Saturday, August 13, 2011

Monday, March 8, 2010

Today, for the first time, our baby girl GIGGLED!

I was tickling her neck and kissing her hands and out of nowhere, she smiled big and GIGGLED! We were sitting there with our Medicaid Waiver Case Manager (who I do not think was aware how big of a deal this was) and we were all discussing business (at least the nurses were--lol) and I was cuddling with Ava and the first time she did it I don't think it hit me. And then I looked at her and she still had this big, goofy smile on her face, so I started kissing her hands again, and she giggled AGAIN! 3 times in all--what an exciting day!

After it happened, I thought about it several times. Most parents love to hear their kids laugh, but with Ava, every 'first' has been painfully late and slow.

Heres a quick list of firsts for Ava:

11 days old: Opened her eyes
21 days old: Breathed on her own without a ventilator
12 Weeks: Cried for the first time (and it was so quiet it sounded like a tiny kitten mewing)
4 months old: Lifted her head unassisted
1 year: grabbed and held a toy
18 Months: The faintest hint of a smile
18-24 Months: Started to really coo and vocalize
20 Months: Rolled onto her side while getting her diaper changed
2 Years, 2 Months: Smiled and giggled at her mommy:)

So continue to pray for her development, each of these milestones are cherished! We're still waiting to her her wheelchair, but Columbus Medical has made us a gracious offer to lend us a KidCart (a type of wheelchair) until her Kemba comes in. So we're picking that up on wednesday.

Sunday, February 28, 2010

Oh! Almost forgot to mention this. Ava has had a HORRIBLE time with her teeth. I have been told that kiddos with brain injuries often times do not get their teeth on time, if at all in some cases. Well, Ava is 2, and only has 4 on the bottom and 1 on top. Her poor little gums are so red and swollen and have been this way for months and months. I am seriously considering taking her to a pediatric dentist or a consult to see if they can do something to 'help' things along. SO if any of you reading this has any info that might help, please, send me an email to: vicki_ballenger@yahoo.com

Thanks!           

Sunday, February 28, 2010

Well, it is the end of February...almost 5 months since she was fitted for her wheelchair and STILL haven't gotten an approval from medicaid. Very frustrating! I mean they DID tell us it could be upwards of 5-6 months before we get her chair, but the people at the seating clininc really didn't think it would take that long and, from the looks of things, it may take MORE than 6 months:(

Another frustrating thing we're going through is therapy. PT (physical therapy) seems to be trucking along without a hitch, but OT (occupational therapy) and Speech, that's a WHOLE different story. We have an OT, but there has been some tension due to us not being able to get the proper equipment to fit Ava's current needs. We're in kind of a catch-22 if you will, because medicaid won't pay for it (or they'll make us take it to the state level) and we definitely cannot afford it. Some of the 'special needs toys' are hundreds of $$. We're doing okay right now, since Ava is on a vent and will probably require home-based therapy for some years to come, but one day we will probably have to take her to a therapy place 2-3x a week, something that makes me cringe to think about.

Another disturbing thing that has started, is that Ava has begun to twitch. Her RN consulted with neurology and we think that she has simply outgrown her keppra dosage, so we made some adjustments, but just keep her in your prayers.

For those of you who do not talk to us on a regular basis and may only get updates via this website, here's an overview:

Ava is now 2 years old, she turned 2 in December. She is on 24-hour ventilator support, though she actually breathes well off the vent. We are able to take her off for a couple hours a day and allow her freedom from all the 'tubes.' She currently has 3 full times nurses who are like her 2nd, 3rd and 4th mommies:) We really are so blessed to have such a wonderful nursing staff, that has been a journey in itself let me tell you!

As for Aohdan, he is now 4 years old, finally potty trained and in pre-school 3x a week. He is smart as a whip but we still battle his mouthiness and defiant behavior. Though I am told that he really is just a normal 4 year old boy who has learned how to adapt to having a little sister who gets ALOT if attention.

