Saturday, August 29, 2015

A lot of August

Hello friends! Well this has been a busy month. I hope you are all happy and healthy! Ava has had two illnesses. In the middle of August she got a weird virus that lasted 48 hours. It was like a stomach virus and then it turned into a sore throat with a fever of 103. The good things was it left as fast as it came! Then last week she started coughing. No other symptoms just a cough. I can't ever recall she's ever just had a cough. I was a little baffled so after starting her on her "asthma regimen" after a few days of her getting worse I took her to our local doctor. She said she sounded junky. She wanted me to switch up our usual regimen with Iowa City and I got a little worried so I called her pulmonologist at the University. They told me to have her call them so they could explain their reasoning. She declined. That was fine by me although I was a little disappointed as I love our local doctor and she has saved us countless trips to Iowa City. However I'm still going to use her we will just have to agree to disagree on her Prednisone care in the future. On Wednesday Ava was getting much worse. I got her in to see her specialists in IC. They did a lung function test and it was compromised from her last healthy one. She has (acute) protracted bacterial bronchitis. It's due to her "non-normal" (my new word) lungs due to her diaphragmatic hernia at birth. It makes me sad to think she has to deal with the after affects of (congenital diaphragmatic hernia) her birth defect her entire life. They prescribed her two weeks of antibiotics. So hopefully we will see results soon.



Other HAPPY and EXCITING things that have happened this month.

We went to the annual Iowa Make a Wish reunion. We made it into a mini vacation.

 
 
 
If you look really close you can see Ava in the glove... I love the world of photo shop!


 
Then we went to Adventureland. What a fun family time!

 
 




 
 
Ava also started school this month. She was very excited to get back to a normal everyday routine! I love and adore her teacher. A strange but true fact. The year Ava was in the hospital in 2008 with her reherniation and bowel issues was the year her teacher was in the same hospital battling for her life with cancer. They share something very common... they are both strong fighters! So she was very excited to have Ava in her class. Most importantly she is exactly like me on the "germ" issues. (I LOVE that!) Oddly Emeline had gotten her as a teacher and the entire year had a sub due to her fighting cancer. If I haven't said this a million times on here I'll say it again. God has perfect timing and He knows exactly what we need when we need it!
 
Of course Miss Ava has to have perfect, back to hair style. So I managed to pull off this really cute look at home!
 
 
 
 
 
 
 
 
I also took the girls yearly photos. I have been blessed with the most beautiful girls inside and out. They all have genuine caring hearts. They always think of others before thinking of themselves. I thank God daily that he brought Lexis, Emeline and Ava into our lives!



 
 
 
 
Please keep praying that Ava gets over this cough. As always thank for your love, support and prayers. I believe all that pray God hears! Blessings to you as you walk in God's perfect path for your life.
 
~Terri

 

Friday, July 17, 2015

Appointment Day

Hello Ava followers. I feel like it's been a long time since I've updated. Hope things are well with all of you. Ava slowly got over the virus she had. Oddly she had a cough for a good month. We are happy that it finally found the door out! Yesterday we had checkups with three different doctors at the University of Iowa Hospital and Clinics. On our way...

 
The children's hospital is really coming along fast. We try to take a picture each time we go. Silly me grabbed my Canon but forgot to get a card in it.... so the phone had to do it all today!
 


