This one's for you Lisapooh ;o) I am sorry this has taken so long. I was trying to gather more video, new pictures, and more detailed information.
So here it is, this is what one day of Aviana's therapy looks like.....
We mask her from the second she wakes, until she goes to bed. It is every 4 minutes throughout the entire day. Yes, it is complete insanity ;o)
We complete an extensive reading program with her. We have 5 sets rotating daily, with one new set introduced each day, and one set taken away.
Sentences are 2 sets of 6 daily.
These are Aviana's books. We are to introduce one new just about every single day. This is a bad example of a book, they are usually much more educational than this :o)
See what I mean?? The next page says how stunning I think Aviana would look in one.
Every book has at least 2 pictures in them. These are extremely time consuming. My brother recently started helping me with these, and I appreciate it so much! Thank you Jimmy ;o)
These are called Bits of Intelligence, and each set has 10 cards within. We rotate 5 sets through, each 3 times daily. We take out one old set, and put in one new set each day. Once we ran out of the ones we could buy, we had to make them ourselves ;o( Thank you to my Aunt Rella and Uncle Roger for helping us to make these!!
This is Aviana's math program. She learns the quantities of the numeral symbol in dots. She is soon to be learning addition, subtraction, multiplication, division, and equations. I know it all sounds crazy, but I wouldn't waste my time if I didn't have some sort of proof she was learning.
Dave thought these cards looked oddly familiar when we were learning this program. It turns out his mom used this exact program with him when he was a kid. It's no wonder why he rocks in the math department!! Me...not so much...I never was fortunate enough to have dot cards ;o( Just kidding, even with the dot cards, I would have been hopeless!!
Talk about a full circle moment!
We ask Aviana multiple questions a day. We hold her wrist over the board, and she guides the answer for us. If she is having trouble with patterning, etc. we will ask her questions on this board. It is nice to have her input, and really helps her if she is having a rough time.
She was doing unbelievably well with the board, but in the last month, she hasn't wanted to talk to us much.
It reminds me of a kinder version of a Ouija Board. "Do you want a cookie? Is Rainey irritating you today? Do you want us to read you a book? Do you want to go on a walk today? Are you mad at me? Do you despise therapy today? Do you know how much it is helping you?"
It is always shocking to get an unexpected answer. You think you know what she is thinking, and she is always there to let you know that you don't know everything :o)
As you have seen, Aviana spends a decent amount of time on the floor. This enables her to move freely, and practice crawling.
Today I made this video for Dave. I made it because Rainey was looking for Aviana. She looked like she was saying, "I know I left her here, but where did she go?" I was about to send it to him at work, and I realized I should put it on here. Sorry about my lame voice again, I don't normally talk like that. I sound like I speak in "kiddie voice" all the time!
We complete a series that we refer to as patterning. We do 4 different things within each session.
I'm sorry I sound like such a dumb*** on this video :o)
I don't think I will ever get used to my voice on video!!!
Unlock ~ We don't have a video...sorry!
These videos sound so instructional because they were for a friend ;o)
Thank you Sue for helping with her head in these :o)
This was a video we made for a friend. We have converted our 3rd garage into a therapy room. This is where we house her gigantic inclined floor. She has not been doing this lately because her liver number has been high, and we are in the process of trying to figure out why. This is part of her physical program, and when the liver is high, the physical must be lessened. Usually she works her way down this. The floor is 13 feet long, and she usually averages coming down in about one minute.
There are actually many more positions that we do, but these give you a good idea.
This is our newest program. I don't know, call me weird, but it really hit home how crazy this program is when we moved a giant tank into our therapy room!! This program provides a mixture of 80/20 carbon dioxide/oxygen through a mask to Aviana. It will help with her respiration.
This tank came from L.A. and there is a whole back story that I am going to write about in a series I have graciously been asked to write for called Kindness Counts.
Because Aviana is immobile, we also have to complete six different kinds of massage. We rotate three different ones a day, and do them each five times. Most are in support of her hips. When a person is immobile, their hips unfortunately move in, and out of socket :o( The daily massages are....
Trapezium
Spinal
Medius Frog
Gluteus Medius
Gluteus Maximus
Shin
Here is an example of one of the massages. Please excuse the crying. Our poor, sweet girl doesn't really like this one:o(
This is a video of my mom feeding Aviana a cookie. I wanted to take the video to show you how she chews, but she was minding her manners for you. She's knows the filth we have shown in the past, and she wants you to know she's not really like that. You know, an underage driving, beer drinking, bird flipping girl.
Holy h*ll, maybe I do talk like that??!!! I'll work on it...how annoying. I have a theory though, I think it stems from always having one sided conversations. No one is speaking back to me. Only me, talking all.day.long, with no one talking back?? Maybe?
And then, there is always all of the cooking in our *down time*
Just when you think therapy is over, there it is again, in the form of overnight respiratory patterning. So, if my calculations are correct, her therapy lasts 24 hours a day.
Lucky her.
Lucky us.
Doesn't this all sound appealing?? I bet you wish you had a brain injured child that required 24 hours of therapy ;o)))))))
She's worth every minute though ;o)
As you can plainly see ~ it takes more than a village to run this program. We truly appreciate every single person that has ever helped us along this journey. I have a really difficult time asking for help, and have had to step way outside of my comfort zone. Thank you to everyone. I am in awe of your constant generosity, and help!!!
