How can she be 12?

Hello friends! I am a little late posting this, but we have been extra busy with Ava starting middle school. She loves it by the way. God has given her amazing teachers. I adore her IEP teacher. (She was the teacher that came to our house and helped Emeline when she was out of school for several weeks with her jaws wired shut...due to her jaw breaking.) Mrs. Vandenburg remembered Ava and her story. I was so thankful at an open house and relieved to know that she would be looking over Ava and helping her a lot.

Mrs. Vandenburg and Ava at Open House.

Mrs. Menke is her school nurse. I met her when Emeline was in middle school. We spoke to her during the open house. I knew that Ava would be in excellent hands. It turns out her, and I have a thing or two in common. She loves to write too! Many years ago, I had a strong passion for writing a book about Ava's journey. Ava was one at the time. I posted a note on my desk and said that "I will write a book one day." So here it is 11 years later, and during a text, I told her about Ava's blog. She read it and said, "You are a great writer. You should write a book." It was another sign that yes I should dust off those pages and try to get to it again. Ava has had so much happen in her life. A dream of mine would be to write a book and then get it made into a movie. It was neat that Mrs. Menke brought it up out of the blue. God sends us angels and her, and Mrs. Vandenberg are two of them!

But Jesus beheld them, and said unto them, With men this is impossible, but with God all things are possible. -Matthew 19:26

So for the purpose of this blog post. Ava turned TWELVE on August 31! It is just crazy to think about her birth and those first several days/weeks/months. I still am humbled by the fact that God sent us to the hospital and that led us to get Dr. Adzick the number one children's surgeon in the world. I mean that in itself is a miracle! Ava doesn't want to revisit her birth or look at the pictures. (I do every year as it keeps me thankful for all she went through and all that God brought our entire family through.)

Ava and I do one thing together every year on her birthday. We do a photo shoot. I love taking pictures, especially of her. It calms me and brings out my creative side. This "ritual" brings us together, and it helps me heal, and it bonds us as well. I think our Children's Hospital of Philadelphia visit this Summer made Ava realize just how blessed she is to be alive.

So here are a few of our favorites of that day. (Disclosure... this road is very secluded and does not get very much traffic.)

I used the road to symbolize her journey. 

We just had a lovely family Supper of homemade chicken Alfredo and breadsticks. (Her choice) Aunt Marsha made her mermaid cupcake birthday cake. So sweet!

So she was pretty surprised by her birthday present. I had to share this with you all. She is such a grateful young lady. And yes we got her a helmet. It goes 15 miles per hour. (On the sidewalks of course.) She was shocked, to say the least!

I picked this unique necklace out for her. It was exactly what I want her to know each and every day. She is ALL of these things and more!

"You Are Braver Than You Believe, Stronger than you seem, and Smarter than you think, and Loved more than you know. "

She has a helmet and wears it whenever she rides. Safety is key!

Something HUGE changed in her medical care on her birthday. Our "mycharts" an electronic health chart site had a drastic change with her age of 12. They want to "protect" the child by not allowing parents electronic records. It is, so that doctor and patient safety is number one. (AKA... child age 12 wants to be on birth control or has a drug issue they can talk about it without their parents knowing... bottom line. My summed up version.) I was so upset about this. I'm so used to getting online and looking at all her medical records and viewing all her tests. I could message her specialty doctors and get an immediate response. It was so easy to look over all her care in one place. Now I have a lot more "red tape" to cross. I am going to try and fight it. Ava saw me upset and said, "Mom I want you to have full access to my records. You save my life." That was sweet. Ava filled out the form for her to get her own my chart that way I can go on and see it there. It is just so much more work. I'm sorry, but in my opinion, 12 is a minor. I'm still fully responsible for her.

She has a heart catheterization on Monday, September 17th. She is very nervous about this. They really want her to have just enough sedation medicine so that she is responsive but not aware of what is going on. She was distraught when the nurse practitioner used the word awake to describe how she would be. Sedated is not awake. Her heart doctor led us to believe that she would be put under during the procedure. It was a shock. The sad thing about full sedation (She would be placed on the ventilator.) Her normal pressures will not be entirely accurate not breathing on her own. Also with the tube, it is longer recovery time and a lot more drugs and risks involved. We will make the final decision on Monday. This is the first real procedure that she will have done that is a big deal. Pray that the anesthesiologist will do what is best for her. We want no mistakes, and we want her to leave just as she came in.

The reason for the heart catheterization is to look at the right ventricular of her heart for hypertension. Her echo at CHOP over the Summer showed strain on the right side. They will insert a line in either her arm, neck or groin and go directly to her heart and measure her exact pressures. Pray that she finds peace in the decision she makes with the help of doctors and us. Brian will be with us, so that eases my mind so much. He is my rock. Thanks for stopping by and I will update you as soon as I can about her procedure! Much love to you all.

- Terri