Wednesday, December 29, 2010

Where ya been, Juli?

Computer glitches mixed with life, throw in a few over time shifts and you have a blogger MIA.

I apologize for the absence, however I find it to be a good thing. This blog was started as a place for me to vent, a place for me to run....Therefore no news is good news....

Christmas was as fun as Christmas can be.....running from house to house, eating too much, and children who just want to go home and play with their toys....Every year I say that I wont do it again. Every year I say that I'm going to stay home and enjoy Christmas instead of running from house to house.....maybe I will actually do that next year....maybe.

Tonight I'm going to leave you with pictures of the last hits the high points on what we've been up to :)

Chillin in my LSU socks :)

Play time with our Nebs

Harry Potter with Caitlin

Christmas Time!

Christmas Eve morning mess!

Cookie making time!

unpacking and organizing

Pizza night out!

Friday, December 17, 2010

The CF split: Do I have two personalities?

As I was driving across Lake Ponchatrain this morning, I had a thought....How did I get here? Not here as in on the Causeway, but here as in making that drive for four years without losing it....mind you, Ive come close a time or two but that's just not the point....

I blame it on the CF term for the persona you have to take on to deal with this disease day in and day the advocate, be the nurse, be the protector, be strong, handle this and deal with that and make sure...always make sure....just do do do all day long in and out and up and down and meals and calories and counting and calculating with the enzymes and the medicines, did this one, didn't do that one yet, got 30 more on this and then 20 on that, well i can do the laundry while this and squeeze in the floors after that and then maybe we can leave the house in.....well.....maybe we'll just stay in today.

Its hard to have your life sneak up on you like that. I liken it to an out of body experience, moments that sneak up on you and turn into a time spent looking from another point of view, from the perspective of who I used to be.....not quite so serious, the world wasn't quite so scary, invulnerable, unstoppable....perhaps its the CF split, perhaps its I write, I'm starting to wonder which has brought more change....maybe both, maybe its just life....

I see the differences most clearly on CF clinic days or days when Natalie is sick. Laughing and joking and just general feelings of well being are robbed, reality is thrown into your face over and over, the sinking feeling with every nurse or RT that walks into the room, with every blood draw, with every xray...her mortality is thrust boldly into my face and it hits the wall that I have built so that I can cope....

Its hard to break yourself out of that role. Its hard to see, to feel anything but the fight when you're in it. Its superhuman and almost robotic, there is no try, only do. Most cant understand that. All they see is that I get to work only two days a week and I stay at home with Natalie five days a week.....

Then there are nights like last night. Pizza night out. Ice cream. A trip to Wal-Mart and making Christmas Lists for Santa. Singing in the car on the way home. Bubble baths. Laughter. Fights over toys. Moments of blissful escape....

But here I am, fighting the fight, and trying find a reasonable balance between who I am and what this life has turned me in to...not that its bad, its just different.

I'm not complaining. I am blessed, I know this, and I am grateful. But there are just moments when you look around and say to yourself, "What the hell?".

Monday, December 13, 2010

Christmas, cold, and heat.

Its sneaking up on me. There is so much to do. I was never the type to actually write out a "to do" list. I always just kind of made it up in my mind and removed them mentally as I accomplished each task.

No more.

I actually sat down this morning and wrote out a list of things that I need to accomplish in the next two weeks (give or take a day or two).

As we all know, Christmas falls on a Saturday so that means that I will be spending Christmas day and the day after dragging myself out of bed for 16 hour work shifts....ugh! ugh! ugh! oh and did I mention UGH!!!! So that cuts me even shorter on time to get anything done.....*sigh* Oh I'm sure it will work out, but at what expense? My sanity? perhaps. It could be could ALWAYS be worse.

Grandma and Grandpa came to visit this week. Caitlin got to go shopping and they brought some really nice furniture for the girls..... THANKS GRANDMA AND GRANDPA!!! They are truly wonderful people and the girls just adore them.

