Today I laid to rest an old friend

Little Bita Coker "Beauty"

by Marshall Coker, AQHA 2X Supreme Champion

1984-2011

Today I laid to rest a lifelong friend.  I have been grieving her death for weeks leading up to today.  It was hard to fathomparting with her.  I mean...I have had her since I was 15..I'm 38.   To say Beauty has been with me through all of life's ups and downs is an under statement. 

I remember the year I got her.  My Mom and Dad had recently divorced, and life was really hard for me at the time.  My cousin Earl wanted to get back into horses but didn't have the time to dedicate since he was a busy attorney at the time.  So I remember he told me if I found the right horse and set everything up, he would consider making the investment.  So I started right away making phone calls, researching blood lines, etc.  And I found Beauty. 

She was just a 2 year old when we got her.  And since she had not been handled much, the first couple of years were, well, interesting...  But around the age of 6 she really came into herself.  And it was also around this time that people would just come up and start talking to me about her, about how they couldn't get over how pretty she was.  She Was pretty, picture book pretty.  Up until she was about 10 I had offer after offer to sell her, and I just couldn't.  She was family.

Beauty always had a way with kids too.  So many little children experienced their first ride on a horse on Beauty.  I remember when my niece Jessica was just little, maybe 18 months or so, she would come stay with Mom and I and right at the crack of dawn she would come find me and her little fingers would peel back my eye lids and say in the cutest little voice, "Aunt Dicki, when are we going to go feed BEEEUUUTTTYYYY?"  Lol.  She had to annunciate each syllable of Beauty's name.  So Jessica also had her first horse ride on Beauty.  It was so cute too, because as soon as her little butt hit Beauty's back she would squeal and giggle as she held onto Beauty's mane.

Once I graduated from highschool, I still continued to do barrel racing, on a small scale, mostly local county rodeos.  Beauty loved the barrel pattern.  As soon we lined up to go in the ring she would start hopping up and down with her front feet, like she couldn't wait to get going.  Aside from barrel racing and showing, Beauty was just my buddy ya know?  I can't even tell you how many times I had a bad day at work or a fight with a boyfriend, and I'd walk out to the barn, bury my face in her mane, and just cry.  She would always reach around and nuzzle me as if to say, "It's ok, I'm here for you."

There are so many memories I have of Beauty, I could probably write for hours and still not cover everything.  I just wanted this post to honor such a great horse, and great friend.  A horse that crossed the boundary long ago of just another horse, she was family...and she will never be forgotten.

Beauty, I hope that now you are in horse heaven somewhere, running with no more pain in your legs.  Maybe Mom is even getting a chance to ride you now that you both have been restored to total health.  I love you Beauty.  There will never be another horse like you.

"Beauty"

1984-2011

I promise to update soon

I am sorry I have not updated lately:~( I have not been feeling very well...to say the least. I am approx 7 weeks along right now, and just started feeling sick about 4 days ago. There is lots to update, and I promise to soon! Just bear with me while I deal with this morning sickness.

God Bless,

Vicki

I promise to post updates soon

I am sorry I have not updated lately:~( I have not been feeling very well...to say the least. I am approx 7 weeks along right now, and just started feeling sick about 4 days ago. There is lots to update, and I promise to soon! Just bear with me while I deal with this morning sickness.

God Bless,

Vicki

I promise to update soon

I am sorry I have not updated lately:~(  I have not been feeling very well...to say the least.  I am approx 7 weeks along right now, and just started feeling sick about 4 days ago.  There is lots to update, and I promise to soon!  Just bear with me while I deal with this morning sickness.

God Bless,

Vicki

Our BIG Announcement!!!

I am so excited to announce that Kenny and I are EXPECTING A BABY!!

Our lives have been so crazy for the past several years that the thought of ever having another baby was just a distant wish. The year after Ava was born was consumed with just trying to survive, and then the next couple of years were consumed with getting my nursing license.
It was sometime last year we were talking one night and the topic of another baby came up, and I was just blurted out, "I really want another baby." I confided in Kenny that I felt robbed of Ava's newborn experience. I had my little girl, yet...I didn't. For the past 3 1/2 years I have avoided play dates, birthday parties, you name it. It has gotten easier, but it's still not easy. Another special needs mom that I know said she had two special needs children and was then blessed with a third healthy child.

So back to mine and Kenny's conversation...

