Hi there..
I was hiding under your porch because I loooove you...can I stay?
Silly face...x2 :)
Sunday, August 28, 2011
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'
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
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
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.
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?
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!
Friday, August 26, 2011
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.
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.
Thursday, August 25, 2011
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
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!
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!
Tuesday, August 23, 2011
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:)
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:)
Monday, August 22, 2011
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.
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.
Saturday, August 20, 2011
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!
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
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
Friday, August 19, 2011
Feels like I'm getting sick
It seems like the last couple times I've been through a stressful time in life I've ended up getting sick. It seems it may be happening again, but this time it's a little different. For the past several months I've had the feeling of thickness in my throat, and have to keepo clearing it. It started out mild, but the last week it's really kicked up a few notches. I actually drove myself to the hospital yesterday and the ER doc told me she things I have esophageal reflux. Prescribed me reflux meds, then told me to go see ENT. Ahhh... I am so sick of Dr's, really I am.
If you're reading this I would appreciate sending some prayer my way. I need all the energy I can get for the months to come.
If you're reading this I would appreciate sending some prayer my way. I need all the energy I can get for the months to come.
Thursday, August 18, 2011
Small apology
I want to apologize if anyone is offended as some of my posts I have a few harsh words. But I feel I need to be real and not sugar coat my emotions. I love the Lord Jesus with all my heart and he knows I'm hurting right now. He knows what's in my heart. No sense trying to be all soft and proper on the outside when that's not how I'm feeling inside. My mom used to always tell me, "Let it out," so that's what I'm doin.
Vicki
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!
Reality sets in, now decisions to ponder
So. Now that we have an official diagnosis there are some upsides to this. Aohdan now qualifies for 'The Autism Scholarship' which entitles him to $20,000/year towards anything he needs basically. This can be therapies, special school, anything to help him really. I don't think it pays for any specialty Dr's, but it does pay for lots of other stuff. I have also applied to receive the family grant from Generation Rescue, which is the foundation started by Jenny McCarthy. The grant will help us pay for special Dr's for Aohdan. The frustrating thing is that autism is STILL considered a behavioral disorder and not a physical disorder. Even though it's been shown over and over that autistic kids almost always have major gut problems that affect their whole system.
So one of the really tough things I am struggling with is figuring out how Aohdan learns, what is his learning style? I was looking over his testing results last night, and it made me really down. His IQ scores were below the 5th percentile. Which anyone who knows him, knows that he is smart. He comes up with some really deep questions and comments at times. But everytime they have tested him he fails miserably. So then I am left feeling more kicked around, like we have somehow failed him. The Dr kept trying to get Kenny and I to go to a parenting class, and was talking about teaching him at home. Blah blah blah blah. Really buddy? So the reason I mentioned the IQ thing is because I am seriously considering sending him to a special school for the first few years to see if we can figure out how he learns best so he can learn to flourish instead of always feeling panicked. The thought of sending him to a mainstream school is absolutely terrifying. I know I have to step back and allow him to experience to 'real world' but this is a little different. He doesn't see the world like we do, in fact I don't know how he sees the world, but I want to figure that out...
When a Dr gives you a bunch of paperwork and tells you to contact your county mrdd...it is a kick in the gut. I actually felt nauseous. But as I was so kindly reminded by my friend Theresa this morning, I know those results don't give an accurate picture of Aohdan. I know he's smart, but he does not know how to show that when they do these stupid intelligence tests. Listening to the cocky bastard sitting across from me tell me that the Stanford Binet is the "Gold standard" for IQ testing. This is same man who sat across from me and told me that the Gluten-free Casein-free diet is 'folk medicine; and that parents who "think they see results are really just seeing a placebo effect." I just wanted to yank his dumb a--- across that desk and shove all the documentation in his face proving that most autistic children benefit from the diet, not all granted, but most. I felt my blood start to boil when he started knocking biomedical, but I kept my cool. What an idiot... I was actually talking to him in my head, it just didn't come out of my mouth, lol. My thoughts would have sounded something like, "Just give me the paperwork you cocky bastard. And take your prideful know-it-all-attitude and shove it where the son don't shine. I shall make you eat your words.
