"Everyone needs a place to call their own"

Tuesday, September 2, 2014

A Bitter taste of truth....

Ayla had a check up today at CF clinic. Here's the 4-1-1
Despite all she has going on things went as well as can be expected. She had lost 2 pounds since Aug 4 (which brought her BMI down to 33%) in CF patients they want the BMI to be at least 50% since we know weight directly affects lung function). I'm not sure if it's increased activity or illness that's causing the loss, her appetite has been normal. 
She sounded pretty good when the doc listened to her take big breaths. Her lung function plummeted last fall when she was hospitalized for Mono and other infections and has never recovered. We talked about reasons for that, could have been permanent damage done to her lungs as an infant when she was FTT (failure to thrive) since we know
Weight affects lung function and she struggled for two months to put on ounces it could have affected "the generations" of airways that were being formed (as the Dr stated). Another reason could have been permanent damage from last falls illnesses. 
The Dr was on the fence about admitting her. None of us like the trend we are seeing with her and we need to stop this and gain some ground back. So she ordered a CT to compare it to last falls and go from there.
Shortly after the scan the Dr called to report to us. She said that it appeared "pretty good" some of the inflammation and issues that were present in 2013 had resolved themselves. BUT what she did see was 3-4 airways with bronchestatis.

http://en.m.wikipedia.org/wiki/Bronchiectasis

Bronchestasis is basically the scarring of airways, most people with CF end up with this but at Ayla's age it's "early" to show. CF is a progressive disease and there is no fixing bronchestasis. Once it starts it's likely to continue.

How do I feel about it?
Well pretty crappy. Ayla appears healthy and happy, exercise is good for her lungs but too much activity causes weight loss. I was praying not to get admitted but to be told there is nothing we can do if we admit her right now is more frightening for me. I don't get a clear picture of her health without traveling 4 hours for invasive tests. CF is peculiar, it hides and when you think you have a handle on it -it punches you in the gut. 
I can't control this, I'm at the mercy of god and his plan. A trip without a map makes it hard to travel. 
The last year we have been battling to get back what we lost and today we found that on top of being unsuccessful we have hit another dreaded CF milestone. 
I know that the impossible gives God the room to work and get the glory but I feel like I'm gambling with my kid. My most precious possession. I know that's what faith is, I'm always learning about faith. And sometimes I suck at it. I can say the right words but when it comes down to life or death for your kid you don't want "chance" you want "certainties."
I always felt like CF would be a part of her but not begin to affect her as early as it has. I don't know what the plan is God but I'm after quality of life and happiness for her. I know that he is too and in his own way he is working. Even though I can't feel it today his mercies are new every morning. 
I'm counting on that for September 3rd God. 
I am a "plan person" I need an attack plan and accepting this for Ayla is just foreign to me. Don't get me wrong, her Dr is amazing. And she is aggressive and "goes hard" against CF. She gives it to me straight and I trust her. This is just not something you can sugar coat, it's a bitter pill and it's not going down easily. 

Please pray that we find a way to reverse what's been done and to prevent this illness from taking away her spirit that I love so much. 

Friday, August 29, 2014

"I have CF, no biggie"

We recently moved to a new neighborhood. Ayla is so excited to meet new friends. Yesterday she and Larry were outside and so were our neighbors. They have two girls. They played and Ayla was so excited. She came inside and told me: "I told her mom what I have, but she didn't know what I was talking about."
Me: "what you have?"
Ayla: "you know cystic fibrosis?"
Me: "oh, yea? What did she say?"
Ayla: "she just said what's that? And I said oh you know I do my jacket and take enzymes and stuff"
Me: "yea we will have to tell her about it sometime, huh?"
I wanted to cry for a second and I'm not sure why. I don't know if i could have been more proud of my kid than that very moment. 
To me Cystic Fibrosis runs my life at times and feels like it's all consuming. But to her she's like: "oh yea you know it's this thing I deal with but I'm still awesome"
I'll gladly take the heat for you babe, as long as you'll let me! 

Want to learn more about CF? Visit www.cff.org and see how awesome she is!

Monday, August 4, 2014

A rock and a hard place....