I told Kenny that I was experiencing an internal battle. One part of me wanted so badly to have a healthy baby. The other part of me kept getting caught up in what others would think.."People will think I'm nuts for getting pregnant again after Ava's birth," or, "Maybe I'm too old." And many others... But ya know what? I wasn't exactly a young first-time mom. I was 32 when I had my first baby, 34 when I had Ava, and had healthy pregnancies with both. With Aohdan I Did have a touch of gestational diabetes, but was able to control it with diet. With Ava I had no problems at all. My blood pressure the day I went into labor was 112/54. The biggest thing I am worried about is that I have packed on 35 lbs since Ava's birth. And I have noticed that my blood sugar is more 'touchy' this time aorund. But I have a wonderful OB that will take great care of us, and I will be delivering in the OR just in case anything goes haywire. Were not taking any chances this time.

So please just keep us in your prayers. We are so excited to be pregnant again, but we are battling anxieties and some fears. We just want so badly to hold a healthy, crying, pink baby at delivery.

Kids say and do the cutest things

After Kenny and I confirmed we were expecting, we told Aohdan that "Mommy had a baby in her belly."  Well Aohdan thought I said "Bug" and proceeds to go into the kitchen and get a spoon out of the silverware drawer.  He comes walking towards me and I asked him what he was going to use the spoon for and he says very matter-of-factly, "Mommy, I'm going to get the bug out of your belly."  Lololol.

When I clarified that I said "Baby" and not "Bug," well then he wanted to know how it got in there and when it was coming out.  Oh boy... 

Our BIG Announcement!

I am so excited to announce that Kenny and I are EXPECTING A BABY!!

Our lives have been so crazy for the past several years that the thought of ever having another baby was just a distant wish. The year after Ava was born was consumed with just trying to survive, and then the next couple of years were consumed with getting my nursing license. 
It was sometime last year we were talking one night and the topic of another baby came up, and I was just blurted out, "I really want another baby." I confided in Kenny that I felt robbed of Ava's newborn experience. I had my little girl, yet...I didn't. For the past 3 1/2 years I have avoided play dates, birthday parties, you name it. It has gotten easier, but it's still not easy.  Another special needs mom that I know said she had two special needs children and was then blessed with a third healthy child. 

So back to mine and Kenny's conversation...

I told Kenny that I was experiencing an internal battle.  One part of me wanted so badly to have a healthy baby.  The other part of me kept getting caught up in what others would think.."People will think I'm nuts for getting pregnant again after Ava's birth," or, "Maybe I'm too old."  And many others...  But ya know what?  I wasn't exactly a young first-time mom.  I was 32 when I had my first baby, 34 when I had Ava, and had healthy pregnancies with both.  With Aohdan I Did have a touch of gestational diabetes, but was able to control it with diet.  With Ava I had no problems at all.  My blood pressure the day I went into labor was 112/54.  The biggest thing I am worried about is that I have packed on 35 lbs since Ava's birth.  And I have noticed that my blood sugar is more 'touchy' this time aorund.  But I have a wonderful OB that will take great care of us, and I will be delivering in the OR just in case anything goes haywire. Were not taking any chances this time.

So please just keep us in your prayers.  We are so excited to be pregnant again, but we are battling anxieties and some fears.  We just want so badly to hold a healthy, crying, pink baby at delivery.

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!

Vicki

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...."

Aohdan Interview 1-GFCF for over a month

This interview was taken using the handy FlipVideo HD Camcorder that Generation rescue so gratiously provided for us to use while involved in the Family Grant Program (thanks Gen Rescue!!!). Anyhoo, I thought it would be really cool to do a series of 'Aohdan Interviews' to really watch his progress as he makes the journey through biomedical and the Gluten-free, Casein-free diet.

In this video you will notice he answers questions fairly well. But notice how some of the questions he doesn't seem to understand what I'm asking and gives an answer totally unrelated? Before we started the GFCF diet, he would just get mad and yell at me if I asked him about his day at school. So this is a big improvement over just a month ago! Very excited!!!http://gfcf.com/

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...  ; ~ }

GFCF Pizza Pockets

When we decided to go GFCF, the one thing my son reallllllly cried for was pizza rolls.  Ever looked at the label on a package of commercial pizza rolls.  Ummm, yeah....talk about a preservative fest.  When I really read the ingredients I was shocked, and a bit ill.

So I made it my mission to make my son GFCF pizza rolls, or at least something close.  Here is my list of ingredients:

Namaste Pizza Crust Mix

Pizza Sauce

Daiya Mozzarella Cheese Shreds

Quite possible the best pepperoni EVER!

