Sunday, February 5, 2012

Questions and Comments

Hi All ~


I have stored up quite a few questions and comments and wanted to share some answers....



The stander looks much less like a torture device these days. Is she just tolerating it, or does she kinda like her new perspective on her world?



Aviana sometimes acts up when she is being put in and taken out of the stander. She is good for all the time in between. I do think she likes her perspective, as she lifts her head quite well in the beginning. As with all things though, she gets bored, and her head falls once again.


We are currently unsure of exactly what to do about the stander. The Institute made us sign something saying that if they gave us the instructions to build (we wanted them, and they weren't ready to give them), we promised we would not start until her liver number was in the normal range. Physical activity, and being vertical causes the liver to work harder, so those are two things they did not want us doing.


We weighed everything out, and just knew if we waited until her liver number was down, she would be about 18 years old. We then decided to break the rules set forth and slowly, yet carefully stand her. Now we wonder, as with everything. Was that the reason her liver number went back up? To me, the constant uncertainty is one of the most frustrating parts of the brain injury world. I like answers. I like to know. I like things that are concrete. Brain injury is none of these things. X never = Y and Point A never surely leads to Point B. Ugh!


Can we do it again next year?


This question was in reference to Aviana's Elves and the subsequent trivia game. Yes, we will be doing Aviana's Elves every year. As you probably gathered, this was one of the single greatest adventures of our lives. As far as the game, I can never turn down the request for another game : )


Just wondering - what would Krispy Kreme had done with all those leftovers if you hadn't taken them?? Do they throw them out? Do they donate them to a shelter?


There are only two days of the year where Krispy Kreme has that many donuts to dispose of. I believe the two are Christmas and New Year's Eve. It was my understanding that if no one claimed them, they'd all go in the trash : ( We'll be sure to pick them up every year : ) The same goes for Noah's Bagel...we got the end of the day bagels that were about to go in the trash...so sad.


What would make a good gift for a brain injured child?


This can be a tough one, even for the parents of the brain juried child.  Creativity is the name of the game. To me, it's all trial and error as well, and also depends greatly on the child and their stage in development.


Stuffed Animals


We have more stuffed animals than you can believe, they are truly taking over : ) I can understand why people give them to us, and I probably would too if I were on the opposite side, but they multiply like rabbits, so it's hard.


Sensory Items Rock


For Aviana, anything's great that makes sounds, or that she can feel with her hands. I love when I find something new, that makes a crazy sound. I am always excited to run home and see what her response will be. The only problem ~ most of these items get old, fast. Aviana is always on to the next.


My friend Shauna had many awesome ideas, but the one I loved most, was a blast from the past...a lava lamp. I thought it was a great idea, and will get her one once she tires of her turtle.


Books


Aviana really likes pop up books. I have bought her tons at Costco. These ones are exceptionally good, because they pop up big. I also love a good childrens' book. We read her one before bed, and it's always nice to have another ; ) Touch and feel books are also a good choice.




Clothes


Aviana goes through many outfits a day, so we have clothes in abundance, but that's always a safe gift.




Lights


I was at my friend Jen's house about a year ago, and each of her sons had a Cloud B Twilight Turtle/Ladybug. This turtle is the single best purchase we have made for Aviana. The turtle lights up real constellations all over her room. She's in love with him! I highly recommend this for every single kid. She loves it! She loves when we ask her what color (there are three) she wants for the night. If she thinks we might forget to turn it on, she looks in the direction of the turtle.








After all I have listed, in truth, all of these things add up. When asked, I have requested donations in Aviana's name, countless times. Honestly, Aviana doesn't need much, so we feel others have a greater need. We have had donations made in her name to The Institute, for the purchase of 5 ducks to harvest eggs for a family in a foreign, impoverished country, the SPCA, St. Jude, etc. In my opinion, this is one of the best gifts.


I hope this list helps. I know it can be very difficult to shop for kiddos like Aviana. We, as her parents, have a hard time, so I can only imagine what it's like for others.


Can I ask you a question?

We get this a lot. Our answer is always yes, yes, yes! Anyone can ask us anything and we will answer. We are never offended and you never really have to worry about your question coming out wrong. This is a difficult situation, and we know people wonder about things. So in answer to this, I say ~ yes, yes, yes. Ask away.


Is Aviana on seizure medication?

When Aviana was sent home from the hospital they told us she would be on medication for the rest of her life. She was on Baclofen for tone and Clonazepam for seizures. We weened her off Baclofen by the end of 2009 and off Clonazepam by the beginning of 2010. She has been med free ever since. 


