Friday, April 30, 2010

Oil Spill and the "B" word

So you can't really turn on the TV without noticing the fact that there is a massive oil spill in the Gulf of Mexico, we are in Southeast Louisiana, this makes for a precarious situation. I woke up this morning to my back yard smelling like a diesel fueling station, I immediately made a call in to the clinic. They didn't seem to be too worried about it, but if i felt that i needed to leave, that i should...ugh! Of course they're going to put the burden on me to decide....anyways, thankfully with the rain the smell seemed to disperse in the late afternoon hours and not even a hint of the smell could be detected inside, so before we pack up and relocate, we're going to evaluate this situation a little further.

I am going into Twitter meltdown, I finally understand the uses of Twitter and how it can be useful, unfortunately I think that if i hear my Tweetdeck notification one more time, I'm going to lose it. So, much like my friend UnknownCystic, the volume is off at this time for my own good. *sigh* I'm exhausted and I haven't done anything more than normal...maybe its mental exhaustion, actually it has to be because like I said before, I haven't done anything more than normal.....

I have however found myself in uncharted territory. My 10 year old came home and told me that her stepmother called me "the B word" much as I don't care, I do care that the comment was made in front of my 10 year old. The woman could shout it from the rooftops for all I care, its not the first time me and that word have been said in combination, and God knows it certainly wont be the last. But not in front of the kids, jeez, restrain yourself a little. I did send her a text informing her of my displeasure, it was civil as I aim to take the high road. I am from a divorced family myself and know the horrors of people downing your "other" parent, whether they deserve it or not, it leaves holes, scars. Its an insult to your very being, pieces of you, where you came from, who you look like, who you may or may not act like. When you insult the "other" parent, you are insulting the child, whether you mean to or not. So to all of you "step" people out there, censor yourself. They're listening, always, they read your looks as well as any more for the children than satisfying your own selfish need to the end you will harm the children more than you will make yourself feel better, and you wont make the "other" parent feel bad at all.

Wednesday, April 28, 2010

Birthdays and sanity....

Yesterday was my first born's 10th birthday....10 years. I looked at the clock at 11:38 am and realized that she was 10 years and 9 minutes old and nearly fell apart. Ten years....I keep saying it over and over. I don't know where the time has gone. Ive spent so much of my time trying to make sure that she has what she needs, going to school, going to work, trying to keep her from the bad things in life, that sometimes I forget that she just wants me. I remember that feeling. I didn't care about clothes, shoes, or what I best memories were simply when i felt special, felt acknowledged, felt wanted. Ive resolved myself to making more of those moments for Caitlin. She deserves that, and more. The pictures above explain it better than I ever could, but my grandparents were a huge part of my life, and Caitlin's life as well. We all miss them dearly, but the void for Caitlin has been huge. Just as with every special occasion where balloons are involved, she had to send a balloon to them in heaven with a kills my soul every time, but I would never discourage her. Her faith is stronger than mine sometimes and I don't want her to ever second guess it.

Its hard to balance Caitlin's emotional needs with Natalie's medical needs. Its easy for Caitlin to get lost in the shuffle. Natalie is so unpredictable and into everything, Caitlin is responsible and low maintenance. Caitlin doesn't like to rock the boat, she wouldn't ask for anything that she wasn't offered....Natalie asks for everything and cries when she doesn't get three years into this whole having two children thing, Natalie having CF thing, having Mommy guilt thing, trying not to lose my mind thing, I'm still trying to work it out....but from what I hear, we all are :)

Friday, April 23, 2010

What is that? Haven't seen it in a while....

Its been a rather uneventful morning...made of the things that most mornings around here are made of....vest treatments and "trot little horsey" simultaneously, teeth brushing mixed with squeals of "I can do it all by myself, Mommy!", breakfast plates left full, fruit bowls left empty. We missed our morning bike ride due to the weather looking yucky, so we're stuck inside.

But lunch time came and went and what to my wondering eyes should appear? But an empty lunch plate, with more room in her tummy to spare :) So not only did she eat her lunch, but asked for more. YAY!!! Looking forward to more empty plates!

Tuesday, April 20, 2010

Periactin is back.....

So the pharmacy thing finally got sorted out, so Periactin is back on the menu. I have to start giving it to her again....I was having second thoughts about it because initially there was little to no change in her appetite, but after a while of going without it, I can definitely tell a difference, so here goes. Tonight the only real difference is that it knocked her out, I hate that part...luckily it wears off after a day or two....her weight falls off so quickly, plus with her being sick so much lately, I have to do everything in my power to make sure she is eating enough, and if this helps, then I'll take all of the help I can get.