But is it hard, so so hard, to hear someone tell you these things. I started to feel those old feelings of being overwhelmed creeping up on me last night. It was like deja vu, back to when Ava was born. Here I was feeling like I am starting this special needs journey all over again. I am looking at my already-packed planner and trying to figure out time to sit down and fill out a gazillion online forms, visit the school and make decisions about that, make more GFCF goodies for the freezer, oh and buy him more clothes for school and supplies I'm sure. Wait, I almost forgot, I still have to study and take my state boards for nursing this month. Ahhh, someone please, Calgon, anyway, take me away. I need a beach, and sand, and wine, lots of it, lololol.
But seriously everyone, just keep praying for us. I know God is there walking us through this, but I gotta have the occasional pity party!
Love you all and thank you for reading my updates!
Tuesday, August 16, 2011
One more thing...
I just want to add that this will be an adjustment for all of us. But I want to ask everyone to please remember that Aohdan is, well, still just Aohdan. He is the same funny, witty, loving boy, now he just has a diagnosis of autism. I just wanted to add that...
Aohdan has officially been diagnosed as Autistic
It is sort of surreal to be typing this post. Our focus for most of the past 3 years has been Ava. I never imagined in a million years that I would have to one day say that my little girl has CP and my son is Autistic. I've been mentally preparing for this diagnosis of Aohdan's for quite some time. Something in me just knew there was something a-miss.
My first memory of something being wrong was when Aohdan was about 18 months. He only had about 5-10 words, mama, dada, papa, bye-bye, etc,etc. Also I noticed that he didn'y play with his toys like other kids. His big cars he would flip over and spin the wheels. He would sit and watch the washing machine spin. And he would open and close doors constantly, open-close-open-close-open-close, and watch the hinges while he was doing it.
At the time this was going on I was about 6 1/2 months pregnant with Ava, but I remember picking up Jenny McCarthy's book about her son Evan. It was brand new on the shelves at the time. And I remember Kenny asking why I bought a book about an Autistic child. I couldn't explain why, except that I had read her other books on pregnancy and thought she was hilarious. So I read this book, and had my first "Ah hah" moment about the doors, and the spinning objects. I remember the next Sunday at church I literally BAWLED the entire service. Like snotty, sobbing, swollen eyes bawling. Kenny knew I was upset about thinking Aohdan might be Autistic, but honestly I think he figured the pregnancy hormones were getting the better of me as well.
Shortly after Aohdan turned 2 in November 2007, his language took off. He went from barely speaking to speaking in fuill sentances. So I was like, "Phew" guess he's not autistic! Then as you all know our world was rocked beyond belief in December 2007 with Ava's traumatic birth. 2008 really was a big blur. Ava spent all year in and out of children's hospital, we lost our house, life was pretty messy. And honestly as long as Aohdan was eating and not sick, we couldn't focus on more than his basic needs.
So shortly after we moved to Ashley in early 2009, and life settled down a bit, I finally was able to put more focus on Aohdan. I noticed more quirky behaviors. But there was always someone there to say, "Oh that's just a boy thing," or, "that's how all of the boys in our family behaved," or "he'll grow out of it let him be a kid." All in all it took me going to FOUR specialists to finally get him, and us, the help he needs by finally getting a diagnosis. The Dr who finally saw it explained that his autism is unique because he DOES have a lot of language, but doesn't always understand things... if that makes sense. He DOES pick up on emotion, something most autistic kiddos don't, but he does not know how to act around peers his own age. He stated that he felt his autism, called PDD-NOS by the medical world, was likely reversable with intervention.
So thank God for friends around me who have already experienced this that can help, and the knowledge I've required through my own research. But this was a hard, hard pill to swallow. I remember when Aohdan was 3 and I really started to suspect he was on the spectrum, I remember talking to God saying, "Please God, not Aohdan. Please just let me enjoy ONE healthy child that doesn't have a medical diagnosis, that doesn't need to see a bunch of Dr's. But that is not that hand we were dealt. And who am I to question the God who got us through SO MUCH in 2008, and still is. I know He has our situation under control, and I am prepared to battle this thing called autism. We have already made radical changes to Aohdan's diet, and have already witnessed some great improvements.
But I guess what I really need is just to say a little prayer for our family. It IS hard, I won't lie. I know there will be good and bad days, and there will be days Kenny and I will need some encouragement. I just pray for strength to keep pressing on.
My first memory of something being wrong was when Aohdan was about 18 months. He only had about 5-10 words, mama, dada, papa, bye-bye, etc,etc. Also I noticed that he didn'y play with his toys like other kids. His big cars he would flip over and spin the wheels. He would sit and watch the washing machine spin. And he would open and close doors constantly, open-close-open-close-open-close, and watch the hinges while he was doing it.
