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.


  1. I totally agree with you when you say your habits now are her habits later, we have tried to let the girls have as normal a childhood as they can and try not to let CF control us. Treatments have come on so far since Lauren was born and make the day to day life of a CFer so much easier. Lauren now uses the inhaled powder version of Tobi and because you don't need a Neb to take it the time for administering it is less than 5mins, it should be available fully early next year.
    I hope you and the girls are settled into your new home and have a fab christmas. :-)

  2. Hi Sean! Hope we can take advantage of some of the new things coming in the new year. I think its going to be an exciting year for all cf patients! Thanks for the Christmas wishes, same to you. All of my best to you and your girls. ~j