Update

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. 

Routine....NOT

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????

acceptable or not

There has been an article posted on facebook and there have been a couple of other people do some blog posts on the subject of bikini wearing....well I have felt the need to do my own.  This article by Carlaane is very informative....I like the point of it, but think it should be aimed at all women not just christians. 

I grew up wear bikinis or a two piece bathing suit because I have a long body and a small chest.  One piece bathing suit didn't fit once I hit puberty(thats when they started to make bathing suits expecting you to have a chest, which I still didn't).  This was also a while ago before the tankini, so no matter what most of my mid-drift was always showing.  I was young and looked a lot different than I do now.  I was a tooth pick.  Skinny and athletic.  I had the type of body that should be in a bikini, but never felt fully comfortable in it, but what choice did I have. 
When I got married or shortly before the tankini came into exisitence.  LOVE THEM.  But I have always had friends and known people that have worn bikinis, and some friends that have even lost wiegh just so that they could look good wearing one.  I always had the attitude that if you felt good wearing it who am I to say that you shouldn't. 
In the last 5 years my opinion has changed drastically.
First is my girl .  I want her to respect her body and to keep it for her future husband.  I see infants, toddlers and young childern wearing bikinis and tops that show more than they have or should show.  It is wrong.  My daughter will not be wearing a bikini as long as she lives in my house. 
Second is my image issues.  I used to look like I should wear a bikini.  I DO NOT anymore and to see other females "flaunt" their big breasts, flat stomach, skinny legs, whether worked for or not, makes me feel fat.  makes me feel like I am not good enough.  I know God has made me perfect.  I know that God has granted me 3 wonderful childern through this body, and that I don't regret and makes me feel proud of every stretch mark.  But that doesn't mean I need to show it off, so why do you need to show off your non stretch marked stomach. 
Third is mens reaction.  I am not visual just like most women, but my husband is like all men, visual.  That is just the way it is.  I don't like when I have to compete with other women for him to look at me.  I know I know this should be his job to keep his eyes on me, but he is not perfect and niether are other men.  Why should we make it harder for them.  If I was comfortable enough to wear a bikini I would be very uncomfortable knowing that I could be a stumbling block to another man other than my husband, and that he could be thinking of me later on(shudder). 
Fourth is my relationship with God.  This is kind of repeating, but He made me perfect and He is the one I live for.  He is the one I do all things for....He comands us not to do anything that can make a brother or sister stumble.  He wants us to focus on him not what that person is thinking of me.  focusing on Him instead of working hard to change my body so that I can look better than that girl in a bikini. Instaed of trying to show people what we have or what we look like why not show them how we love God and how God loves them.  
I love the way this blog puts it Fresh flowers.  I love they way she puts it into words like I have tried, unsuccessfully. 
What we wear matters a lot more than I ever thought.  It does make a difference and we need to remember that. 

Back up there

So....shortly after I stopped nursing we had an appointment with the cf doctors...the first one with the new dr, since the other one went on maternity leave.  Ronan had been slowing down in his weight gain.  which is to be expected around this age.  well at that last appointment he had lost 15g.  not really any difference when looking at it in pounds and oz.  So we had some changes put into place.  We upped the enzymes from half a capsule to one full capsule.  I have formula fed both my other kids, but started later.  It was also over 3 years ago...I don't remember.  I was feeding him 4 to 4 1/2 oz every three hours.  He would be a bit fussy after, but a soother would help and then after a bit he would be good.  Well they told me he should be eating 6 oz every 3 hours or so or eat more often than he is...cause he sleeps almost through the night.  So I was to either/both up the amount that he is drinking each time, up the amount of times he is eating, up the concentration of the formula. 
I was very discouraged after that appointment.  Not because he had "lost" weight, but because I was not listened to.  My kids have all slowed down at this age.  They don't care they want him to stay at the 50th percentile.  Well none of my kids have been that big....I asked what happens if he doesn't stay at 50....they said he will just deal better with the cf if he grows at that level.  I basically said he is doomed and they said no all kids grow different and he has different genes then his siblings....can't be that different.  I just felt like I was talking to deaf ears.  Don't get me wrong I know that they know a lot about cf, but they also don't know about my kids or Ronan specifically. 
Ok I know that we dropped the ball on how much he could/should eat.  We upped it slowly within a week up to 5 and half almost 6 oz in a week.  He had no problem with it...he seems happier more content....opps.  I refuse to concentrate the formula.  He has digestive issues....giving him thicker formula can not help...except to give more calories.  I didn't not want to deal with a screaming baby that has a sore stomach.  The enzymes were no big deal  almost easier...but his poops have been a bit odd...I think he is just really getting used to them.  He gets more apple sauce with them, so that he likes. 
Well Tuesday we go for a weigh in.  He gained almost a pound in a week.  13lbs 8oz to 14lbs 5oz....wowza.  I have a chunker on my hands.  He likes food and to eat. 
I had a really hard to not saying I told you so to the them.  If I would have gone on what I know and not on guilt from them he would have been on formula full time 2-3 weeks earlier and this no weight gain scare could have been avoided.  He showed the signs both the other kids did about not being full and happy but I went with the guilt.  GGGRRRR.    I did mention something along the lines of well formula could have helped a lot a couple of weeks sooner...they just claimed it must be the more enzymes.  My words and opinions fall on deaf ears.  So frustrating.  I can't wait to go see my family dr on Friday. 

be back tomorrow.