At the time this was going on I was about 6 1/2 months pregnant with Ava, but I remember picking up Jenny McCarthy's book about her son Evan. It was brand new on the shelves at the time. And I remember Kenny asking why I bought a book about an Autistic child. I couldn't explain why, except that I had read her other books on pregnancy and thought she was hilarious. So I read this book, and had my first "Ah hah" moment about the doors, and the spinning objects. I remember the next Sunday at church I literally BAWLED the entire service. Like snotty, sobbing, swollen eyes bawling. Kenny knew I was upset about thinking Aohdan might be Autistic, but honestly I think he figured the pregnancy hormones were getting the better of me as well.
Shortly after Aohdan turned 2 in November 2007, his language took off. He went from barely speaking to speaking in fuill sentances. So I was like, "Phew" guess he's not autistic! Then as you all know our world was rocked beyond belief in December 2007 with Ava's traumatic birth. 2008 really was a big blur. Ava spent all year in and out of children's hospital, we lost our house, life was pretty messy. And honestly as long as Aohdan was eating and not sick, we couldn't focus on more than his basic needs.
So shortly after we moved to Ashley in early 2009, and life settled down a bit, I finally was able to put more focus on Aohdan. I noticed more quirky behaviors. But there was always someone there to say, "Oh that's just a boy thing," or, "that's how all of the boys in our family behaved," or "he'll grow out of it let him be a kid." All in all it took me going to FOUR specialists to finally get him, and us, the help he needs by finally getting a diagnosis. The Dr who finally saw it explained that his autism is unique because he DOES have a lot of language, but doesn't always understand things... if that makes sense. He DOES pick up on emotion, something most autistic kiddos don't, but he does not know how to act around peers his own age. He stated that he felt his autism, called PDD-NOS by the medical world, was likely reversable with intervention.
So thank God for friends around me who have already experienced this that can help, and the knowledge I've required through my own research. But this was a hard, hard pill to swallow. I remember when Aohdan was 3 and I really started to suspect he was on the spectrum, I remember talking to God saying, "Please God, not Aohdan. Please just let me enjoy ONE healthy child that doesn't have a medical diagnosis, that doesn't need to see a bunch of Dr's. But that is not that hand we were dealt. And who am I to question the God who got us through SO MUCH in 2008, and still is. I know He has our situation under control, and I am prepared to battle this thing called autism. We have already made radical changes to Aohdan's diet, and have already witnessed some great improvements.
Monday, August 15, 2011
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.
Well, Goodnight all.
MMMmmm Buckeye!!
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Tomorrow we FINALLY find out
There is a LOT of history to this post. Too much to go into right now. But Kenny and I have been suspicious for quite some time that Aohdan has been battling something...something that we have not been able to put our fingers on. He is a wonderfully bright, funny, loving little boy. But he struggles. He struggles with conversation. He does not seem to quite 'fit in' with kids his age. As a mom it is as if there is some kind of block. So I'll go more in detail about this topic at a later time. When I actually have time to sort out my thoughts more. But please keep Aohdan in your prayers as we struggle to figure out how to help him with his language, communication, and social skills.
Sunday, August 14, 2011
Trying so hard!
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Enjoying Sunday Morning Service
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Saturday, August 13, 2011
Sleeping Angel...
I love to watch Ava when she sleeps. Often times I go in her room late at night, lean over her crib, and just look at her. Everything is silent except the steady 'breathing' sound of her ventilator. Sometimes she coos and sings in her sleep, as if she is entertaining Angels in her dreams.
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Spaghetti Dinner Fundraiser and Prize Raffle
The River Church will be hosting a spaghetti dinner and prize raffle on Saturday, October 15, 2011 from 3:30-7:30pm. Raffle tickets are $10 each. Each ticket is good for admittance into the all-you-can-eat speaghetti dinner and also gets you entered into the prize drawing. If you cannot make it to the spaghetti dinner but would still like to participate in the fund raiser that is okay! Simply purchase your raffle tickets, your name will still be entered into the prize raffle and you do not have to be present to win!
