Mothers Intuition

Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...

Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.

And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.

"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."

Wednesday, November 2, 2011

Catch up growth!

It's been awhile since we've been to the pediatrician's office, 2 months actually.   Of course we've been to the hospital since then, and we have home health nurse visits 2x/week; but all the same- it's been kinda nice not having to go to the clinic for appointments.   So, why did I go this morning?    A weight check.  We get weights done at the hospital but they are too many variables for a weight for MY records....different scales, clothes on, clothes off, morning, afternoon, full of IV fluids.   Of course all of this is mere ounces difference but when you have dipped down to the <3% for weight, every ounce counts. 

September 1 Little Man was 11.1kg, which is 24#.   Today, 2 months later, with 8 weeks on TPN, he is 12.76kg, which is 28#!  He has gained 4# in 8 weeks! This weight will help us see how he is doing on food trials as well; although he will have the "back up" of TPN during the food trials to keep him from losing - we may still get indicators of his inflammation as calories are not readily absorbed from the gut, and his body needs extra calories if his villi (small intestine walls) get damaged.   His growth chart is full of these types of losses.  His growth curve is a picture of a bouncing ball.   He would gain, and then fail a food and either lose or not have any gains for weeks.   Just in September, when he was reacting to the Vit.C supplement; in a week and before we started TPN he lost 1/2kg which is a full pound in just one week! (so technically he has gained 5# in 8 weeks on TPN- having to regain a lost pound!).  

He needed this weight gain, for catch up growth.  He is now in the 35th% for his weight.   I didn't think to get a height check on him too, and should have because looking at his growth chart, I am reminded that his last height check put him in <3% on the chart.   He is much shorter than his brothers were at this age (judging by their growth charts on the wall), but he is proportionate for him.  He is finally out of 24mo. clothes, and even moving up a size in diapers.   From failure to thrive, grow and gain weight, to catch up growth.   My heart smiles. 

1 comment:

  1. That is awesome news, Joy. Great job growing. 4lbs is an amazing gain for FPIES kids.