*Side note*  If you just want to make pizzas, one package of each of these ingredients make exactly (4) 9" Pizzas.  I bought these little cake pans and they work perfectly and are the PERFECT size. 

But back to the pizza pockets...

First I mixed up the batter...  Can I just say I LOVE my Kitchen Aid?  Seriously one of the best investments I've ever made!

And lightly cooked the pepperoni...

 

Then I cut up the pepperoni in tiny little chunks...

 

and mixed together the pizza sauce, Daiya mozzarella shreds, and cut up pepperoni chunks in a mixing bowl...

Next I spooned 2 TBSP of the Namaste Pizza Crust mix into each cup cake hole, Spooned 1 Heaping TBSP of the sauce/pepperoni/cheese mix on top, and spooned 2 more TBSP of the pizza crust mix on top.  I then had to take a spoon and spread it carefully so all of the sauce mixture was covered.  This is what they looked like before going into the oven.  I baked at 400 for approx 15-20 min.  It may take a little longer, so if you make these at home you'll have to keep checking them....

And here is the finished product!  See how the sauce mixture is sort of oozing out the side.  They were Delish! YUM!!  Best of all?  Aohdan loved them, and that made it worth it!

I will try to post all of my cooking adventures!

God Bless,

Vicki

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:-)

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

Behavioral changes

Before I get into the meat of this post, it is imperative to understand how much Aohdan adores his iPad.  If we ask him to put it down, or shut it off, it is MELTDOWN city! 

This is our life.

One of our nurses also has an iPad, and Aohdan will often help himself to her's because, you know, it's 'different' than ours.  Lol.  Nightime is the worst though, or when Jennifer goes home and has to take her iPad away.  Aohdan usually yells and cries and just generally throws a fit.  Well tonight, Aohdan was watching a movie on Jennifer's iPad and she was giving me report on Ava and heading home.  She simply said, "Aohdan, I'm going home can I have my iPad?"  He simply said, "Ok.  Here."  And handed it to her.  Not a single complaint.  Jennifer and I just looked at each other like, "Did that really just happen?"  It was definitely a change from the norm, but GOOD!  So suffice it to say we have defintely noticed some positive changes since starting this diet.

I still remember that psychologist from Children's hospital telling me, and I ""..."The GFCF diet is folk medicine.  It is not scientific, and parents who think they see  benefit are only experiencing a placebo effect."  Well you know what Dr. ----, you can take your negative attitude and shove it, because I am well aware of what 'scientific' means.  Here's what 'Scientific' means...

"a method of procedure that has characterized natural science since the 17th century, consisting in systematic observation, measurement, and experiment, and the formulation, testing, and modification of hypotheses."


So yeah I am prettttty sure that behavioral changes from the GFCF diet are able to be 'observed, measured,' and all the rest of it.  And the placebo effect?  Come on...  Moving on now...

I'm sorry, I don't mean to sound bitter, but what bothers me most is hat this man, and others like him,  is that he is in a position of influence!  I'm a strong thinker and rarely ever take advice without researching it.  But a lot of parents blindly follow what Dr's say!  I still like the vaccine argument...So Dr. ---, explain to me again why I had 9 vaccines growing up, and my children get 35+?  Then I sit back and laugh to myself as they use fancy medical jargon to explain why our kids get all this crap into their system. 


Going off topic, vaccines are a topic for a different post, and not tonight. 

Well, goodnight all!

May God Bless you and keep you!

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!!

Vicki

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!

Thanks,

Vicki

Blog under construction!

Please bear 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!

Thanks,

Vicki

Second day of school - MUCH better

Last Thursday, 8/31, was Aohdan's first day of school.  But the school only took 1/2 the kindergartners on Thursday the 31st, and the other 1/2 on Friday the 1st.  Someone told me once that kindergartners are like 'herding cats' (lol) so the staff wanted to make certain there were plenty of hands to help get the newest members of the school well adjusted=)

As you all know, his first day of school did not start off well.  But today was much better!  He talked to me about 'Miss Julie' picking him up, even though he did spend a few minutes making comments like,

"School is DONE."
"I already went to school Mommy, no More!"
"There is no school today"
"School is sick"
"I am sick"
"These boots hurt my feet"
"These socks hurt my feet"
"I don't want pancakes, I want eggs"
"I don't want eggs, I want pancakes"
"Sissy can go to school, I'm staying here"
"My iPad needs me here"

...Uhhhh....I am NOT kidding about these comments either, lol, all in a matter of about 10 minutes.  But when it came to getting his coat on and heading out to the bus stop, he was fine!  He smiled at Miss Julie and walked on the bus and found a seat with no problem.  It was a much easier morning to say the least.

