Wednesday, February 10, 2010

Busy Busy

Well, January flew by! We moved into our house January 18th and have been enjoying our new place. Julianne loves her room and really enjoys playing in there. She had no problem transitioning to sleeping in her own room rather than ours. She'd been in our room since she was an infant. Originally, it was because she gagged and vomited so much during the night that we wanted her close by. Then it was because we knew we'd be moving and didn't want to disassemble the crib only to have to reassemble it in another room and then disassemble it to move. Then, she was in our room with us at my parents' house because it was just easier that way. Anyway, she's done fine in her own room. :) She calls it "Joo-ann's room".

Here's a bit of a medical update:

  • Eating and gagging has been more of a struggle lately. We continue to try and make that better for her but still aren't sure how to really do that. We're considering another swallow study after Julianne's next GI appointment.
  • I've emailed back and forth with Julianne's Boston Cardiologist and they're scheduling her surgery sometime in April or May.
  • Julianne has a follow-up Neurologist appointment on Thursday.
  • The lab work from the last post all came back fine!
  • It finally happened. Julianne's G-tube button came out at home! Thankfully, it was replaced with a quick trip to Our Lady of the Lake. With the encouragement of a tube feeding friend (well, she doesn't tube feed anymore) and instruction from the ER doctor, I think I may be able to replace it myself next time. That would be a relief for sure.
Finally, as you saw in the picture above, this week is Congenital Heart Defect Awareness week! Julianne has one of the most complex CHD's there is and yet, sometimes even HLHS goes undetected before the baby is born. We are so thankful to have known about Julianne's HLHS before she was born! That was a huge blessing for which we'll always be grateful.

We were recently contacted by a couple who have created a shop dedicated to selling CHD awareness jewelry. They make really cute stuff! Feel free to check it out!

1 comment:

Anonymous said...

Julianne has made such progress is such a cutie! I know that she makes your hearts full ALL of the time! She is such a witness of the grace of our Father and you and Kent are as well. God made you the perfect parents for her! I will continue to pray for you all as you prepare to go back to Boston.

God bless,