Saturday, November 15, 2008

Now I remember why I like Florida so much


Emma wanted to go outside earlier and wanted to know where her finger coats were. It took me a few minutes before I realized that she was talking about her mittens. It is freeeeezing here, and the girls are looking forward to hopefully seeing a few snow flurries in the morning like they are predicting.

Hailey is home and doing well. She is starting to tolerate her feeds better and not spitting up nearly as much as she was yesterday. Hailey pulled out her feeding tube tonight, but Ashley put it back in perfectly. She is such a good mama! I was able to feed her part of her bolus feeding tonight since I needed some practice on everything...I am keeping her Monday and Tuesday while Ashley is at work, and I can not wait snuggle with her all day on those days. My sister-in-law from Cincy is keeping the girls from tomorrow night until Tuesday night, so I can devote my attention to Hailey and Nate...and the girls are totally excited to see their other cousins for a couple of days.

The plan right now with Hailey is to focus on getting her to gain weight, and they will decide the plan with her heart once her weight is stable. There is still some question on the MCAD diagnosis also...remember, that's the fatty acid oxidation disorder that inhibits mitochondrial metabolism. Her cardiologist says that they believe she does indeed have MCAD, but her metabolic doctor has not made that official call yet and wanted to run more tests. Currently, they are all treating her with medication to help if she does have MCAD.

What we do know is that she is the most precious little thing with gorgeous bright red hair...but hey, I'm partial to that. She's a little fighter and has completely stolen my heart and the hearts of everyone around her. I have loved every minute of being able to see her on this trip.

The kids are doing great! They have loved the extra attention over the past few days, and they have all been pretty good. And I miss my darling husband and can't wait to see him in a few days....thanks for folding that mountain of laundry hun. :)

Abby: Mom, Emma keeps poking Nathan in his eyes.
Me: Em, why are you poking Nathan in his eyes?
Emma: Because it's funny.

5 comments:

Jill Chandler on November 16, 2008 at 7:55 AM said...

Thank you so much for keeping us posting on your family. You are so often in our prayers.
Love, Jill

PS If you figure out waht to do about that eye-poking -or other random pestering- LET ME KNOW! :-)

Bekah on November 16, 2008 at 5:31 PM said...

Haha...finger coats...that's a pretty good description!

I'm glad to hear that Hailey is doing well and the kids are enjoying the trip.

mollie on November 16, 2008 at 6:58 PM said...

I am glad you get to spend some time with your sister. I am SURE she is lovin' it! Cant wait to see some pictures.

Dani on November 16, 2008 at 10:54 PM said...

Good to hear the good news.

Gary is rolling over here about finger coats and because it's funny.

Amanda on November 17, 2008 at 1:19 PM said...

Praying Hailey keeps getting better. So glad you were able to go up there. And I must agree that finger coats is the funniest thing I've heard in a long time! You could totally win some kind of something with that phrase!

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