A big shout out to all of the CF Mommies out there! Thanks for joining, Thanks for accepting/adding me. I have the sincere belief that there is power and knowledge in numbers. Working together I believe we can extend the lives of our children through networking our ideas, what works, what doesn't, and increase fundraising through awareness. Thanks to Breck for pulling us all together!

Natalie and I went to the park today while Caitlin was at dance class. I chased her around with the camera, as usual. The child loves to have her picture taken, and i am happy to oblige. She loves to swing, she says its like flying. I watched for a while, then took the camera and took pictures from every angle. I wanted to remember, I wanted to save the moment, her blonde hair blowing in her face, laughing as she was trying to swing high enough to kick me, her smile as she looked up at me. People can say what they want to about making sure that their child feels normal, but to me she will never be normal. I'm afraid, desperately afraid that I wont remember every moment, that her life will be short and I wont have every second to rewind and play over and over when she is gone. I want to remember. And if the time comes between now and then that (God willing) a cure is found, I still want to remember, that way I can show others what it was like before.....what a thought that is, to possibly have the ability to show someone what life was like BEFORE a cure for CF was found....*sigh* that's a lovely thought, I think I'll stop there and soak in the idea, no further thoughts needed for the night....

Monday, April 19, 2010

New layout for Conner.....

I'm sure the first thing you notice is my change in layout....maybe :) The red ribbons are for can visit his Mom by clicking here. Stop by and show Sarah some love and support, she and her family could use it right now. Love and prayers to all of them!

Spent the day recovering from my work marathon and chasing Natalie....that's nothing new. She is better, her cough is slowly becoming non existent so I'm pretty happy. Still fighting with the pharmacy...come to find out I have to have a new Rx every 6 months so my script on Natalie's Creon was invalid and had to be redone as well....they could have told me that LAST week....but that's alright. Not going to get excited about it.

I don't really have the energy to get excited about much. Its Monday....ugh! I know this is kinda half done, but I just felt the need to make an is uneventful right now, trying to focus on getting Natalie completely well, that's all, and that's okay with me.

My first born is going to be 10 soon.....10, ten, TEN....oh that makes me so sad...I don't know where the time has gone, I so wish I could do it over again, but as Sarah said in her last post, this is not a dress rehearsal....just one shot....make it a good well and best wishes ~Juli

Thursday, April 15, 2010

more videos i love....

The roller coaster of CF.....

I'm happy, I'm sad, I'm hopeful, I'm defeated, I'm determined, I'm overwhelmed.......and so goes the CF ride.

So lets see whats going on around here....I got my first Great Strides donation!!! I am SOOOO excited about that. It gives me a new resolve to get out there and find more people who are willing to give for others. I can't lie, I nearly fell off of the sofa, I screamed so loud that I woke up Justin who was sleeping on the sofa next to me...I couldnt help it, I had gotten so accustomed to seeing the same 0's every time I logged on....oh how that made me smile. Hopefully many more smiles to come before October.

On another note, Today Sarah goes on a unfathomable journey to discuss advanced directives, intubation, hospice....ugly ugly words when they are in regards to anyone, and atrocious when in regards to a little one. My heart is broken for her, I know that Ive said that before, but its true, I'm sad for her, I hurt for her, we're just praying that somewhere, something can be done....Also, Happy Belated Birthday to her little Conner. He turned 7 yesterday.

Then there is the whole pharmacy thing, its Thursday and I still don't have a refill for Natalie's Periactin. I called the nurse, she said she hadn't gotten anything, I called the pharmacy, they said they sent it, gave them the fax number again and they refaxed but then the nurse says that she wants to send a whole new Rx....they're killing me. Sometimes I think technology will be the downfall of mankind...I mean what ever happened to picking up the phone and saying, "Hey, this patient needs this med, at this dose, at this frequency" and hanging up, so much quicker than what we're dealing with right now, I mean this is 3 days....Not that its a huge missing link in our medication regimen. Its absence is barely noticeable and her appetite remains the same...soooo right now my complaints are simply based on then maybe i shouldn't be complaining at all....ahhh the revelations and conclusions that come from typing out your thoughts :)

On a happier note, Emily from the Rock CF foundation tweeted that her pft's are up 20% since October after starting the Vertex Clinical Trials.....ohhhh the glorious high that comes with hearing news like that...the idea that my baby will have the opportunity to have such drugs as these....the hope that comes with news like that, the need to keep yourself grounded and realistic, just in case something goes wrong in the trials....but I just cant help but feeling fantastically hopeful....and then I think about Sarah....why cant her baby have it now? There goes that roller coaster thing I was talking about earlier...