How to purchase tickets:
In person at
The River, Church in a Barn
2419 State Route 42 North
Delaware, Ohio 43015
By mail:
Mail your chack made payable to Vicki Ballenger
(write Support Ava Fundraiser in memo section)
2419 State Route 42 North
Delaware, Ohio 43015
Or email:
vicki_ballenger@yahoo.com
How to purchase tickets:
In person at
The River, Church in a Barn
2419 State Route 42 North
Delaware, Ohio 43015
By mail:
Mail your chack made payable to Vicki Ballenger
(write Support Ava Fundraiser in memo section)
2419 State Route 42 North
Delaware, Ohio 43015
Or email:
vicki_ballenger@yahoo.com
Wednesday, March 2, 2011
Once again it has been way to long since my last update. There is lots and lots to share since, what, November? Gosh it has been awhile! Here goes...
AVA: All has been good with her. We made it through, yet another, cold and flu season without a hospitalization! The Docs tell me they don't have many trach patients that have managed to make it 2 years without an illness requiring an overnight stay. We absolutely feel extremely fortunate to have stayed out of the hospital. We also have a freegin awesome nursing staff who know Ava very well and watch her like a hawk! There are a couple things that have developed recently. #1, she is not growing. Literally. She has not grown an inch in over a year. She is the exact same weight and length that she was this time last year. So currently we are working with endocrinology and nutrition to come up with a plan to help her little body kick into gear. I know a lot of kiddos with her type of disability do not grow well, but no growth in a year? So we're digging into that mystery. #2, her little feet are turning in and dropping. No matter what we do we cannot keep it from happening. So we took her to see physical medicine, and they have approved her for botox treatments. Sounds wierd, I know, but botox has been used to treat spaticity in kiddos with CP with great results! So she is getting botox sometime in March. Keep her in your prayers for this procedure, both for minimal pain and for the procedure to correct her little feet!
AOHDAN: Aohdan is doing well! He is in pre-school and scheduled to start kindergarten this fall. He continues to be his funny, witty, and ornery self!
KENNY AND I: Kenny and I are doing well. I am scheduled to graduate from nursing school in June, and life is just...well...hectic right now. I am not sure of my plans once I graduate. I entered into nursing school with the lojg-term goal of getting my nursing license with Ava's disability in mind. We have an excellent nursing staff right now, and I really don't see things changing, so I have some decision to make. Continue my education on a part time basis and get some experience out in the field. Go back into the car business full time. Or just hang out and wait to see where God takes me. Kenny and I are also doing well. We are still renting the same house in Ashley. Though currnently it does not look very promising to purchase this home, I am hoping for a miracle. We definitely do not want to move again! But the two of us are doing really well! We make an effort to get out of the house and go on 'dates.' We also try once a month to go away somewhere for a night, just the two of us. We bought tickets to go and see Kirk Cameron's, 'Love worth fighting for.' It is a marriage conference for couples. It is great to go to marriage 'tune-ups!' Kenny and I have a Great marriage..and I want to keep it that way!! We actually try to go to at least (1) marriage-related event a year. We were told once (shortly after Ava's birth) that the divorce rate after a child death/major injury is like 80% within 5 years. Crazy huh?! We both decided that THAT is not an option for us! Besides, we're like peas and carrots=v)
Well, sorry if some of this kinda runs together! Haha! I made up my mind I was going to FINALLY update her caring bridge site, but typed really fast cuz I have clinicals tomorrow at 6:30am.
Thank you all for your continued prayers! God bless you all!
AVA: All has been good with her. We made it through, yet another, cold and flu season without a hospitalization! The Docs tell me they don't have many trach patients that have managed to make it 2 years without an illness requiring an overnight stay. We absolutely feel extremely fortunate to have stayed out of the hospital. We also have a freegin awesome nursing staff who know Ava very well and watch her like a hawk! There are a couple things that have developed recently. #1, she is not growing. Literally. She has not grown an inch in over a year. She is the exact same weight and length that she was this time last year. So currently we are working with endocrinology and nutrition to come up with a plan to help her little body kick into gear. I know a lot of kiddos with her type of disability do not grow well, but no growth in a year? So we're digging into that mystery. #2, her little feet are turning in and dropping. No matter what we do we cannot keep it from happening. So we took her to see physical medicine, and they have approved her for botox treatments. Sounds wierd, I know, but botox has been used to treat spaticity in kiddos with CP with great results! So she is getting botox sometime in March. Keep her in your prayers for this procedure, both for minimal pain and for the procedure to correct her little feet!
AOHDAN: Aohdan is doing well! He is in pre-school and scheduled to start kindergarten this fall. He continues to be his funny, witty, and ornery self!