She does however take a boatload of supplements, which include: Magnesium, Probiotic, Plant Enzyme, Milk Thistle, Omega 3 EFA, P5P B6, Multi-Vitamin, Buffered Vitamin C, L-Glute. If we suspect she might be getting sick, she takes even more! They wanted to keep adding ~ this for this and that for that. I said, Whoa now, sheesh...enough already! Keeping track, and adding certain amounts of certain ones for certain meals, all day long is c-r-a-z-y!


Like I always say, long gone are the days of PB & J. Oh how I miss you!


What's the most frustrating part of your day?

It's weird. I can handle the big stuff, and where I take a hit, is in some of the little things. Hands down, unequivally, without a doubt, seriously ~ the worst part of my day is feeding Aviana. 


Do you remember when grandparents were notorious for having plastic vinyl covering over their couches? I finally realize, there's something to be said about that. I want that stuff! Wrap it up! Twice. I want to be able to take a hose and spray my couches down. Feeding is outrageous and can make the most sane person, not. 


Our poor Miki blows food all over the place. It's on her, the couches, the coffee table, the area rug, the floors, the pillow, Rainey, me, everywhere. Her spray radius is extensive! There she blows!! Our cat like reflexes have improved greatly, and when we suspect, we pull her bib up in front of her face to catch it. When we let the bib down, it is everywhere, and has blown all back in her face and hair. If we aren't fast enough, which also happens often, she turns her head from looking straight and coughs it all directly in my face, hair and shirt and all behind the couch too. 


We have learned a great deal of patience over these years, but feeding her pushes everyone's buttons. While we all know it's not her fault, it's frustrating nonetheless. I feed her the most, so I get the brunt of it. If I could opt out from ever feeding her again, I would. Sorry, I would. I daydream about hiring someone to just simply come in and feed. 






Each of us need one of these for feeding time!



I had my share of tube feeding mishaps, but I seriously fantasize about quickly, and easily pushing that food through the tube and calling it a day. When I'm in the thick of it, I wonder why I was in such a hurry to get the tube out, and why I seem to always choose the toughest route?!


The second runner up in the "most frustrating contest" is when she pees through her diaper. She has been doing well potty training, but Dave and I sometimes forget. If we forget, we pay with pee on the couch. We go through so many outfits, and if you ever come over ~ beware. 


Thankfully, we just got rid of the worst of our couches. They have ever single Avi fluid all over them, and multiple times. I keep my house really clean, and truly, I have a thing about our couches, so every time this happens, it is a big slap upside the head. 


We ordered new couches and they will be here in a couple weeks.  I was reluctant, but my mom wasn't going to stop until they were ordered. Of course I wanted new ones, but what I didn't want was one more thing to stress on. I know new couches will do that to me ; ) Sadly, Aviana will not be able to eat or lay on them. She will have to use the others she has been christening these past few weeks. 


Like I said, it's the smaller things that are more difficult for me. It kills me that she was potty trained at such a young age, and how proud of herself she was. At the age of 2, she did it all herself, all the way down to the washing of her hands. Going back to diapers, and the mess of it all, well...sucks.


Will you ever adopt again and do you want more children?

No, and no. Aviana is enough for a lifetime. We just want dogs : )


Can you do a post where you take a picture and list everything in your purse?



I've come a long way. I never carried a purse until I was about 28. I would carry keys, sunglasses and a wallet. Usually I'd ask someone else to hold these. I was shocked by how much stuff I had in my purse. I thought there was much less.

1 Wallet (2 Kaiser, DL, Costco, Movie, ATM, AMEX, Miles Visa, Very Little Cash)
4 Lipsticks
3 Chapsticks
5 Pens
2 Keys, of which I have no idea what doors they open (I'm guessing my dad's house)
2 Gary Allan Fan Club cards from 2010 & 2011...because you just never know!
5 Five dollar Macaroni Grill bucks
1 Pair Sunglasses and case (a must have at all times)
1 Jack Skellington pill case that pops open since day 1
1 Motrin bottle to carry all the pills the above container won't
2 Kind bars
2 Crush 29 gift cards
1 McCormick and Schmick's Gift card
4 Black bobby pins
1 Ulta Coupon for $3.50 off my next purchase
1 P.F. Changs Chinese New Year discount for our next visit
1 Hair tie
2 Wet Nose dog treats, of which I have since given to Rainey
1 Dog whistle?
1 Camera
1 Gilly Hicks label
7 hair clips, as I always put my hair back and soon take it out and put it in my purse

Thanks for sharing what was in yours, I got a kick out of it all ; ) I guess I'm kinda nosey!


Are you going back to The Institute this next time?


February 13th would be our 5th trip back to Pennsylvania in a little over 2 years. We have decided not to go back this time. Sadly, Aviana is not really advancing, therefore there is nothing new to learn. The past two times we went, we felt the lecture series, as well as everyone there, were passing us by and leaving us far off in the dust. Things began not pertaining to us pretty quickly. We have found ourselves stuck at a certain point and unable to progress past due to the extent of the damage to her brain. Aviana is amongst the bottom 5% of the most hurt kids they work with ; (  


I know their program works, I have seen it time and again with my own two eyes. If it were working for Aviana, we would be back every six months for the rest of her life. 


