Saturday, August 13, 2011

Wednesday, December 10, 2008

As the Holiday Season draws near, I sit back and reflect...
About how Ava will be ONE YEAR OLD is less than 3 weeks! It is hard to imagine really. This time last year I was calling my midwife begging for some magic way to 'naturally' induce labor. Now, one year later, I am far from pregnant and [still trying to lose all the baby weight] have joined weight watchers.
About how it will be 5 Years on December the 15th that my mom passed away. MAN I miss her so much! It's crazy! I just miss her gentleness and the way she always had the right thing to say. I pray that I can be as good of a mother to my kids as she was to me.
About how Kenny and I have been together for more than 5 years now! And what a ride it has been! Whoa! In 5 short years [not really short-haha] we have dated, gotten married, had 2 beautiful children and, Lord willing, will continue to grow in our walk with Christ together! We are going to Weekend to Remember [for couples] this weekend and I am so excited! It is the first time we have stayed somewhere, overnight [by ourselves] with no kids. And medicaid was kind enough to approve us for 24-hour round the clock nursing for Ava. Yay! Praise God!
About how I turned 35 this past May, and had to laugh, because when I was 20 I thought 30 was old! Haha! Mom used to always say, "Honey, your body may get old but your mind stays young!" She is right, though I have to say that I still feel very healthy and atheletic [except for needing to shed 20 pounds] I still feel great! But isn't it funny how, when you have young kids, that you no longer care about making sure YOU look good. I have to really laugh about the way I go out in public sometimes. Though I was never a 'girly girl' I have to remind myself to do my hair and wear makeup once in a while!
About how we have two beautiful kids that are complete opposites! With Aohdan I had barely any sickness in pregnancy, had a super fast labor, he was a healthy baby, eats like a horse and talks non-stop! With Ava I had morning sickness until I was 6 months along, I went through 12 hours of un-medicated labor, her birth was traumatic, and she struggles with things that 'typical' kids take for granted.
About what it is like to be the parent of a 'Special Needs' child. I remember when I was a teenager / early 20's and see a parent with a child in a wheelchair or some type of special medical equipment I would feel so sorry and think to myself, "I couldn't imagine! I don't know what I would do if..." Kenny and I have both had that talk. Now here we are and it's crazy the things you get used to. Ava has a trach and a home ventilator to help her to breathe, and the things you see at our house would CRACK you up! Like we'll be sitting at the table eating dinner and here comes Aohdan dragging some piece of equipment behind him, or you'll catch him wrapping an oxygen line around one of his stuffed animals. My friend Shauna's (who has a special needs daughter as well) even had to explain to her 3yo son that 'Not all little girls have G-Tubes honey.' Ava has gotten MUCH healthier since getting her trach, and wants to be held ALL the time! Her nurses barely have time to get anything done because if she's not getting attention, she's fussin! She is starting to coo and grin and reach and bat away things when she doesn't want something done (like trach care) and really shows us every day that she has an opinion about things. Technically Ava would fall under the umbrella of CP (Cerebral Palsy) which is a broad umbrella covering any type of inability to control muscular movements. She is currently enrolled in the whole gammut of therapies to help her reach her fullest potential; OT (Occupational Therapy), PT (Physical Therapy), and Speech.

Monday, December 8, 2008

Ava is ALMOST A YEAR OLD--WOW!
It is so hard to believe that our Ava will be one year old in less than a month! And What a year it has been! We have run the gammut of emotions let me tell you....utter despair to the rejoicing on the grandest of scales. I am working on this year's Christmas letter and it has been hard to shorten it enough in order to fit into a standard envelope. There is so much to tell and SO MUCH to be thankful for! Ava is growing and learning more and more every day. And we have definitely learned how to appreciate the smallest of details...a little sideways grin...a little hand reaching out for your face...even when she pulled out her trach it was something to praise ya know? Because it shows us that she has an opinion and her opinion is she doesn't like the trach and ventilator and, God willing, we will be able to call up the supply company one day and tell them to come pick up their stuff because we don't need it! She is SUCH a little fighter--MAN is she ever! Her little fighting spirit keeps me in check many days. You know the days when you feel the need to complain about the rude person at your phone company, or the fact that you got laid off and you have had to cut a few things out of your life for the time being? Ava just keeps me in check when I start having the 'Poor Me's.' She just inspires me!