KENNY AND I: Kenny and I are doing well. I am scheduled to graduate from nursing school in June, and life is just...well...hectic right now. I am not sure of my plans once I graduate. I entered into nursing school with the lojg-term goal of getting my nursing license with Ava's disability in mind. We have an excellent nursing staff right now, and I really don't see things changing, so I have some decision to make. Continue my education on a part time basis and get some experience out in the field. Go back into the car business full time. Or just hang out and wait to see where God takes me. Kenny and I are also doing well. We are still renting the same house in Ashley. Though currnently it does not look very promising to purchase this home, I am hoping for a miracle. We definitely do not want to move again! But the two of us are doing really well! We make an effort to get out of the house and go on 'dates.' We also try once a month to go away somewhere for a night, just the two of us. We bought tickets to go and see Kirk Cameron's, 'Love worth fighting for.' It is a marriage conference for couples. It is great to go to marriage 'tune-ups!' Kenny and I have a Great marriage..and I want to keep it that way!! We actually try to go to at least (1) marriage-related event a year. We were told once (shortly after Ava's birth) that the divorce rate after a child death/major injury is like 80% within 5 years. Crazy huh?! We both decided that THAT is not an option for us! Besides, we're like peas and carrots=v)
Well, sorry if some of this kinda runs together! Haha! I made up my mind I was going to FINALLY update her caring bridge site, but typed really fast cuz I have clinicals tomorrow at 6:30am.
Thank you all for your continued prayers! God bless you all!
Monday, November 8, 2010
So..people often ask me "How are things?" I always try to acknowledge the tough stuff but focus on the positive stuff and moving forward. The reality is, life is really hard right now. Kenny and I have very little income, we have a special-needs daughter, a 4 year old son who is having difficulty adjusting to pre-school, and I am in nursing school. So needless to say our plate is full. So that's the tough stuff. On the positive side, we are fairing very well despite our circumstances. I have said it before, and I'll say it again...God has blessed our family soooo much. Sure things are tough, but things are also blessed! I still struggle with missing my old career, missing the fast-pace (a different kind of fast pace), and I miss the independance I once had? I guess that's the word I'm looking for. I notice that these days I seek out solitude. I never used to do that before, I was always the social butterfly, always wanted people around me. Not so much now. I used to always hate going to lunch by myself, no I love that time to be alone with myself and my thoughts. I find myself growing in humbleness and humility, life will do that to you. I took so much for granted for so many years...I pray every day that I will never again take for granted my health, my family's health, our finances, the roof over our head.
I do not yet know what the future holds, I try to not worry about tomorrow and stay focused on today, you know, leave it in God's hands. It is hard thing to do for someone who for 15 years their life was focused around planning. Haha. Like for example, Kenny and I are renting a gorgeous house, and would love to buy it, but have no idea right now how that's going to happen. We both would love to think that this will be our home, but if it's not I am ok with it. Neither of us doubt God's ability to provide for our needs.
If you're reading this and you pray, this is what we currently need prayer for:
1). To make time for 'family time' in the midst of the chaos.
2). For Ava to remain healthy through the cold and flu season
3). For Kenny to remain healthy and strong as he takes on my duties and responsibilities.
4). For myself (Vicki) to have a peaceful heart and not let myself get bound up in worry
5). For wisdom in making decisions regarding finances, housing, etc.
Thank you all so much for taking the time to read our updates! We appreciate everyone's continued prayers and encourage you all to share this website with anyone experiencing a health concern, child or otherwise.
Thank you all and God bless!!!
I do not yet know what the future holds, I try to not worry about tomorrow and stay focused on today, you know, leave it in God's hands. It is hard thing to do for someone who for 15 years their life was focused around planning. Haha. Like for example, Kenny and I are renting a gorgeous house, and would love to buy it, but have no idea right now how that's going to happen. We both would love to think that this will be our home, but if it's not I am ok with it. Neither of us doubt God's ability to provide for our needs.
If you're reading this and you pray, this is what we currently need prayer for:
1). To make time for 'family time' in the midst of the chaos.
2). For Ava to remain healthy through the cold and flu season
3). For Kenny to remain healthy and strong as he takes on my duties and responsibilities.
4). For myself (Vicki) to have a peaceful heart and not let myself get bound up in worry
5). For wisdom in making decisions regarding finances, housing, etc.
Thank you all so much for taking the time to read our updates! We appreciate everyone's continued prayers and encourage you all to share this website with anyone experiencing a health concern, child or otherwise.
Thank you all and God bless!!!
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.
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!
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!!!
