Wednesday, December 28, 2011

Celebrating Jesus

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Hello to all of Ava’s friends and followers out there. I can’t believe that Christmas came and went. A New Year is upon us and it seems I can’t keep up! We had a Blessed Christmas! Ava was pretty excited that Santa left her a Dora Kitchen set! She’s been a very good girl… or so she says!

I’d like to bring up a dilemma we went through recently. One of Ava’s photos (a picture of her very near death in the PICU) was stolen and used by a woman. She was claiming Ava’s picture was her sick son that had died of Cancer. I emailed her and asked her to remove it. I also informed the site where the picture was on. I was so disturbed by this. How in the world could anyone use Ava’s pain and our sorrow for their own bizzare pleasure? I was relieved to learn that the site took the picture down after five hours. Thanks to all my great supporters that helped me get it down. I think there are really disturbed people out there that need a lot of help. Ava’s emotional journey is something I wish we didn’t ever have to go through however I am AWARE of many more families we’ve helped along our way by sharing Ava’s story. It is battles like these that make me a bit sad we have those horrid pictures of Ava for people to steal. I keep telling myself that it all happens for a reason.

So now onto the Christmas pictures and all the Joy we shared!

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Ava’s Preschool Present to us! I LOVE this so much!

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And all the JOY these three bring…

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And Ava doing her Santa impression.

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Ava’s preschool brought to my attention that Ava’s hand strength is very weak. She has a very hard time even holding a pencil. We have a few ideas of why this is happening, one could be that she is just slower (since birth and being born with cdh … her normal muscle strength has been slow) and it takes her a bit longer to master fine motor skills. It may be due to her arm scar from the burn. She will be seeing a doctor for this very soon. We figure any help we can get will benefit Ava. We started her in hand therapy and she loves it. Her therapists name is Cindy and she is very nice. We go three times a week and each time Ava gets excited. She is gaining strength. We pray that it will return fully.
Here she is doing one of the tests.

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And her least favorite…

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I was shocked this morning when I weighed Ava.. 36.5 pounds. She gained a WHOLE pound! “Yea! Yea!” is all we kept screaming! We love weight gain of any kind… a pound for her is monumental!

I wish on each and every one of Ava’s fans a Healthy and Blessed 2012. More happy times and great strength to come! Thanks for your love, encouragement and prayers!

I’ll leave you with our Christmas Card Photo. We are Blessed to have these three Miracles in our lives! Each year (after Ava) I sign the cards like this, “Sending Miracles from Our Home to Yours!”

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Thursday, December 8, 2011

Christmas Play… “No Turkey for Purkey!”

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Hello Everyone! Ava is all over her cold. Wow was that a tough one but we ended up avoiding the hospital! She’s been doing SUPER. She’s back in school and last night was her Preschool Christmas Musical. We were SO proud of her. She got a little nervous before the play. She asked us if we could hold her hand the entire play. We told her that of all she’s been through in her life this wasn’t scary… but fun! She looked so cute walking in with her friends. She was the Pizza in the musical, “No Turkey for Purkey”. She remembered all the things she was supposed to do.


Here she is with her entire class. She is on the far right.


Here is very end…

We promised if she did good we’d take her to McDonald’s. She didn’t forget because after the play she came right over and reminded me it was time to go and get her ‘dinner’. She is such a silly girl. She wasn’t interested in the cookies and punch the preschool had going… she wanted her chicken nuggets!
Here’s the treats I made for the snack after the play. They were Christmas Tree Ball lollipop. SO yummy!

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Ava was a doll helping me ‘model’ the treats!

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I got a few pictures of her after by the gorgeous stain glass windows at Messiah. She just glows as you can see in the pictures. She is growing up!

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She’s been wanting to decorate for Christmas. I’ve been so busy with our little business with the girls “Lexis and Emeline Creations”. So finally today I got out a few decorations. She had forgotten about this Santa. She tells me, “Mom this Santa is BAD!” Only Ava!

