Tuesday, March 22

Weight- The Ugly Word

It's been about a month since we first moved in to our new house. Although we aren't completely unpacked and settled, it seems like we are starting to feel this way. It's been a great stress reliever to have a place for Madeline to run outside, many places to store all of her meds without having to pull out boxes under boxes to find the right one. Life in the new house is just more comfortable for everyone and that has made battling CF daily a lot easier....

The time is coming when we trudge back to Hopkins and again get a throat culture for Madeline to see if this nasty bug (Pseudo) is still taking up havoc in her lungs. This will be the 3rd go around and you know what they say about the "3rd time being a charm." I am hopeful that this time the culture will show very very little growth or none at all. Each visit has shown that pseudo has weakened more and more.

We are all  a little apprehensive about this visit since weight is always a big concern with CF patients. Madeline has maintained weight in the 80th-90th percentile for over a year now but of course her weight gain has not always been as significant each time. Last visit she gained over a pound and a half in 6 weeks. The time before that she barely gained a fourth of a pound. They are more concerned with her visit to visit gain which makes each visit a test.

Notice that fat hanging over?! Plenty chubby to me!
Yes, she wears her sunglasses everywhere now!

So, the dreaded scale yesterday showed the results that I didn"t want to see- she hasn't gained much at all.
Of course this is a concern, since she is continuing to culture Pseudo which could be developing more of an infection  in her body thus preventing her from gaining weight well. This too, was what determined her last hospital stay at 2 months- "failure to thrive" or AKA poor weight gain. This threat always looms over our heads...

So these past few days we have been stuffing in the extra cheese, melting more butter, making quick trip through the famous drive thrus in hopes that we can cram in those few extra calories for a better result on the dreaded scale. As most cf parents know, the scale numbers dictate the results of your clinic appointment. This is what the nurses have you do first when you arrive- weigh your child. The doctor comes in and presents the "numbers" to you (which you have already calculated what you "need" to get their approval nod). They discuss why your child only gained .6 instead of 1.7! Your parent report card is seen in front of your eyes and although this stupid number talk seems ridiculous down to the last tenth of the number, it is Cystic Fibrosis's reality. Poor weight gain is linked directly to increased risk of lung infections....

Yes, the  scale drives most of the appointment. Once your child is weighed you just pretty much know how the appointment is going to go ....(if it is a check-up) You pretty much get a feel for if you will be declared "Parent of year" or be asked, "What have you been doing to supplement her calories? " You may even be asked to give the doctor a run through of each meal and what is served. You are in the hot seat.

It seems appropriate to explain that it isn't so much any specific clinic's fault. We have been at other clinic's with Madeline for CF. Unfortunately, this is just part of the ugliness of Cystic Fibrosis. Weight is so important and does drive your appointment.

The pressures of this disease make it very stressful at times. Weight is one of those big ones.

We are all trudging along, ready to zoom past Friday. We are hoping for the best but just not sure what that is  right now. No pseudo and good weight gain would be perfect...

Keep your fingers crossed for us- Friday here we come....


  1. Keeping fingers crossed for good news!! And for the drive thru's to pay off. Ben loves vanilla milkshakes from anywhere. Topped off with some fries is lots of good calories!

  2. Keeping everything crossed for a pseudo free culture and weight gain!!

    We are having issues with weight at the moment but for different reasons. Nothing is ever easy is it?

    Noone outside of our world would understand the importance of weight and why we get so obsessive. Great post btw explains all the emotions perfectly.

    Oh and what I can see of your house looks wonderful, like a dream home you'd draw as a child :)

    Glad you are settling in.


  3. LOVE those pictures!..particularly the first one! I love the light and just the beauty of them! I am hoping Madeline's weight will not indicate an infection. I hope she stays chubby for a very long time! Sorry you're worried. Oh, I know how that feels. :) Sending prayers your way!!


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