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.
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!!
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!
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.
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!
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!
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!!!
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!!!
Monday, October 26, 2009
Hey Everyone! Lots to update you all about regarding Ava:) So let's begin with... Ava is coming up on 2 years old in 2 MONTHS! It is so hard to believe that a little under 2 years ago we were going through the toughest trial of our lives and now we are on the other side looking back through different eyes!
So Ava has had a lot of clinics and check ups lately...and still more to come! We have struggled for months to get a group of nurses dedicated to our case and getting everyone happy with their hours...oh what a learning experience it has been let me tell ya! So anyhoo, on with Ava updates. Comparing her with her first 6 months of life--what an incredible difference! She fought so hard to breathe and live her first 6 months of life, that I don't think her little body had a chance to do any 'developing' or so to speak. Her therapists have been working with her for months on, what seems to be, very basic things...like sitting up...reaching for toys...things that seem so easy to you and me ya know? But her little brain was not making the connection for a longggg time. So after almost 2 years, she is sitting up, basically, on her own with a little support. She has a chair called a 'Bumbo' seat that giver her a little extra support from behind, but she holds her own and it is so COOL to see it! I've got a picture so I'll try to get it posted:) She still have a trach and is still on the vent (a lot of people ask me about that so I thought I'd just answer that up front) but she breaths very well when we take her off the vent, we just gotta watch that she doesnt get too thick (meaning her lung secretions) or that she doesn't trick us and fall asleep off the vent, since she doesn't breathe real well off the vent:)
As far as other things, she is still waiting patiently to get into audioology and opthamology so we know where her hearing and vision are. She IS, however, finally getting into a seating clinic this November on the 12th, to get fitted for a custom wheelchair that will not only conform to her size and support needs, but it will also enable us to be SOOO much more mobile with her! She doesn't get out much except for clinics and such. I wish we did get her out more, but it is just very hard. So getting her chair is a very, very exciting thing for us. And I believe we are going to be getting a stander as well! the stander will allow us to take advantage of her willingness to put weight on her feet and legs and allow her to enjoy standing--Yay!! So back to her wheelchair, this custom wheelchair has nifty little custom 'cubby holes' for all her equipment, so we can just strap her in, put her equipment on the back and underneath, and OFF WE GO! Sooooo much easier than what we go through now. one person makes 2-3 trips out to the car to carry all her 'stuff' then we go back and carry her out...ugghh! It IS tasking but we do it. Yay for a wheelchair coming soon! The next thing I need to figure out is a van. We HAVE a van, but it is older and have unknown mileage. It SAYS 140,000, but since we bought it with unknown miles it is hard to say. My wonderful hubby IS an awesome mechanic and, as he puts it, as long as they sell parts fot it, he can keep it on the road. My challenge is this....medicaid will PAY for a wheelchair lift, which is approx $8-10,000 +/-, so I am having a hard time justifying putting a $10,000 lift into a $2,000 van, not that I mind about the van so much, but medicaid will only put a lift in about once every 5-7 years, and I am just not sure if THIS is the van I want to put it in. Decisions, decisions. So I am pondering holding a fund raiser to help us buy a new or newer van (either one I am NOT picky). It would just be sooo nice to have a vehicle with a lift it would make taking her places an absolute BREEZE! So anyhoo, that's been on my brain lately...
I'll post more in a few days. And again, sorry for the inactivity this past summer, it's just been so crazy! I am in school full time, and we are JUST NOW getting to a point where I can plan ahead for things and know that we're going to have nursing coverage. In fact, Kenny and I are making plans to get away for a few days the 3rd week in November, and this will be the FIRST time we have gone away by ouirselves since our HONEYMOON! So I am very excited to say the very least! So again, I'll update more very soon everyone! And THANK YOU all for everything!
