Friday, January 28

Full Circle and CF Clinic Update.

3 weeks after Madeline's birth we (meaning Jack and I) were hearing "cystic fibrosis, cystic fibrosis" over again in our minds with this diagnosis. As new parents, we had to shift our thinking from our previous thoughts. We thought Madeline would lead a completely healthy life to suddenly imagining what kind of uncertainties health would bring. As new parents, many of us "expect" to give birth to healthy children and when life doesn't play "that" card we are shocked. Too many of us take our children's health for granted early in life. We too, had to adjust our thinking very early on.

Watching "Toy Story 3" on Daddy while waiting for the dr.

Instead, we have learned how to not take Madeline's health for granted. We have lived better and stronger for our little girl. We have tried our best to celebrate the positive moments in Madeline's health but struggled with the medical setbacks. In that past (almost)2 years of Madeline's life, I realized today that we have come full circle.

Let me explain....

At times I think it has taken a medical setback to realize that when the "going is good" (Madeline's health) - It's REALLY good and when the "going is bad" it is not as bad as it could be.

It reminds me of this quote by Oprah Winfrey, "Be thankful for what you have; you'll end
up having more. If you concentrate on what you don't have, you will never, ever have enough."

Of course, it seems that Oprah was talking more about material items in life and less about one's health. But really this quote sums up how I feel as it relates to Madeline's health.

Yes, she tried to walk out of the room with the DVD player.
She was upset that she couldn't take her favorite toy (DVD player) with her and "escape."

Today, at Madeline's CF clinic we were seen by one of the four pulmonologists. She was very enthusiastic about Madeline's health and said " I feel great about Madeline's nutritional status". It was no secret that having Madeline fall into the 82nd percentile for weight/height was surely something to celebrate in the CF world. It seems that packing extra butter, eating fattier foods, and giving Madeline more variety of what she likes has paid off in the 1.5 pounds she gained in the last 6 weeks weighing over 30lbs at 23 months.  It seemed as though thinking that sometimes you just cannot have it all in this disease. Sometimes, just being thankful for great weight gain (since it is tied to good lung function and a decreases the chances of lung infections) is enough. And with this celebration and positive thinking we can only push through the rest- her lungs.

Waiting some more...
 I shifted my thinking weeks ago when I was upset over Madeline's little weight gain and positive culture results for Pseudo. Sometimes when the carpet is pulled out from underneath of you, you loose your focus. I lost my focus. I was concentrating on all the BAD that came of Madeline's appointment last time. Don't get me wrong, there was a lot of bad (just like there always will be with this disease) but the BAD was temporary. It was up to me to find the good. Madeline was still maintaining a healthy weight and she wasn't showing symptoms of Pseudo just yet...

And that was when something hit me, I was reminded of how much I had to be thankful for. It was a choice. Life gives you choices. You can choose to see the bad because that is often obvious to see or you can reverse your thinking and focus on where you are and how you can make it better- the positive.

Don't get me wrong, the hardest part of this disease is the emotional roller coaster that it brings. When your child's weight is up,the next day might be the day your child catches a nasty cold that affects their lungs. When your child's lungs are doing well, it may be that you struggle with your child is not absorbing their food (do to enzymes not working), thus not gaining weight. If your child is not gaining weight, then  oftentimes that leads to other problems making  them being prone to lung infections. If your child won't eat, then all of this weighs on you because soon it means that they maybe "threatened" with a g-tube or told they are "failing to thrive"(hospital stays with IV's/surgery). If your child screams bloody murder because he/she doesn't want to sit through another treatment (after sitting for 3 hours per day), you feel the guilt for giving them this disease each time this happens. You feel sorry for all that they go through and all that you have to endure emotionally. There is no emotional break, which is why it is so important to TRY to focus on any positive you can find.

I have learned that and I  have come full circle with this disease. I have experienced "coping", grieving, depression, optomism, and hope- somehow it that same kind of order. Experiencing all of those emotions has allowed me to come "full circle" and find ways to deal with the ups and down of this disease in the best way I know ho. It's all about celebrating the small moments, living in the moment, and hoping for an even better future for your child. Even when the going gets tough and need to grieve, pull yourself together ,and find a way to  thrive on the little positive that is left.

On our way out, with LOTS of stickers.
They are quite the "entertainers!"

With that, we are waiting on the results of Madeline's culture. We will know by the end of next week if she is still culturing Pseudo in her lungs. Regardless,  I plan on celebrating her healthy weight gain and working through whatever those results say. I plan on finding the strength, to find the positive in any news we get.

 I know one thing- I am thankful  for today's moments with my little girl.
Tomorrow can wait..until we get there.

Thank you everyone for your continued support and thoughts.
We appreciate it so much.


  1. I will tell you what I see. I see a beautiful and strong little girl with loving and committed parents and family and a medical support system that is state of the art. She has everything she needs and more. There are so many blessings all around you and I pray that they continue for you guys.

  2. Well said, I am going to link this to my facebook, you summed it up perfectly.

  3. woohoo for a great weight!! Keeping our fingers crossed for no Pseudo!! Keep us updated :)

  4. Wow..great weight! She is adorable and hoping for no PA!

  5. I've been thinking about M and the silly Pseudo...please keep us posted! Way to go on the weight Wonderful accomplishment, especially considering how active 2-year-old's are! Sandy, you are doing a great job and I just love seeing pictures of your sweet girl. She is precious!


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