Today we took Ava out in the snow. They cancelled school because of a snow/ice storm we got the night before. The roads were covered in ice. Lexis and Emeline were sledding down the front steps and hills! Ava was sad looking out the door so we decided to let her join in on the fun. As you can see she was all smiles!
Here is a video of her sleigh fun. The music is "Jingle bells" and it fits perfectly!
Ava is done with her antibiotic, Flagyl. I'm not sure it helped but one thing I did noticed is that her heart rate got all the way down to 114 beats per minute while she was sleeping. This is "great" for Miss Ava. Normally when she sleeps it runs for 130-160. (Not kidding at all here.) Plus she has been SLEEPING! Last night she slept 8 YES 8 hours all in a row! If you know me you know what a "celebration" this truly IS! She has never slept more than 6 hours before EVER!(I know and she is 2.) So as you can imagine I feel really good today! Last night as Brian and I was changing her Hicmann line (central line for her IV)dressing she fell fast asleep. That never happens. Well it was her Daddy's fault. He never put her down for her nap of the day. His reasoning, "She wasn't tired!" I had to take Lexis to the ENT (throat doc) to get everything lined up for her surgery. I was a little grossed out by all the explanation of what was going to happen. See I had to have my tonsils out when I was 18 and it was very painful and I remember everything. I just hope she has an easier time that I did. So needless to say she was super tired last night.
She threw up four times yesterday and all were dark green, which means she is still bringing up intestinal bile. I know they tell me that this is normal with all she went through but I'm starting to get concerned it could be something else. But to add something good I made Goolosh for super and she loved the pasta but within about 5 minutes it all came back up. I went to take away her bowl and she held it tight and shook her head no. I asked her if she was done and she obviously wasn't. She ate about 5 more bites and that all stayed down! She rarely throws up at night either. I am praying that the antibiotic worked and the swallow study test effects are fading from her. She is having bowel movements so that is also a great positive! The doctors are going to give her a week off of the antibiotics and then possibly start her on Genomicin the next week.
All in all we are happy with her progress. I wish I didn't have to always know where the bucket was but hey we could be in the hospital. I still have a constant fear of spending Christmas in the hospital. With all your prayers and thoughts we will avoid this entirely!
Thanks for your support. I love all your messages. They mean more than you know. We really appreciate all of you!
~Terri and Brian