Thursday, November 20, 2008

Well...I got some bad news today *frown* but God is GOOD and I'm STILL countin' my blessings!!!
Unfortunately I received some bad news today...my position at Germain Toyota was terminated due to company-wide cutbacks. I was a little sad because I actually really enjoyed working at Germain. I enjoyed the people, the business, the customers...everything. But all things come to an end I suppose. I don't think many people in the car business can honestly say that they enjoyed their job...but I really did...call me weird - Haha! I was only working part-time, but it was still a big bummer, especially with the economy the way it is. BUT it really is just a hiccup in the road and I am not looking back but looking forward! I am going to enjoy the holidays with my family and Praise God that Ava is still home and still doing well, and that we are all healthy!
*UPDATE ON AVA* A couple weeks ago we had a little incident that required a 2-day hospital stay, she had a double ear infection and some gastro-intestinal issues going on--but she is over it and doing well! Since last time I posted on Caring Bridge we have had success in finding a Physical Therapist & a Speech Therapist--Yay!
Please continue to pray for our Pastor, Bob Swanger, and his wife and kids that they may have peace and that Pastor Bob would be completely healed from melanoma.
Thank you all and I promise to post more often *grin*

Thursday, October 23, 2008

The Excitement Never Ends! Haha!
This morning, at approximately 4am, Kenny got up to Ava's Ventilator alarming and found the humidifier was turned off. Hmmmm..not good. Ava has to have a constant flow of warm, humid air into her lungs or she'll get too dry and that could be bad. So I got up with him and we checked her over thoroughly, she looked fine and her oxygen levels and heartrate were fine (96 O2 and 121 hr), not to mention she was SOUND asleep. So I put a couple drops of saline water into her trach in case she had started to dry out and went back to bed. Kenny left for work around 7:30am and I laid back down, not to go to sleep, just kinda relaxing. Next thing I knew I heard Ava's vent alarming again, but this time it was accompanied by a strange sound, like someone gasping for air. So I ran into her room to find her laying sideways in her bed with her trach tube laying ON TOP of her neck! OMG OMG OMG OMG! I quickly cleaned my hands with sanitizer, untied her trach ties, put a rolled up blanket under her neck, grabbed the trach, inserted the obturator and POP! Back in her neck it went! When Kenny and I were going through Trach training at the hospital, Leslie Justice (ENT Specialist) told me that if something like this ever happened and I was by myself, adreniline would get me through! Phew! Right after I got her trach back in her neck and secured, here comes Mikki, her nurse, walking in the front door. I laughed and said, "You missed all the action--I needed you 5 minutes ago!" But Ava still wasn't done playing with us... About 30 minutes after Mikki arrived, I heard some commotion once again coming from Ava's room and Mikki said, "I need your help." What I was afraid of had happened. Ava's humidifier being off had caused her lungs to get overly dry and her trach was plugged with mucous. Mikki informs me that she is going to suciton what she could but that I needed to get a new trach ready. 'You gotta be kidding me' I thought. TWICE within 30 minutes??? She laid completely still though, I think she knew we were trying to help her. Afterward, we cleaned her up and she got the prize, a long snuggle-fest with mommy. She laid her little head on my shoulder and just cuddled with me for about 15 minutes. Mikki told me about another little giril she had cared for that used to take her trach out for fun! I couldn't imagine. But Mikki said, You just wait til she gets bigger. I'm telling you kids think it's funny to freak you out!" So there you have it. My excitement for the day. I have been officially broke in to replacing a trach tube on an infant. Haha!!!

Monday, October 20, 2008

*AVA HAD A VERY SPECIAL VISITOR THIS PAST WEEKEND!*
This past Saturday, October 18, a very special lady whom I'll just call 'Katherine' paid a visit to us. To give you all a little background, Katherine is an Anat Baniel Practitioner residing in Philadelphia, Pa. I found her during some self searching on the internet. For those of you who do not know about The Anat Baniel Method, you can read about it at:
www.anatbanielmethod.com
So anyway, I found this woman on the internet and we talked a few times about Ava and her motivation for becoming a practitioner (her own grand daughter was born with a brain abnormality) and we had planned on trying to get together sometime later in the year (this conversation took place back in May sometime). My plan had been to hold a fund raiser to pay for the therapy which is not covered by Medicaid or other traditional insurance. Though not extremely expensive, each session runs anywhere from $50-$100 per session and you typically do 6-12 sessions in a row. I quit communicating with her back in July because that is when Ava went into the hospital and, quite frankly, didn't expect to hear from her as she sounded quite busy with her practice in Philly. Unbeknowns to me, Katherine had been following Ava's story on this website and felt compelled to come and meet this little girl from Centerburg, Ohio. So she contacted me and expressed her interest in traveling from Philly to work with Ava in our home--FREE OF CHARGE! What a blessing! And she is hooking us up with other practioners so that we can continue this cutting edge therapy for Ava! We still plan on holding a fund raiser at some point to pay for things like this, but she was kind enough to start us off without asking for a dime. So Katherine, if you're reading this--thank you! I have never held a fund raiser, so if any of you have any ideas as to what kind of fund raiser may work I would be glad to hear any suggestions, as I have never done anything like this:) I would like to hold some type of fund raiser after the holidays, maybe in late January sometime.

