Friday, March 31, 2017

Check up DAY!

Hello to all our friends and family! Thanks for checking in. Ava had two appointments on Wednesday. We got up very early and made it there by 8 am. She saw her Pulmonary nurse practitioner, Cheryl. We really like her. She takes great care of Ava. She started the day with getting weighed and measured. They were all shocked by how tall she has gotten. Next we went to do her lung function test. She gets better and better each time. She is coming down with a cold but it didn't seem to affect her numbers. She has normal test results of a child her age. I find that Amazing... of course they can't separate your lungs and test them individually, so this means that Ava's good lung functions that of two lungs.

Doctor visit selfie!

So Cheryl was happy to see her over all jump in height and weight. Her height is 5'0.79 and her weight is 75 pounds. She finally got on the BMI chart (body mass index) We know she is growing and is healthy at that! We are continuing her same medicines. She is on a twice daily Symbicort inhaler. If she gets a cold we then do her regimen of albuterol inhalers and Atrovent. And if that doesn't kick it we bring the Prednisone on board. That too is a hefty amount. (20 mg's twice a day) Thankfully over this Winter we only needed steroid once. (A seven day course.) So that's great! 

She still loves to write on the chalk boards. Her writings always consist of her love for me, which blesses my heart. There is no doubt she loves her Mom! And of course her dad and sisters!

We then saw Dr. Ebach her GI doctor. She too was pleased with how Ava looked. We agreed on backing down on her Prevacid from 30 mg's 2 x's a day to just once a day. Yes you read that right... she was on 60 mg's a day. Her reflux is severe. Prevacid can cause your bones to be fragile so I'm hoping Ava's body does good with this change. If she stops taking the meds then she gets terribly sick and throws up and feels nauseous.... not a good thing at all. She still isn't quite old enough to take her medicines on her own. She does pretty good though. After all she is just 10... almost 11.

After her appointments we decided to check out the lobby of the new children's hospital. They have been building it for a LONG time it seems. It opened a few months ago. It is so nice. (I'm hoping and praying we never have to experience an over night stay.) So please keep the prayers coming.

I thought she MUST get a photo near the giraffe as "April" is all over the internet... any day she will have the baby calf. We check in from time to time. They said today is the day... we will see huh?

And the new theater... how big and AMAZING is this?

These were a few cool things on the wall. Ava loved them all.

This lobby is HUGE!

We decided to go shopping afterwards. What girl doesn't like to shop? I love my little Aya-baya!

I've been so busy I haven't had time for much of my passion... PHOTOGRAPHY. So I decided to sit Ava down the other night and get some great shots of her. She adores this bear. I often wonder how I ever got so lucky? Every day this special little girl gives me a huge hug and says this to me... "Mom do you know how much I love you?" And I say, "A LOT Ava." and she shakes her head yes. There is never a day that she doesn't do this? I get emotional at times. It's like she knows I need encouragement too. I give it all day long but getting it... well us moms we NEED it too. God knew I needed this child. Please don't get me wrong I LOVE my other two daughters equally as I do Ava. They are now teenagers and they get caught up in their own lives which is to be expected. And perhaps one day Ava will forget to tell me... and that will be okay. I just savor each and every day. Life is a GIFT! 

I always look to the future but occasionally when we make doctor's visits or I see an old photo, or when I'm reminded I can't help but think of this beautiful healthy little lady and the struggles she endured. I still have my facebook page that helps cdhers and their families. It serves as a constant reminder that we just never know if tomorrow will come. I'm so grateful for ALL that God has given me! We've been on quite the journey!

Thank you too all who come here, read about Ava and pray for her. It means so much to us all. God is good! I'll exit with a wonderful Bible verse about Our loving, God's GRACE... 

1 Peter 5:10 And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you.


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!


Friday, December 4, 2015

Procedures and Test Results

Hello to all Ava's followers! It's been a bit since I updated. She still has a cough. We went ahead and did the procedures her GI and Pulmonologist recommended. The day before Thanksgiving Ava had a Esophageal pH Test (An esophageal pH test measures and records the pH in your esophagus to determine if you have gastroesophageal reflux disease (GERD). The test can also be done to determine the effectiveness of medications or surgical treatment for GERD.), an upper endoscopy (a thin scope with a light and camera at its tip is used to look inside the upper digestive tract -- the esophagus, stomach, and first part of the small intestine, called the duodenum. ) and a bronchoscopy. (They were looking at the inside of the airways and lungs.)