Please continue to pray for her health as we go into Winter and the very cold months. She is so excited about Christmas and can hardly wait to visit Santa at the mall. If only we were all kids again! Thanks for dropping by!


Friday, November 18, 2011

Breathing Better


Hello all! She’s doing her ever-so-popular breathing treatments. She does the Albuterol every four hours (even at night if needed.) Then she does a Pulmicort through the nebulizer as well, twice a day. She’s a pro! Oh and YES she is Princess Ariel today as you can see!


I took Ava to the Doctor this morning to make sure her lungs were healing. I always worry a bit more on Fridays because the weekends. She is doing so much better. Doctor says she can now hear her left lung! She still has a cough but it is much more productive. Her stats over night were better as well. She sleeps on a mattress right by our bed. My eyes stare at her monitor much of the night. Her color is coming back!

Last night I did some bonding with Lexis and Emeline. We went to the Midnight showing of “Breaking Dawn”. It was great focusing on just them. Brian took great care of Miss Ava. Her and Daddy had fun too!

Please continue to pray. I believe we are over the biggest hump. We now have to keep her away from others for a week or so. Her doctor thinks that she shouldn’t go back to Preschool until after Thanksgiving break. I thought that was very smart.

Thanks for dropping by and checking on little Ava! God Bless.


Wednesday, November 16, 2011

Waiting it out…

Hello friends! These last few days have been very hard on Ava. Her lungs have really taken a hit from this cold. Monday night her oxygen levels were running 94-96. (Not horrible but also not Ava.) Her heart rate was also quite high. This made me very worried. She also coughed harder than I’ve ever heard her cough. It didn’t seem to let up. She complained of her lungs hurting. I took her back to the doctor yesterday and we debated putting her in the hospital. She could use a little oxygen to help her lungs heal. This is a hard decision. We know that with her being on steroids her immune system is down. We decided to give her a very strong antibiotic shot called Rocephin. It fights many bad bugs with the respiratory system. I strongly feel the need to stay on top of Ava’s natural body warnings to me. I then took her for an x ray. We learned that she did definitely have Bronchitis. Her left lung showed a few white areas but no pneumonia. Our decision so far has been to wait this out at home. Last night she seemed a bit better. We were finally able to get a few hours of sleep. Her oxygen levels were a tiny bit better and her heart rate had dropped as well. I’m keeping my eye on her and listening to my heart.

Please pray that Ava can kick this at home. We don’t want her to tire out. She is eating and drinking so this is a very positive thing. She has ‘false’ energy from the steroids, so she feels like doing things but we warn her it is not ‘real’ energy and her body MUST rest. We need healing prayers for her lungs. Her new dog is very concerned about her. He sleeps by and with her on the couch during the day. She loves him so much.

Thanks for your messages of support and your prayers. They really are very much appreciated.

Here is Ava and Frankie this morning…

Ava cold collage


Monday, November 14, 2011


Hello Ava friends! So you read the title? Yes Ava has bronchitis. We’ve been doing breathing treatments for six days now. Her cough was getting worse so I took her to the doctor this morning. I knew with colder weather comes sickness but wow did that creep up fast. She started her on a heavy dose of antibiotics and steroids along with what we were already doing, Albuterol and Pulmicort treatments. So now we wait and see. Any sickness with Ava puts me on edge as I know how quickly things can go from bad to a whole lot worse. I just have to put my trust in God and know that He’s brought her this far and He can heal her again.

Better news in our family… we rescued a small poodle dog and now he has made a great member of our family. The girls have been wanting a dog for awhile now. The opportunity was given and I decided that Frankie needed our help. We’ve had to retrain him but he is doing pretty good. Last week I took Ava and Frankie down to the train station for a little photo shoot. They both did so good.

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And my all time favorite!

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I just have to brief you on her Halloween costume. She was Daphne from Scooby Doo. She fit Daphne to a tee! Her second year of going trick or treating was even better than the first! She was overjoyed by her full sack of candy!

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She’s still working on this candy!


She is doing great in preschool. I just wish the germs would stay away. I know I can’t protect her from everything, just wished I could! She got her pictures taken at preschool but I just had to take a few she left as she looked so grown up.