So much to process, so little time.

Tuesday, April 13, 2010

Waiting on the world to change.....

When Natalie was diagnosed, it expanded my world immensely. Before Natalie, I lived in a world of me. Even though I had Caitlin, that was all that really mattered to me. Caitlin, me, my family and our bubble. I never thought past our problems, our fun, our everything....I didn't need to. Natalie changed all of that. What a sad realization it is that it takes a catastrophic diagnosis to bring someone out of the world of me and into a place where what happens to others truly, deeply, and personally affects them. Its not always fun, its not always happy, but regardless, the CF community rises, falls, laughs, and cries as one...what a beautiful thing it is. Today we're wrapping our arms around Sarah and Conner and their entire family....praying they find answers in Colorado, praying for them to find some peace during this unimaginable time.....

I find myself hopeful for a cure, not just regular hopeful....confidently hopeful, dangerously hopeful. I read up on Vertex and stare at that stupid line graph, praying that it would just go a little bit farther, wishing that it was already approved and at market level, wishing that the world was different for Natalie, for Conner, for Josh, for Ronnie, for Piper and the list goes on and on and on....70,000 times over. Until then, we are left with looking on the bright side, until then, we are left with the hope and reassurance that we find in each other.

And how awesome are we? Pretty gosh darned awesome! You can click on Ronnie's name above and read how the CL community raised $10,000 for CF in 31 minutes...yep, you heard it right, 31 minutes....with parents, cysters, and fibros that are sooo proactive in their own care, so involved in their own fundraising, so enthusiastic and ready to help where they can we fail? The idea of failure is inconceivable and preposterous...We CAN find a cure, and we WILL find it. I just hope its soon.

Natalie is doing alright. Still has a cough, no fever though. Her Pediatrician seems to think its allergies...I'm just ready for it to go away. On another note, Periactin seems to be a huge fail.....we missed 2 doses related to the pharmacy being unable to obtain authorization from the Dr for a refill.....not that it matters anyway because her appetite is still the same...ugh! Natalie has been a huge life lesson for me, a huge revelation in the serious need for meds. Personally, I only take ibuprofen if I just cant take a headache anymore and have finally given in and started to take some Tums when i feel like I'm going to start breathing fire from acid the idea that i may have been giving Natalie a useless medication irks me ....we'll just see how it goes until the script is refilled and go from there.

About to start my next big push for fundraising, my first round was a blubbering failure as evidenced by the big huge 0's on my Great Strides web site. Our walk isn't until October, so I have time. I'm just a little thrown off from the lack of enthusiasm from my first round. Guess I'm going to have to hit it that much harder this time. Anyways....I'm starting to ramble. Hope everyone is having a great week! Be well and Best wishes! ~Juli

Wednesday, April 7, 2010

Taco Night and Giving in to myself.....

Its Wednesday night and that can only mean one thing....its TACO NIGHT!!! With all of the changes with the girls, their lives, their schedules, nearly two years ago now, Caitlin and I deemed Wednesday night to be "Ghost Hunters and Taco Night". Every Wednesday night we have Tacos....and sometimes we watch Ghost Hunters but that part of the tradition has quickly wavered due to Natalie getting older, staying up later, and understanding what she is watching and Caitlin getting tired of watching reruns (the new episodes don't come on until late)....But regardless of the waning of the specifics, we enjoy our mini tradition. Caitlin looks forward to it and I never have to wonder what I'm going to cook for that one night per week :)

Its been a good day, Natalie has finally gone a full 24 hours without having fever and Caitlin takes her last dose of antibiotics tomorrow. Yay!