 It was just follow through appointments. Here are her "stats" as we call them. Her temperature was 98.6. Pulse was 96. (Very typical.) Her respiratory was 22. Blood pressure was 92/62. Her height 4'7.83". Weight 57lb. 8.6oz. Body mass index was 12.98 and oxygen was 100%. First she saw Nephrology, Dr. Diana Zepeda-Orozco. Ava loves her! She was having bed wetting issues. We have finally gotten her down to only wetting the bed 2-3 nights a weeks so MUCH improvement there! She was so happy for Ava as are we! The next thing she did was a lung function test. She was very worried about it this time for some reason. She asked me if we could skip it. I told her that if she only did her best that was all we could ask of her. Funny thing... she did AMAZING! The best ever so far. Next she saw her pulmonary NP Samantha Lee. We have had her the last three visits and really like her. She gets Ava's personality and loves asking her questions. Ava answers them all! She was happy to see that Ava had few asthma flare ups and was so healthy. The final appointment of the day was by her GI doctor Dr. Ebach. She's so good with Ava. We were a little shocked she had lost a ton of weight. I told her she looked so good. After that she asked Ava is she even recognized her. We laughed! She was very happy with Ava's health. We told her that occasionally about 2-3 times a week she needs a "rescue" as Ava and I call it, antacid for stomach pain. She told us that it started happening more to please let them know as they would do an endoscopy to see if there was something more going on. She's on Prevacid everyday to control her reflux but sometimes it's just not enough. Ava was getting very tired of the visits so it was nice when we were all done.

 
Sitting there in the office I started remembering ALL she had been through in her life. Her birthday is coming up next month and I start reliving that all over again. I was telling Brian that as SOON as I hit the parking garage I get this panic feeling that she isn't going to make it. I have to look at her and assure myself that she DID make it and it's all okay. I've found myself suffering from post traumatic stress disorder. It happens when I least expect it. There can be a noise that sounds like a ventilator or someone in my family can become ill and it set me into a panic mode. I thank God every time that and reassure myself that things are good. God has been so good to us! I couldn't ask for anything more. The other day I was feeling down. (A lot has been going on in my immediate family with death and sickness.) I try not to let my kids see me sad. I'm always the strong one. The other day I was watching tv and Ava came in and curled up beside me, hugged me and said, "Mom I love you so much. You are the best mom in the whole world." Boy oh boy did I need that! As she left the room tears filled my eyes. THAT I told myself... that little girl almost didn't survive. THAT little girl 9 years ago was in my tummy and I was encouraging her each minute. I was telling her she was strong. She was loved and she could fight to stay with us. And you all know the rest of the story. SHE DID it! I marvel and thank God that He decided that I needed her right now. Ah... the love I feel. When I'm feeling down I think of God's wonderful, unfailing love. He knows exactly what I need and He knows your needs too! We decided to eat at Steak and Shake, a restaurant that we don't have in our town. Silly Ava right here...

 
As we were coming home from Iowa City we kept hearing the warnings of severe storms in our area. The closer we got the darker and scarier it looked out. Then they said the people on the road we were on should get off of it as a possible tornado was possible. We were pretty scared but found our way home. A town about 35 minutes from us got hit pretty hard by a tornado. We were lucky. We were safe! Praise God.


Thanks for checking up on Ava. We always appreciate your thoughts and prayers! We have been blessed with great health for her and I know it's in part to all her prayer warriors out there.

~Terri

Wednesday, June 17, 2015

20th Anniversary

Hello followers! It's been awhile since I've updated. Things have been going good until a few days ago. Ava some how got a cold. It's moving to her lungs now so she is coughing quite a bit. She's such a trouper though doing her steroids and her inhalers. She's a pro and makes it look easy. A few days ago she complained of a very sore throat. I took her to the doctor and she thought it was just a viral infection. That requires no antibiotics so we will wait it out. The very next day came the cough.... yes not what we want at all. Send her some prayers this will end soon. Ava is enjoying the Summer on our new trampoline! She's a live wire! No kidding! This was her on the last day of school.



Brian and I met 22 years ago today and also got married on this very day 20 years ago. Looking back I can't believe all the things that have happened in our lives. If you would have told me I was going to have three beautiful girls I would have blushed with joy! As I reflected on many pictures I couldn't help but put them into a video. As I was uploading I noticed that they wouldn't accept the music that I had chosen due to copyright so I had to go back through it and add something I had created myself. When Ava was in the NICU after birth I would sing her the song, "I Surrender All." It was one of my favorite songs growing up and it still is. We seriously didn't know if we would bring our baby girl home... and wow did God bless us! I recorded these songs only to my computer so they are not the best of quality.... however they do serve the purpose of summing up our last 20 years. God Bless!

video


~Terri

Tuesday, March 17, 2015

Allergy and Nephrology Appointments

Good Morning Everyone! It's been a little while since I've updated. Things have been running smoothly. Ava had appointments in Iowa City yesterday. There were a few things I was concerned about and wanted further testing.