Roll the Credits, Please
*******
Outrageously Awesome Nurse for all around care, and compassion ~ Lesya
Monday Patterner ~ Summer
Tuesday Patterners ~ Mom & Gary
Wednesday Patterner ~ Jenny From the Block
Thursday Patterner ~ Roger & Rella
Friday Patterner ~ Michelle, and other fill in patterners
Saturday Patterner ~ Used to be Janet, or Jeff before we cancelled Saturdays :o)
Sunday Patterner ~ Cousin Sue
Fill In Patterners ~
All neighbors
Allison
Allison's friend ~ Pixie Jen
Joe
My Daddy
Anyone walking down the street, that includes the UPS person ;o)
Books ~ Jimmy
Builder of the giant Inclined Floor ~ Gary
Tank ~ The Russo's and Mike Toledo
Medullary Board, Third Garage Conversion ~ Joe
Person to help me stay sane (think shrink) ~ Maggy
I was worried Rainey would get a hold of Dora, and rip her head off. I have been meticulous in protecting Aviana's belongings lately. The other night, I accidentally left Dora out. Unprotected. Overnight.
Rainey has a habit of burying her bones all over the house, in corners, under pillows, behind plants, under couch cushions, beneath blankets, you name it!
The morning after I unknowingly left Dora out, I heard Rainey digging around in the living room chair. I figured she had found one of her bones, and was busy burying it. As I got closer, I quickly realized who was in the chair with her. It was Dora. I thought, "Oh no, Avi is going to kill me when she discovers Dora lost an arm, or her head."
I knew exactly how I left her the night before, and it wasn't under a blanket. Rainey had been working hard at covering Dora with the blanket. She must have thought she was cold.
Here I was, so worried about her, and all she wanted to do was take care of her.
I can't get enough of this doggy. She is my sunshine!
Avi says, "Thanks Rainey, you're not so bad after all!"
I have so many favorite quotes. I collect them all over the place, and really need to find one central place for them all. Here are some off the top of my head....
"Whether you think you can, or can't
you're right"
~ Henry Ford
"I know God will not give me anything I can't handle. I just wish that He didn't trust me so much."
~ Mother Teresa
"When one door of happiness closes, another opens, but often we look so long at the closed door that we do not see the one that has been opened for us."
~ Helen Keller
"Some people think it's holding on that makes one strong; sometimes it's letting go."
~ Sylvia Robinson
"Friendship is a single soul dwelling in two bodies."
Aviana has been really rebellious lately. I think she is having control issues. She feels we are running every single minute of her day. Suddenly she doesn't like it, and I can't say I blame her!
I don't want to be a pillow sandwich with what looks like a side ponytail!!
I don't want to get into my anti-gravity suit!!
I don't want my magnesium water!!!!
This is how she chooses to unwind at the end of a rough week.
She even demanded we pull a 'Britney Spears' with her. She said it would make everything better if she could drive. Just once.
Can you see the little grin on her face? I can.
***Please note: we don't really let our 4 year old drink and drive***
Aviana has shown a great interest in feeding herself lately. This morning, I put the spoon in her hand, and she worked her tail off to feed herself oatmeal. True to Aviana, if I tried to help her, she would get upset.
She did so amazingly well. I cleaned her up, and put the spoon back in her hand so she could practice throughout the day. She again worked like never before.
I took some pictures along with some video, and wanted to share them with you ;o)
Deep Thoughts by Aviana ~
'Hey Mom, you think you might wanna put something on the spoon? Just sayin'
She works hard for the yummy
So hard for it honey
She works hard for the yummy
So you better give her a treat
A very old post. One I never posted, because I lacked the time to proof read it. Somehow it got lost in the shuffle. I found it interesting how it is the same sort of thing I just posted, but slightly different.
As I drive around, I often feel I am moving about with only half my brain. Many times, I am off in my own little world. So many thoughts, chasing each other around my head. These random thoughts circle around, and vary from all of the many things I need to get done, to just plain, old sadness.
I have always been a considerate driver, never one to honk unless it is absolutely necessary, and even then, it is a friendly honk. I have always thought we are too fast paced. As I watch other drivers, I am often amazed how some lack a single sliver of common courtesy. It is more than obvious that some do not stop, and think of what others may be going through.
In light of what has happened, I am now that hurt person. I have been through the worst of the worst. As I drive, I stare at others, and wonder where they are in their lives. I wonder what has happened to them....
Have they recently lost a parent?
Have they lost a child?
Are they caring for someone with cancer?
Have they recently found out their spouse has been cheating on them?
Was one of their family members murdered?
Or missing?
Are they in the depths of a deep depression?
Did their marriage of 13 years just come to a sad end?
Did they just find out about a rape that occurred under their very nose?
Do they have a family member stuck in the throws of some sort of addiction?
Was one of their children's classmates just diagnosed with a brain tumor?
Is their favorite animal on earth suddenly battling leukemia?
It is truly amazing what each, and every person may be up against on any certain day. In light of all of the things that can go wrong in a lifetime, it is actually understandable as to why one may stall, pause, or react slower than normal.
