Sunday, February 3

Clinic Day

We stopped our endless cycle of one month on, one month off of TOBI a few days ago. This cycle will continue indefinitely like it has for the past year or so due to the effects of Pseudo never wanting to actually leave. It's a constant frustration but clinic days like these prove that Pseudo has nothing on us and Madeline's well being right now....

Registration and waiting to be called to nurses station for stats check
  Friday was Cf Clinic day. We started with the usual nurses station. They get a few numbers. Madeline weighs in at the scale, gets her height measured, and her oxygen levels. She is a true trooper doing everything that that was asked of her and acted much older than 3.

height check at nurses station

We then were ushered into CF clinic and a room to wait for the specialists, head nurse, doctor, and pharmacist to all talk about Madeline during her clinic visit. It always tends to be a fairly lengthy appointment since we do end up talking and discussing cf with many different  specialists.

Doing ipad with Daddy while waiting for more specialist to talk with at clinic
 We were able to talk to the head nurse and pharmacist about a new nebulizer system that will help minimize the amount of time it takes to  do all of Madeline's inhaled medicines. Our 2 hour treatment window of inhaled meds twice per day could be greatly reduced. (And after explaining that we were starting Madeline in school this fall, we were thinking this would be a great device to have to simply get us out the door quicker in the mornings.

We were very excited to ask about the eRapid Nebulizer System that allows CF patients to do all the same inhaled medicines we are currently doing in about half the time frame. We realized at our CF Clinics Family Education Day (after talking to the CF Services Pharmacy Rep), that we already own part of this machine that was given to us years ago for a different use. The only part of the eRapid that we needed was the handset/mouthpiece which is relatively inexpensive to purchase if our insurance does not cover it. Our clinic was very supportive and is in the process of working to get this nebulizer system in our hands. You can read all about the eRapid here.

Madeline talking to Dr P while she is listening to her lungs.

Dr P was able to listen to Madeline's lungs, check her ears, check her gut, and go over a few questions with us while Madeline showed her  SUPER brave side. She pretty much took over her own appointment asking if the doctor wanted to look in her ears, get a throat swab/culture, etc. Madeline asked if she could sit on the exam table. We were blown away with how incredibly brave and confident she was being only 3 and having gone through the scary sides of hospitalizations, clinic, and unpredictable medical staff. We were so proud!

We finished off the clinic appointment with a BMI of 87 and a weight for age percentage of 92%. The doctor was very pleased with Madeline's growth, health, and BMI. We know that every great clinic visit is a celebration and,  we felt very fortunate that Madeline seems to be doing so well right now. There have been times where this wasn't the case with CF Clinic and we often remind ourselves that we have to enjoy these moments.

We headed out to a celebratory lunch at Arrundel Mills Mall


Hot dogs at the BW3's and a crown that says "Wild Winger!"

 Finally home. Daddy assembled her new toy while my little fighter pressed on with the same nebs to keep Cf under control.( Cause CF doesn't ever just stop and my fighter never stops fighting!)

And now we wait for the CF Clinics call next week about Madeline's throat culture.... It's more than likely that Pseudo will be on the culture -since it's been there for nearly 2 full years with no luck of getting rid of it (after a hospitalization, a variety of inhaled antibiotics, IVs,, and oral antibiotics. We also hope that no new bacteria has presented itself on her culture.)  It seems apparent that Pseudo has so little to do with Madeline's health right now. She is thriving, she is healthy, she is energetic, she has no cough, and she is happy. We are beyond happy  about the outcome of  this day and our brave, strong, and vibrant little girl! We are truly grateful. Thank you everyone who continues to keep up with Madeline's journey, her cf fight, and holds us in your thoughts We are so thankful.....


  1. Renee' BernardiFebruary 4, 2013 at 7:38 AM

    I LOVE to read your blog - my daughter is about a year younger than yours (she will be three in March) and it's nice to feel that "connection" when I read your blog. I actually read it with Reese often, she LOVES to look at all the pictures you post! It's very cute.
    I am so glad that Madeline is so STRONG and HEALTHY and such a fighter! GREAT role model for my little one!
    (SILLY QUESTION - where did you get Madeline's toy she is playing with while doing her treatments?? My daughter would LOVE IT!)

    1. HI Renee- THanks so much for your sweet comments. Do you have a blog? Would also love to follow your journey. We got Madeline's toy at a "books a million" book store. But, it is called "marble run" and i found a bunch on amazon here---->

    2. Thank you for the link! My older son has a marble run, but's it's HUGE!! And a bit too "old" for Reese. I have seen a few on that link that would be perfect for her.
      I actually don't have a blog :) and no Facebook. Hence my comments here for you!
      Thanks again for the help!

  2. I ran across your blog today and I am very excited to catch up! I have an 8 month old with CF and we are still figuring things out! Your daughter is precious!

  3. I happened to find your blog tonight and just wanted to tell you I enjoyed reading it. Your daughter is adorable and I enjoyed all of the pics. I have a six year old daughter with cf.


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