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.