The picture below was actually a picture of the first day of school, but it was so cute, I'm including it again!

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!

We're pretty much casein (dairy) free.

Up until this weekend we've been strict on the gluten portion of the GFCF diet but we have still been giving Aohdan 'raw' dairy products such as raw cow/goat milk, and ice cream (sparingly) made with raw cream. We've also been using homemade butter made with raw cream.

Well, this weekend was it! All dairy is officially gone! I made a trip to whole foods and bought stuff to replace butter, milk, and ice cream.

*I replaced raw cow/goat milk with unsweetened almond milk
*I replaced the butter with earth balance vegan buttery sticks and coconut oil
*And I replaced regular dairy ice cream with coconut milk ice cream. It is delish!

So tonight for dinner he actually asked for his pizza, and then he finished his pizza and asked for his "new ice cream." His behavior today has been overall very good. He had a melt down at church today because he wanted to go to his friend Tyler's house. Since then though he has been really good. He even said "please" and "thank you" for stuff today.

So I've come to a realization that dairy is probably not good for me either.  I may not be 'allergic' persay, but since I was a kid I remember getting this mucousy feeling in my throat everytime I drank milk. And I mean everytime. I never did much care for milk growing up unless I was eating something very sweet, and it had to be ice cold. I tried a glass of Aohdan's almond milk and I LOVE IT! Another perk is that it only has 40 calories per 8oz glass. Regular milk (2%) has 110 I believe.  In reading symtoms of dairy intolerance, I pretty much have all of them.  Not that I'm jumping all the way on the band wagon, but if cutting way back on dairy (or eliminating it altogether) increases my level of health...it just makes sense right?

Have a great evening and God Bless!

Vicki

I am pretty excited about this journey, and I'm excited to get my baby back. I am excited about getting Aohdan to a point where he feels good.

School Update

I'm not sure who all I talked to about our final decision regarding Aohdan's school....but we have decided to put him in kindergarten at our local school district. We actually did get notice from Haugland's that there was a spot for us beginning on 9/16, but I was feeling very anxious about the drive to Dublin 5 days a week. It just felt like so much to put on our, already piled-high, plate.

So I called the school administrator and had a long talk with her about my worries and concerns. She really eased my mind a lot! She basically told me that Aohdan deserved the chance to show us what he could do. And you know what? She was right. The morning that school started, I got Aohdan up early and made him a good breakfast of eggs and pancakes (gluten/casein free of course) and let him play on the iPad for a little while. As soon as I mentioned that the school bus would be here he started crying and whining and complaining. Ahhhhh, it was so hard to listen to. I longed for a child excited to do something. Instead it felt like I was being drug down into that pit again...

So needless to say I was really worried about how his first day of school went. How awesome it felt to hear the administrator inform me the next day that Aohdan had an 'excellent' day at school. Yayyyy!!

First Day of Kindergarten

Aohdan's First Day of Kindergarten from Vicki Ballenger on Vimeo.

Our Story - 38 Min Documentary

Ava's Story from Vicki Ballenger on Vimeo.

Ava's Story - The Full Documentary

Ava's Story from Vicki Ballenger on Vimeo.

Fundraiser Update - 6 weeks to go.

RAFFLE TICKETS ARE FOR SALE!!

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

Don't judge parents until you've walked in their shoes

One of the hardest things for me is that, often, Aohdan just doesn't seem happy.  He yells, wines, cries, you name it.  And he repeats back the things he has heard Kenny and I say to him.  It is like pouring salt on an open wound to hear your child say to you, "Mommy!!  I said QUIT I'm NOT going to tell you again!!  Now knock it off!!"  It is like everytime I lose my temper, he is like a tape recorder that remembers EVERYTHING I say.  And then guess what happens?  I sink into the 'I'm a horrible mother' pit of despair.  Aohdan is not an easy child to parent, but I love him with all my heart.  We try our best to not spank him, but occasionally he does get a swat on the behind.  And I do mean occasionally.  Like once a month.  But to hear how he carries on in public, you would think he was beaten daily.  I mean it is hard.  This is an example of what happens.