Vicki
So Ava has had a lot of clinics and check ups lately...and still more to come! We have struggled for months to get a group of nurses dedicated to our case and getting everyone happy with their hours...oh what a learning experience it has been let me tell ya! So anyhoo, on with Ava updates. Comparing her with her first 6 months of life--what an incredible difference! She fought so hard to breathe and live her first 6 months of life, that I don't think her little body had a chance to do any 'developing' or so to speak. Her therapists have been working with her for months on, what seems to be, very basic things...like sitting up...reaching for toys...things that seem so easy to you and me ya know? But her little brain was not making the connection for a longggg time. So after almost 2 years, she is sitting up, basically, on her own with a little support. She has a chair called a 'Bumbo' seat that giver her a little extra support from behind, but she holds her own and it is so COOL to see it! I've got a picture so I'll try to get it posted:) She still have a trach and is still on the vent (a lot of people ask me about that so I thought I'd just answer that up front) but she breaths very well when we take her off the vent, we just gotta watch that she doesnt get too thick (meaning her lung secretions) or that she doesn't trick us and fall asleep off the vent, since she doesn't breathe real well off the vent:)
As far as other things, she is still waiting patiently to get into audioology and opthamology so we know where her hearing and vision are. She IS, however, finally getting into a seating clinic this November on the 12th, to get fitted for a custom wheelchair that will not only conform to her size and support needs, but it will also enable us to be SOOO much more mobile with her! She doesn't get out much except for clinics and such. I wish we did get her out more, but it is just very hard. So getting her chair is a very, very exciting thing for us. And I believe we are going to be getting a stander as well! the stander will allow us to take advantage of her willingness to put weight on her feet and legs and allow her to enjoy standing--Yay!! So back to her wheelchair, this custom wheelchair has nifty little custom 'cubby holes' for all her equipment, so we can just strap her in, put her equipment on the back and underneath, and OFF WE GO! Sooooo much easier than what we go through now. one person makes 2-3 trips out to the car to carry all her 'stuff' then we go back and carry her out...ugghh! It IS tasking but we do it. Yay for a wheelchair coming soon! The next thing I need to figure out is a van. We HAVE a van, but it is older and have unknown mileage. It SAYS 140,000, but since we bought it with unknown miles it is hard to say. My wonderful hubby IS an awesome mechanic and, as he puts it, as long as they sell parts fot it, he can keep it on the road. My challenge is this....medicaid will PAY for a wheelchair lift, which is approx $8-10,000 +/-, so I am having a hard time justifying putting a $10,000 lift into a $2,000 van, not that I mind about the van so much, but medicaid will only put a lift in about once every 5-7 years, and I am just not sure if THIS is the van I want to put it in. Decisions, decisions. So I am pondering holding a fund raiser to help us buy a new or newer van (either one I am NOT picky). It would just be sooo nice to have a vehicle with a lift it would make taking her places an absolute BREEZE! So anyhoo, that's been on my brain lately...
I'll post more in a few days. And again, sorry for the inactivity this past summer, it's just been so crazy! I am in school full time, and we are JUST NOW getting to a point where I can plan ahead for things and know that we're going to have nursing coverage. In fact, Kenny and I are making plans to get away for a few days the 3rd week in November, and this will be the FIRST time we have gone away by ouirselves since our HONEYMOON! So I am very excited to say the very least! So again, I'll update more very soon everyone! And THANK YOU all for everything!
Vicki
Thursday, July 2, 2009
Before I forget, I have 2 sites running now (simultaneously). I have this CaringBridge site and I also now have a Blog; the address is www.avaballenger.blogspot.com . I made the decision to start a blog because it allows more contect (i.e. videos, music, etc) and I am finding it a little more use friendly. I will continue to keep updating the CaringBridge site, so no worries for all of you that enjoy checking on Ava's progress. I just wanted to let everyone know, because the blog has some really cute videos of Aohdan singing and such.
Okay, here goes the updates, there's been a lot happening. Ava is REALLY doing well! She has been weaned off of Phenobarb (for seizures) and Digoxin (for rapid heart beat). Both of these meds had a sedative effect and being off of them, along with just overall improving, it's been a lot of fun to see her little 'antics.' First of all, she is 18 months old, so even though she may not be able to perform the 'typical' tasks of an 18 month old, she sure tries! Haha! She throws tantrums, she has hands everywhere when you're trying to do her daily cares, she is sitting up (in a special chair of course), she is making more and more noises and distinctive coos everyday, she will STAND supported against you--she really loved this, and she's really aware of her surroundings. If I come into the house and stop and talk to the nurse and don't go over and talk to her, oh it's all over, she's fussin and throwin a fit until I come pick her up.
I have a bunch of new pics I need to post, hopefully I'll get that done yet this week.
