Sunday, August 26, 2012

Braving the Waters



Hello everyone. Ava’s been having a really hard time adjusting to Kindergarten. I’m not sure exactly what is going on with her. She did great the first two days which were both half a days. Then on Thursday her first full day, she cried after lunch time. Friday was a tough day for her. We were called only after about two hours of her being in school. She was crying and very upset. We don’t like Ava to cry because of her lungs so I opted to go to the school and comfort her. She was really scared and grabbed me when I walked into the room. I talked her through thing and offered to come back and spend lunch with her. She agreed and I was able to leave. At lunch she came running and threw her arms around me and started crying. I assured her she was okay and we averted her energy by eating lunch in a separate class room just her Brian and I. She seemed okay when we left. I picked her up that afternoon and she tells me she isn’t going back because she feels to scared. It broke my heart. I didn’t let her see my sadness for her fear. I reminded her that she would now have the next two days off due to the week-end. She didn’t understand. She started crying about school a few hours. She gets very emotional. I’m wondering if it is the regular “separation” anxiety or if it’s something more. She almost looked like she was having a panic attack on Friday morning. And Friday night she had a very long night terror. It took over her little body and I was very afraid for her. It’s always hard watching your child struggle. She had not had a night terror for several months. This has brought them on again. As always I’m concerned. Her teacher and her school is amazing and has done everything to help her. She has 24 other classmates. When Ava was very little she suffered from sensory overload which is when you get too stimulated you start to shut down. One of the signs of this is anxiety, high heart rate and crying. My gut tells me it is just more than normal “separation” anxiety. We are hoping tomorrow goes alright. I will have to talk to her teacher and see what the plan can be. If she is too upset I may have to take her to the doctor and talk about things that could help her.

On a brighter note our family was given a wonderful gift from Make A Wish… Ava wished for a trip to Disney World in Florida. We will be leaving late October. We are all very excited. Ava and all of us deserve this trip so much. We’ve all been through so much with Ava’s CDH diagnosis. So naturally I had to make a sign and take a few pictures. Also to the right of the blog you will notice a graph this is our team for the “Walk for Wishes” walk through Make A Wish that we will be participating in on October 14th. We are super proud to be helping this organization. If you’d like to make a donation you can go to this page.

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Please keep Miss Ava in your prayers. She seems to always keep me on my toes. Pray for a smooth ride and for her to be relaxed and unafraid at school.

Thanks for your love and prayers.


Wednesday, August 22, 2012


Hello Ava friends! Our Summer wound down with a trip to the Peoria Zoo and a baseball game. We had such a great family day.


She is growing SO much!





Ava with Homer the Peoria Mascot.


Okay so guess what came that I had so much anxiety about? Yes you know it… Kindergarten! We had a meeting with Ava’s teacher, principle, school nurse and well a few others too. (Everyone wants/needs to know about this little girl!) I’m so happy with the way the school is handling Ava. I explained her story to them and brought a few pictures of her at her worst. Pictures are worth a thousand words and in Ava’s case maybe a million words. I really feel they ‘get’ her.

You don’t know how long I’ve dreaded her going to Kindergarten, you know the place with “all those germs”? The place that has all those sick kids? I fear this germy world. So here is why I fear… for those of you who have been following Ava’s journey since birth know her very fragile start. When internal organs aren’t in their correct spots and surgery needs to be performed to bring stomach, intestines, spleen and liver down things are never quite the same. And not to mention us almost losing her at 25 months due to patch failing and getting digested by her small bowel. (Huh was she THAT hungry?) AND severe bowel obstructions! So when you see YOUR child laying in THAT hospital bed and doctors say, “Well we are hoping for the best but she is not doing so well” you kind of learn to adapt and pray and hope for the best. Therefore that is what I’m doing now as she goes to Kindergarten each and every day. I’ve been protecting her for almost 6 years. (Her birthday is in a few short weeks, yikes!) She’s been my shadow. It’s a very scary thing for me. I had a rough first day but I’m asking God to give me peace. He has done an AMAZING job giving us Ava’s teacher. She understands and is willing to accommodate my requests.

SO without further ado. Here is Ava at Kindergarten!

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Here is Ava with her teacher, Mrs. Weitzel. Ava really likes her and that makes me a little less nervous!

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Here is a few pictures of her school room. Her favorite spot is the kitchen!

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Here is her and her sisters on the first day of school. Lexis started High School. Emeline is in 7th grade and Miss Ava in Kindergarten!

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AND off she goes…

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Can anyone say TALL? Yes she is in the 95 percentile for her age.

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The first thing she said to me when I picked her up was, “Mom I was a little scared but I did okay.” It brought tears to my eyes because THAT was exactly how I felt!

I’d love if you continue to pray for Ava and her health. We really need her to stay well. Thanks so much for dropping by. I hope you all had an amazing Summer!