Today I took Liam and Lanie to urgent care. Lanie had a really bad sore throat and I needed to make sure she didn't have strep. I have Liam and I checked as well. We were all negative. They said it's probably he virus that's going around right now.
When I hear someone say "oh it's just a cold" or "its no big deal just a small virus", I want to smack them upside the head on hopes to juggle the smarts loose and override the stupid.
With a CDHer it's never "just a virus", "just a cold".
It's "I'm struggling to breathe and can't keep feeds down and am rapidly loosing weight" thing.
Today at urgent care I was scared to look at the scale. I didn't want the disappointment of seeing that he'd lost more weight. I am already seeing him all skin and bones. After seeing it in KG, I was too scared to ask the nurse to convert it to pounds for me. But I decided just now to do it.
24 pounds and 4 ounces. My 4 year old son should be way bigger. He should weigh around 40 pounds. And his BMI should be 14-18% not 0%.
It's been such a struggle. Every time we get somewhere with weight gain, he gets sick or stops tolerating feeds and looses it all. We have no room to budge or fudge or loose here.
I'm not asking for things to be different. I'm praying for the strength and knowledge to help my son through this. I have to keep faith that we will get there.
I've been so disappointed for so long that I work so hard and basically kill myself to hell Liam gain and it always falls flat. But I look at him and he will just smile at me with that million watt smile that melts your heart and I know that's his and Gods way of saying it'll work out.
For now we just need prayers. Prayers that he gets over this soon. And throw in prayers for the many many CDH kids and babies fighting harder battles right now. Baby Emily who isn't looking too good. Jaime who is in the hospital because he has a bowel obstruction. And so many many more.
No comments:
Post a Comment