Before I forget, I now have a facebook page. So if you don't see updates and such here, look for them there. It is under Vicki Ballenger, Columbus Oh
So, first of all let me begin by saying I am sooooo sorry that I am a loser and have not updated Ava's site in nearly 2 months! Haha! Really though, I apologize that it's been so long. I know that so many people depend on this site to keep up with our little sweetie's progress. There is MUCH to tell, oh where to start...
Well, I'll just start with some great news we recieved today. We have been waiting and waiting to get into neurology and finally had a follow-up clinic today and the Doc gave us the go ahead to start weaning Ava off of Phenobarbitol. Many of you may remember that Ava was in an 'induced' coma for 11 days following her birth. That was due in part to being loaded with Phenobarbitol, an extremely nasty and strong siezure medication. Although necessary in her early days, I am happy to see it going BYE BYE! So great news there.
Next piece of good news is that, although Ava HAS battled several viruses and such this past winter, she has been able to stay out of the hospital. When you have a child with a trach and on a vent, they pretty much prep you to have 2-3 hospitalizations during the cold & flu season. Praise the good Lord she has weathered all of it at home!
By the way, if you took a look at the new picture I posted of Ava sound asleep in her chest percussion-therapy vest...I just wanted to assure everyone that she really IS AWAKE ALOT I just always seem to snap pictures of her cute little self asleep. I don't know why:) I am not a real natural picture person, as far as I'm not that person who has 10,000 pictures of their kids. I actually wish I was better in this area--haha! I HAVE pictures of my kids, but I'm not great at getting their pictures done at holidays, and you know:)
Aohdan is doing really good, and sooooo smart. He really amazes me with his intelligence and his wit. He is always doing something funny to make someone laugh. He actually reminds me a lot of my oldest brother, mark, the way he is just goofy, but goofy because he enjoys making you laugh. I always think to myself how our kids are on two extremes. Ava is extremely physically challenged and is not able to communicate with us real well, and it is almost as if God gave Aohdan a little extra in the area of communication to make up for it. And he is always so concerned for his little sister. Always coming in her room to check on her and asking how she's doing. He knows all the nurses (even ones who don't work for us anymore) and even knows when they are supposed to work. Like is Mikki and Dee switch days, Aohdan knows it and asks us why so and so is here ...
Ava has made many many strides both physically and mentally. She is 15 months old, is becoming very vocal with her grunts, coos and cries. She definately makes her wishes known. Last week I had to lay her down while I got her meds ready, and she was MAD let me tell you! I heard her crying from the kitchen, but figured she would be ok until I got her stuff ready. Next thing I know I hear her ventilator beeping like crazy, telling me it was disconnected. So I run in there...Oh it's disconnected alright...IT WAS ON THE FLOOR! I looked over and Ava looked over at me as if to say, "Well. I was trying to tell you I wanted picked up!" She had thrown a little temper tantrum, and smacked at her trach, which in turn popped of her vent circuit, then smacked at her vent again, which sent the whole thing sailing to the floor. Unbelievable. Here is a little girl who was not supposed to live, suffered a severe brain injury, and every therapist who works with her is like, "she doesn't act like a typical infant who has suffered brain damage." GO AVA! I remember a little over a year ago I thought my life had come to an end, and now I can assuredly say that she has brought so much to our lives it cannot be expressed in words. Sure, there are still days I yearn to see her pull herself and start walking, or hear her say 'Mama.' I have accepted whatever her life is going to be and I love her like crazy regardless.
I also have to say that I have the greatest husband ever. Seriously. Kenny is so good with Ava. Those close to us know that we have had a lot of, well, let's call them 'nursing challenges' lately. So there have been many, many nights and weekends that we have had no coverage. I got sick right after we moved into the new house. And I mean sickkkk. Upper respiratory virus, double pink eye, uggghhh. And I am sure I wined a lot--hehehe. All I wanted to do for a solid week was sleep, but we had no nurse at night for almost the entire week. One sunday after church, we came home and I laid down on the couch, and that's all she wrote. I was gone for hours. When I woke up, Kenny had cleaned the house, had candles lit, dinner made AND had done all of Ava's cares, including trach care, bath, diaper, g-tube site. It is no small feat to care for her, and it is time consuming, so I just want to take a minute to say how much I appreciate my hubby.
So the last thing is that Kenny and I have moved into our new home and have finally gotten settled. We story about how we found our house is a story in itself, too long for this time around, I'll share that story later:)
Thank you everyone for all your prayers and Praise the Lord for being with us every step of the way. I hope if any of you are going through tough times in life I just want to say, "Stay encouraged." Sometimes life just sucks, but remember to stay positive and keep praying and praising throughout! We love you all!
