Friday, February 2, 2018

All things work together for the Good.

Hello friends and family. Ava is doing GREAT wearing her back brace for 14 hours a day. She usually puts it on at 9pm and tries to wear it all night. Most of the time she wears it until 7 am. Then she wears it a few hours after she gets home from school. She does on occasion take it off at night because she cant sleep and then she wear it to school to get in her time. She never complains. She's so strong and brave.

Ava had a follow up appointment with Dr. Shilyansky (her surgeon) yesterday. We've been concerned about the area around the place her patch was placed in 2008. (Crazy enough her first patch placed at birth was somehow digested by her small bowel when she was 25 months old. And that spun a ton of life and death ordeals for her for several years.)

She's now 5'3.66" (98th percentile)
Weight 91lb 7.9 oz (61 percentile)
BMI- 15.87 (20th percentile)

Blood pressure was 110/65.... her pulse was 108... respiration 18

We are loving Children's new hospital. Everything is so happy and positive. Most of the decorations have to do with corn and farm animals. (I guess that's about all we have here in Iowa!) This amazing lady has been doing Ava's x rays since she was 2. We love her!

She was nearly as tall as the lady!!

 The two spots we are concerned about is the "bubbles" on the left side right under her heart. The first is her stomach and the one near the side is her large colon. (Ava had to have her colon moved in 2008. So where we normally have small intestines on top and large on the bottom... not with Ava. She has her small intestines on her right side and her large on the left side.) We also know that her spleen is on her left side near the left wall, laying almost perpendicular.

I have to always refer to this Bible verse. It's helped us through so many hard times. God is ALWAYS here with us... good times and bad ones alike. I love this little lady!!

I talked to Ava on the drive home and explained how important it is that she lets us know if she isn't feeling well. I think hearing the words from her surgeon helped her understand how important it is to be aware if something doesn't feel right. Signs of reherniation are respiratory stress, abdominal pain/distention or vomiting. 

"And we know that all things work together for good to them that love God, to them who are the called according to his purpose." Romans 8:28
So yesterday we were finally told (Something I already suspected for about a year.) that the spots on the x ray near her left diaphragm are her stomach and colon. Dr. S is not sure where the patch is. He thinks she may have a hole and her intestines are just there blocking it. Sadly the surgery is so massive that we are going to wait until she is showing sign before we proceed. I'm truly giving this to God. Pray for her continued health. No one is assured tomorrow. It makes life so much more precious. Be in the moment family and friends. I LOVE you all and are so thankful you are all in my life. 


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