By the way, I decided to post a really cute picture of Aohdan and I playing in the straw pit at Pigeon Roost Farm last weekend. We get so busy with Ava, that I really enjoy when we can take Aohdan out and spend an afternoon with him. He had soooo much fun!

Tuesday, October 14, 2008

*HER PHYSICAL THERAPIST HAD HER SITTING UP!*
When you have a healthy child, you take for granted that they will roll over and crawl at 7 months, and start pulling themselves up shortly after that. Heck, most kids are WALKING by the time they're 1 year old! Ava has brought me patience. She didn't really smile until she was at least 6 months old. And she is just now starting to coo and let us know there is a little person in there. I cherish every tiny little step!
In the picture above, Ava is sitting up got the first time EVER! And she is 10 months old. Okay. So maybe she was getting some support from a boppy pillow, but SHE WAS SITTING UPRIGHT! After months and months of laying in bed or being propped up or held, Ava's Physical Therapist wrapped a Boppy pillow around her waist and she SAT THERE! When you're dealing with a brain injury, you get sooo much negativity from Dr's and other medical staff telling you "They may never do this..." or "They probably won't ever..." Ugghhh. Just a quickie 'brain injury' crash course...when the brain sustains an injury, the neurons do not get the messages where they need to go and, as a result, the muscles and (well everything) do not work like they should. Most brain injured children and adults tend to be either 'rigid/high tone' or 'floppy/low tone.' Ava has always leaned towards high tone. Today her Physical Therapist commented that, even though she was 'stiff' she was impressed with what she could do, especially since she's been in the hospital for 2 months with no therapy. She said her hands are nice and open and her feet have good flexion (sp?). She also said when she sat her up, Ava pushed down with her hands on the pillow, another good sign. She has also been tracking with her eyes quite a bit.
We have a long road ahead of us but it is evident that our Lord Jesus is with Ava! She has received so much prayer, that it is as if she has her own army of angels with her every minute of every day. I have no doubt, you can look into her beautiful little dancing eyes and just see a miracle taking place right in front of you. She wakes up each morning ready to inspire us even more! I cannot imagine what these kids have to endure, but if I die tomorrow, my life has forever been changed by this beautiful little angel.

Wednesday, October 8, 2008

*HAD A SLIGHT CASE OF GASTRITUS*
Technically, Gastritus is an inflammation of the mucous in the stomach lining. In Ava's case, or any kid who has a feeding tube, they can get this condition if their G-tube gets accidentally tugged on. Yesterday morning Mikki, Ava's nurse, was going through her morning routine and barely touched Ava's G-tube and it set her off into a hysterical, crying, quivering mess. Poor little baby! She was hurting! So I suggested that maybe she had gas on her belly and Mikki opened the valve on her G-tube to let any excess air escape, and we saw all this blood coming up her feeding tube! It took me back to several months ago when I woke up at 6am to her having blood all over her blankets, face and matted in her hair. But having gone through this before, I wasn't all that concerned this time since I knew the ER staff would just give her pain meds and that's it. So we called her pediatrician who advised us to just watch her, which we did. By mid afternoon she was sleeping so soundly that Mikki cleaned around her trach site, changed her diaper AND clothes and she SLEPT through it all! Haha! It amazes me what these kids get used to ya know? So she is fine and no more blood today. We think her G-tube probably got tugged and caused it to bleed from the inside, which would explain the blood in her belly. Ahhhhhhhh! *big sigh* But we are really are doing well! We pretty much have all of our nursing staff in place, and are settling into a routine.
**HOUSING UPDATE** Kenny and I are [temporarily] putting the house hounting on hold. According to our legal counsel, it is a safe bet that we'll be in the house for several more months, at least until spring sometime. Many of you have given us leads on homes for rent and I have followed up on all of them--THANK YOU:) We will make a final decision on where we will move after the first of the year.

