Good day everyone! It's been a while since I updated. She did have a coughing cold a few weeks ago but a little help from her inhalers and a five day course of Prednisone it stopped fairly quickly. I was very thankful for that.
Ava has been having pain on her left side for about 6 days now. As most of you follow you know that this is the side that her diaphragmatic hernia occurred on when she was born. The good news is that she's been eating great and her stools have been normal and frequent. (We keep a chart in the bathroom that she writes it down each time. Or at least tries to remember to write it down.) So yesterday we took her to see her AWESOME/THE BEST/GREATEST nurse practitioner. (With the exception of my sister Amanda since she is now an NP too!) He was happy to see her.
First we were off to ultrasound. They wanted to see if any of her scars. (Ava has a lot of them.) They looked at her initial horizontal scar from birth. Then they looked at her scar from her g tube and her drainage scar on the left side. We also saw her Gortex patch (fake diaphragm) on the left side. We learned or at least I did today at her large intestines runs right under her patch along with some fat on top of that. Her spleen is transverse meaning it right there under it going a different direction than normal. I did know that she had the ladd's procedure during on of her many surgeries. That is when they place the small intestines on the right side and the large intestines or bowel on the left side. (Normally you have your small intestines then your large bowel is underneath.) She also had her appendix taken out.... so I didn't have to worry about that. Can you imagine her having a pain and it being the appendix and it being in a totally different spot? I can and it would drive me nuts because even though they can chart where things are placed after surgery they can often move a bit.
So doctor Simon Kao did the ultrasound. He remembered us and especially Ava from all the years he has run tests on her. He was fascinated by her insides and brought another doctor along to explain what they were seeing. I'll have to say it was quite interesting. They don't see too many people like Ava everyday. She's a challenge to say the least. He couldn't believe how well she was doing. He even asked about Brian. He recalled how we were always there together advocating for her. It was great to see him! Here is Dr. Kao.... intelligent OH YES and he had an excellent memory. Awesome doctor to have on Ava's side!
Looking over all her scars he didn't see any hernia. (A hole in the muscle allowing the intestines to pass through.) So great news!
We then stopped into see Josh Peterson ARNP. He is always a breath of fresh air. He cares so much about Ava. He examined her and agreed with Dr. Kao that it could be stool in her bowels not coming out fast enough causing soreness. He also thinks it could possibly be scar tissue pulling since she is growing quite a bit. She is now 66 pounds and 4 feet 10 inches tall. So we are going to try a daily dose of Miralax and see if that helps make her side feel any better. If that doesn't work we will have to investigate more. Here is a photo of Josh Peterson. He has been a God send to us through these many years.
Ava has been having pain on her left side for about 6 days now. As most of you follow you know that this is the side that her diaphragmatic hernia occurred on when she was born. The good news is that she's been eating great and her stools have been normal and frequent. (We keep a chart in the bathroom that she writes it down each time. Or at least tries to remember to write it down.) So yesterday we took her to see her AWESOME/THE BEST/GREATEST nurse practitioner. (With the exception of my sister Amanda since she is now an NP too!) He was happy to see her.
First we were off to ultrasound. They wanted to see if any of her scars. (Ava has a lot of them.) They looked at her initial horizontal scar from birth. Then they looked at her scar from her g tube and her drainage scar on the left side. We also saw her Gortex patch (fake diaphragm) on the left side. We learned or at least I did today at her large intestines runs right under her patch along with some fat on top of that. Her spleen is transverse meaning it right there under it going a different direction than normal. I did know that she had the ladd's procedure during on of her many surgeries. That is when they place the small intestines on the right side and the large intestines or bowel on the left side. (Normally you have your small intestines then your large bowel is underneath.) She also had her appendix taken out.... so I didn't have to worry about that. Can you imagine her having a pain and it being the appendix and it being in a totally different spot? I can and it would drive me nuts because even though they can chart where things are placed after surgery they can often move a bit.
So doctor Simon Kao did the ultrasound. He remembered us and especially Ava from all the years he has run tests on her. He was fascinated by her insides and brought another doctor along to explain what they were seeing. I'll have to say it was quite interesting. They don't see too many people like Ava everyday. She's a challenge to say the least. He couldn't believe how well she was doing. He even asked about Brian. He recalled how we were always there together advocating for her. It was great to see him! Here is Dr. Kao.... intelligent OH YES and he had an excellent memory. Awesome doctor to have on Ava's side!
Looking over all her scars he didn't see any hernia. (A hole in the muscle allowing the intestines to pass through.) So great news!
We then stopped into see Josh Peterson ARNP. He is always a breath of fresh air. He cares so much about Ava. He examined her and agreed with Dr. Kao that it could be stool in her bowels not coming out fast enough causing soreness. He also thinks it could possibly be scar tissue pulling since she is growing quite a bit. She is now 66 pounds and 4 feet 10 inches tall. So we are going to try a daily dose of Miralax and see if that helps make her side feel any better. If that doesn't work we will have to investigate more. Here is a photo of Josh Peterson. He has been a God send to us through these many years.
A few pictures of her yesterday. Here was her in ultrasound.
When we got into the room she was very cold. So baby blankets it was!
We stopped and ate lunch at her favorite place... Steak & Shake. Then went to shop at one store. Huh image what she wanted... this hat. An Ava selfie!
When we left he shook Ava's hand and gave her a little hug. Wow all we have all been through with her! She is such an inspiration to so many. In a few months she will be ten. This is crazy to me! She's been doing so well. Looking back ten years ago I was so worried and thought that possibly my unborn child would pass away at birth. Little did I know of God's plan for her life.
Lexis (Ava's sister) graduated on Sunday from High School. We were so proud of her. Time seems to be flying by! A few pictures of the graduation.
And of course I had to have a photo booth!
I think of of the neatest, bravest and cool thing is she doesn't mind that her scars show. She is happy with who she is and I just love this!
We thank you for your thoughts,support and prayers for Ava. We truly appreciate all who read her blog.
~Terri