Kenny and I are doing really well. I am a full time nursing student, and should graduate in the spring with my initial Practical Nursing License. This will enable me to earn an income working in home health and, therefore, give me the freedom to continue my pursuit of a Bachelor of Science in Nursing. I still shake my head at where our lives are now. Don't get me wrong, I am not complaining, but if you would've told me 10 years ago that at the age of 36 I would be a full time college student and have a daughter with CP, I would've looked at you like you were crazy. Funny thing is, I remember for weeks and months after Ava's birth I would lay in bed begging, pleading and praying for the Lord to take this burden from us, from me. I couldn't bear the thought of what was happening. I can now say, without a second thought....I wouldn't change it. It has been such a wonderful ride, and the Lord has revealed Himself to our family and blessed us so, so much. I remember my mom would tell me stories about what the Lord had done in her life, and I was too stupid and self-centered, and focused on myself to care about what God had for my life. How I wish I could just have lunch with her one time, I would love to share with her that she was SO RIGHT! I never saw my mom happier than in the 10 years she was battling cancer! Seriously. The week before she died, she had this glow on her face and a smile that would not quit, and here I was sitting by her bedside bawling my eyes out and asking her, how she could be smiling. She knew where she was going, she told me, "I going to be with my Jesus." I don't mean to talk about a sad time, but seriously anyone around my mom will tell you that she was the one comforting all of us during her battle. I mention thid because a lot of times people will still look at me with pity, or talk about Ava like she is such a burden and 'how do we do it.' Ava is disabled, no doubt about it. We have long ago accepted whatever her little life is. If she never walks, talks, or gets off the vent, we will still cherish the time we have with her. We continue to pray for her complete healing. But we do not know what God's Will for her life is. We do not know how He plans to use this situation, though we have already seen so many great things come out of all this.

I'll write more soon. But I do want to ask all of you to keep a few things in your prayers:

#1: Pray for Ava's continued healing, always pray for this
#2: Pray that we get the equipment she needs for OT & PT, (also for her wheelchair)
#3: Pray for guidance on our future housing plans. Kenny and I signed another year lease on our current home, but with our recent bankruptsy, we need serious guidance on how to get approved on another home in the near future
#4: and finally, Pray for our marriage to remain first priority. Pray specifically for us to keep our marriage focused on God and His will for our lives, pray against arguing and fussing, pray for closeness and oneness to remain.

Thank you all and God Bless!!!

Tuesday, January 19, 2010

Just a quick update, not a WHOLE lot going on really. Which is usually a good thing--Haha!! Ava turned 2 on December 31. It was a bittersweet day for me. Happy that our baby girl made it to her 2nd birthday, generally, in good health. But bitter because the entire day of her birthday I battled horrible memories from the day she was born. To some extent the memories have softened, but there are times I remember every single detail of that night.

Ava is, in a lot of ways, experiencing the 'terrible 2's.' It may sound funny to think of a child that cannot walk or talk, but it is true. She loves to be snuggled and played with and has figured out ways to get attention. One of her biggest tools is her ventilator. The vent goes off for many reasons, but the biggest 2 are 'high pressure' and 'disconnect.' Ava has learned how to set of the high pressure alarm by exhaling really hard. It sounds like she is going, "HHMMPPFF!" She has also learned that if she pulls the valves on her circuit open or pull the actual vent off her trach port, it will alarm. And guess what? When a vent alarns, someone comes running:) Sometimes you'll go running into her room and she's holding onto the circuit (right next to the port that is now opened) and it almost looks like she's smiling at you! The nurses can always tell when I've had a rough night with her because they'll come on shift in the morning and they'll find medical tape all over her vent circuit. it is from me taping shut her ports, and taping the circuit joints together. I've even had to put tape on g-tube before because she like to pull on it. Crazy kid!!! She continues to amaze me and really helps to continually mature me through this experience. 

Thursday, December 17, 2009

I Just Need To Vent...
We live in Central Ohio, and found out that a town very close to us (Mt Vernon) put out the Nativity Scene and someone complained, so the ACLU told them to take it down or there would be trouble. Now I may not have All the facts, but that is irrellevent. Some God-Hating organization is running our country and telling us how & when we can worship!!!

Bottom line is this...

There would not BE a Christmas without Jesus Christ.

There would be no stories of Saint Nicholas, unless Jesus had been born....

There would be no Christmas trees....

No Christmas presents...

SOMEONE PLEASE HELP ME TO UNDERSTAND HOW an organization like the ACLU, and anyone who stands against Christ, is allowed to gain ground on issues like this???

How is it that OUR BELOVED COUNTRY, whose Declaration of Independance was signed by CHRISTIAN men, has allowed this to happen!

It makes me so sad to listen and see these things take place. But we need to STAND UP!! This is the United States of America! It makes me downright ANGRY that the Lord has stood guard over our country for so many years, the most prosporous nation in the world, and THIS is how we thank Him?!?!