For the PH test she had to be admitted for 24 hours. She was pretty excited about staying in bed all day eating anything she wanted and being able to watch movies and play on her Ipad. I for one was not thrilled as I had spent a lot of nights with her in the hospital and knew just what a hospital was all about. It had been about 6 years since her last overnight stay. We really need to get to the bottom of this constant cough.

This was Ava waiting for the procedures. See that beautiful smile?

We said a little prayer and off she went. She was ready. It caught me a little of guard when she returned. She was still sleeping and snoring pretty loud. I was so happy they didn't have to intubate her. It was a possibility we were aware of.... Emeline was with us, Those two are so close and she just had to be by her little sister's side. 

Ava was so sassy when she woke up. She was irritated very easy. But we were happy that things went as planned and she woke up finally after about 45 minutes. (Long nap.) After waking up she said some funny things. She told me that she was "a student" there. I told her yes she was a student at her school. She claimed that she was a student here at the University. Quite funny Ava!

We had to wait a little while as the x ray people were getting ready. They needed to make sure the ph probe was in the right stop. She was clearly out of it telling Emeline that she was irritating her. When she was not even by her or saying anything at all. (Poor Ava) After finally getting her settled into her room she started acting more like herself. Her and Emeline were back to being best buds!

Later on Brian came up to check on her. She is always excited when her dad is there. We were able to walk around the hospital. She enjoyed that.

One of our stops was at this place.... oh boy do I remember and have strong feelings about this floor. She's grown so much. Seems like a lifetime ago yet just yesterday. We were praising God we weren't on this floor!

Sadly Emeline wasn't able to stay so her and Brian drove back home. Ava was pretty tired so at around 9 she went to sleep. She slept great all night.... well me on the other hand I kept a watchful eye out and tried to close my eyes but couldn't come to a full rest. When she woke she was excited about ordering her breakfast. She loved getting whatever she wanted.... no limits!

This was her "purse" device she carried. It was hooked to the probe. Each time she cough, gagged, cleared her throat, was up or was laying down she had to push the appropriate buttons. She was a pro by the time the 24 hours was up.

We decided to make a Youtube video of the PH test. If we can help someone we will be happy!

I just can't believe how grown up she looks!

Here is what her stomach and esophagus looked like. All biopsies of her stomach came back normal. But as you can see there is a hole that lets food reflux back up. 

Finally I have talked to all the specialist and have gotten back all the test results. (It takes a while for some.) So the 24 hour PH probe showed that more than half the time the cough was due to reflux. It did get better after she took her second daily dose of Prevacid. (She's on the maximum dose aloud.) Our GI. Dr, Ebach said she was going to talk to surgery about her options. I never like hearing that! Can anything ever be easy? Finally yesterday I was able to get a hold of the Pulmonologist that did her bronchoscope. She said that her left lung (The lung that had all the organs in/on it when she was born) is narrow in spots. (It's restricted.) This is not a surprise to us. We knew her left lung was not right. We just didn't know the exact extent of it. The doctor thinks it could be a contributing factor of the cough especially when she is fighting a cold. 

A few days ago Ava's cough got a lot worse. I'm wondering if it is the start of a cold so the Pulmonologist wrote about 3 new medicines and one good old standby (Prednisone).
Atrovent HFA Oral Inhaler -(200 INH) Given only when she is very bad. Every 6 hrs.
Symbicort 160/4.5MCG (120 oral inhaler) 2 puffs, 2 x's a day
Prednisone 20 MG Tablets- 1 and a half pill 2 x's a day (when needed for cold)
Ipratropium Inhaled solution 2.5 ml- (use once ever 6 hrs as needed)

So this is the new plan. Please pray that this will help her. I really don't want her to go through anymore surgeries. I know with Ava nothing can be simple. I went to her school today to take yearbook photos for the smaller kids Christmas concert. After it was over I went up to Ava's classroom. She was so happy to see me. Her teacher let her go home early. She's been such a wonderful teacher. She's so much like me. She also has health concerns so she is vigilant about keeping her classroom as germ free as possible! It's so neat how God sends us the perfect angels to help us! Thanks Mrs. Behnke.

Again thanks for all your love, support and prayers. We appreciate you all!

~Terri Helmick