Monday, December 6

You do the best you can.

Yep, that's right....

You do the best you can. That is all we can do, right?

As CF mom,s it seems as though sometimes the cards are stacked higher for us.

Today's clinic was not quite what I had hoped for.

In fact, it was a disappointment really.

It was one of those visits that leaves you dumbfounded that you are having this discussion....

And of course it was ALL about weight.

Madeline started in the 6th percentile when she was born and stayed there for the first few months of her life. She didn't gain large amounts of weight until she neared 6 months. From the chart below , you can see how her weight took off after that....She hit the 50th percentile at 6 months and the rest was history....

So, that chart has been a point of celebrating for quite some time...due to her rising percentiles.

Until this time....

The last point on the at chart shows Madeline still at the 80th percentile. This was marked as today's visit.
I am sure most of you are thinking...."well, that's great!" Yea..not really...

Let me explain....

Madeline gained 2 pounds before her last clinic visit. She was at the 91st percentile. This visit she gained under half a pound. The visits were both 3 months apart. She still may be high above the 50th percentile but that doesn't account for her poor weight gain these past 3 months. It's merely important to make sure that the weight gain continues....and for her it didn't in 3 WHOLE months.

She has been eating like crazy and because of this I just don't get it. The clinic was a little shocked by her small gain. I think I sat shell shocked for most of the visit. I even made the nurse weigh her TWICE...
(thinking this cannot be!)

yes, I was in denial...

So, what gives? What is causing her not to gain??? I don't know the answer to that question. She eats more than she ever has. She isn't coughing which would make me believe she isn't sick. (although, we know sometimes that means nothing). Is it the switch from pancrecarb to Zenpep? Those 2 weeks of malabsorbtion? Was it due to the fact that she grew 2.5 cm these past 3 months and her body sucked up those calories for growth????What is it??????

I hate the unknown. We were told to come back in a month. They are weary of her small gain and want to monitor it closer. We also were told that the culture results will be in the middle of this week. Implying maybe an infection? Who knows???

Whatever it is ...I need to know. I hope we can kick this "low weight gain" to the curb soon...She eats very well so I am not sure what else I can do.

Again, we cf mamas  JUST DO THE BEST WE CAN....


  1. I am here for you if you need to talk. I hate bad clinic visits more than anything. I have one tomorrow and expecting it but hoping for the best. That is all we can do. Hope for the best but fight CF with all of the tools in our grasp!!!! Zoey and I are sending lots of hugs your way.

  2. Boo. Could it be from her growth and being so active? I mean - maybe she is burning off all the calories from being an active toddler. I know this is going to drive you nuts...been there and done that. Try not to worry yourself too much (easier said than done, right?!) I'll be praying for good culture results. That wait is the worst!! You are doing a good job momma. Keep us posted. Big big hugs.

  3. I know it's an emotional struggle and weight is no easy venture for our kids BUT I think they are going a little overboard? Kids even off sometimes and have slow weight gains. Aidan was 66 pounds for an entire year and just recently gained 5 pounds in 1 month. As long as she has extra weight on her, I would try not to stress. That is great that she is a great eater, you're doing a great job! Megan

  4. Wow just have been reading up about your little girl must have been so hard to go through all that with you man away you are one brave woman!!


Thoughts? Comments? Your comments help us stay strong!