I take him to the local Denny's as a treat, I'm trying to do something nice right?  I mean we've taken away wheat, dairy, artificial food dyes, and so much other stuff, that I do everything I can to make him happy.  So we get a seat at the local Denny's, oh and we have to sit in this one particular booth and he has to sit on the same side every time or he is not happy.  So we settle into our favorite booth and he decides that he wants his chocolate milk BEFORE he eats.  SO I tell him "No" that he has to eat first.  So immediately he is in a bad mood.  Then the waitress comes to take our order and looks at Aohdan, who is now extremely winey and complaining, and says, "Hi Aohdan how are you today?"  To which he responds by yelling at the top of his lungs "Don't look at me!  I said No!  I'm NOT gonna tell you AGAIN!"  By now most people in the restaurant have glanced in our direction.  So I tell the waitress to come back in a few minutes.  At this point Aohdan is still talking loud and making a scene.  That's it.  We're taking a trip to the bathroom.

I don't say a word, I simply get up and quietly take his hand.  At which point he starts SCREAMING all the way to the bathroom, "NO MOMMY!  DON'T HIT ME!  DON'T SPANK ME MOMMY!!  PLEEEEASSSSE!  DON'T HIT ME!!!" 

I am mortified.  I can just feel peoples' eyes piercing the back of my head as I continue walking to the bathroom with a screaming child thats acts as if he is getting beaten.  It is a feeling I cannot quite put into words.  You see men place a lot of their self-worth on how well they provide for their families.  Women, well we place our self worth on our children.  And when you have a child that acts miserable a lot of the time, it is really hard to feel good about yourself. 

So we get to the bathroom and I get down on one knee and look at Aohdan sternly.  See as soon as we get to the bathroom he quits crying.  Because it's just him and I, there is no one in the bathroom to put on a show for.  That;s how I feel about it anyway.  So I tell him in a stern voice that he needs to straighten up and be nice or we are going home.  And he is good the rest of the visit.  But on the way back to our seat we have to walk by the same people again.  Who by now are probably looking at me with disgust because they assume I took my child to the bathroom to beat him.  I wipe away a tear on my way back to our table.  What started out to be an enjoyable Mother/Son trip to Denny's has ended up being, yet another, episode of yelling and screaming.

Now I know kids who are NOT autistic who have done these types of things.  I have a friend who's son has ODD (oppositional defiant disorder) and she has quit taking him out in public because of the outbursts.  So I know that it's not just parents of autistic kids who deal with this...a LOT of parents feel my pain.

So next time you see a child have a melt down in public, and you see the mother or father lose their cool, try to set aside any judgement.  For all you know that mom could have been listening to that child yell at her for the past several hours, or several days, and unless you've dealt with that....you have no idea what it's like.

I love my child with all my heart.  So let's take a minute of prayer right now for all the mom's who are dealing with hard-to-parent kids. 

Love you all and God Bless!

Vicki

Goofing around before bed

Hi there..

I was hiding under your porch because I loooove you...can I stay?

Silly face...x2 :)

More GFCF cooking

This weekend was a big cooking weekend.  I would like to plan maybe 1 weekend a month to really spend time in the kitchen and cook up a bunch of food for the freezer.  This makes it easy for everyone in our household, staff included, to grab something quickly out of the fridge or freezer for Aohdan.  It also makes it possible for me to stay OUT of the kitchen during the week so I can concentrate on other things. 

So far this weekend we have made...

2 dozen homemade 'Reese's cups'

3 pounds of chicken tenders

16 homemade pizzas, this is the dough during the 'rising' process

The assembly line..

I didn't get pictures of everything, but here's the tally of food made.

*3lbs chicken tenders
*3 dozen pancakes
*1 dozen reese's cups
*10 quarts pasta sauce
*7 quarts canned tomatoes (and 2 more bushels left to can!)
*16 homemade pizzas

Watching Tangled with my big brother

it has got to be hard for an older sibling to understand what goes on in the day of a life like Ava. I mean sure Aohdan has been around her since birth, and he does love her and asks about her. But often it is as if there are two worlds co-existing together under one roof. Aohdan is battling challenges of his own when it comes to PDD-NOS (or high functioning autism), so he just sees that his little sis gets an awful lot of attention. But sometimes, just sometimes, he snuggles up next to her and their worlds come together in a beautiful way....