I think I’ve caught you all up on Ava’s progress the last month or so. She’s been doing great. She can write her first name. We are working on her last. Please join us in praying for healing with this latest cold. We need her to stay strong and healthy.

Thanks again for all your love and support. God still blesses us richly.


Sunday, October 9, 2011

"Walk for Wishes"

Good afternoon Ava followers. It is such a beautiful day here in Iowa. Our family was invited to attend the third annual Burlington "Walk for Wishes" put on by the Iowa Chapter "Make a Wish." We were so excited. Ava was granted a wish through them a few years ago. We decided to wait until she was a little more healthy and a bit older so that she can remember her wish. What a wonderful organization. We met a few other kids there today that had already had their wish granted.

Here's a slideshow of the Walk today.

You know I had to doll our little "Make a Wish" girl up. I created her shirt, a hair barrette and threw together a matching tutu and Bam we were all ready to go! She was so excited as there was a bounce house and a free ice cream van. She was in awe of it all! She even saw her favorite friend.... Buzz the Bee!

So off we went walking and walking...

She had her very own sign!

This is "Lake Starker" it is so beautiful this time of year.

Ava trying to walk backwards!

We walked with approximately 50 people! Ava walked about a half a mile then we put her in the stroller and walk her the rest. We got a necklace at each lap. We did four laps... one hour and twenty minutes!

Ava and her sign. We are SUPER proud of her. Lexis and Emeline also walked and showed their support.

Here I am with Emeline and Ava.

Ava and Daddy... he never gets a Sunday off so this was a double blessing!

And for all the laps here is Ava's necklaces. She was so happy to finally be done!

After the walk we sat down and ate lunch. Ava loves throwing away everyone's trash. Unfortunately the garbage can was one she wasn't used to. She got her finger stuck in it and cut it. We think it isn't bad enough for stitches however we did have to go home early. We put antibiotic ointment and a band-aid on it. She is prone to finger accidents, not sure why... this is her third finger incident. Two were ER visits. We are happy this one wasn't. She is on pain medicines so she feels a little better. She had to end the walk on a good note huh?

Besides her getting hurt we had a great family day. We thoroughly enjoyed the "Make A Wish" picnic and walk. We can't wait until one day we are off on Ava's wish. I will be asking for donations next year. We will be getting a large team together to walk with us in honor of our little Princess!

Ava is loving preschool and now has many friends. She is learning so much and we can tell her brain is growing and expanding. She can now write her name. We are so happy with her progress. God has been good! Thanks for all your prayers. I know they come from so many of her loyal followers. We thank you!

Added update: We had to take Ava to the ER. Her finger did need attention. The doctor was very nice and decided against stitches but put steri strips on to keep her finger together. Poor pumpkin. She is now sleeping peacefully. :)


Wednesday, August 31, 2011

Happy 5th Birthday Ava!

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Hello Ava fans! I first want to say, “Thank You” to all our devoted followers. The blog has hit over 100,000 views since October 2008. It is with your love and support I continue to write and share Ava’s story. I also wanted to mention her carepage (this was my first Ava blog) has over 3000 visitors. (This means 3000 people have read Ava’s carepage.) She has almost 6300 messages of love, encouragement and strength coming straight from you all. I’m floored by your love and support. So I say again, “THANK YOU”. I hope Ava inspires you. I’d be honored if you’d leave a brief message of how you found out about Ava and when you started following her blog or carepage. I’ve been sharing our CDH story, Ava’s entire life. I never knew that keeping a journal would turn out to be so big for us.

If you’d like to read Ava’s entire story you can find it here on the blog. Just scroll to the top and under the title you can click on “Ava’s Story”. If you are a carepage follower you can read it here. I started a blog for CDH parents. If you are a CDH Mom or Dad and you want to share your child’s story please send me a message. I’d love to add your story to the blog in our “Featured CDH Child” section.

SO yep Ava turned 5 today. I made a very short video of the highlights of today. Hope you enjoy!