Ive been wandering the web....hanging out on FB more than I'd like to admit, browsing through CysticLife to see if anyone has anything going on that I can relate to or help with. It makes me feel good when I can help someone else. However lately, I don't seem to have much to contribute. I notice that I go through phases like this, I lose my "fight", my inner "umph", as I like to say, "my get up and go, got up and went" :) There are times when I just don't feel like I'm the right person for this...there has to be some mistake, I don't see myself as strong, I don't see myself as much more than just doing what I have to do....sometimes I want to hide, sometimes I want to run, sometimes I would like to sleep....for a really really long time.....but that's just me being selfish. I have selfish moments, I am female, I am not superwoman, I don't have a nanny....I want to go to the gym, I would love a mani/pedi, I would love to go take a bath whenever I want to and not just when I can sneak one in, I would love a hair cut, I would love to go shopping and buy something other than a princess backpack or groceries...and I could do all of that, I suppose. But the truth is that focusing on myself in any way would take time away from focusing on my children. A narrow point of view on the topic, I admit, but I cant do it, I cannot physically bring myself to focus on anything other than my children. Justin brings up the idea of getting a babysitter to go out for a night and I become offended, offended that he would want to ship off the girls to their grandparents to *gasp*...have are you serious?? We're parents....are we allowed to do that?? I haven't fully accepted this concept, and I'm not a big fan of the mommy guilt that goes along with it. I know that we need it, everyone needs a moment, heck I need a moment, he is simply verbalizing things that I would never say out loud, my pride would never allow me to ask for help....heck, I think I would keep up the "I'm great, no really" facade even if I were taking my last breath....unfortunately my pride lends itself to people thinking I'm superwoman, which lends itself to me being the hero and rarely the one being rescued, which feeds into my codependency....its a vicious, vicious cycle, but hey, if you cant laugh at yourself and critique yourself, the who can? :)This blog is my guilty pleasure, I write it late at night, after the girls are in bed, after Justin is in bed, when I can sit and type and listen to Natalie breathe, watch what I want to watch on TV, sneak a Reese's Peanut Butter Egg from the girls' Easter baskets, and just one needs anything for the moment...and that's okay with step, a night out....maybe....we'll see.

Tuesday, April 6, 2010

Videos that I love......more to come soon!

Explanation of the 2nd video...


I love Josh! He always finds the flip side :)

Monday, April 5, 2010

ER trips and recovery....

We made a late night trip to the ER Friday. Initially the trip was for Caitlin, she woke up having intense ear pain and with her history of ear infections and their severity, I didn't hesitate to go and try to get her some antibiotics. About an hour into sitting in the waiting room with Caitlin, Justin called to inform me that Natalie had spiked a really high temp. Seeing as how I was to be at work at 7am, I told him to go ahead and bring her too....that's right, I used the ER for a clinic (ER people hate that) but I had no choice, they needed help and I don't know of any after hours clinics around here that are open at 11:00 pm, they all close at 9 pm. That being said, I don't expect too much from ER MD's, its late, they're tired, they don't know my child, they have no medical history except what I supply...its a difficult situation to be in, I understand that. HOWEVER, this ER MD apparently had already written Natalie off before he even came into the room, he listened to her, told me to give her Tylenol and Motrin, force fluids, and follow up with her primary on this is all AFTER I had explained her Vest treatments, her previous chest xrays, and went through a pretty thorough medical history....the only thing that never came out of my mouth is "She has Cystic Fibrosis." I didn't find it necessary, it was in the chart, I watched the nurse write it along with her current medication list...anyway, so to get to the point he gave me the "you're just a mom trying to find something wrong with your kid" discharge instructions, he left the room to get my discharge papers to sign, I didn't want to argue with him seeing as how Natalie had just finished a round of Azithromycin and Prednisone (which he was also told) I'm not a huge fan of the over use of antibiotics either, so I didn't complain. I noticed that he was taking a terribly long time to get back to the room (the nurse station was right in front of our room) and when he walked back into the room he has this totally confused look on his face and asks "She has Cystic Fibrosis??" Ummm yeah, did you read? Did you listen? The answer to that is, apparently not. Then all of a sudden his tune has changed dramatically, he informs me that he has been on the phone with the MD's at Children's Hospital in New Orleans and that he's going to give her Augmentin and blah, blah, blah....I couldn't help but think, oh so NOW he's concerned. Ive gone over this in my head several times and I cant seem to find the right answer, I mean if she didn't have CF, would she have been given the appropriate treatment? or is it that because she has CF she is being over treated? I was disturbed...I still am, I don't know what to think, except I'm glad that our ER trips are few and far between...So after 4 hours, running between 2 rooms (they wouldn't let me put both children in the same room) going back and forth with the doctor...we got home....3 at 7am....for 16 hours....ouch! It was was stupid....but it was done and done correctly. Thank God!

