Friday, January 16, 2015

Happy 2015!

Hello Ava followers! We had a big day of Iowa City appointments and tests! Ava first saw Dr. Reinking her cardiologist. We love him! (It's a bonus that he's easy on the eyes.) He listens to Ava and me. He also realized that as I told him in November Ava was NOT her normal self as he could clearly see today. She is a wild child! She speaks her mind and has a hard time sitting still. It was good to take her to an appointment HEALTHY so they can see her in her good times too! The results of the Heart Holter monitor in November showed that her heart was strong and healthy. It did bring concen to him that her heart rate dropped to 42 beats per minute while she slept. He was happy to hear that her heart rate returned to normal shortly after the medicine (Zithromax) left her system. I strongly feel this was the reason for her slowed heart rate.

Dr. Reinking checking her pulse. She laughed at him. He commented that he loved her penguin socks.

She is growing like a weed. She weighs 54 pounds and her height is 4 feet 6 inches.

She got another EKG while there... she's a pro at this!

He thought we could skip doing another holter test as she seemed back to normal but I told him I'd really like to do one to get her real baseline "normal" heart rate. He will be shocked at the difference I know it! Here is how different she was... her appointment in November when she was having the lower heart rate was 62 in the office. Today she was 92. EVERYTHING she was doing was the same. She was just sitting on the table. This was NOT normal for her and VERY scary for me. She's always had a SUPER high heart rate.

So he absolutely, with no hesitation agreed that we could do the test. Here is her getting hooked up in case you aren't aware of what a Holter test consists of... she wears this for an entire 24 hours. It hooks to her jeans. It's very light weight and easy to wear. There is five wires that connect to the monitor. She is supposed to do everything as she normally would. I guess playing "Just Dance" with Emeline is okay then.... that's what they are doing now!

Here is Ava getting her heart holter monitor on today.

We then had her Pulmonary function test are a group of tests that measure how well the lungs take in and release air. and how well they move gasses such as oxygen from the atmosphere into the body's circulation. Ava is still "learning" how to do this test. It's tough on her. Today during the test Ava got really discouraged. She started to cry. We tried to tell her she was doing a wonderful job and that it was just a test to see how she could do but if she didn't feel like she "could" do the test that was okay too. It's not normal to take a deep breath in then blow all the air out of your lungs for 8 seconds then take a deep breath in. She will get better with age and practice. The test shows that her lungs are pretty well for all she's been through. Sadly there isn't a way to separate the lungs and single on out from the other.

Here was part of the test. As you can see she is still learning...

Ava waiting patiently... LOVE her ipad in these times!

We saw a wonderful nurse practitioner named Samantha Lee from Pulmonology today. I really liked her! Ava was so tired of being there so she was being onry. We discussed possibly doing a ventilation-perfusion (VQ) scan. It is a nuclear scan that uses radioactive material to examine airflow (ventilation) and blood flow (perfusion) in the lungs. I was always a little scared to know exactly how bad Ava's left lung was but now I think that knowing is a good thing PLUS we can have a baseline because... could it possibly get better or worse? That's what I'd like to know. It will not change Ava's care or medication but it will give us more answers. She was going to check on it and let me know soon. We set up another followup in 6 months. All in all it was a great day.

Going there (to the children's hospital) makes me feel such gratitude. SItting there waiting... brings back so many bad memories. I see child after child very sick and some the way Ava was... hanging onto life in some ways. Ava is such a Miracle and God is to be given ALL the glory. We've been so BLESSED. I try not to take it for granted yet not dwell on the struggles. I went back through her blog and want you to see how AMAZING GOD IS! This was just 6 year ago to the day. We were dealing with an open stomach AT HOME and IV and g tube feeds. We were afraid for her future as she wasn't getting well but stuck in sickness. Her brain stopped learning new things. Her full focus was on getting better... but she STILL could SMILE! How did we do it?? She's come so far!

She's a trouper! We pray that 2015 is healthy and she will continue to thrive! We cherish your love, support and prayers. Here is a few pictures I took of her and her sisters not long ago. Life is a challenge sometimes but worth EVERY second! All of our girls are such gifts from God. I'm so proud of all of them!

Love and cherish all the time you have here.... God has special plans for ALL of us!

~Terri Helmick

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