I want to start off by thanking several people. First this gorgeous dress was sent to Ava by Cindy and Claire. Claire was also born with Congenital Diaphragmatic Hernia like Ava. I just adore this dress. Then Sabrina and Abby sent Ava Teletubbies movies and she also sent the girls each a pair of her ballet shoes she wore in performances she did including the popular “Nutcracker.” We are honored to get these. It is so special to the girls. Next Georgia and Ari sent Ava a personalized Teletubbies shirt. It is the cutest thing and she has already worn it and got it dirty before I could take her picture….ahhhh! And Kristin send Ava movies that she adores. Garret and Rachel got more Teletubbies movies off the internet. My aunt Janice and Uncle Gary dropped by tonight with goodies for all of us. It was great to see them. Again to Jill for the beautiful flowers and balloons. They are sitting on my kitchen table and I am SO enjoying them! To ALL of these wonderful people, “Thanks you so very much!” It is awesome to know so many love and care for us.
Ava had a great day. She never cried once. I do have to be very careful picking her up. I was lifting her to sit her on the chair to eat lunch and she let out a yell and held her tummy. I felt so bad. We are getting very little out of her JP drain and the color is getting lighter….which is an great sign things are healing. She is getting three antibiotics here at home plus her Zantac for reflux. Her meds include: Cefepime, Gentomyocin, (both IV) Flagyl ,(by mouth) Zantac, Motrin and Tylenol. The TPN (IV nutrients) run for 16 hours a day. The Gentomyocin is run on a pump for a half an hour every 8 hours. Cefepime is a push IV drug given every 12 hours. Her Flagyl is every 8 hours. Her pain meds I give when I feel she needs them. I have stopped giving them as scheduled.
Her energy level is still down but that is to be expected. She danced for quite some time last night. THAT was great to see. Tears well they filled my eyes…..my little girl is returning. She was not the least bit scared to go up our very steep stairs. I was amazed. She is so carefree here at home. The WONDERFUL thing for me is that now I can know how she really feels. I know she is not frustrated but in pain. At this very very second she is laughing….how precious is life? Way cool Anyway back to the post. I am so glad Ava’s doctors let us go. I feels so FREE.
Ava woke this morning with HUGE smiles. The first thing I said was, “Ava we’re home.” Here was her look. Never mind her wild hair! She was just thrilled to be home.
My own bed felt so good. You just take for granted even the comfort and privacy of your own bed. When I laid my head down last night tears came……God is my strength. In Him I can find peace and know things will work out. How blessed I am!
A few pictures of our day.
The first picture was part of a shoot I couldn’t resist to do once we received the dress from Cindy and Claire. I just had to do a full blow photo shoot of Miss Thing. Here are a few of my favories,
“God Bless these wonderful people that read Ava’s blog tonight. I know they all have trials and struggles in their own lives. Give them the peace you have given me. Life is so full of ups and downs. We just have to know that there is a Rainbow just ahead. We love and honor you tonight, Lord. In Your gracious name, Amen.”