I myself battled a very bad chest cough and cold the last few weeks but am finally back to normal. I prayed daily that no one else would get it and God answered my prayer as no one did!

Ava never complains of doctors appointments. She's such a trouper! We even had to leave at 6:30 in the morning. Almost everyone commented on her pink hair and how tall she is for her age. I'm thrilled that she is healthy!



First we saw Dr.Diana Bayer with Allergy/Pulmonary. Ava is "allergic" to many pain medicines, a few regular medicines and an antibiotic. I wanted to know if they were true allergies or if we could test her to see if she could tolerate them again if need arises? The doctor was quite sure that her reactions to the pain drugs had to do with "the typical" side effects most people get so she thought that if Ava needed them again in the future they would be "okay" to given. She explained that drugs like Morphine, Fentanyl, hydromorphone and other in that category normally cause itching. I understand this but when these drugs were given to Ava it was beyond bad itching. In the PICU she nearly scratched her nose raw, even after they gave her antihistamines to counteract the effect. There are a few other drugs that do odd things to her as well so we just decided to stay away from them and continue to call them "allergies" on her chart. A SEVERE allergy is one where your throat swells, you have trouble breathing or your blood pressure goes up or down drastically to the point of causing death. So she doesn't have THAT kind of an affect but with her the effects range from slow heart rate, itching, rash, burns, desaturations, and restlessness. ALL of those are very unpleasant. So with Ava we just do what WORKS well for her!

She had to do another Pulmonary lung function test.... again not one of her favorite things to do. Here is her doing her last one. She still hasn't got it down fully but she is doing much better. They are very hard even for an adult to do. First you have to breath normally then wrap your lips around a tube like thing, next you take a deep breath in and blow and blow all the air out of your lungs for about 15 seconds (without taking a breath) THEN take a deep breath in. It is harder than it looks. She had done about 4 before this one so she was pretty worn out.

video

There is a lot of waiting in between doctors and tests.... she takes her iPad and keeps herself entertained. She doesn't fit on the table anymore! Her legs are just too long.


Next doctor we saw was Dr. Diana Zepeda-Orozco from Nephrology. She deals with the kidneys. Ava had severe kidney issues in the PICU when she became septis in 2009 but once that was taken care of she didn't have any other issues. However, Ava has never been able to stop using pull-ups at night. It worries me that her bladder or kidneys may have an issue. She gave a urine test and that came back normal. She also did blood work. We will be getting those results soon. Ava also had an ultrasound of her kidneys yesterday. The doctor thought the ultrasound looked fine to her. She wants us to make Ava use the bathroom every three hours and limit her water at 7 pm.  She also wants us to start waking her at night to do potty. (All this we have tried with no luck.) I hate waking her. She is such a hard sleeper and then once awake she can't go back to sleep. But we will try and see. If after 4 months things are the same she will then have to go to a urologist for further testing. 

We ran into Josh, Ava's surgical nurse practitioner as we were almost done. It is always so good to see him. He has been through this entire life journey with us. It brings so many memories back and each time I see him I see hope in his eyes. If every person could have such an amazing NP as Josh this world would be a better place!

The children's hospital is still under construction so each time we get a picture. 



All in all a good visit. It was totally cool that when we stepped outside it was almost 80 degrees at 1:00. We ate at Ava's choice... Olive Garden! It's extra special when Brian can go with us. Ava adores her Daddy. Ava is doing well in school and loves her friends and teacher. It's awesome to see her so happy. A week ago I was going through Ava's blog... sometimes I just can't believe that THIS little girl has been through so much. We are so blessed and give God all the glory.

Thanks for checking in on Ava. As always we appreciate your love, support and prayers!

~The Helmick

Friday, January 16, 2015

Happy 2015!