So a week ago we went for our routine 2 week appointment.  Recently Ronan has been slowing down in growth like every kid does.  Well last week he lost 15 g. Needless to say that some changes were put in place for this last week.  We go back tomorrow morning.....so we will see.  I will be back tomorrow with more on everything. 

That's it I am DONE

I have been struggling with breast feeding now for about a month.
I have been notice the beginning signs of me not being able to satisfy him.
but I have been working hard to put in the effort to keep it up as much as I can while still letting him sleep. all of my kids have been the same. between 3 and 4 months they start to show signs of being hungry, and I am not what will make it go away.
my husband and I took a prenatal class when pregnant with our oldest child. they went over all the regular stuff about birthing, labor, after care, and breast feeding. they stated all the info and support you can get for it. I don't know for sure but am pretty sure that he thought they were all hippies or weird people that like to talk about feeding their kids till they are 5, and how to do it and support each other in all of it. when we had our daughter and nursing started off not great, with having to deal with inverted nipples and milk that didn't come in right away, and just inexperience. he looked at me and said "I thought breast feeding was naturally easy, God given and the way it is supposed to be....well it doesn't seem to be". but my dad summed it up in the first week that we had her and were visiting and I was trying to get her fed he walks by me and says "2 rookies trying to figure it all out". SO TRUE.
Well for me it went even further....once I/we got the hang of it, it didn't last long. supposedly milk supply doesn't last until you choose to be done.
my daughter was starting solids at 3 and half months and weighed 11lbs 11oz at 5 months. at 6 months she weighed 11lbs 5oz. she lost weight. my doctor said I needed to start supplementing her with formula and start it off with preemie formula that is high calorie. I said no supplementing her...I am just plain done fighting with her and she was on formula full time and happy and full and slept through the night :D .
So when Elias started to show signs of not being full and the such, well we started supplementing at 3 and half months and solid food at about the same time that he was on formula full time at 5 months.
Well the time has come.
Ronan is special because he has had to have a bottle since he was just under 2 weeks old. He needed to be given vitamins and saline solution. God granted me a gift of being able to pump for him for about 2 weeks or so...which is a miracle. but then I used formula. I have always used as little as possible to accommodate him keeping his saline solution down. it was always little enough that I nursed a bit at the end, but that changed almost to the day that he turned 3 months.
At 2 months I wanted to quit, but I got a big guilt trip from the doctors and a bit from my husband....in his defence he was like why quit when it is still working....I can see where he is coming from, but he has never had a child attached to him everyday for 2 months(at the time, almost 4 months now)6-8 times a day for at least 20 minutes. I don't usually have a space bubble but I also have 2 other kids that like to cuddle and touch me.....I am not a cuddler.
It the last week Ronan has gotten sick...not anything to do with feeding. but it sucks. anyway..... in the last week I have really started to see the signs....actually for the last 2-3 weeks off and on, but very prominently in the last week,or last 3 days.
It has been an inner struggle. He is sick and needs antibodies and a good immune system and the best way to get that is from me, but he is fighting now not me.
In the past few days if I didn't drink enough or exerted more energy than doing day to day minimal chores he would fight. I wouldn't come fast enough for him, then he wouldn't get enough or he would show that he had enough but would want to eat very soon after, which is a lot of what Zandria did.
Today I didn't do a whole lot and drank water pretty good....it was going ok until tonight.
got latched pulled off and fought....finally got some food and then was done, fights burping, but did any way. then he pulls off and doesn't stay on, but stiffens up like a board and won't try.
I let him fall to the nursing pill. I was so frustrated and annoyed and relieved that I laughed.
relieved because I have been praying and begging for someone to tell me what to do about nursing. God is good...He sent the one person that really has the right to tell me that it was time to be done. Ronan. I tried my hardest and then went and got a bottle with formula and he tanked it and was happy after he burped......he can be super full and still fight and whine when the food stops until he burps.
I am on my way to being done, on Ronan's leading it seems. I will try to nurse at my usual times, but won't push it.
i feel relieved, and happy and sure that this is right.
but I am still me, so I do feel a bit guilty when I hear him cough, and when i see the price of formula.

