Hello Ava followers. Ava is doing great today. She is back to eating whatever she likes. We took her to the University this morning for an enema study test. They looked at her large intestines, placing 160 cc’s of barium “up” her bum….not fun at all. She was not a happy girl and cried through most of it. They found that everything there is good. The large bowel and colon looked normal. So the blockage is most likely in the small bowels, which is what Dr. Shilyanski expected. We will be doing a swallow study next Friday morning. They will place Barium in her stomach through her g-tube and see if they can find the problem so they have a better idea of where to look when doing her surgery.
After the study we went to see Dr. Shilyanski and Josh. They are both such amazing and caring medical people and we are so proud to have them on Ava’s team. I really feel they take my concerns very seriously.
I did bring Emeline with us this time as it is SO hard for me to juggle the appointments and Ava. She was a great helper…..but boy oh boy does Emme yap. See I like quiet a lot of the time and she loves to talk…..bad things she is a repeater. Oh well gotta love her for it!! She made this drawing, “Ava you Rock!” Is that a great sister or what?
Oh and Emeline kept Ava entertained by reading her books. It was adorable!
Oh and before you all ask I will let you know that Ava took her first “real and normal” kid fall last night. She was running, (Which she started to FINALLY do about 2 months ago.) trying to keep up with her sister, and boom she fell on the gravel. She scrapped her face and her knee. I was getting a much needed hair cut and when I returned she was on the couch with tears in her eyes. My parents were watching her and they felt SO bad. She is a little energetic little girl and it was bound to happen. I felt bad that it happened to them and not while I was around. My poor dad really took it hard. I told them not to worry about it as this was one of the first normal kid thing she has done in so long. It didn’t make it any easier on Ava….poor baby.
Ava’s first scraped knee.
The surgery date was given today……..it will be done on June 5th. AND since she is now eating she will have to be admitted the night before to do a “cleanse” of the intestines. This could be done at home but I guess it might just be easier all the way around to have them look over her there.
My mind “gets” that she will have surgery but my heart is far away from accepting this thought at the moment. I suppose since we have two more weeks it may get better with time.
Valerie and Laycee sent the girls a package today and WOW what a wonderful gift…….their own personalized shirts. AND Miss Ava got an “Ava” blanket, and Ava cup and many adorable outfits. (She needed them badly!)“Thanks guys we LOVE it all! You made our day….especially after a long doctor visit! Ava smiled HUGE when she saw the “Wiggles” stickers. “Valerie you over did yourself!”
I will get a picture of all three of them with their shirts on together. I can’t wait!
These are a few pictures of her tonight at my parents house.
This was a gorgeous picture of Emeline I had to share.
Oh and by the way Valerie she has already fallen in LOVE with her new blankie!……;)
At the end of a long day Ava is finally resting. She is so full of life! I am amazed at her strength! Her sign language is really picking up. I am SO proud of her. She knows “more”, “please”, “ice-cream”, “hot”, “shoes”, “socks” and her favorite “bye, bye!” She still gabbers but finally things are making sense. She can say the words, “Bob” (that is her way of saying Mom.) “Eat”, “Uh oh”, “WOW”, “please”, and “da-da”. It will come. We will wait.
So please say prayers that the next 2 weeks will be problem free and she will breeze through surgery on the 5th. Thanks for your thoughts and prayers.