good nap

you are my hero



oh and i just wanted to mention the only reason i think that i have had even enough energy and sanity to get through this week is deep water aquacise(sp??)
my friend and i started doing it like 7 years ago when we didn't have kids and lived close to each other
now she has 2 kids and i have 3 and she started a week or so before me be asked if i wanted to join......yes please
it hurt but a good hurt....i missed it and missed the exercise
it felt good and helped me in a lot of ways....we are hoping to keep it up and go at least once if not twice a week....so excited....want to join us??