Tuesday, September 27, 2011

The never seen birth video

You know I was thinking tonight as I was blogging on Ava's site. My friend Carmen was video taping during Ava's labor all the way up until we left for the hospital. I have NEVER watched that video. The tape is still in my desk upstairs. I want to see it but I'm afraid. I know there is a lot of good footage, but the end of the tape would have been hearing the heart rate decels and heading to the hopsital. I remember when we got home, late on January 1, 2008. Everything was exactly as it had been left. It was very surreal. The receiving blankets were still wrapped in a heating pad, there was blood splatters on the bathroom floor (from me), blood stains on our bed. I still remember like it was yesterday. And I still remember walking into our kitchen and seeing the camcorder laying on the table. Kenny asked me what I wanted to do with the tape, and I told him to put it away.... That was almost 4 years ago.

If you look at her picture story, you'll notice that it goes from here...which is about 15 minutes before pushing began.

To this just a few hours later...

I'm still healing over Ava's birth.  Sometimes the 'what if's' drive me crazy.  In those times I really lean on God a lot.  I remember the morning after I had her, I was siting up in my hospital bed channel surfing.  The only channel that would come in was the baby channel and they were talking about new mom's learning how to breast feed.  This was after the neurologist had come in and explained that Ava had lost all of her reflexes, including her ability to swallow.  I remember mourning the loss of breast feeding my baby.  I was sitting in the NICU when my milk came in, and I was surrounded by newborn babies.  Any mom knows that when a baby starts to cry, your milk starts to flow, it doesn't have to be Your baby.  I remember learning that my little girl would never eat by mouth was a mourning process in and of itself. 

I remember one Sunday morning at church, only a few weeks after Ava was born, we were having communion.  When the usher released our row to go up to the front to get the elements, I had to walk the entire perimeter of people seated in chairs on my way to the front.  Our church has a lot of babies, and still having babies.  I remember walking by (what seemed to be) a lot of babies.  There was this one little girl in particular that smiled at me.  She had the cutest curly hair, and was probably about 4-5 months old.  The tears began to flow, and just kept flowing the whole service.  One of our church members saw me and came up behind me when I sat down, and just grabbed me and started praying.  I completely lost it.  I remember the world seemed so heavy at that moment.  That seems like a long time ago, but those feelings still creep up from time to time. 

As hard as things can be, i still feel the Lord's presense very strong in mine and Kenny's lives.  There are times when I cry and cry and ask why us.  He always gently reminds me that He has things well under control.  So yeah I still have the occasional meltdown.  But don't we all?  I have people say to me all the time, "I could never imagine going through what you guys have gone through."  But I don't look at it that way.  Sure it's hard.  But I have an awesome husband who loves me unconditionally, best of all he loves God more than me.  I have friends who are going through things just as hard.  Different, but just as hard.  Some are dealing with sick kids, some are going through divorces, some have constant strife in their family.

Dear Lord, I ask you to be with each and every person reading this who is dealing with tough stuff in life.  Please meet them at their every point of need, and show them you are with them.  Thank you Lord.  Amen.

God Bless You All!


Fundraiser Update - 3 Weeks To GO!!!!

Watch Ava's Story and then make it a point to come out to support her on Saturday, October 15 at 3:30pm at The River Church in Delaware, Ohio.

The River
2419 State Rt 42 North
Delaware, Ohio 43015

Ava the Cuddle Bug

Around this house and among her nursing staff, Ava has developed Quite the reputation for being a cuddle bug.  If she had her way, she'd blow off therapy and playtime in lieu of just having someone sit and hold her and talk to her.  It's funny because everytime her [current] PT comes to visit, Ava will fight her on most of the positions, but as soon as it involves being on someone's lap, she loosens up and smiles for ya!

One of the big things we have to do Several times a day is massage and stretch her feet, ankles in particular.  Her right ankle has been giving us fits for months.  It is turning in.  We ended up deciding to have botox injections every 60 days just to keep it [somewhat] in check.  And it hurts her.  Imagine the worst pulled muscle you can imagine, and then imagine that someone has to massage and handle it several times a day.  Imagine how much that would hurt.  So of course she does not like it, in fact she cries almost every time we do it.  That information makes the pictures below that much more funny!

One of our nurses found a way to get Ava to relax while getting her ankles massaged.  Lol!!

"I hate my feet messed with, but I love being held!"

"I will NOT fall asleeo during my foot massage!"

"Okay.  I give in.  Just hold me and you can do whatever you want to my feet...."

Saturday, September 17, 2011

Cute Ava pics

No real stories to tell today, but I thought I'd share some cute pics of Ava =~)

Last Sunday at the River Church annual Car Rally.  Here she is sitting with one of her nurses.  It was a gorgeous day!

More Car Rally pics...

Stretching exercises...

Snuggling with Angie after a clinic

More pics to come...  ; ~ }

Friday, September 16, 2011

Tons of new pics

Hey everyone! I've been busy trying to make Ava's blog look really nice and add a bunch of pics and stuff! There's still a lot of work to do, but if any of you are blog junkies, please give me any tips you may have on how to make my blog look really good.

I like the free templates out there on the web, but I have yet to find any that will allow me to have the facebook link at the bottom of the post so that myself, and others, can share a particular post. So far the only templates I see that allow you to do that are the templates that come with blogger, which tend to be rather plain and boring, but I'm trying to spruce it up!

