Wednesday, June 16, 2010

The only sure thing in life is that things will change.....

I don't want to make this post a depressing one, Natalie is fine....we're just starting down a new path.

Today was her clinic appointment. She's lost weight. That is not a really huge shocker seeing as how she was in the 70th percentile last visit. Natalie's weight is much like a roller coaster, it has its ups and downs....we just do the best we can. She hasnt fallen far, just into the 60th percentile, so we have 3 months to make it up before they start to intervene. Our clinic is real big on keeping her weight up, so we shall see.

Natalie's O2 sats (oxygen saturation) have been on a steady and progressive decline since January. January. January. I get so sick of saying that month, of reliving that month, but its when all hell started to break loose....a month I'll remember for life, a month when everything started to change. Anyways. Seeing as how there is a noted difference from January to March to June, we're starting on Pulmozyme. Im crushed. Not because I dont want to give her the medication, but because Ive spent the past 3 1/2 years bargaining with myself to make it alright in my head, "well at least she doesnt have to....(fill in the blank)...." Now those days are over. No more denial for me. We are finally, totally, completely CF patients, the vest, the nebulizers, the enzymes, the whole shebang. Oh how I wish that werent the case.

Natalie's doctor can see the difference in me. He looked at me, cocked his head sideways and says, "You look tired". This is simply a nice way of saying, "You look like hell, like you've aged 10 years in the past 3 months". I cant argue with him. I simply respond, "yeah, a little, but Im okay." Okay, fine, great, wonderful, fabulous, I am AWESOME....just ask me.....(that was a tad sarcastic....okay maybe a lot sarcastic) He just smiles, looks at me from the top of his glasses, pats me on the leg and says "Its okay Mom, she's doing just fine". Ive never been a huge fan of anti-anxiety meds, actually have been more of a "heal yourself" kinda girl when it came to such, but today, today I would have taken something if it were prescribed to me.

I must admit, however, there was a different feel to the clinic today. I dont know if they were just trying to make me feel better or if VX-770 and VX-809 are finally making their way into common knowledge or what the deal is but I had two separate people saying "just hold on Juli, it wont be long....." It was awkward to hear from the RT, from the RN. Ive said it to myself tons of times, sat in front of the Vertex page and cried....trying to move that stupid purple line with my mind....but to hear the hope in their voices, it was kinda surreal. I cant say that it has made me feel any better my Maw-Maw used to say, Im from Missouri, cant tell me anything, have to show me :) (for those who dont know, Missouri is called the "show me"
state) Oh and if you dont know about the Vertex pipeline, there's a link on this side of my blog. ------>>>> It shows their progress and how close to availability they are.

Got a call from my local CF chapter....great, they know I exist :) j/k....I told the girl that my motivation comes in waves, it does. Ive been trying, Im going to get out there again, I am....I just need a minute....or two, or three. Its hard to be a warrior mommy ALL the time, sometimes I just dont want to be seen or heard, sometimes I just want to be normal. I hope that doesnt sound selfish, but sometimes I need it, we all do.

Anyways. Sorry for my absence and lack of photographic "pick me ups" but I am still chained to the Mac, therefore not the happiest blogger on the block. Will try to stay in the loop more, I know Ive been slacking....but it is Summer....that means making the most of my time with Caitlin, with both of them.

I wish all of you peace this evening. lots of love! ~j


  1. What a great post. I wish I had some great advice for you. I do think you hit the nail on the head. Great stuff is coming. Patience.

    The funny thing about CF is that you may think you're starting a new path, but sometimes it's not a long path and a better one comes along quickly.

    Best to you and the family.

  2. Thanks for hanging with me :) always nice to have commentary :) my best and much love to you and the fam! ~Juli

  3. Just rereading this post for the fourth time. It's really well-written and touching. Is Natalie taking hypertonic saline? Just curious. Not giving advice, as you know. Just wondering if docs put her on it. I'm not sure if you follow @seanset or not. He's a great father of three girls, two with cf. Might be a good resource about these stages that occur. Please excuse me if I'm intruding. Just want best for all of you and wish I could do more to help. I know good medicines are on the way.

  4. Hey there! Sorry it took me a min to get back to you. No HTS for us yet, they're barely wanting to give her the pulmozyme, the RT said they try to wait until they are at least 6....but they told me that a couple of years ago, they may just take it on a case by case basis. Thanks for the compliment, makes me feel good.