Sunday Dinner...our way

I thought some of you might find it interesting to see what goes into a home-cooked meal at our house.  Although it may look like a lot of work, it's really not that bad once you get used to it.  Having a family meal after church on Sunday is a tradition at our house.  And we usually go to Bob Evans, but sometimes I like to just stay home and relax.  So today I decided to make Spaghetti with meat sauce and garlic-y bread sticks.

This is what went into making it. 

First, I picked some tomatoes from my garden.  The picture below is a combination of my tomatoes and the ones I picked up in amish country.  There is about 1/2 bushel in this picture.  They were grown in organic soil with no pesticides, etc. 

Then I boiled them, peeled them, and began the long simmering process.  All of this was completed last night.  At least the boiling and peeling.  I let them simmer on low all night and then finished letting it cook down today after church.

Next, I browned deer hamburger.  Go head, get all your "Eeewwwws!" out.  A lot of people don't like deer burger but there are a couple things to keep in mind. 

1st:  Deer is naturally hormone-free, antibiotic-free, and they only eat good greens

2nd:  It is verrry low in fat.  It would be the equivilent to buying the 96/4 lean hamburger in the store.

3rd:  And it does taste good, so get over yourself and try it!

As far as the pasta I chose, I have tried different brands and to be honest most gluten-free does not have a great texture.  And I'm a big texture person.  This is my fav brand and as you can see it is free of all the most common food allergens..AND it is delicious with a great texture!

Next for the bread sticks I used a bag of Bob's gluten-free pizza dough mix.  One pizza mix made MORE than enough bread sticks for all 5 of us!  The cool thing is, since I am doing weight watchers, I calculated out the points values and, as long as I stay away from all the cheese, 3 breadsticks were only 5 points-yippee!!  So I made 2 pans with cheese and 2 pans without cheese.  They were delish!!

This is what they looked like before they went into the oven...

And this is what the finished product (with cheese) looked like...

Needless to say we all ate and enjoyed ourselves immensely!  The cool thing about today's meal was the dent on my wallet.  Eating healthy can be expensive, but here's the breakdown on today's meal.

Tomatoes = free from my own garden
Deer burger = ummm, yeah that was free.  Kenny shot a deer on the last day of hunting season out the back door of our house!  Lol!
Breadsticks = $4.69 for (1) Bob's pizza crust mix
Cheese = $2 and it was amish country made from raw milk!
Pasta = $3.69

Grand total for a great homemade meal for 5?  a little over $10=')

Oh and the best part is we had (5) gladware containers of the sauce leftover for the freezer.  And each container is enough for one dinner.  Very cool huh?

So the last picture, check out my homemade canned goods=')  I have 20quarts of organic canned tomatoes in the basement, and I'm getting ready to can probably 40 more.  It cost me $28 for 2 heaping bushels of tomatoes from amish country, which will yield 40 quarts.  This is MORE than enough to last an entire year and can be made into homemade pasta sauce, and a slew of other great recipes.  Tomatoes are so healthy too!

Aren't they pretty?

Praise and Worship

Ava loves praise and worship service, she always watches the band so intently.  This morning I looked up and Ava and our nurse were holding hands during the music service.  I just thought it was so sweet I couldn't resist taking a picture!

I'm just so tired...

I've always considered myself a pretty healthy person, but it seems over the past few years my system is less resilient than it once was.  I know that stress can weaken a person's system and allow things to happen.  I just feel sometimes like I can't quite catch my breath enough to stop and really take care of ME.  Ahhh...  And in this case it happens to be mental stress and worry.  After Aohdan's diagnosis I started to feel overwhelmed with all the things that needed done for him, school, possibly transporting him to Dublin every day, cooking all his food.  And sure enough, on Wednesday of this week I got sick.  Like laying around on the couch all day sick.  Then today I'm sitting at my brother's office and started feeling clammy and shaky like low blood sugar type symptoms.  And it didn't really go away until I got outside and walked around in the fresh air.  I HATE HATE HATE feeling unhealthy, like my system is weak.

