by mom2miracles (21 Posts), Thu Apr 01, 2010 11:26 am
I will start out positive by saying that Ethan is doing something new every day. I am so happy with his developmental progress in every area over the past couple of months. Things are going very well. And he will be TWO next mth!!
He had a sleep study Monday night to try to get him off the vent when he's sleeping. They totally screwed up and waited too long to take him off and they only got 1/2 hour of him sleeping off the vent before he woke up. I'm praying it wasn't a wasted night and that it doesn't delay all of the other things...like his surgery and ultimately his trach coming out. If things happen too late we will end up with the trach until next spring because they will not do the upper airway surgery or remove the trach during the winter. I'm totally fine if there's a delay because he's not ready...but it's so frustrating when there's a delay because someone messed up!
I've been really struggling the past couple of weeks because Ella's 3rd b-day is May 10. I hate when the pain comes back as if it was yesterday. That gut-wrenching pain where you feel like your chest is caving in from the weight and you can't take another breath. It doesn't happen to me very often anymore but has been very heavy on my mind lately. Can't seem to get through a day without sobbing. It's not really like me to do this several days in a row. But something kinda cool happened the other day. I had a breakdown in my car on the way to the grocery store. So I went in with swollen, red eyes and I was getting Ethan's pediasure. The cashier was asking questions about it and I told her that my son has a g-tube. The man in line behind me started asking questions about him and I told a short version of E's story...including VERY low birth weight. The man pointed out that I should consider Ethan my miracle this Easter. I realized that he is right and that no matter how bad it feels that I don't have Ella here...I still have so many miracles in my life. Just a little inspiration! Hope everyone has a great holiday!!