Day 1079 - Ava's 3rd Birthday!

Today was Ava's 3rd Birthday and we are on our way home from being in Florida for a week. All four of us girls went while Daddy was working. He got to have a little fun with us on the weekend before his birthday. ;) It was such a blessing and Ava had a great time. We managed to keep Ava healthy, while the rest of us got sick. She wore a mask on the plane the whole time like such a pro. We also forgot her feed pump and only had a 10ml syringe. She is supposed to get 600ml's of Pediasure throughout the day. The first day I got in 400 mls in her, but then after some discussion we thought maybe this was a blessing in disguise. She was hungry more. I did have her drink some Pediasure throughout the week. One morning alone she ate bacon, sausage and some eggs. She also drank milk as well. It seems as though she eats more than any normal 3 year old. We shall see how much she weighs when we get home.

We are so blessed to have 3 years with Ava. It was such a joy to take her to the beach and swimming. She kept saying "beach". Swimming can be difficult with the trach hole still being opened and the "waterproof" bandage not really being waterproof. Ava loves to swim though and loves to jump in. If I would let her she would jump in all by herself. We have a tentative scheduled surgery date for her trach hole to be closed on May 6th.

Last week before we left we received the approval to stop giving Ava Prevacid. She has been on this med practically since she was born and she has been doing great without it. What a blessing!

Please keep us in your prayers for Ava to gain weight and eat so we can get the feeding tube out this summer. Also pray for a successful painless surgery in the spring and to stay healthy.

Thanking God for 3 years of Ava and praying for many more...

Day 1064 - My three little ducklings...

Almost 3 years later, my dream of Ava walking out of Target with her sisters like three little ducklings following their mama; happened. If you recall from the early days, my story of feeling like Ava was supposed to be walking behind her sister's someday, while I was pregnant with her. This was the vision, that God gave me, that got me through all the hard times and why I just knew that Ava was going to live. The girls were just as excited about this photo as I was. Below is another photo of Ali dressing up Ava in a "Fifi" costume. Ava lets her sister's dress her up and when they aren't around is always asking for both of them. I also took her into Micheal's and let her walk around for the first time with me holding her or her hand. Believe it or not, she walked around and didn't touch anything. She fell on the floor on her bottom at one point, Ariana noticed and told me. I turn around to see her with her hands up in the air not knowing what to do because she knew not to touch the floor. She is very well trained by the germaphobic mommy. To say we are having fun, is an understatement. Ariana is taking gymnastics and she was practicing handstands against the wall. Ava walks up to the wall and puts her hands on the floor and starts trying to do a handstand! She even grunts like she is working so hard. Ava also enjoys going out in the snow which is the first time she has ever done that as well. The first day she cried so hard begging Daddy to stay outside. She is also eating pretty well except when she doesn't want to. Then she will gag and act like she can't eat. Smart cookie, except we aren't fooled. ;)

Thanking God for our life with Ava and praying for this joy to be never-ending...

Day 1063

Today we got the approval to decrease Ava's Prevacid to 1x a day. If she does fine without that dose at night, we can call in a week or two and they will approve for us to not have to give her the med anymore. Praise God! Ava's meds are now only Albuterol, Qvar, vitamins & Floride! Hopefully in the spring we can stop using Albuterol 2x a day as well. We also are having her drink 350+ of her Pediasure and whole milk instead of sitting for 2 hours in her high chair to get fed through her g-tube. She receives the other 250 through her gtube at nap time.

We go to ENT next week and in a month back to Lung Center. We actually are going to be getting a new Physical therapist and finishing up Ava's evaluations for transition out of early intervention. In two weeks we have her meeting with Alden school to go over how many therapists she will be seeing. She is also potty training but really doesn't care about being wet. She loves to clap her hands and have us shout with joy when she does go. It's hard to believe that she will be three and everything happened three years ago. It's amazing to see how God has been faithful to us.

Thanking God for Ava's progress and praying for Ava to eat and gain weight...