STAND UP CHURCH! MAKE A STAND! DON'T LET SOME ORGANIZATION that is probably run by an Aethiest or Agnostic TELL US HOW AND WHEN WE CAN WORSHIP THE LORD THAT HAS BLESSED OUR COUNTRY!! 

Sunday, November 29, 2009

I've been wanting to tell this story for some time now...

Ok so first I must say that this story actually happened last
year during our 'Year of Hell' which I will tell at a later time. This story is just one of those that you will remember for years to come, and it will make you LAUGH OUT LOUD I promise! So let me set the stage for you...

It is the fall of 2008, and we have just brought Ava home from [yet another] 3 month long hospital stay. She has added a trach and a vent to her list of 'stuff' now and her daily cares have just become a LOT more complicated. So due to her 'extensive' (as the medical world calls it) daily routines, Medicaid graciously increased her nursing hours, so I have been interviewing nurses for the past several weeks, with no luck. I had been working with 2 different agencies and interviewed and/or oriented at least 5 nurses, all of whom did not work out for one reason or other. One girl was very large and had a hard time manuvering among all Ava's stuff, another girl kept forgetting to turn on Ava's feeds at night, another girl disconnected her vent circuit to fill her humidifier with water and was oblivious to her pulse-ox going off until her oxygen level dropped to 67 (seriously) and I literally had to grab the circuit out of her hand and vigorously rub Ava's chest while holding the ambu-bag in my other hand. THAT was the last straw! I officially turned into an obsessive person after that. A few days after the last scary incident, the agency called with [yet another] hopeful candidate, and I realized that I had to be at my part-time job early the morning she was coming to orient. So I made sure my husband had his alarm set and gave him strict instructions to take his time and show the new nurse EVERYTHING about the vent and NOT to disconnect her from it if she was asleep! I am quite certain I lectured Kenny way longer than I should have, but what can I say, I was a nervous wreck to leave her in the hands of a strange nurse after what we had experienced thus far. So we go to bed that night and, as usual, my dear Husband lays his sweat pants and sweat shirt beside the bed so they are within close reach in case he needs to get dressed in a hurry right?

So I get up the next morning for work. It is still at least 2 hours before the new nurse is due to show up. I gently rub Kenny on the forehead to wake him up. He opens up one eye and looks at me...

"Hey babe?"
"Yes..(mumbling and very tired)"
"I'm leaving ok?"
"Ok...."
"Make sure you show the new nurse everything about the vent ok?"
"Ok...."
"Hey babe are you awake enough to understand me?"
"Hmm?...."
"Kenny. (more loudly than before) Are you hearing me?"
"Yes, yes... I hear ya I hear ya"
"Ok. Well I love you. Bye. Is your alarm set?"
"Yes Vicki."
"[chuckling] Ok, bye."

So I go to work, and arrive home about 8 hours later to find Kenny working on something in the garage. Typical stuff. I ask him how the new nurse is, and he shrugs and says, 'She's alright. We should keep looking, but she's ok for now." So I walk into the house through the back door and towards Ava's area. I am greeted [very shyly] by a sweet, middle aged woman who is having a hard time looking at me in the face. I notice this right away, and am trying to figure out why she won't look at me. So I try for about 10 more minutes to make small talk with her (which I do with every new nurse) and she doesn't seem very talkative. So I change out of my work clothes and decide to go hang out with Kenny in the garage for a little bit and enjoy the fall weather.

"So what did you think?" Kenny asks me.
"She's ok," I replied, "not very talkative. She seemed almost scared, I don't know, she wouldn't look me in the face."

Kenny laughs and proceeds to tell me that they had an interesting introduction that morning.

"What do you mean by 'interesting introduction? " I said.

He tells me that some time after I left for work he must have accidentally shut off his alarm, or changed the time something. He said he fell back asleep and next thing he knew he was awoken by the sound of Ava's vent going off telling him it had disconnected, AND the sound of someone pounding on the front door...as if they had been pounding for awhile. So, he continues, he had to make a quick decision. Check Ava's vent or answer the door. So he hurredly pulled on his pants and hurries over, yanks the front door open, hollers at the new nurse to come on in, and runs over to Ava's vent to see what is going on. He said the nurse followed him to Ava's bedside, and watched as he held his pants up with one hand and looked for the vent circuit disconnect with the other hand. After he makes sure Ava is ok, he dutifully takes at least 10 minutes, maybe 20 he says, and shows her everything he can remember about the vent and Ava's specific needs, etc. He again mentioned that he was frustrated while he was 'teaching' her because he couldn't figure out why his pants didn't want to stay up, and had to continually reach down and catch them as they, repeatedly, tried to fall off. He said first he tried holding them up from the side, then the back, then the front. he said the nurse kept glancing down, and was nervously asking him questions as he went through everything.