I have felt something was "off" with Ayla for quite sometime now. As we're driving home today thoughts are flooding my mind:
-Can we make it through another 2 week admit?
-I can't not be there for Autumn and Amelia.
-This is the third time in 11 months
-she's only 7, what does 8,9,10.....look like?
-we will adjust
-she still hasn't mentally recovered from the last year
-will she become depressed?
-will I become depressed?
-is there something more I should be doing?
-colonized??
We put Ayla's health at the forefront of our minds, every decision is filtered through CF.  We are compliant, we do what we're told...and still CF is winning. 
If we are admitted how hard that will be? If we are not admitted does that mean we accept this cough and this decline in overall health as our "baseline?" NO!
I pray every night for all my family, my children especially. This is so much harder than I expected, although I never expected any of this. 
Today while we were in the pre-op area a little boy was there, couldn't have been but 3 or 4. He was a few beds down, with his sweet little face he gave us a big smile on the way up. He had lost his hair and it was clear his fight was cancer. Things like this are so senseless to me. Although I can't see what's going on in his life, who his persevering smile is affecting. His parents filed in with a big "hope binder" carefully reading his chart and doing everything they can to just get him better. He had an iv placed and his cries were haunting, Ayla was affected. She knew his pain and covered her ears. Next to him lay an inmate with shackles on his feet and his only visitors were correction officers. We were all there together, the innocent and the guilty. It didn't matter who was who, disease doesn't care. I couldn't help but say like I have so many times. "Is this really happening?" 
We then talked to Ayla about how lucky we are to have this medical care when we need it. It's so hard at times to see the positives and have to point then out and sell it to your little ones.
Ayla wasn't feeling well on the way home, I could see behind those eyes. She was afraid. She was upset "to be there again" and I am too. 
Your grateful but also scared, a definite rock and a hard place....

Monday, June 16, 2014

Where does my hope come from?

Over the last few days there has been negative press regarding the corrector-combo drug we have all hung our hats on for the last 7 years. This is not a cure but if successful could extend Ayla's life. 
Each time I see a new article or see the stock owned by Vertex Pharmaceuticals drop or being sold off in large quantities my heart drops and my anxieties rise. 
I am reminded to ask myself, "Where does my hope come from?" Is it in man or in God?
I know I have faith and hope in God. I know what I believe to be true for Ayla's future.....but I also know the lives that are being lost daily....and all of us in the CF community are fighting tooth and nail to keep our kids healthy and preserve lung function while in waiting...and now...we wait some more...
So today I'm mad. Tomorrow I'll have faith for the next day....and keep waiting....

Saturday, May 31, 2014

The worst kind of heartache....

Tonight seemed like any other night, Ayla and I had just made "Not Yo Mamas Banana Pudding" together and it was time for treatments. She walked over slowly....and said she wanted to be normal and not have CF. Those words always catch me off guard and take my breath away. I told her I understand but what's normal anyhow!? She dragged herself over to her treatment center and I could feel her welling up inside. I put down the dishes and went over to her and got to her just before she lost it. I got down on the floor with her and that's where we stayed. She was hurting so....."why don't I have any cf friends?" "Why am I always sick?" "I don't wanna drive hundreds of miles to the dr" "I don't want to go in the hospital again" "I don't want to do this jacket all the time" 
My mind was racing, what do you say to a child who is different to make them feel like they are not? How do justify the need for dr's, treatments and hospitals without being insensitive to the fact that is SUcKs! 
I felt myself pray, and say "I can't do this god" 
We prayed, we cried, we read her life verse in the bible (Isaiah 61) I asked if she wanted to write in her "angry journal" she said she did. So we started the treatment and she began....I sat across from her trying to compose myself. 
I was just watching her write throigh tear stained pages, I've never really seen her upset for this amount of time. I went back over to her....I explained that so many have struggles, we have our own...she is normal she can do anything she wants. Talked to her about fighting for a cure and what that could mean for her. Talked about hope and finding it always. She desperately wants a friend to talk with..I told her how many people in the world have cf. She can now understand numbers and place value do she seemed to be pacified by that. Ofcourse she apoligized for making me cry, she is such an angel. 
I never imagined I would be living the life I am. Never imagined I'd be fighting for my child's life. Never imagined her pain would be from my genetic makeup. I had never heard of cf when I had her. Never knew a soul who dealt with it. And as the years went by I became familiarized with the medical side (which is no walk in the park) but the layers that are being revealed to me as we age are often more than I can bear. I read a blog today about giving it to god. I could never bear it on my own. I pray for stength bc I am weary lord. I know he helps me to say the right things because she often feels better after we have it out. But I am left feeling like I battled it out and lost all my company-men and am left alone to deal and pick up the peices. I know it's not true, I have so many to help me through. But just as Ayla feels no one really gets it. I am with her...this is our bond, the one we never asked for but as special as they come.....

