"Everyone needs a place to call their own"

Wednesday, September 24, 2014

One, two, three.....

Social media is so amazing for so many things. Keeping in touch with friends and family, promoting your business, and making this big world feel a little smaller. 
When you're a stay at home mama of three little ones, one of which is homeschooled its especially awesome to say "World I'm here!" 
Before Facebook I didn't really "know" anyone with cystic fibrosis. It has been huge for me to connect with other parents and people living with CF. I learn things I didn't know, diagnose problems before doctors can at times through question and answer forums I'm fortunate enough to have access to. 
There is only ONE difficult part of being connected to this community. It is watching names of children you've prayed for, adults you've looked at and immortalized come across your feed and read of their passing. It's a reminder that CF doesn't care the age, how compliant you are or how amazing of a human being they are. It just simply takes. 
Yesterday THREE people passed away. It is crazy to me that with all of the advancements in our world people are still losing their lives. 
It's something that you don't really move past. I can't put it out of my mind like most of my friends or family. I can hide it away in a corner but it always makes the journey back to the forefront of my mind. It's a part of this I can't get around. 
With everything in life I supose that's the way it is, a little give and take, good with the bad, sacrifice for pleasure....
I've been chosen to walk this path, to know these amazing souls and to have to watch them leave this world. I try to not look too far ahead when it comes to Ayla, live in the now and do our best to stay well. There are so many uncertainties in her future, I guess that's the way all good things are. If it wasn't a little bit scary you wouldn't know how worth it -it was. 

Thursday, September 18, 2014

Today's update

Ayla had a lung function test today. Her numbers were suprisingly good. Like better than they have been all year. Her dr is very pleased and is now looking at allergies and prescribing an inhaled steroid to add to her routine. This was an answer to prayer and a real shot in the arm for her weary mama. I went in expecting an admission and came out scratching my head. Thankful God keeps reminding me that no one (including me, in all of my triumphs and failures) is in control of Ayla's future but him.

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.


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.