I broke down crying earlier this week when I felt myself getting sick, I told Kenny "I cannot afford to get sick!  This family needs a healthy mom!"  He just looked at me and shook his head and asssured me that it was 'okay' if I got sick.  In my own little perfect world, I would like to only handle one bad thing at a time.  Can I order that up God?  Ahhh...I really miss my mom.  It just seems like everything hits at once ya know?  I get done with school, and then we're hit with Aohdan's diagnosis, medicaid trying to cut corners, and then my body decides to protest.  RRRrrrr!!!  Ok did I mention I need a beach?  On top of all this, I've been desparately trying to lose 30lbs.  I gained 30 lbs with Ava's pregnancy, then lost it, then gained it all back again.  Really?  And I have definitely figured out that stress does not have a good effect on my eating habits OR my ability to lose weight.  Besides WANTING to lose weight, it does not help any health issues I have right now.  Oh, did I mention I was diagnosed with GERD last week too? 

So I really need to catch a break.  I need to be healthy, I WANT to be healthy, to have the strength to fight the battles ahead with my kids and life in general.  I feel like these last few years have really aged me.  I used to take more pride in my appearance, now sometimes I got out in public in outfits that would make a teenager cringe.  Sometimes I feel like I run so much that there is no time for doing my hair, or shaving, or make-up,,what is that?  I remember one day last week I out on lip gloss, mascara, and actually combed my hair.  Our nurse looks at me and goes, "Awwww you look sooo pretty!"  It's because I NEVER get dolled up anymore!  By the way if whining bothers you, you should probably visit another blog.  Cuz I'm in a whining kinda mood tonight.  I feel fat, tired, old, and I wish I had healthy kids.  Ok pity party over...lol.

Lord please send some favor my way.  Show me what to do.  I pray Your hand guide me in all things.  Thank you Lord. 

Medicaid is re-assessing our nursing hours

I'm not getting worried yet. But since the State of Ohio is basically broke, they are cutting back everywhere they can. So I get a call from Ava's CareStar Case Manager asking me all these questions regarding her condition, her daily cares, etc. So I ask her, "they aren't cutting our nursing hours are they?" And she informs me that they probably won't but since we are so 'heavy' on hours (well, YAH, we have a vent-dependant daughter) they 'scrutinize' us more closely than other cases. We've kept Ava out of the hospital for 3 years now. And I feel it is because we have such an awesome nursing staff who not only follow strict aseptic technique, but they also know Ava so well.

Just pray that with everything else going on they do not mess with our nursing hours. I don't think they will, but let me tell you if they try...I will fight like a mad woman. I feel like we've entered a new season in life. With Aohdan's autism diagnosis, and the upcoming fundraiser, it just feels like our life has taken on a new dynamic.

Blessings everyone!

Vicki

Filling out enrollment paperwork today, hoping for an open spot!

I'm heading up to Haugland's today to fill out an enrollment application.  I was told there were little to no spots available in the kindergarten class.  They explained that they will do what they can to get him in but that he may have to go on a waiting list. 

Worst case scenario we will have to go ahead and enroll him in our local school district and wait for a spot to open up at Haugland's.  Praying that we do not have to put him in regular school, but if we do then so be it I guess. 

So we're leaving out here in a bit, wish us luck!

Delicious and Healthy Fresh Strawberry Crepes

So I joined Weight Watchers, and a lady at tonight's meeting was talking about how oat bran makes you feel full and proceeded to tell us all how to make fresh strawberry crepes. I listened to her explain the recipe but was skeptical. See I LIKE to cook, and the ingrediants just didn't sound like they went well together. So after the meeting I went grocery shopping and picked up everything I needed, along with the rest of my shopping list.

Well let me just tell you, they were DELICIOUS!
Each one is just 1 point on the new points plus system!

(2) Tbsp oat bran
(2) Tbsp plain low-fat greek yogurt
(2) egg whites
1/2 C thinly sliced fresh strawberries

Mix first 3 ingredients well and scoop onto hot griddle. Brown on each side, ladle w/fresh strawberries, drizzle with agave nectar and fold over. Sprinkle with just a dusting of powdered sugar. YUM! It's like a healthy fresh strawberry omelette. OMGosh so good, and filling too:)

Another quick GFCF update

For the past week or so Aohdan has had more 'depth' of conversation than he ever has, but he has also had more intense meltdowns.  All of this I was told could be expected during the early days of the GFCF diet.  So I guess you could say there's been more 'good' AND more 'bad.'  In the car business I was always used to using the term the 'J curve.'  Basically it means it's gonna get worse before it gets better, that's just how it goes.  So in the midst of his angry spells and mouthiness, I am starting to see the 'fog' lift a bit.  It's still very early in the game though.

