Wednesday, October 22, 2008

13 Months with her 2nd cold

Julianne had a Cardiology check-up on Friday. All was well. She did not have an echo because she'll be having a sedated echo in a couple of weeks in Boston. We'll be heading up there November 6-8 for Julianne to participate in a study that she's been a part of since surgery #1. They pay our travel and housing costs and will not be doing anything invasive. She'll have a sedated echo, a neuro-developmental exam and a genetic exam.

We had a pretty busy weekend. Julianne went to her first concert/festival on Saturday. We went to ShoutFest, which is a Christian music festival, at Zephyr field. Kent was really excited to see a band that he's liked for a long time and we were happy to go with him. :) Julianne did great riding around in her backpack carrier when we were walking around and hanging out on the blanket with us when we were sitting. She had absolutely no problem falling asleep in her backpack carrier even with all of the loud music and people. She's such a content and easygoing baby! Here are some pictures and a short video from the day:

On Sunday, we went to the LPCF picnic. It was nice to see some of our heart family friends that we hadn't seen in quite a while. Julianne enjoyed the baby spacewalk, releasing the balloons and seeing another baby. It was a great day. They really made it special. Julianne was dressed in her costume as a New Orleans Saints cheerleader.

Julianne also made 13 months on Sunday, the 19th and as a very special treat she has a cold! For Julianne a cold is a little more than a cold. A cold includes gagging, retching and vomiting all day and for a good part of the night. I can only guess that because she's so sensitive in the gagging department that the slightest bit of drip down her throat sets the whole thing in motion. We elevated one end of her mattress otherwise she'd gag all night long. So, its just like old times! I don't know if you remember the pictures of her in her elevated crib when she was 0-7 months, but its like that...but no tucker sling. I tuck a big towel into the crib just like a sheet. The texture of the towel keeps her from sliding to the bottom of the crib. So, between the vomiting, snot and Julianne opening her own g-tube button or disconnecting her feeding during her sleep we've had at least one vomit/formula soaked load of laundry per day. She seems to be moving along though. Her eyes were not nearly as runny today and she's gagging a little less. She also slept all the way through the night. Her O2 saturations have been fine and it seems to just be a cold right now.

Finally, I'll leave you with a video of our crazy dancer dancing to a musical birthday card playing "Mr. Roboto." Just a brief explanation, she really gets into it at first, then she thinks she hears a dog....(that sound she's making is barking, by the way)


Elysmom said...

how adorable. love the cheeks!!! she is starting to look older.

colds can trigger a flare up in reflux. it was something we noticed with Elyse.

also, have you ever heard of the AMT clamp? It's this little rubber thing you connect to the ends of the tube and extension making it hard for it to disconnect if she moves around allot at night. We used it allot because Elyse would wake up soaked and smelling awful.

The medicine port can still open, so we also use a ace band and tie it around to it doesn't open. it hold it pretty good.



She is getting so big!!! It's amazing to me how fast they grow. Sorry to hear about her cold we all had it here in VA over the last week. No Fun!!! P.S. Her outfits are adorable. I also think that we are having another

Keep in touch,

Anonymous said...

Glad to hear she enjoyed the concert. She's going to be a very cultured baby girl... : )

Sorry to hear about the cold. Glad to hear she's feeling better.

Loved the video!!!!!

See ya soon!!

A. Stac