I did get a little emotional today. I thought to myself, “Things could be a lot different right now.” I always go back through and watch her birthday tribute videos I’ve created. I still can’t believe she survived this nasty birth defect. She was brought into our lives to make us stronger. She seems to teach me something new everyday. I’ll say this again, “I’m proud to be her Mommy!”
Enough talk here is some pictures of Ava’s day…
Ava and Mommy
Ava and Mommy

Balloon by the water copy


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Her special birthday bow and dress I made especially for her big day!


She really is quite the little lady. Her smile lights up the entire room.

Birthday Cake


Her excitement is contagious and makes you laugh! She asked who used the funnies in the newspaper to wrap her presents. She thought that was so funny!



Had to give you one more shot of her and her Scooby Cake. Brian’s Sister made this for Ava. “Thanks again Marsha for again making her exactly what her heart wanted!”

She's 5

Oh yes and if you are wondering… Preschool is going great. She loves everything about that place. I’m thrilled she has made many new friends. She is a social butterfly. She has this energy that people are drawn to.

Also another update, my Sister Rachel’s fiancee Doug is doing well with his kidney transplant. Thanks for the prayers!

Okay signing off. We love Ava’s supporters. Keep reading and praying for our little girl and I promise God will send a special blessing your way.


Monday, August 29, 2011

Ava’s 1st Day of Preschool!

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I made Ava this special bag so she’d feel my love! Also made the headband and capri pants… just because!

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Hello friends! Today was Ava’s 1st day of Preschool. She did awesome. I’ve been telling her for a month now how much fun she is going to have and how many friends she’s going to make. It was true!

As we got closer to her school this morning I looked back at Ava. She was deep in thought. We got out of the car and we went to the play ground as we were a tad bit early. Suddenly the bell ran and we headed for the “blue” preschool door. I watched as parents were taking their children in… many had stepped inside. She seemed confident as she got in line to receive her name tag.

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Here as she was… her FIRST day of Preschool! She has accomplished SO much.

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Ava waiting patient to put her bag away in her “cubbie”.

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Hanging up her coat. She insisted she needed a jacket. It was about 70 degrees here in Iowa this morning!

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I’m so proud of Ava. As soon as she got her things organized I knew it was time to say goodbye. I looked around as one boy was being comforted by his Mother. He was crying and didn’t want her to leave. I was wondering to myself if he would scare Ava and make her think of us parting and be sad. Somehow she read my mind. I bent down and gave her a quick hug. She looked me straight in the eye. It was as if time stood still… “Have fun my sweet Ava and Mommy will be back soon” I said. She pulled me close and gave me a quick kiss on the lips. Then said something that made me leaving her all okay… “I love you Mommy.” WOW it was exactly what I needed. I think she knew it was going to be tougher on me than on her. She was ready. This was the perfect timing!

I’d been feeling kind of anxious the last few days. She’s been through so much and this Mommy wants to protect her forever. I know that it is time for her to fly! I know God gave me a peace today that I’ve felt through out her CDH journey. It is a comfort that only He can give.

Picking her up was another special treat. She ran right into my arms. She didn’t stop talking about how much fun she’d had. AND she is now ‘okay’ with boys :) This was something new we had to discuss with her when we went to Open House on Friday. She didn’t know if she really wanted to be ‘friends’ with boys in her class. She excitedly told me that she only played with the boys as the girls were not much fun. Yes I have a pretty silly outgoing girl on my hands!

Here’s a few pictures of Open House on Friday.

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She LOVED their “Science Center”.

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Here is Ava with one of her teachers… “MOON SAND” is Ava’s favorite!

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Ava washing her hands… something this preschool is very known for, keeping germs down!

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Here is a glimpse into Messiah Preschool.

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I have a great feeling about this School. Please keep the prayers going for Ava. She needs to continue to stay healthy. This is a HUGE step for her and me. We know that with exposing Ava to germs increases the risks of potential problems. However she is ready and we know we with your Prayers and God’s help He will continue to keep her protected.

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What a GREAT day! Thanks for stopping by!