Scoliosis Back Check up.

Hello friends! Ava's been doing well. She had a cold a few weeks ago. I started her on her asthma regimen of Symibcort, Albulterol, Atrovent and steroids and it cleared up in less than a week. So happy about that. There is so many illnesses going around right now. I seriously want to stay home and be locked up. Many of you know I watch my sister's four year old twins during the day while she works. They have had the stomach flu and the respiratory flu for the last two and a half weeks. It's been rough. Ava is learning to wash her hands and sanitize whenever possible. I'm a little OCD about germs... she may have gotten that from me!

I can't believe it's been six weeks since she got her brace. Yesterday we went back for an X ray check of her brace. The doctor says her brace is doing exactly what it's supposed to be doing. Ava's curve without the brace is 26 and when she is in the brace it lowers her curve to 12. We want Ava's curve to, not necessarily get better (although wouldn't that be a miracle) we just don't want it getting worse.

They want no metal on your body so we came prepared. She wore a bra that had no metal and a plain shirt with stretch leggings. (We caught the lady at the desk off guard....she said you will have to change out of your jeans... Ava says THESE are NOT Jeans they are leggings! Oh the Joys of what comes out of this child's mouth get me every time!)

This is her newest x ray. The first picture she is in the brace (yesterday) and the second photo is her without the brace. (6 weeks ago.) Seeing that change makes me smile! Ava says "I guess it is doing something!"

I've been so proud of her. She has really been wearing it for the 14 hours a day. So the deal we made is if she sleeps in the brace all night then she doesn't have to wear it to school. If for some reason she is not able to sleep in it at night then she has to wear it to school. Sadly even with all those sleeping hours she still has to wear the brace another 3 to 4 hours after school. She has no problem at all with the brace. It's just become part of her. This morning she had left it out in the living room and it was so bizarre to see. Thinking back wondering and asking God "WHY did I have to break my back and wear a stupid tight restricting brace?" Well now I know. I have so much empathy and love for her and this brace. So sometimes when we question why God allows bad things to happen I refer to things like this. I have so much more compassion for her.

The doctor wants us to keep doing everything the same. He wants to see her back in 6 months. Yikes I thought it would be sooner but if she has no issues I guess that is a good thing. Plus we all know how fast 6 months goes by!

Ava sent me this snapchat picture yesterday. I just HAD to share it. She's growing up WAY too fast. She's a good little girl with a sweet, kind and loving heart. She is so outgoing and not afraid of life. It's all so simple to her.

Thanks for stopping by and for those of you that pray for us THANK YOU so MUCH! We certainly can feel your love, support and prayers. God is good!

~Terri

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. 




-Terri