Here we are about to go out for a walk. She has SO MANY cute coats, and doesn't get to wear them because she's always inside. So we thought we would celebrate her wearing one outside.
This is a video of my Mom and Elise playing with a balloon. Elise has really started to reach out and grab things. Her depth perception is starting to really come around. We somehow managed to only take one picture of Elise this week. I guess me working all week does that. I did get another cute video, but it is almost 2 minutes long, and I'm having trouble loading it onto the site. So maybe by next week it will be working. Nothing has changed with her from last week, which can be a good thing. She is completely over her little cold, and back to her normal self. We have spoken with all her doctors in STL about her heart cath in January, and have decided to schedule her for a g-tube (a feeding tube that goes directly into her stomach from the outside of her abdomen) with the understanding that we can cancel it if she decides to start eating by then. But it is best to schedule it now, and cancel later if need be. The doctors were a little concerned about her rapid weight gain over the past 2 months. At the end of Sept she was in the 50th percentile for her age, and now she is in the 95th percentile. Although they want her to be a healthy weight, they said gaining too much too fast can actually be harmful. Which may partly explain why it has been hard for us to wean her oxygen lately. So we are decreasing her total caloric intake, and will watch to see if her weight will level off. It has been overly frustrating for Jason and I lately with her feedings. We have been trying so hard every feed to get her to eat over the past two months, and are seeing little to no progress. All we want is to be able to enjoy time with our precious daughter, but all we really feel is let down by little progress, and an unknown road ahead. I feel like we are so concentrated on the future, wondering when she'll start eating, will she be like other one year-olds. That we don't even get to truly enjoy today. Don't get me wrong, we cherish every moment she's with us, but we can't help but wish for a fast-forward preview of her future health. Maybe last week should just be chucked in the "bad week" folder, it just seems like that folder's getting bigger than the "good week" one.
Kristin
1 comment:
Such a cutie!!! I know it's hard to stay positive, but you guys are doing a great job! I bet if you keep trying to feed her chocolate pie like last week, she'll be eating in no time.... yeh, I know, it's not quite that simple, but we can always hope!
Hugs & kisses all around!
Love you guys!
Kathy, Mike, Sean & Traci
Post a Comment