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!

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

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....

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!

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

2011 River Car Rally Video

Need strength to carry out this fundraiser

So with everything going on with Aohdan's new autism diagnosis, my head has not been on fundraising...  I think the reason I feel so stressed is because Aohdan is due to start school so soon and it kinda takes priority over other things.  Then if he goes to Haugland's private school he will have to be driven to Marysville every morning.  I know things will work out, but from inside my world it looks very chaotic right now.

So as for fundraising, I'm not giving up on our goal of getting a hyperbaric oxygen chamber for Ava.  One thing about me, I am stubborn, I guess that can be a good thing or a bad thing depending on the circumstances.  I had made by goal to start selling tickets and promoting by September 1st.  What I need the most right now are the following:

1.  People to sell raffle tickets
2.  People to pass out flyers to friends and local businesses
3.  Ask your church to sponsor the event

For #3, if there are any local churches that are willing to join in and help promote the fundraiser, I would be more than happy to come in person and talk about Ava and her story. 

So that's all for now I guess.  I am just trying to stay focused and on task. 

Love you all and God Bless!

Vicki

Dentist visit and blood draws

Well we took Ava took a dentist appt on Tuesday and her teeth look good, they just need to finish coming in!  They are all pretty much poked through, but several are resting right at the gumline.  The dentist explained that most kiddos encourage things along by chewing on toys and eating and such.  Since Ava can't do that she depends on us to give her gums stimulation with tooth brushing, gum massage, etc.  It just sucks because she has tooth pain A LOT, and I hate giving her tylenol and motrin all the time.  They want to see her every 6 months now for regular cleanings.

As for the blood draw, that ws horrible by the way.  They have to fill 2 pipets with capillary blood from her finger tip, so they 'milk' her finger for blood until they are full.  Ugghh..  Can you say big crocodile tears?  Poor baby.  So the results of this will tell us how much CO2 is in her blood, which will tell us what to do with her vent settings.  If her CO2 is low, which her pulmonologist suspects, it is likely due to her breathing too fast during the day and basically hyperventilating.  Which would explain why she allows the vent to breathe for her at night.  CO2 is your body's respiratory regulator, so if your CO2 is too low your breathing slows down because your body things there is too much oxygen..  Our bodies are amazing machines aren't they? 

So anyhoo, Ava is doing well.  Nothing major healthwise to report except her muscle tone continues to give her problems. 

I am busily working on fundraiser stuff so we can get that rolling.  I am so excited about the fundraiser, it's just been hard to focus with everything going on with Aohdan and his autism diagnosis.  Just gotta suck it up and keep on truckin! 

Just venting...

If any other special needs mom's are reading this pleeeease don't get offended.  I just need to vent a little.  For some reason I was visiting some of the old yahoo groups where I spent a lot of my time in the early days after Ava's birth.  There were a lot of new faces on there, lots of great inspiring stories.  One of the things that stuck out was a lot of kiddos nowadays are recieving these cooling treatments soon after birth.  Basically minimalizing the brain damage.  Ava's birth injury was pretty severe, no breathing, no heartbeat, apgars of 0-3-3 (1 min, 5 min, 15 min) after birth.  I read some stories of kids who experienced the same level of injury as she did, but are now only classified as 'mildly brain damaged' as they are learning to crawl, walk, talk, and eat, all of the things I PRAY Ava will do someday.  SHe just seems a lot more severe than a lot of these kids:(  Again, if any of those moms are reading this, do not misconstrue what I am saying as I am very happy for you!  Just sad that my baby girl struggles so much. 

Well, Goodnight all.