The girls are getting better...Caitlin is back in full swing and Natalie is trying....poor little thing has been sick since January. She is such a trooper though, she smiles, nods, and takes it all in stride....eventually :)

It was one of those days again today, spring in Southeast Louisiana is a beautiful thing. The doors were wide open, and I shooed the girls outdoors, after all we topped 80 degrees (woot!) Caitlin was out of school, Natalie was feeling okay, so we spent the afternoon soaking up some vitamin D, working our muscles, and stretching those air bags :) Bike riding down our street, laying out on beach towels, delayed Easter egg hunts, it was a good time. We're slowly but surely on the mend.

Friday, April 2, 2010

easter eggs and new lungs......

An eventful day it has been, I would be remiss if I didnt begin this blog by saying that we are drowning in prayer at this time that Piper from A Matter of Life and Breath , her family, her donor and her donor family are surrounded by the love of God, that the surgeons hands are guided by the stregnth and wisdom of God, and that Piper is well, happy, healthy, and able to breathe deeply once this is over with. I would be lying if I said that every transplant story, every achievement of a CFer, didnt affect me. It does, very personally. I see them as possible outcomes for my little one and I sit back, sometimes rather quietly, but am cheering just the same, praying just as hard, worrying as much as if I knew them in person. I had butterflies today, waiting to hear news about Piper. When her facebook and blog updated, I yelled across the house to my fiance, "Honey, looks like she's going to get them this time!"...and he knows what Im talking about. Ronnie from Run sickboy Runkeeps me looking ahead, looking forward to things (love, marriage)It sounds selfish, but I need them to succeed, it gives me hope. At one time I wasnt sure Natalie would get the chance to do the things Ronnie has done, Piper has done, I still dont know that she will, but I have hope. That's the amazing thing about the CF community, though I am realitively new to the fight (3 1/2 years), I have yet to meet someone that had no compassion, or was rude, I have yet to meet someone that wasnt all about succeeding by any means, nor someone who didnt want to share their story. How blessed we all are to have each other. What a wonderful time of year to look at our blessings, our new way of CF life that we are privy to only because of the sacrafice of others, those we have lost who are never very far from our thoughts.

I didnt mean for this to start out so heavy, its a season of celebration, of life, of renewal, and its a time for Easter eggs! Caitlin and Natalie and I decorated eggs today. Caitlin and her usual perfectionist approach didnt want anything to do with the eggs that had even a hairline fracture, Natalie grabbed onto her first egg with an uncanny attachment and didnt let go. They had a good time, got messy, pictures to come soon :) Happy Easter to everyone!!

This entry was cut short related to a unplanned trip to the ER last night (most of them are :) but Im going to go ahead and post it, better late than never :)

schedules, timing, and being just a

Normally you find my posts to be the random rantings of a tired Mom, they're usually posted around 1 am....not today. Today my schedule is all messed up, but for good reason, so I'll just leave it at that. Today instead of writing to you from the glare of a midnight computer screen, I write in the glare of the morning sun. A different perspective, to say the least.

Natalie has started her weird eating habits again. Her favorite foods are broccoli with no cheese, no butter and chicken broth.....(she's eating off of my plate, not hers) not exactly the best foods to help maintain her weight, but she just doesn't want what is offered to her anymore, i think shes bored with her food. She has gone on another milk hiatus. The only dairy product she will put in her mouth is either cheese cubes or ice cream, so I'm kinda working the ice cream angle. Scandishakes have been refused to the point that I'm wasting money and she will only eat the breading off of her chicken nuggets....*sigh*

We've been working with a cough for the past week or so, she remains afebrile with clear lungs (according to my humble assessment and my humble stethoscope) so I'm pretty sure that its just her seasonal allergies throwing a fit, that being said, being a nurse does not make you a doctor, so we will be making a trip to the clinic next week. Her vest treatments are going fabulously and she actually fell asleep doing a treatment last night! Woot!

Today Caitlin comes home, this makes me happy. Its wonderful to have both of my girls in the same place at the same time, even though they fight like cats and dogs at times. You would think that since they are nearly 7 years apart that they should have nothing in common, therefore nothing to fight about....wrong. Guess being female is enough in common to illicit an argument....

However, today we will work through it, today we are going to have a good day. As Ive mentioned before, I procrastinate, so we are off to get Caitlin's Easter dress, I already have her shoes and Natalie's shoes and dress, which is quite an accomplishment, so we're just going to build from there, have some fun, shop a little, and enjoy each other's company.