We still do a lot of the program, but some things are no longer feeling right for us. Aviana and I are bored sick. Every day on the program is Groundhog Day.  We are both numb to it, and just going through the motions. That being said, we will always continue to incorporate the parts that feel right, but not to the relentless extent we were before. The results were never even close to the amount of work. Boredom wouldn't matter one bit if the program were working for us. If it were working, Groundhog Day would be a welcomed occurrence ; )


I believe Aviana needs variety, and may respond to something else. We are going to look into, and most likely pursue the Anat Banal Method.


http://www.anatbanielmethod.com/


Are Aviana's hips out of socket, and what do you do for them?


Aviana has a hip x-ray about every 6-12 months. Thankfully, her hips are in. We do a hip protocol with her. The protocol involves different exercises and deep tissue massages. This is the perfect example of why there will always be a part of the program within our day.



Are you going to put Aviana in school?


Yes, we have decided to. I have been in contact with the school and have filled out all the paperwork. We are going to start with two days, and see how it goes.




Did you see the recent show about the FC Board controversy?


After learning the FC Board at The Institute, my friend Sophie, whom also attends, told us about the older controversy. For this reason, we have always been overly skeptical. We do know that Avi lifts her knee and stretches extra hard to reach the A and other letters. We have also done it plenty of times to where Dave cannot see the letters while Aviana is typing, and I proceed in reading them out loud. One example of that was when she typed Kama. 


Most of the times I try, she doesn't respond. Aviana only "talks" about once every 4-6 weeks. I surely would want her to talk more than that, right? I have other examples in favor as well, but can see how parents can easily and unknowingly fall into what the show was speaking of, especially if they have not looked into all of the controversy. 


What can it hurt though? Well except if she decides to throw Mama in jail, like on the show!  We are very careful. I think it's worth giving her the benefit of the doubt though. 


There are more questions, but another time.  I am so tired. I suppose I waited to long in answering them. Thank you for your patience :o)

Night all!

12 comments:

  1. Let's chat on the phone soon. We are doing Anat Baniel Method soon and maybe we can go at the same time. Shana

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  2. Thanks for answering my question and so many others. We also lone the light up turtle, although we have the ladybug.

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  3. Love the turtle!

    When you start Avi in school, I think you should make sure she's there at lunch time.

    I'm shocked KK and Noah's don't donate to food pantrys.

    XOXO
    Dixie

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  4. Thanks for doing "What's In Your Purse" :)

    I love you.

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  5. I whole heatedly agree that our kids need variety. They grow bored so quickly and many see that as regression. But as soon as we change it up, another part of the brain fires up and we're back in business. I understand your decision not to travel. I've made the decision not to travel for anymore therapies for a few years at least. The main reason? Too emotional. Too high expectations and results not meeting expectations and then having to grieve over that. I need a break. And I don't want to leave Lola or my life for that matter. We're busy living! And this nonstop therapy bullshit watching it work for other children while Christian stagnates is not living! Honestly, Christian has excelled in the last year with no traveling for therapies far more than in the first year with all that traveling we did.

    We did Two ABM intensives with two separate therapists and I attended a workshop with Anat. I think it's worth checking into for sure. I don't have a fair assessment because when we did it, Christian's seizures were in overdrive as he was on evil Keppra. I'd give it another shot but it requires traveling so t will have to wait. However, Anat is in your area, right! And she is pretty amazing. She has a gift.

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  6. Heartedly! Not heatedly, dumb autocorrect. And thanks for the shutout, sister!

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  7. Shout out! Not shut out! Ahhhhh! Lol

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  8. Hi Jen,
    Thanks for doing a Q&A, its easier to put all the questions and answers on your blog then individually answer each emails. We love to know more about your princess. She has good sitting control. I wish my daughter could be potty trained like your lil one. Don't we envy what others have?

    On another note, regarding your baking pie adventures. You show us your delicious pies but no recipe(s) or step by step of making them. Please make a pie for us and show us how you make them step by step. Check out www.foodjimoto.com and when you are done making your pie, may be you can put it on www.tastespotting.com (I check out this website for ideas on what to make or wish I could make, haha).

    I am so happy for your smiles. I hope one day I will get there.

    Love Always,
    Nicole from Rosemead, CA

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  9. I am so glad you are going to try school for Avi. This will bring new experiences, new faces, and much more stimuli. It will also give you a break which is a very good thing. I am a retired teacher after 34 years; let us know how it goes. Have followed your blog since the accident and pray for you often. Blessings, V

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