Thursday, May 2, 2013


April was good to us! Cecilia did not use the gtube for anything other than medicine (Lasix, Aspirin, Enalapril, Prevacid).  However, I am trying to get her to take meds exsclusively oral now.  It is a fight :)   Cecilia doesnt like that.  We see GI May 13, and Cardio May 15.  It would be nice to be able to say we have no use for a gtube anymore. 

Cardio sends me copies of everything he sends to the Ped, which I LOVE.  He sends him letters after every check up.  I know, from these letters, that they have not been able to see Cecilia's Glenn in echo since she was inpatient.  And if she reacts the same way as she did last echo, they want to do a sedated echo.  I think that might be what is best. 

I just cant stop smiling about her drinking bottles!

So Florida was a lot of fun for us.  Cecilia hated the drive, being stuck in her car seat....she cried off and on most of the way and drenched herself in sweat.  I was sure the rest of the trip would be miserable because her stroller is her car seat...but I was wrong :).   She was so good and very happy!  She loved Florida just as much as everyone!

We did so many fun things.  The Wedding was beautiful.  Stacey and Olaf~  you belong to each other and I wish you a lifetime of happiness!  (there are pics on Facebook I cant put on here because my desktop computer wont turn on, I hope it is not broken)... We spent an afternoon at Downtown Disney, which is a place with a lot of shops and dining.  We went to a Dinner Show, I cant remember what it was called but it was about Pirates.  It was fun!  We spent a day at Universal Studios, and we had so much help from Grandma and Grandpa Vinje!  We went to Magic Kingdom on a Friday, and left for home Saturday afternoon.  Our first family vacation as a family of 7 was a success! 

Sophia in line for The Aladin ride

The girls on the ride. 


We celebrated our 9 year anniversary!  Married for 4...we got married on our dating anniversary so it would stay the same♥

Next up in April was the Congenital Heart Walk.  My mom took half of the girls to stay the night so I ended up only bringing Gina and Cecilia.  We got to spend time with 2 families that have shared an ICU room with Cecilia last summer. 

Cecilia + Addy.  It was great catching up with her family, and seeing how awesome she is doing!  Their family is all girls too ♥

There were sooo many people walking!  It was awesome seeing all of the support for CHD's in the Dc, MD, VA area.  We walked towards the front of the group and were almost around the lake at the end, and you can see all of the people still walking in this picture

♥Heart Friends ♥ Collin + Cecilia   I hope they will be lifetime friends!!  ♥♥

It was much more colder than I anticipated.  I think next year I will be more prepared and since Cecilia will be older she could interact with her heart friends more :)

Cecilia did not meet the sitting milestone yet, but she did something else I am even more excited about!  She first started sleeping on her tummy, and then would bunch her knees under herself.  So now when she is playing on the ground, she seems so much more stronger and is pushing up on her arms.  She just started to put herself into a crawling position and does the rocking that most babies do before they actually crawl!!!   So maybe she will just skip sitting and go right to crawling! 
I dont have any pictures of the rocking because it is a new thing she is doing, and it doesnt last long enough to take a pic.  But here she is anyway.

playing with her Heart Friends book

She is doing so well and I am so happy.

♥10 months old ♥

drinking all her formula and wanting more ♥

She was playing with her IV pole and it made me laugh...this is the only use we have for her feeding pump, is to entertain Cecilia...I am anxious to talk to her Doctors soon and find out how long until they will be comfortable taking her feeding tube out and letting her stoma close. 

I have some reservations about taking it out, but mostly excited about the possibility.