He continued...After showing her as much as he could remember, he said he had to practically run to the bathroom, as most people have to 'relieve' themselves shortly after rising and he had not done that yet. So off to the bathroom he goes, closes the door, looks down, and realized in hurrying to get dressed, he was wearing his sweatSHIRT as pants! He said from trying to keep them on, the cuff was clear up to his knees, and the hood, was conveniently hanging in front.

So here was this poor nurse, who had never met us before, is greeted by a swinging door and a voice yelling, "Come on in." Only to see a man standing there with his legs stuck through the arms of a sweatshirt. Is it any wonder she told the agency she didn't feel right coming back? Haha! We have had many, many laughs over that one. Good thing Kenny is good natured, because he has been ribbed about that one A LOT!

Tuesday, November 17, 2009

Ever have a song whose lyrics keep running through your head and really touch your soul? When my mom was dying of cancer, I remember listening to Josh Turner's song, Long Black Train, and the phrase that kept running through my mind, "Cause you know there's Victoryyyyyy in the Lord I say, Victoryyyy in the Loooord. Cling to the Father and His Holyyyy name..." When I get stressed I drive, anywhere...and usually listen to music very loud. So I put a lot of miles on my car in 2003 when we were losing Mom....

I told you that story to tell you this one.....

So all of you know Ava's story, and her diagnosis [which] according to the medical world is not good. But I HAVE to rest in the Lord and trust her to Him. He has seen us through so much to this point. {Going of on a rabbit trail aren't I?} So Ava had to go in this to Children's Hospital last night to have ear tubes put in for her multiple ear infections. Since she has never had her vision and hearing 'officially' tested, they offered to do both while she was under sedation. So I agreed, I mean why not get it all done at once right? I knew in my heart, long ago, that her vision and hearing were probably impaired, so I was prepared for bad news.

So I spent the night with her at the hospital last night and, as always, she was happiest when she was laying on my chest, snuggled as close as she could get, and then I hear her start making sucking sounds, which [in her world] is a sign of great contentment. So I did not get much sleep last night because she wanted held, and besides, the couches in patient rooms don't exactly come with memory foam, so I didn't exactly get restful sleep last night. So about 6am this morning, I feel a 'tap tap' on my shoulder, and I turn around [with I guarantee the WORST case of bed head ever] and I see Dr. Kong, Ava's surgeon standing there smiling at me. Such an awesome guy, he did her trach surgery last year also. He always makes a point of coming to see us beforehand. He spoke to me briefly about the procedure, asked if I had any questions, and told me if all went well we could take her home a few hours after she came out of recovery. So I thanked him, shook his hand, and left the hospital so I could get to class on time, which was all the way in Marion--about an hour + away.

So I decide to stop and have a quick breakfast, and get back on the road and I get a call from Dr. Kong. He tells me that Ava is already out of surgery and is doing well. Awesome! He continues to tell me that they performed a brain stem hearing test while she was under sedation and that is appeared her auditory nerve received the signal, but it was not registering in her brain stem. So they did not believe she was able to hear at all. [I brace myself] He continued...They also tested her vision and, although they cannot know for sure, her optic nerve was sluggish and pale and they do not believe she can see either. He pauses and then tells me he is sorry to have to deliver this type of news after an, otherwise, successful procedure. I assure him it is not surprising news and I knew her vision and hearing were impaired to some degree. So I hang up.... By this time I am on St Rt 23 heading to Marion and my mind starts thinking, her brain cannot control her muscles, and now I find out she cannot hear OR see. My heart breaks all over again thinking about this sweet precious child trapped inside a body that doesn't work like it should. I try to shove the thoughts out of my head but they won't leave. I think of all she has been through, all We've been through. So I reach over and turn on the radio [my cure for everything, driving and music--haha] and what do I hear? "But you know there's victoryyyyy in the Lord I sayyyyy, Victoryyyy in the Lord. Cling to the Father and His Holy name..." All the way up 23 to school, I am wiping away tears and singing along with the music. Thank you Lord. Thank you for reminding me [yet again] that You are in control.           

