Wednesday, March 21

Culture Results....

It's back.....PSEUDO.
It's brought us all down, thrown our emotions all over the place, and has conveniently found a place to hide inside of our little girl's body for a LONG time. It's creates that possibility that it could further damage her lungs over the long term if it doesn't stay managed....

It's emotional. It's frustrating. It's difficult to accept. But it's still there.....

This beast has decided that it doesn't want to leave. Madeline is now "colonized".  This meaning that the pseudo is here to stay and it is not likely that she will ever get rid of it completely. The best option we have is to manage it. (Apparently it can go into dormancy through negative cultures but still be present' like last culture).  Madeline's pseudo will be managed with inhaled TOBI (inhaled) every other month adding 30 minutes extra to her already hour long treatments both morning and night.(like we have done) Through 3 different inhaled antibiotics, oral antibiotics, and IV antibiotics (2 week hospital admission) my little girl has fought so hard and bravely against this nasty monster for 2 years with relentless medications, procedures, and antibiotics to kill it off....

But the one thing that keeps us going through all of this is that she looks and acts healthy.

She has maintained a great weight (which is very hard to do if you have CF). Most cfers have difficulty keeping enough weight on since they require countless pills every time they eat to help them absorb the calories and fat from their food.

Her BMI (body mass index )has remained in the 70-80's range for the past 2 years since culturing pseudo.
She is a heavy, chubby three year old at 36 pounds. Her weight has never been affected from Pseudo.
She shows no signs or symptoms of Pseudo being in her body and NEVER has. She has no cough. She can run for minutes on end without stopping to catch her breath (often something cfers have a hard time doing-especially if they are culturing bugs for years).

She has an amazing amount of energy- that I cannot even keep up with and always has. She rarely stops to rest and skips naps at times. She loves to run through shopping malls, and Targets. Her favorite hobby is jumping. She is simply unstoppable.

Her lungs look amazing in the pictures they took from the bronch while she was hospitalized. They have not found any pockets of significant mucous or infection. Her lungs have always sounded completely clear in the last two years. She has never show wheezing or been out of breath.

In fact, no would be able to tell she has Cystic Fibrosis from the outside. Everyone continues to raise their eyebrows in disbelief that she is flourishing despite this beast....

She has surpassed all of the goals that most cfers set to achieve.
Good weight.
Good energy.
Good looking/sounding lungs.

And if anyone thinks that this Psuedo has taken hold of her...they are wrong.
In fact, it is quite the opposite.

Pseudo may still be making it's presence known.   It may be there to stay. But it will NOT win.
And if my little fighter has anything to do with this battle, she will do her best to keep it that way.

Someday....she won't have to fight so hard. Someday she may have a cure. Please donate today.


  1. Argh! I agree with you - just believe in what you see and don't focus on what you can't change. She is doing so great!

  2. Not what I was hoping to hear, BUT Sandy you guys have an amazing attitude! Keep focusing on all the positives of M's health. You are such a good and hard working mommy...your positive attitude is why M is such a good little fighter. She is strong like her momma! Hugs to you and continual prayers.

  3. Love and prayer can do amazing things, they can help you overcome physical burdens. Sounds to me like she's telling pseudo who's boss. Keep fighting, Maddie (and Mommy and Daddy, too). Love you all! ~xoxo~

  4. Grrrr, PA! I am bummed to read this, but know that all of you have an amazing attitude to keep fighting. Love how you are focused on everything in your and Madeline's power. Keep fighting the good fight, sister. Every day. Our boys are the same way. These kids are special and they are my heros. Sending hugs and good things from the Salty Boys Crew.

  5. hugs to you. so frustrating, but you are right. pseudo has met a fighter and it will not win.

  6. Sandy, I am SOOOO sorry! You should have heard me reading your post. I was like saying outloud, "no no no!!" I know how much you wanted this Psuedo to be gone (we all do) and I know how devastating this result was to receive. You worked so hard for help rid it and it can feel like that was in vain. And yet, you can also live on knowing you did everything you could for your girl to be Psuedo free and it just wasn't going to happen, for now at least. Hang in there, girl. You are a fighter of a Momma!

  7. Oh, Sandy, I am so so sorry, your post breaks my heart! I am so glad Madeline is still doing so well, she is a tough little cookie and PA will not stand in her way! I can only imagine how you are feeling right now, but please know you are a great Mom, and you did and do everything right with her care. Stay strong and remember as you say, just how well she is doing. Big higs to you all! Natalie x

  8. She is courageous and strong little girl with a courageous and strong Mom & Dad, she will NOT let that beast WIN!!! Love & Hugs, K


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