*Aohdan* Aohdan is in such a fun phase right now, aside from the typical 3 year old power struggle, he is SOO smart and comes up with the funniest sayings. He is always making Kenny and I laugh. And he is so thoughtful! If you are laying on the couch or the floor and he thinks you're tired or not feeling well, he will give you his blue (which is his blanky), and he'll make sure you're covered up....and I DO MEAN covered up...the last time I fell asleep on the floor I woke up with a mountain of blankets on top of me about 2 feet thick. He had stripped EVERY BED in the house! He wanted to make sure I was warm:) We still have not figured out potty training, I have just gotten to the point where he'll do it when he's ready and I cannot make him. But he is saying his abc's, knows all his colors (even the weird ones like silver, gray, ...) he knows a lot of songs and loves singing, he knows his shapes and really carries on very intelligent conversations for a 3 year old. He reminds me a little of my niece Jessica, she used to always pronunciate her words really well from a young age also. The biggest areas we're working on with Aohdan is potty training. It is a little frustrating to me, but it's in his own time. So if anyone wants to share with me their potty training tips feel free!
Thank you all!
Okay, here goes the updates, there's been a lot happening. Ava is REALLY doing well! She has been weaned off of Phenobarb (for seizures) and Digoxin (for rapid heart beat). Both of these meds had a sedative effect and being off of them, along with just overall improving, it's been a lot of fun to see her little 'antics.' First of all, she is 18 months old, so even though she may not be able to perform the 'typical' tasks of an 18 month old, she sure tries! Haha! She throws tantrums, she has hands everywhere when you're trying to do her daily cares, she is sitting up (in a special chair of course), she is making more and more noises and distinctive coos everyday, she will STAND supported against you--she really loved this, and she's really aware of her surroundings. If I come into the house and stop and talk to the nurse and don't go over and talk to her, oh it's all over, she's fussin and throwin a fit until I come pick her up.
I have a bunch of new pics I need to post, hopefully I'll get that done yet this week.
*Aohdan* Aohdan is in such a fun phase right now, aside from the typical 3 year old power struggle, he is SOO smart and comes up with the funniest sayings. He is always making Kenny and I laugh. And he is so thoughtful! If you are laying on the couch or the floor and he thinks you're tired or not feeling well, he will give you his blue (which is his blanky), and he'll make sure you're covered up....and I DO MEAN covered up...the last time I fell asleep on the floor I woke up with a mountain of blankets on top of me about 2 feet thick. He had stripped EVERY BED in the house! He wanted to make sure I was warm:) We still have not figured out potty training, I have just gotten to the point where he'll do it when he's ready and I cannot make him. But he is saying his abc's, knows all his colors (even the weird ones like silver, gray, ...) he knows a lot of songs and loves singing, he knows his shapes and really carries on very intelligent conversations for a 3 year old. He reminds me a little of my niece Jessica, she used to always pronunciate her words really well from a young age also. The biggest areas we're working on with Aohdan is potty training. It is a little frustrating to me, but it's in his own time. So if anyone wants to share with me their potty training tips feel free!
Thank you all!
Saturday, April 4, 2009
We have had a good week, though I wouldn;t say uneventful, but good. Last saturday, our cousin Neal Glenn passed away from cancer. What a wonderful man he was! I feel so blessed to have spent so much time with him over the past 3 years. He and my dad were 1st cousins, and it was so cool to sit and listen to them talk about the good 'ole days. Those of you who know my dad know that he is just ornery, harmless, but ornery. It was funny to sit and watch the two of them at lunch. Here was my dad trying to talk the waitress at the local truck stop into a date, and you look over and Neal is blushing from embarrassment, dad is loud, Neal was soft spoken, Dad cussed like a sailor at time, Neal barely swore if ever in his life, dad had to be prompted to pray before a meal, and Neal never missed. Neal and Dad were just Good for the other to be around and he is going to be missed! I still chuckle to myself when I think of Neal telling us a story of when Dad fell asleep while doing an alter call and actually started snoring--haha! Oh such good times the past couple of years. Neal would always ask about Ava, and assure us that he was praying for her. I could go on and on, but all of that aside, I am sure that Neal has heard the Lord say to him, "Well done good and faithful servant, well done." So we had Neal's funeral last wednesday, and then received a call that one of Kenny's friends had lost their twin babies in the 6th month of pregnancy. The twins' funeral was today, and it was tough. I have never been to a funeral for a baby, it is a much different kind of sorrow. My heart went out to the mother, so would everyone please also say a prayer tonight for Josh and Christine Butcher? I cannot imagine the pain of going through labor and delivering identical twin boys only to turn around and bury them. I saw their pictures, and they were beautiful, each weighed a little over a pound at birth and were absolutely perfect.
Tuesday, March 24, 2009
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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