Birthday and Tests

Hello Ava friends. We’ve been busy. Ava has been doing better about school. She still occasionally has her days when she doesn’t want to go but for the most part she likes school. We’ve worked out that she comes home each day for lunch. It tends to help split her day up so it’s not so long. I like it because I have a chance to look at her and see if she is having any issues or health problems.

Here is Ava in her birthday outfit before school.

And her birthday bow I almost forgot to make!

Ava celebrated her 6th birthday on August 31st. We tend to keep her parties simple. We invited close family and she had a great night. It is hard to believe it was 6 years ago she fought to stay alive at Children’s Hospital of Philadelphia. Some birthdays hit me harder than others. This year was a really tough day for me. I had to keep reminding myself of how GREAT and AMAZING she is doing. God has been good to us!

Aunt Marsha, (Brian’s sister) made this beautiful cake for Ava. (We are getting pretty excited out our Disney World trip from Make-A Wish this coming October!)

Grandma Helmick got her this life sized Justin Bieber.

SO now he’s just part of the family!

Today we finished Ava’s CDH yearly check-up. She is growing so fast. Her height is 3’11.8 “ and her weight is 39.9 pounds.

Her blood pressure was 105/61. Her pulse was 82 and her respirations were 24.

She saw her Pulmonary Doctor whom I really love. Dr. Ahren’s listens to my concerns and really looks Ava over well. We did a Pulmonary Lung Function Test on Ava. It is her first real one. (She had an infant one before she left CHOP at 2 months old but she was sedated.) She did really well.

The older the she get the more accurate the results. The key is to take a HUGE deep breath in and blow the air out HARD for 8 seconds. THAT is a hard thing to do even for an adult. Ava’s exhale was only for a second and a half so we definitely know she can do better as she gets older.

Here is the booth she goes in. She blew an 8! A 10 is a normal reading. This means that her lungs are not normal but not too bad. The doctor explained that her right lung probably does most of the work. We were debating doing a QV scan. This determines the blood flow through your lungs. We believe that her left lung has decreased blood flow due to her CDH. The xrays and the tests she took in the PICU a few years ago leads the doctors to speculate about her left lung function. Right now this test will do us no good. It won’t change how we manage her colds. I’m afraid if we do get the scan and it shows a really bad left lung it will give me anxiety. So for now we will just leave it alone.

She also had an EKG to see how her heart and lungs are doing.

All in all a pretty great day! I’m so proud of her. AND she got the whole day of school off. Can’t beat that can ya?

Thanks for all your love, prayers and support. We love that so many still follow Ava and our CDH journey. We always take the bad, ugly, unknown, scary, and try to see the good. Ava is healthy and we thank God for this!

~Terri Helmick