So, first of all let me begin by saying I am sooooo sorry that I am a loser and have not updated Ava's site in nearly 2 months! Haha! Really though, I apologize that it's been so long. I know that so many people depend on this site to keep up with our little sweetie's progress. There is MUCH to tell, oh where to start...
Well, I'll just start with some great news we recieved today. We have been waiting and waiting to get into neurology and finally had a follow-up clinic today and the Doc gave us the go ahead to start weaning Ava off of Phenobarbitol. Many of you may remember that Ava was in an 'induced' coma for 11 days following her birth. That was due in part to being loaded with Phenobarbitol, an extremely nasty and strong siezure medication. Although necessary in her early days, I am happy to see it going BYE BYE! So great news there.
Next piece of good news is that, although Ava HAS battled several viruses and such this past winter, she has been able to stay out of the hospital. When you have a child with a trach and on a vent, they pretty much prep you to have 2-3 hospitalizations during the cold & flu season. Praise the good Lord she has weathered all of it at home!
By the way, if you took a look at the new picture I posted of Ava sound asleep in her chest percussion-therapy vest...I just wanted to assure everyone that she really IS AWAKE ALOT I just always seem to snap pictures of her cute little self asleep. I don't know why:) I am not a real natural picture person, as far as I'm not that person who has 10,000 pictures of their kids. I actually wish I was better in this area--haha! I HAVE pictures of my kids, but I'm not great at getting their pictures done at holidays, and you know:)
Aohdan is doing really good, and sooooo smart. He really amazes me with his intelligence and his wit. He is always doing something funny to make someone laugh. He actually reminds me a lot of my oldest brother, mark, the way he is just goofy, but goofy because he enjoys making you laugh. I always think to myself how our kids are on two extremes. Ava is extremely physically challenged and is not able to communicate with us real well, and it is almost as if God gave Aohdan a little extra in the area of communication to make up for it. And he is always so concerned for his little sister. Always coming in her room to check on her and asking how she's doing. He knows all the nurses (even ones who don't work for us anymore) and even knows when they are supposed to work. Like is Mikki and Dee switch days, Aohdan knows it and asks us why so and so is here ...
Ava has made many many strides both physically and mentally. She is 15 months old, is becoming very vocal with her grunts, coos and cries. She definately makes her wishes known. Last week I had to lay her down while I got her meds ready, and she was MAD let me tell you! I heard her crying from the kitchen, but figured she would be ok until I got her stuff ready. Next thing I know I hear her ventilator beeping like crazy, telling me it was disconnected. So I run in there...Oh it's disconnected alright...IT WAS ON THE FLOOR! I looked over and Ava looked over at me as if to say, "Well. I was trying to tell you I wanted picked up!" She had thrown a little temper tantrum, and smacked at her trach, which in turn popped of her vent circuit, then smacked at her vent again, which sent the whole thing sailing to the floor. Unbelievable. Here is a little girl who was not supposed to live, suffered a severe brain injury, and every therapist who works with her is like, "she doesn't act like a typical infant who has suffered brain damage." GO AVA! I remember a little over a year ago I thought my life had come to an end, and now I can assuredly say that she has brought so much to our lives it cannot be expressed in words. Sure, there are still days I yearn to see her pull herself and start walking, or hear her say 'Mama.' I have accepted whatever her life is going to be and I love her like crazy regardless.
I also have to say that I have the greatest husband ever. Seriously. Kenny is so good with Ava. Those close to us know that we have had a lot of, well, let's call them 'nursing challenges' lately. So there have been many, many nights and weekends that we have had no coverage. I got sick right after we moved into the new house. And I mean sickkkk. Upper respiratory virus, double pink eye, uggghhh. And I am sure I wined a lot--hehehe. All I wanted to do for a solid week was sleep, but we had no nurse at night for almost the entire week. One sunday after church, we came home and I laid down on the couch, and that's all she wrote. I was gone for hours. When I woke up, Kenny had cleaned the house, had candles lit, dinner made AND had done all of Ava's cares, including trach care, bath, diaper, g-tube site. It is no small feat to care for her, and it is time consuming, so I just want to take a minute to say how much I appreciate my hubby.
So the last thing is that Kenny and I have moved into our new home and have finally gotten settled. We story about how we found our house is a story in itself, too long for this time around, I'll share that story later:)
Thank you everyone for all your prayers and Praise the Lord for being with us every step of the way. I hope if any of you are going through tough times in life I just want to say, "Stay encouraged." Sometimes life just sucks, but remember to stay positive and keep praying and praising throughout! We love you all!
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