Friday, October 3, 2008

"When you learn to let go of the life that you had planned for yourself...and learn to appreciate the life that God has waiting for you...it will take your breath away."
Look at that beautiful baby in the picture above--doesn't she look beautiful! God really is so good! It is amazing how far she has come, considering how sick she was. It is like looking at a new baby! Not to mention, just look at her! She is losing the baby look and starting to look like a little girl. Now that she doesn't have to struggle to breathe, and she isn't riddled in pain from severe Acid Reflux Disease...she can FINALLY concentrate on just enjoying and interacting with us and LIVING! Yay! Since coming home she has been tracking, following our voices, moving her hands up and down when she wants held and, best of all (for me) she is coo-ing! When she wants something, and you're not paying attention, she is actually learning how to get your attention by grunting and coo-ing, which is amazing since she has a trach (most kids with trachs cannot make noise).
I cannot thank everyone enough for all your heartfelt prayers! Kenny and I really do feel so blessed to have the coolest circle of friends & family. I want to send out a special thank you to Pastor Bob Swanger and his family. Pastor Bob and the entire River Church, have faithfully been praying for Ava and our family since the day she was born. They have not missed a single week! I would like to also ask for special prayer for Pastor Bob, who has stage 4 Melanoma. Please pray for he and his entire family to have peace and strength throughout this trial. Pray for Pastor Bob's complete healing, that he may see God's goodness in the land of the living!
We still have quite a journey ahead of us, but Ava is healthy, she is progressing and we are optimistic and confident about her future! Consider your prayers for health and recovery - answered! Or at least in the progress of being answered!
Love you all!
Vicki Ballenger

Tuesday, September 23, 2008

*Can I just say that we have such an AWESOME and LOVING God!*
I just have to begin by saying how cool it is when God really let's His presense be known in your life. I have sooo many stories about things that have taken place that can ONLY be God at work! I just Praise Him in this storm as we walk through this journey with Him holding our hand! It is such an incredible feeling when you come to a point in your walk that you really 'get it.' It is truly as if you are looking at the world with a new pair of glasses and see all the miracles taking place all around you that you NEVER would have noticed unless you had walked through a bit of fire. Kenny and I have definitely walked through some fire but I truly feel so BLESSED that we both have been delivered into such a better state of mind. Wow. Everything from surrounding us with strong Christian friends and family that have been an invaluable source of strength and comfort, to having only smooth dealings with Medicaid Waiver and other notoriously hard-to-deal-with agencies, to Him watching over our financial situation and providing a way no matter HOW bad it has looked at times! There is way more than I can tell right now, but just a most gracious THANK YOU to everyone who has been praying for us because BELIEVE ME we have felt and received every single one of them. We continue to ask for prayer!
On to little Miss Ava... Well our little one came home last wednesday, September 17th, and it has really been a smooth transition! There has definitely been some sleeplessness and stress but it has been tolerable! For those of you who may not be aware. Ava had a tracheostomy in August and they decided to send her home with a ventilator to give her a little extra support. She is doing all the breathing herself, the ventilator just makes it easier for her to keep her little lungs properly inflated. Kenny and I just finished selling off a bunch of stuff recently (one of them being our dining room furniture) and now with the dining set gone, it has opened up the dining room and that is now Ava's room - and it works out perfectly! We never used the dining room anyway because it was 'the good furniture' and I was always afraid of scratching it or otherwise. I am actually so glad to be getting rid of stuff like that in our life. What is the use of keeping hold of something just because it looks pretty? See, God was just making room for our baby to come home. He knew the dining room would be better used for her anyway! Since being home she has remained healthy and the trach, even though it once scared me to death, is actually making it much easier for us to keep her lungs clear by allowing us to suction her more effectively than before.
*Update in our housing situation* It is looking like we have a little longer in the house than we originally thought, not a ton longer, but it will probably be after the first of the year before we need to be out. Our house is going up for sale on December 12th, and if I understand the process correctly, it can take months and months for it to sell. We are continuing to keep an eye out for the right house to rent in delaware county so I DO thank everyone who is keeping an eye out for us.

Saturday, September 13, 2008

*A NASHVILLE RECORDING ARTIST WROTE A SONG ESPECIALLY FOR AVA!*
I don't know if anyone has heard of the organization called 'Songs of Love.' In a nutshell, it is an organization that makes songs for children with medical challenges. We were approached by the social worker at Nationwide Children's Hospital and asked if we would like to have a song done for Ava. So of course I said Yes, but wondered how it worked. It was explained that singers and song writers from all over the world are signed up to do this and WOW what a wonderful gift! The social worker asked me what type of music I would prefer her Song of Love to be composed in and, you all know me, I said gospel bluegrass! So here is the link if any of you would like to download and listen to Ava's song, it is so cool! It is 0.99 for either the song or ringtone and all proceeds go to the Songs of Love foundation.
https://qs1322.pair.com/songlove/store/child/
After you click on the link above, you have to Type in the child's last name (Ballenger) and song #(16335). So you'll type in:
I hope you all enjoy Ava's Song of Love as much as we have!
PS: Discharge date set for this coming wednesday!