Wednesday, May 28, 2014

Life is hard

There are days that make the others
Worth it. There are days that you can't wait to see end. Those days for me usually are filled with thoughts of the unknown...questioning God's plan and why I am who I am.
Seems like so much of this life is filled with pain. People are losing people they love every day, some having lived long fulfilled lives and others fires were snubbed out to soon.
I ask myself why should you be any different? Because I'm a believer I should be without pain. I used to believe this lie. I know that life will be hard I will struggle to get through it.
I'll try to look in my daughters eyes and just see beauty instead of sadness. I'll try to be sensitive to others struggles and not compare them to my own. I'll try to be ok with the mother, wife, daughter, person that I am instead of feeling guilty. 
I take heart in knowing that I have my god my higher power to call on when I am low. When the days turn to weeks or my load is much to bear...
I know that the power to change it all is in his hands. I also have seem that his time is better than mine. Knowing these lessons hasn't made it any easier to wait on him. 
My miracle, my one wish isn't to have a million dollars or sing on the biggest stage. It's healing, true healing for Ayla. A life not stifled by disease and heartache. For all my children to outlive me...and be happy and be in love. 
Lately there are so many reminders of what cf can do to us, what it steals from us...its so hard to think clearly and positively. 
Most of the attacks on our lives come before our greatest triumph right?! I sure hope in the coming weeks, months, years we have some good news to report....this momma needs a breakthrough....

Wednesday, May 21, 2014

So I felt like writing today.......

Hospital admissions are a lot like a mutual breakup. Your glad to see them go but still learned a lot from the experience. This last admission was not a tune up so it was different but still had it's challenges.
Anytime you put a 7 year old in a hospital and expose her to numerous tests and procedures as a mom you know your in for heartache. But with CF its a necessary evil and one that gets more frequent as they age. 
It's hard for me to keep those thoughts out of my mind, you know the kind:
-have our best years passed us by?
-what will her future look like?
-when will she know what she's dealing with?
This stay we learned that Ayla is doing very well, she basically got a full work up. Ultrasound, EKG, chest xray, bronch, ENT check up, and pft...and all of these tests were normal. Her liver and pancreas looked perfect which are major concerns. Her Dr. Is still concerned with the amount of illness' she's had this past year, therefore she is recommending homeschool again. For me this is pretty scary. I feel like I'm unable to do all that's required of me at times. I want my kids to have the best of everything and homeschool is quite challenging. 
I know I will make it work, and figure out what's right for us. But it's a daunting task.
During our stay I spent some time in ICU since that's where the bronch'd over the weekend. Wow, that is a hard place to be as a parent. I could roam the halls hearing the vest's shaking the CF patients lungs. I tried to keep my head down but you want to look and it's so hard to see these children lying there, almost lifeless. One appeared to be post transplant. 
Another instance when we went to have her lung function test done, we had to wait until the room was clear. A teen came out in a wheel chair her iv pole in tow and face masked. I knew she had cf too. She didn't make eye contact. She seemed so sad. She had brown hair, I couldn't help but wonder if this was The grown version of Ayla. 
It became overwhelming and I excused myself to the bathroom so I could "lose it" in private. In those instances I can only pray for help. I need strength and I can't make it through on my own. After a few minutes I went out to cheer Ayla on for her lung function test. She needs me to be strong, and I need her to be a kid. Two things that in this life are far harder to come by than I ever imagined....