Friday, November 13, 2009

Lots and lots going on! Before I get into Ava's new updates, I want to say HAPPY BIRTHDAY to our Aohdan who turned 4 years old on Veteran's Day! We took him to Pizza Hut to celebrate--he had a blast! So hard to believe he is 4 years old already--my goodness! And such a little man he is! He is so sweet and so caring, such a joy to be around! Mommy & Daddy love you little man!

As for Ava...she was fitted for her new wheelchair on thursday, and I was kinda bummed when they said it could take up to 5 months to get it:( Bummer! I am hoping they are wrong and it comes sooner! I talked to a friend of mine who was told the same thing and hers came in 8 weeks--so I hope that we get it sooner! We also took her to Audiology the same day to get her hearing checked and found out that, yet again, she has fluid behind her ear drums, so we have decided to get tubes put in her her ears. I hate doing surgery, but Kenny and I both agreed this is a good decision for her, and she has had soooo many ear infections--poor baby! So she goes into Children's this coming monday night, to be admitted, and her surgery is 7am tuesday morning. THEN, I have exams tuesday afternoon, exams wednesday afternoon, and Kenny and I are leaving thursday to GET OUT OF DODGE! WOOT WOOT! I cannot wait! So I am just telling everyone right now---we will not be answering our cell phone! Lol! Love ya'll but we REALLY need a break!

Kenny and I are doing well, still just taking things day by day, week by week. We have a great nursing staff now, and (hopefully) we won't have to deal with any staffing issues for awhile now. School is going well for me, although juggling everything have been tough to say the least; full time student, leading a workout group 3x a week, organizing Ava's stuff. It sounds like a lot, but it's really not as bad as it might sound. I talk to other moms and sometimes wonder how THEY do it, but life is really good, God has blessed us in so many ways I cannot begin to count. He placed us in a beautiful home, He has made a way [financially] for us to survive, He has protected, He has brought people into our lives to help us along. I think sometimes of the Israelites, wondering in the desert, complaining for various reasons, and God always came through. I catch myself sometimes getting grumpy, complaining, worrying about money and various things, then I have to stop and remind myself, "You know, God has come through every. single. time." It really is So true.

So back to updates....In December Kenny and I are going to Weekend oto Remember, it is a marriage conference that comes to Columbus every year (usually December) and we had such a great time last year that we decided to go again this year. It is Dec 11-13. Also, if anyone wants to stop and pay her a visit, we are having a birthday party for Ava early on December 31st. Just an informal gathering to give everyone a chance to see her.

I hope everyone is doing well and, again, thank you all for the well wishes!           

Friday, October 30, 2009

IF YOU LIVE IN MORROW COUNTY OHIO - VOTE FOR THE WHETSTONE/DEVELOPMENTAL DISABILITY LEVY!!!
And here is why...

1st of all it will cost the average household approx $28.45 A YEAR!!! And let me tell you who it would benefit....kids like our baby girl Ava! This levy would put $650,000 into the Morrow County budget SPECIFICALLY for special needs programs that will directly benefit kids like Ava. This program would pay for a speech therapist(s) that we DESPARATELY need! Most people think of speech therapists as not such a big deal, but let me tell you that for a child like Ava, a speech therapist plays a fundemental role in helping her learn to EAT! And we have a very small window of opportunity to get as much of her oral skills back as we can. We need to get her as much early intervention by age 5 as we possibly can. We have not had a speech therapist since moving from Licking County in Feb...there are none!

As of right now we are being forced to face the fact that we will have to end up driving her to Children's Hospital in Downtown Columbus 2x weekly. And taking a kid with a trach & vent into a hospital in the middle of old & flu season? It is like playing Russian Roilette with her respiratory system

So if you know of anyone who lives in Morrow County, pleeeeease ask them to vote YES for the LEVY! It is very little money, and the benefits faaar outweigh the costs.

Thank you!

Wednesday, October 28, 2009

Hmmmm...I think God is trying to tell me something. Over the past couple of years, I have had so many people come to me and mention how I should write a book about our...ummm...journey? I guess as good a word as any for the past couple of years. At first I just shrugged it off, then another couple people would make the comment. And it's cooled off for several months, no one has mentioned the book thing for awhile. So then I am sitting at Perkins the other day with a lady I go to college with, and out of nowhere she goes, "Have you ever considered writing a book?" I just stared at her. So just how DOES someone go about writing a book? Haha! I have always stood on faith that God uses EVERY hard circumstance for some good. And if our journey can help other, I am absolutely a willing participant....I just don't know where to start.

Then again, if God wants me to write a book, I am QUITE certain He will figure out a way for it to happen! Lol!!!