Amongst other random activities of the week, the heater broke in the new house....ugh! I went to work Thursday night and when I got home Friday morning and went to turn it on.....nothing happened....nothing. I'm not the type to waste electricity so I had turned it off when i left the night it was cold....brrrrr! Thankfully it wasn't too cold Friday (mid to upper 60's), and thankfully (knowing my luck) I had the foresight to purchase a home warranty. So it was covered, however, they weren't able to come out until today...Soooo, I got creative. I turned on the oven and opened the door, closed all of the bedroom doors, turned on the bathroom heater opened the bathroom door. It worked perfectly. Caitlin was gone for the weekend and Natalie left Friday afternoon so I cuddled up with a pillow and slept on the sofa.

Were there better ways?


Could I have slept somewhere else?

Definitely. I had more than one offer.

But I wasn't going anywhere....this is my house. Through the good times and bad, broken and repaired, until uninhabitable do we part :) I love my house.

Over the weekend the other J brought a space heater from my parents house and came and warmed up the house before I got home so that I could sleep comfortably (he's so good), so it worked out fine. And as of 10:30 this morning the heater is fixed and we are good to go....yay!

Natalie is well. We have completed her Cipro which she lovingly (sarcasm) nicknamed "yucky white". At least we're down one medication on that ever growing medication list, right?

So we're off to run errands and check off items on my no longer imagined "to do" list. What's today? Monday? The 13th....ugh! Ten days, ten days, ten days! Oh my!

All of my best to you during this holiday rush! ~j

Wednesday, December 8, 2010

We're baaaaaack! ;)

As you can probably guess, I've been on a hiatus of sorts in order to get into the new house and get everything under as much control as humanly possible.

Yes, I realize that control is an that I enjoy.

We are moved in and trying to get settled....lots to do, but so little time.

Natalie is doing really well. Her cough is nearly non-existent. Her medicines are working as they should. She is cooperating most of the time. She still cant get into the habit of doing so many treatments. She just wants to play, so we spend a large majority of the treatment time moving toys closer, switching rooms, and trying to make the time pass as quickly as we can.

Here is her current medication list:


Cipro 5 cc BID
Periactin 7.5 cc BID
Zyrtec 5 cc q day
AquaDEK 1 capsule q day
Creon 12 25 capsules q day 4-5 with meals 3-4 with snacks and supplements


Tobi 1 ampule BID
Albuterol 1 ampule BID
HyperSal 7% 1 ampule BID
Pulmozyme 1 ampule q day
Patanase 1 spray each nare BID

It doesn't look like that much when you type it out...but it is time consuming.

Three of her medicines are liquid, that's 4 syringes to be pulled up along with 5 capsules to be swallowed at breakfast....
The Cipro makes her gag. I called the office and got a pill form called in, but it is not coated and instantly starts to dissolve in her mouth, therefore it is no better than the liquid. So there is coaxing and coaching and cheering until they are all gone....

Then we start her inhaled medicines.

The HyperSal and Albuterol take at least 20 minutes. Next comes the Pulmozyme, that's 15 minutes, then 30 minutes of her Vest treatments, then her Tobi. Tobi takes another 20 minutes.

Again, it doesn't seem that bad looking at it. However, have you ever tried to keep a 4 year old on task for that long? She just wants to play....real play....uninhibited, unencumbered, full out masks, no vests, no craziness....its hard.

I would love to give in to her sometimes and just skip one, cut it in half....but I cant. My habits now are her habits later. If I show her now that her treatments don't have to stop her way of life, that they can be worked into her life, then maybe, just maybe she will learn that lesson early.

My hope for Natalie is that she lives with this disease/condition/disorder, however you like to define it, even for her to live in spite of it would be good for me. I don't want her to have Cystic Fibrosis and be a little girl. I want her to be a little girl who happens to have Cystic Fibrosis....if that makes any sense. I don't want her to define herself starting with CF.....I want that to be the last thing anyone ever says about her.....She will be smart, fun loving, pleasant, kind, funny, strong.....and she has CF. Don't get me wrong. I am not downplaying the seriousness of this disease, nor the struggles that come with it....I live it. I sleep with it. I wake with it. I just want her to lay the burden of worry on me, and be a little girl.