Sunday, November 27, 2016

And Life is good...

Hello friends! It's been awhile since I've updated. Life has been so busy! Ava has had a few colds since the last time I posted. Many things have happened....

She turned 10! It was a milestone to us. How can ten years have gone by!

We are reminded daily of what a miracle she is!! She has such a wonderful, loving, giving and lively spirit! She embraces every minute of life.

At school she was asked to write thank you notes to people in her life. Ava shocked me completely when she told me she wanted to write the notes to her surgeons and her nurse practitioner. Her words gave me goosebumps. To know her little spirit choose these people. I was just so happy and proud.

Last month we went for her surgery check up. (We still go once a year.) She gave her NP the note after he was through looking her over. She is doing well. He was happy to see that her weight (69) was climbing and so was her height. (Almost 5 feet tall!) He then got Dr. Shilyansky, her second surgeon to come in to visit. He was thrilled with her progress. She gave them their notes and they were so thankful she thought of them. Her surgeon told her that the photo we gave him many years ago still sits in his office. He said each time he looks at it he is humbled by Ava and all her complications. (That brought me to tears...) God knows exactly what we need when we need it. Her doctors are proof of that. We are so grateful for ALL they did and continue to do!

Here is a photo of her thank you cards. On the inside she basically wrote "thank you for saving my life."

This Iowa City, doctor trip Brian came along so I got in on a photo which is rare. YES don't be shocked I've lost a little weight and no I'm not sick. I'm great! Just go healthy.

Halloween was fun. You know me I LOVE to dress up. Ava and I went to a few different things around town. Here is a few of our adventures and costumes.

We HAD to do a scary one. Those gorilla eyes are yours truly... Ava Lou! And me well I'm about to be eaten. But all was well. :)

Downtown trick or treating... I was Alice in Wonderland and She was Katniss Everdeen of the Hunger games.

Trunk or treat... we both went as "good" clowns. We said we wanted to change the perception of clowns. (Isn't this world just crazy?) We had a great time!

Thanksgiving went great. I have to tell you again I was so proud of this little lady. She came to me the night before Thanksgiving and asked if she could write a little something for the family that she could say on that day. I was so happy and wanted to help her. It was all her! I had to help her with a few words but here is what her speech said, 

"I am thankful for my family. My life started kinda hard. My mom and dad saved me from the hospital. My grandma and Aunt Amanda were there to look after me too. My sisters Lexis and Emeline had to go to school and act like nothing was happening to me. My cousins made me strong. There were times I had to stay home from school. In the end I want to thank Jesus for letting me stay with my family and making me healthy now." ~Ava

When it was time for her to do the speech she read it as loud as she possible could. It brought tears to many eyes of those in our family, myself included. We have been so blessed! Oh what a day.

All is good here with the Helmick's. She's doing so good in school and is trying to stay healthy. (That's a very hard job to do!) We love that you check in with us. Sorry I didn't update sooner. 

~Terri L. Helmick

Friday, June 3, 2016

Pain in her Side.

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.

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. 


Friday, February 5, 2016

Lung Specialist... coughing continues

Hello to all of Ava's followers. Ava continues to cough however last Saturday she got much worse. So out with the Prednisone, Albuterol and Atrovent. These things all seem to help her improve. (She's also on twice daily Symbicort.) Plus maxed out on her reflux medications (Prevacid 60 mg's a day and 15 ml's of Zantac a day.) She's been out of school this entire week. We have been focusing on giving her the treatments, rest and to just get better.

I took her to see her Pulmonologist Dr. Ahrens. (He is about to retire.) It was good to get a "second opinion" per say even if they work in the same office. He is the specialist that Ava was seeing for many years then a few newer doctors came on board. I like them both but thought his many years of advise would help me to feel better about why she has this continued cough. He thinks that from the recent CT scan and the bronchial scope that yes she has narrowing in her left lung opening (which er expected due to her being born with cdh) however he says that seeing her CT and that there is no sign of "not working" lung he thinks that is does work more than we thought it did. When she gets viruses and cold it can get bacteria in it since it is "damaged" thus the asthma and the need for lung medications. He is wondering that in the warmer months if the cough will disappear. Winter is just so full of illnesses that she could be getting a cold on top of a cold and sometimes even in asthma patients the normal steroid/ Albuterol regimen doesn't help "some" colds/viruses... they just have to work themselves through. Her lung function tests didn't show any improvement since last time we were there . I think she picked up a bad cold.

As we were waiting several of Ava's usual nurse practitioners and staff came to say hello. It's so wonderful to know they truly care about Ava. They can't believe how tall she is getting. Ava is one in a million!

I'm going to watch her. We didn't bring any antibiotics on board quite yet but that will be the next step as she has been on Prednisone for 6 days now. She seems to be a lot better today so we will see. Her and I had a good time yesterday. So we welcome all the prayers as she continues to get better. I have faith that God will stop this cough. Thanks for checking in on us. We love all the support!