Monday, December 4, 2017


Hello family and friends. Today was a very long day for Ava and I. On Ava's last x ray the radiologist mentioned the word scoliosis in his notes. That jumped out at me and I called her Orthopedic doctor to set up an appointment. He had discharged her in 2013 as he said her back looked fine. Ava has grown so much over the last year. Something like 6 inches... crazy huh?

Ava and I before her appointment. We are now the same height 5'3!

So I'm having a hard time grasping today in my brain so I'm not going to go into detail. Yes I know scoliosis can happen in CDHer's due to the fact that their patch pulls and "tethers" down their spine but STOP not on Ava. I'm not ready for this. So for the facts of the day. She was in the fancy x ray machine once again. She also got x rays of her hands. They say they can tell about aging and growing through your hands.

Her curve is on the left... usually people with scoliosis have the curve on the right. It does make sense though as Ava's Gortex patch is on the left side.

Here is the findings of the x ray results.
Findings / Impression: There is levoscoliosis of the thoracic spine
with Cobb angle of 26 degrees between T6 and T11. Negative sagittal

balance with offset of 9.1 cm.

Dr. Weinstein diagnosed Ava with scoliosis today. He said she needed a back brace and he wanted her to wear it 14-16 hours a day. He also ordered an MRI which we were able to do today. She was very afraid at the start, tears streaming down but then she did fine. It was me that was a nervous wreck. I was able to stay in the room with her. Ava has penetrating eyes. I had flash backs of when she was small and she couldn't talk. Her eyes would show such sorrow. It was so hard watching the fear yet again. She was in the machine for almost an hour. I wasn't able to bring my phone so I didn't get any pictures of the MRI.

She had to be measured. She's excited about the brace. I'm not at all. Fifteen years ago I broke my back in a go cart accident. I had to wear a full body back brace for 4 months. It was terrible. It pains me to know she will have to go through this. However the goal is to keep her curve exactly where it is. We caught it before it was really bad. If we can maintain her spine now she will not need surgery in the future. All of this news is hitting me like a ton of bricks. I'm reminding myself to remain calm and let God take care of her. It's just so very hard to do all the time. I wanted to bawl my eyes out but I had to be strong for Ava. I'm just amazed at how brave and strong she is! She truly is one in a million! Now we wait for about 6 weeks and then we will be back to get her brace and have Dr. Weinstein make it perfect so that it will help Ava.

Ava getting fitted for her brace. 

Silly girl!

She got to pick out a pattern for the brace. She choose butterflies!

This is a sample of what the brace will look like. It will be opposite than this since her curve is on the left and not the right.

Please keep us in your prayers. This is another BIG change in our lives. We have yet to get the final read on her CT scan from her surgeon's appointment. I'm assuming they are okay however looking at her diaphragm today on this xray it concerns me. I'm just not sure if her patch is steady and good. SO much to think about... so much on my mind. We need your prayers!



Anonymous said...

Thoughts to you and yours Terri. These kiddos just never get to be done with it and that sucks. She's a fighter and such a trooper though, nothing will keep her down for long!

Tina White said...

Sister, you are so brave and strong. Sorry tat Ava had a hard day and more to deal with. Tell her Aunt Tina had an MRI today too. I was a little scared too. All the noises it makes it wild. Praying for Ava and you Terri, stay strong, I know you both
will. Love you lots!

Mary Lou said...

'The only thing I knew how to do was to KEEP ON KEEPIN' ON like a bird that flew....' --Lyrics to 'Tangled Up In Blue', written by Bob Dylan
This line—this lifeline—helped me through and kept me sane during six long, emotionally stressful months when somebody who I love dearly battled breast cancer over the Summer of 2017.... When I had to stay strong for everybody.... When I became Supergirl. I am now passing this line onto you, Friend!! Hugs and prayers!! ;)
Peace out, Mary Lou