God is Good and God will take care of us.....He has a plan.
His plan I believe is for me to be done now.

Been a while....

Well it has been a while. Sorry. I have had a lot going on and have been working on how to write all the things that are swirling in my head.

I am going to start with an update about all that is going on with Ronan and how we are feeling and dealing with all this.

Well last I had mentioned Ronan was 11lbs 8oz. Not sure I put his height on there but that is ok. We have been going more on the every 2 weeks span right now. He has slowed down in his weight gain....we all knew it would happen. The reaction that I got when it happened was not what I expected. It was pretty much at the 3 month mark when most babies slow down a bit in the growth that he also did. The doctors immediately said to put him on enzymes. He weighed 13lbs 2oz, not bad still gaining just over 15 g a day. The ideal of what they wanted was over 20 g a day. Again no lea way....straight to enzymes. Fine I will do what I need to do.

At this appointment they brought everyone in....the physio, dr, and nutritionist. All going over the same thing and saying and repeating the same things over and over. I came home with my head trying to process. I didn't even know what to feel. After I got home and just thought and talked to Jer I realized that I felt like I was being drilled all of the same care of Ronan needs again because they thought I wasn't doing a good enough job taking care of him or following their instructions. At this same appointment I got the guilt trip about nursing. It was hard.

The enzymes are a pain in the butt, but got to do what we got to do. I empty a capsule into a little container and then put half of it on a spoonful of apple sauce. Apple sauce because it protects them until they get to the small intestine. They told me I could do it with just dipping my finger in each and letting him suck it off to get it in him, but had to check his mouth after to make sure none of the beads were left in his mouth because they can start to break down in his mouth and enzymes are made to break things down including gums and cheeks. Well only a dab of apple sauce is not going to cut it in my opinion....so he gets a spoonful and is doing awesome. He gets them before every feeding except if he eats at night...I am too lazy and I am not going to mess with him going right back to sleep....the enzymes can make him really gassy.

But must admit that the enzymes have helped with his poops looking more normal. Not as greasy or mucusy. That is a bonus.


On Tuesday at his appointment they were expecting him to go back up to that at least 20g a day weight gain now that he was on enzymes.

Nope. He gained 6 oz in 2 weeks. He now weighs 13lbs 8oz. That is a little over 12g a day.

Yup. Should have seen the shock on their faces.

I understand that they are concerned and have their goals for them but they have to remember the family he comes from and his genes. Even tho his genetics say he has cf, he is still my child and the biggest thus far of my children....they can't change that with anything.

So they measured his length and charted him at 50th percentile and talk amongst themselves in a different room, then came back to tell me that they would stick to what we were doing. I wanted to say I told you so to them about him not gaining like crazy, but I didn't. At this point they also informed me that cf kids tend to do better when they are at at least the 50th percentile. Good to know...kind of wish I know sooner, but whatever. We realized, Jeremy and I, that they were trying to push the enzymes before the doctor went on mat leave this week. I understand that, she wants to make sure Ronan is covered, not missed or forgotten. He is going to be seeing doctors that aren't as devoted to cf as the other doctor was.

Now since we are on enzymes full time, I am having a hard time figuring out why I am beating myself up about nursing, why am I fighting with him, why is it such a big deal when he is already getting help with the digestion and even with his immune system. I didn't mind nursing my other kids, but have come to hate it this time around. I know how important it is to him, but I also think that my other kids need me to not be tied down by always trying to keep it up, plus I am beginning to not be happy. I think my family needs a mommy that is happy and helpful, not sitting here dwelling on not wanting to do this or anything else because it is not working. Such a conflict of guilt selfishness worry and stress. what to do what to do. :(

Elias has been coming to all the appointments. He is awesome with this stuff, all the other stuff in our life tho....total defiance. So frustrating. We have a strong willed child. I thought Zandria was....nope I was wrong...God was working up to Elias. Just got to work on working with him to put it to good use, if it doesn't break me first.

Zandria loves school. She is sooo active and fun. I think she is my hypochondriac. Always playing the sick card. Also very frustrating. Doesn't help that we have been sick a lot this winter....I mean A LOT A LOT. I am not positive but think that since November we have had maybe 3 weeks where no one was sick in our house. SUCKS. I know a lot of other families that have struggled with the same this winter, other wise I would think that there was something in our house making us sick. Ronan seemed to skip it all until this week. He got a cold....the dreaded 3 week cold that has been going around. The unfortunate thing is that they want me to call or come in in five days if he hasn't shown improvement, but this cold goes on too long so not sure what to do.

Life is going on for us...the normal in our lives keeps changing...with renos and baby and such....wondering when it will change and not sure if it ever will settle down. Oh well.