Remember, email me or comment on the blog with ideas:-)

Thursday, September 15, 2011

Fundraiser Update - 4 weeks to go - Updated Ticket Pricing Information

Please come join us on Saturday, October 15 for a Spaghetti Dinner Fundraiser to support Ava Ballenger in her battle against cerebral palsy!  Ticket prices are as follows:

Tickets for spaghetti dinner - $5/each
Tickets for prize raffle - $5/each

Please email me is you want to buy tickets!  We can settle up on monies at a later date!

God Bless,

Vicki Ballenger

Sunday, September 11, 2011

Can you imagine being entertained by Angels?

Try to stay with me, I'm about to get deep...

Ava is non-verbal. I mean she coos and grunts and such. But she does not make any identifiable noises, for lack of better terms. And it has only been since age 2 that she really even coo'ed much. But going back to when she was an infant, as soon as she would drift into dream land, she would start 'singing.' And it wasn't words, but she would vocalize at different ranges, and 'trill' is the best way I can describe some of the noises she would make. I remember clear back when she was only like 6 months old, her nurse and I would comment that she was talking to her Angels. So that was just to give you some history on the subject.

Well, for the past year or so, she has been crying when she wakes up from a nap. I mean not just grumpy, she wails like she is in pain or scared, or both. Before I say this please understand that I do not claim to know the ways of God, or exactly how things work in the spiritual realm. But I do know this. We serve a loving God, who does ALL things to the good of those who love Him. And I know He loves my little girl and has a plan for her little life. 
That being said, I have this theory. When Ava goes to sleep, I believe she is entertained by Angels and taken into heavenly places. I believe she has seen the face of God. Maybe when she sleeps she runs, and plays, and does all the things she should be doing right now if she were not handicapped. Maybe she even visits with my Mom, her other grandma who is in Heaven. Maybe when she is asleep she has no pain and can talk and laugh. We can only imagine what Heaven must be like. I mean there are thousands and thousands of accounts of people being taken to heaven only to return and tell us their stories.

So if she is entertained by Angels while she sleeps, she then wakes up in this world and has to re-adjust to her reality here. Is it any wonder that she wakes up crying?
Do not misconstrue what I'm saying. Ava seems to be a very happy child. And most medical professionals would call what she is experiencing neurological irritation. But do we reallllly know what these kids feel? I mean they can't tell us, so it is all theory really. Doctors like to believe they know it all, but they really don't. They say they can prove it with fancy testing, EEG's, etc. But I talked with one pediatrician who told me about the day he quit believing what tests showed. He told me about a 5 year old little boy who was basically, born without a brain, only a brain stem. This child should have been a vegetable. He said when he walked out into the waiting room this child was running around getting into everything. He said never again will he allow a test to direct his opinion of a patient.
So that is my theory on my Ava wakes up crying. I believe she is entertained by Angels while she sleeps. I believe she walks hand in hand with our Lord and talks with her grandma Sandy. I believe she experiences the wonderful things while she sleeps, that her current reality in this world cannot give her. And honestly, this thought brings a smile to my heart.
No one knows what her life will be like in this world, or how long she'll stay in this world. But I do know one thing. God has Ava in the palm of his hand. I was given this vision when she was sick in the hospital, and I was shown that she was taken care of. It gave me a great peace about her life.  I very much struggle when I see a little girl between the ages of 3 and 4 running around, sassing her parents, or whatever.  Because that is what Ava should be doing right now.  It is a big, big burden on both mine and Kenny's heart at times.  But God continually gives me peave about Ava's life. 

Kenny told me not so long ago...and the comment still makes me tear up.  He said when he hears a little girl call for her daddy is makes his heart heavy.  But he said he knows that one day he will "Dance with Ava in Heaven."  Ahhhh, what a tear jerker.  But so true!

Well, Good Night All!!


Blog under construction!

Please bare with me while I figure out a good, working template for Ava's blog. YOu may see a different design each time you visit, just be patient!



Monday, September 5, 2011

She's been so giggly lately!

Today at church I took Ava off the vent and onto her passy-muir speaking valve so I could hold and cuddle her without all the 'stuff' attached to her. As I was sitting there holding to her she kept throwing herself back and I was thinking she was uncomfortable or something. So I kept changing her position. But still she kept throwing herself backward.

Well once when changing her position I looked down and saw a big grin on her face. "She wants to play!" I thought to myself. I looked around and the whole church had their heads bowed in prayer. So I reached down and ran my fingers up her sides and tickled under her chin. "Hahahaha" Ava giggled loudly while throwing herself backward in my arms. I looked across the santuary and saw one of her other nurses (who now attends our church) and saw her looking my way and smiling. She had heard Ava giggle all the way across the room and was smiling. As I pulled Ava back up into a sitting position she swung her arm out in protest and tried to throw herself back again. "Ava we can't play right now" I whispered, smiling at her the whole time. Never did I ever think I would be scolding her, even if it was mildly.

Her antics did not stop at church either. When we arrived home I was making us dinner, and her nurse was in another room. All the sudden I heard a popping sound, followed quickly by the sound of her ventilator alarming that it had been disconnected. She was protesting being left by herself and quickly pulled her vent apart, knowing full well it would send one of us in there to check on her. She's one smart cookie!

Thursday, September 1, 2011

Fundraiser Update - 6 weeks to go.

Hey if anyone wants raffle tickets email me at vicki_ballenger@yahoo.com and let me know how many you want and I'll set them aside for you.  No need to send money, I can settle up with people at a later time.

Make sure to give me the following information on the email:
 *How many tickets you need
*Your name, address, and phone number
*If you (and yours) will be coming to the dinner