A day in the life of a GFCF (Gluten Free Casein Free) Mommy

Well it's been a pretty crazy week, but today was a good day.  Felt like I got quite a bit accomplished.  I called Haugland's and set up an appointment to visit, and I'm also taking Aohdan this Thursday to fill out an enrollment application.  They will do a screen to see what grade level he tests out of and see if there is a spot for him in the school.  I am soooo excited! 
So I mentioned the other day that we were approved for the Generation Rescue Family Grant.  To qualify for the grant we are required to adhere to a strict gluten-free casein-free diet during the 90-day grant period.  For those of you who do not know what the GFCF diet is, here's a crash course.  'Gluten' is found in wheat products, and 'casein' is a protein found in dairy products.  Up to this point we were [sort of] following the GFCF diet, with the exception of raw dairy products.  To qualify for the grant we will have to be strictly casein free-no dairy at all-for the 90 day grant period.
Which leads me to tonight's blog title.
Aohdan currently has a very narrow food range.  He only wants chicken nuggets, pizza, french fries, reese's cups, and applesauce.  Oh and PB&J=)  So wanting him to still be able to enjoy his favorite foods, I've had to make-from-scratch pizza, chicken nuggets, reese's cups, and bread for PB&J's.  This has been no small feat as EVERYTHING seems to have wheat and dairy in it!  The reese's cups [for example] I had to seek out special chocolate chips that have no dairy and still taste good!  The brand?  Enjoy Life Foods makes a delicious chocolate chip that tastes JUST like the real thing.  So just to allow my son the enjoyment of the occasional reese's cup, here's the recipe:

(1) Jar Smucker's Natural Creamy Peanut Butter
1/2 Cup Powdered Sugar
(1) Bag Enjoy Life Chocolate Chips
1/2 Bar Bakers Wax
12 Large Cupcake Cups

Mix PB and Sugar until well blended, set aside
Melt Chocolate Chips and Wax together over a double boiler set up

Spoon 2 Tbsp melted chocolate into each paper cupcake cup
Spoon 1 Heaping Tbsp PB mixture on top
Press down until flat
Spoon 2 more Tbsp melted chocolate on top
Allow to cool and
Voila!
12 Large 'Reese's Cups'
These freeze very well:)

So this is just one example.  I want Aohdan to be able to enjoy eating out with us, and he likes to order the kids pizza and fries when he visits the local Denny's with his PaPa.  So I've learned to sneak one of his GFCF pizzas in a lunch box to the server.  The staff has been wonderful about working with us.  They throw my homemade pizza in the oven or microwave, and bring it out on a plate with fries so he still gets to enjoy eating out.  The funny thing is he knows it's my pizza, but he still enjoys it anyway.  So about twice a month (or more) I have a cooking party where I make-from-scratch chicken nuggets, pancakes, reese's cups, pizza, oh and I did I mention ice cream?  Home made ice cream is Delish!  Though I need to find a good recipe that uses coconut or almond milk...

So going GFCF is no small feat.  But it is WORTH it for my baby!  One of our nurse's who has an autistic son went GFCF over a year ago, and I remember thinking that she was a little over-the-top about it all.  But you know what, now I get it!  I don't believe the GFCF diet is a cure all, but definitely a piece of the puzzle I feel.  I am anxious and excited to begin the journey of biomedical intervention.  And I am verrrry curious to see what the lab results will say is in Aohdan's system.  I will be posting about all of it.  I believe it is an important journey to share.




 

2011 River Car Rally Video

2011 River Car Rally Video

2011 River Car Rally Video

We Got Approved for the Generation Rescue Grant!

The day after Aohdan got his autism diagnosis I applied for the Family Grant from Generation Rescue.  I applied on 8/17 and today I got an email that WE WERE APPROVED!  I am SOOOO excited!  This is a big deal because it pays for us to take Aohdan to a DAN! Dr.  DAN! Dr's do tons of testing for heavy metals and other toxins and work with the parents to create a treatment plan catered to your child.  A typical pediatrician won't even test for heavy metals...because mainstream medicine doesn't believe that autism can be anything but a neurological disorder.

The fact is that most autistic kids that are actually tested end up having heavy metal toxicity, yeast overgrowth, and leaky gut syndrome.  Ugghh... 

I am just soooo grateful to get approved for this grant, because Kenny and I DO NOT have the money to pay for a DAN! Dr.  Insurance does not pay for it because it is outside of mainstream protocol, and the average first visit is $575, and the lab testing can run in the neighborhood of $700-$1200.  So believe me when I tell you I am beyond elated to get approved for this grant!