Hello Ava followers! We had a big day of Iowa City appointments and tests! Ava first saw Dr. Reinking her cardiologist. We love him! (It's a bonus that he's easy on the eyes.) He listens to Ava and me. He also realized that as I told him in November Ava was NOT her normal self as he could clearly see today. She is a wild child! She speaks her mind and has a hard time sitting still. It was good to take her to an appointment HEALTHY so they can see her in her good times too! The results of the Heart Holter monitor in November showed that her heart was strong and healthy. It did bring concen to him that her heart rate dropped to 42 beats per minute while she slept. He was happy to hear that her heart rate returned to normal shortly after the medicine (Zithromax) left her system. I strongly feel this was the reason for her slowed heart rate.

Dr. Reinking checking her pulse. She laughed at him. He commented that he loved her penguin socks.



She is growing like a weed. She weighs 54 pounds and her height is 4 feet 6 inches.

She got another EKG while there... she's a pro at this!



He thought we could skip doing another holter test as she seemed back to normal but I told him I'd really like to do one to get her real baseline "normal" heart rate. He will be shocked at the difference I know it! Here is how different she was... her appointment in November when she was having the lower heart rate was 62 in the office. Today she was 92. EVERYTHING she was doing was the same. She was just sitting on the table. This was NOT normal for her and VERY scary for me. She's always had a SUPER high heart rate.

So he absolutely, with no hesitation agreed that we could do the test. Here is her getting hooked up in case you aren't aware of what a Holter test consists of... she wears this for an entire 24 hours. It hooks to her jeans. It's very light weight and easy to wear. There is five wires that connect to the monitor. She is supposed to do everything as she normally would. I guess playing "Just Dance" with Emeline is okay then.... that's what they are doing now!


Here is Ava getting her heart holter monitor on today.


We then had her Pulmonary function test are a group of tests that measure how well the lungs take in and release air. and how well they move gasses such as oxygen from the atmosphere into the body's circulation. Ava is still "learning" how to do this test. It's tough on her. Today during the test Ava got really discouraged. She started to cry. We tried to tell her she was doing a wonderful job and that it was just a test to see how she could do but if she didn't feel like she "could" do the test that was okay too. It's not normal to take a deep breath in then blow all the air out of your lungs for 8 seconds then take a deep breath in. She will get better with age and practice. The test shows that her lungs are pretty well for all she's been through. Sadly there isn't a way to separate the lungs and single on out from the other.

Here was part of the test. As you can see she is still learning...


Ava waiting patiently... LOVE her ipad in these times!


We saw a wonderful nurse practitioner named Samantha Lee from Pulmonology today. I really liked her! Ava was so tired of being there so she was being onry. We discussed possibly doing a ventilation-perfusion (VQ) scan. It is a nuclear scan that uses radioactive material to examine airflow (ventilation) and blood flow (perfusion) in the lungs. I was always a little scared to know exactly how bad Ava's left lung was but now I think that knowing is a good thing PLUS we can have a baseline because... could it possibly get better or worse? That's what I'd like to know. It will not change Ava's care or medication but it will give us more answers. She was going to check on it and let me know soon. We set up another followup in 6 months. All in all it was a great day.

Going there (to the children's hospital) makes me feel such gratitude. SItting there waiting... brings back so many bad memories. I see child after child very sick and some the way Ava was... hanging onto life in some ways. Ava is such a Miracle and God is to be given ALL the glory. We've been so BLESSED. I try not to take it for granted yet not dwell on the struggles. I went back through her blog and want you to see how AMAZING GOD IS! This was just 6 year ago to the day. We were dealing with an open stomach AT HOME and IV and g tube feeds. We were afraid for her future as she wasn't getting well but stuck in sickness. Her brain stopped learning new things. Her full focus was on getting better... but she STILL could SMILE! How did we do it?? She's come so far!


She's a trouper! We pray that 2015 is healthy and she will continue to thrive! We cherish your love, support and prayers. Here is a few pictures I took of her and her sisters not long ago. Life is a challenge sometimes but worth EVERY second! All of our girls are such gifts from God. I'm so proud of all of them!





Love and cherish all the time you have here.... God has special plans for ALL of us!

~Terri Helmick