Tuesday, February 23, 2010

Surgical Check-up

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Hello Ava followers. I have some great news to share. Ava’s check-up went really well this afternoon. We were pleasantly surprised with Ava’s growth chart. Her weight was 31.7, which puts her in the 42nd percentile. Her height was in the 95th percentile!! Two years ago (before she reherniated) she wasn’t even ON the growth chart. This is HUGE! It tells me that she is doing excellent. Her body is not only healing but thriving! Dr. Shilyanski was very surprised. I made him a special collage. It says, “Because of You…Ava is Alive.” It sums up so many feelings we have for this man. He was a miracle worker with Ava. God used his hands on our daughter.

Ava to Dr. S

I thought you might like to see the process. Yes that is a pacifier in her mouth. She still loves that thing and we just can’t get her to part with it quite yet…..

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Blood pressure check. She sat there patiently and waited for it to beep.

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Then to the exam 27 room we went….she gets so excited to draw on the board. Her and Daddy were drawing some pretty good pictures.

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Wait…..Okay a SMILE guys. We got a smile!

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Daddy and Ava….I love this picture.

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“Which hand Ava?” See her tongue?

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And Miss Ava on the table. Isn’t she getting so big?

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We discussed preventative measures to keep Ava safe and healthy. I asked if we could do a CT scan to keep an eye on her diaphragm….her Doctor agreed quickly. He also asked if we wanted to do an x ray today. We thought that was a great plan. We will do the CT scan in June if the x rays look good today. Also Ava will be visiting the Spine Doctor in June as well. (Many CDH kids have spinal problems so we want to make sure she get thoroughly checked out. We don’t know what the future is going to be for Ava but it makes me feel better if we stay on top of things before they happen. I’m not good with surprises :)

Here is Ava doing the first x ray. (This was the VERY first time she didn’t cry for an x ray. It almost made me cry that she was growing up and wasn’t a baby anymore.)

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Here is Ava’s x ray picture.

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Here is a normal chest x ray. Interesting huh? Her left lung that was damaged and small at birth is now larger than her right lung.


This is the second one they took. She was being such a big girl :)

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And here is that x ray.

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I have to say my little girl has come a LONG way and I am extremely proud of her.

Our wonderful Nurse Practitioner, Mr. Peterson asked if I ever thought Ava would be this good……I answered, “No I never thought she would be this good.” I owe it all to God. He is the Handiworker. He knows and cares about my little Ava. Before Ava came along I had heard of Miracles, now I personally have witnessed first hand God’s Miracles. Wow is it awesome to behold!

Our way home the road was very bad. The snow was blowing and drifting and at one point the back of the Suburban started to swing to the right, then to the left. I felt for sure we were headed for an accident. I prayed and prayed for God to protect us all. I was calm and I believe that God took over the steering wheel and guided the car. We made it home safe and sound. It is an AMAZING feeling when you know that God is right there with you. So glad I made Him my friend many, many years ago.

Thanks for stopping by Ava’s site. We hope that Ava can provide some sort of inspiration for you and your family. We have been down the long/dark path and have not seen light for days and days. I’m here to remind you there IS light at the end of the tunnel. Please trust that God has you right where He wants you. This too shall pass.

Again some inspiring Bible verses that may help you tonight.

Isaiah 40:31 But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.

Matthew 7:7 Ask, and it shall be given you; seek, and ye shall find; knock, and it shall be opened unto you: For every one that asketh receiveth; and he that seeketh findeth; and to him that knocketh it shall be opened.

Jeremiah 32:27 Behold, I am the LORD, the God of all flesh: is there any thing too hard for me?


Sunday, February 14, 2010

Valentine’s Day

Hello to all out there in internet land! Things have been going great for us. In fact I am trying to let my “germ guard” down a bit. (That is extremely rare for me.) We have been going out to functions. On Friday night we went out to eat and then Saturday we went to Lexis and Emeline’s Tae Kwon Do testing. They were testing for their Orange belts…:0). Ava does not know how to act in public and we usually get stares. She is not fond of people she doesn’t know.  So all in all not much going on here and we LOVE it.

One thing that is a little hard is trying to discipline Miss Ava. She was “sick” for much of her life that she rarely could do much of anything to get herself in trouble. Well all that has changed and Brian and I find it challenging to teach her the good from the bad. I know all you Moms and Dads out there with special needs kids know exactly what we are going through. She needs to learn but wow is it tough on all of us.  With that said she is full of spunk and vigor and we LOVE it even though it does test us at times…;)

Here is a few pictures of the girls Tae Kwon Do.

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Emeline trying to break her board.

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Lexis breaking her board!

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It was a long day but we were very proud of both of them. It is wonderful doing “normal” family things.

So today was an opportunity to take some Valentine’s Day Pictures. Ava accepted the challenge gladly and Emeline was also game! Lexis well she did her own thing.

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So as you can see she is doing well. Her weight is 31 pounds. I’m always telling her slowly but shirley! She will be going to a surgical check-up on the 23rd. I can’t wait for them to see how great she is doing again!!

I’ll leave you with a few Bible verse that sums up my thankfulness and Praise to You Lord….

1 Chronicles 29:11-13

"Yours, O LORD, is the greatness and the power
and the glory and the majesty and the splendor,
for everything in heaven and earth is yours.

Yours, O LORD, is the kingdom;
you are exalted as head over all.
Wealth and honor come from you;
you are the ruler of all things.
In your hands are strength and power
to exalt and give strength to all.
Now, our God, we give you thanks,
and praise your glorious name."

Jeremiah 29:11

For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.

Thanks again for checking in on Ava. We are blessed to have you all in our lives to help us pray and magnify God in His healing hands!


Thursday, February 4, 2010

Attention CDH Parents….

Good evening All! I was asked to pass along this survey to any and all of Congenital Diaphragmatic Hernia parents. It is a very brief survey that will help in a big way.
Thanks in advance.
Ava is doing Awesome. I realized yesterday that her and I carried on a complete discussion. I am LOVING that she can finally verbalize her thoughts, wants and wishes!

The results of the survey...

My final for the survey.

*Results of the Recurrence of the Diaphragm Survey-
(Less than a fourth of the group participated in the survey.)
36% of the kids reherniatedOf the kids that reherniated 60% reherniated once.
41% reherniated more than once. (some reherniated up to 2- 4 times.)
Top three signs of reherniation were difficulty breathing, vomitting, and no appetite.
11% showed no signs at all.
The three top ages to reherniation (In order) were between 3-6 months, 6-9 months and 12-24 months.
Some in group reherniated up to twelve years old. (So it can happen at any age.)
Thanks to all that participated!