Friday, July 23, 2010

Say No To Drugs

With the guidance of The Institute, Avi finally decided to kick her "hard core" drug habit. When she came home from the hospital, we had tried to talk to her about it, but our words fell on deaf ears. She would always tell us, "I have cut way back, don't you remember what I was on in June and July?" She had made up her mind. We didn't push the issue any further.

After our first visit to Philadelphia, she understood that her body was her temple and that there needed to be a change.

She was on such heavy drugs that we were advised to titrate her very slowly. We have been working hard since the middle of December. I am happy to report that today, Aviana is to take her very last dose. She went from 42 doses a week, to z-e-r-o.

She has done amazingly well coming off of the drugs. She became much more sensitive to sound. Sometimes one little sound would send her crying for an hour. I honestly thought that it would be much, much worse though. She is now used to the sounds and if something does send her, she can catch herself very quickly.

There are things we have noticed since she has been coming off of the drugs ~

She is MUCH more aware.

She moves her head all over to look around.

Her eyes move much more and she tracks better.

She eats her food by mouth better.

She is better at the inclined floor.

She is more attentive.

When you hold her, she will put her arms around you.

When you hug her, she tries to put her arm around you.

She gives more kisses.

During therapy, she is shooting us the "stink eye" much more.

She looks more like herself.

The other day while I was feeding her, she paused for the cause of inspecting her hand intently. She was putting her hand in her mouth and taking it away, like she was feeding herself, but also like she was really seeing her hand for the first time.

She gets frustrated more, which (for the most part) means better therapy.

Her cry sounds different, stronger, better.

She pulled her mask off 3 times in one day.

She wiggled her toes when asked.

She pays more attention to her reading program.

Every morning, I go into her room and say, "Hi Avi." Yesterday, she looked up at me and opened her mouth for the time it would have taken to say hi. I said "Hi Avi" again and she did it again. I did it again (give me an inch, I take a mile) and she was sick of me. I could see the bubble over her head. It read, "How many times do I have to do things over and over again, GEEZ!"

Overall, she just seems more present and less sedated.

I am sure there is much more that I am forgetting, but that's ok.


  1. Just let Avi know that I don't want to see any photos of her on msn or yahoo with profanities manicured onto her middle finger nail nor read any twitter posts in which she is dissing authority figures out there who are helping her come clean ;-)

    Glad to hear that this is going well. What an uplifting post to read. Your, Dave's and Avi's persistence is remarkable. More later. Hugs, E.

  2. OMG how awesome! It's so great to hear about Avi's progress - she's come SOOOO far...You are such a great Mom Jen!!

  3. That is awesome! How is the spasticity? It's got to feel so much better to not be in a klonopin and baclofen haze! I don't like taking the baclofen, and I take a lot less that Avi was. Give that little angel a hug for us.

    PS - Emma said let's grind some food up with tea and have a tea party! She said Avi would like sweet orange tea with real sugar. She likes oranges the mostest. Oh, and soup. ;)

  4. GO AVI!!!!!!! i am so glad she has reached this milestone of becoming drug free!!!!

    i have too many deep seated feelings about drugs to go into here just suffice to say i avoid them whenever i can. i have come to the understanding that SOMETIMES drugs are a necessity BUT i still believe stay on them for the minimum amount of time necessary to get the maximum benefit, the get off of them!!!

    (ok off my soapbox!)

    YAY AVI!!!!!

  5. For some reason, I've fixated on the phrase "...she is shooting us the 'stink eye' much more." ha ha!

    GO AVI GO!



  6. So, so great to read this... what a trooper... she's doing wonderfully!! :)

  7. This is such a HUGE accomplishment and due to mama and daddy's GREAT efforts. Congrats to all of you!

  8. Awesome news! I love hearing how well she is doing coming off the meds. Most of us feel better when we're not drugged too. Way to go mama! You're doing an AMAZING job!!! Keep it up!

  9. Jen that is so awesome!!!! Aviana has come such a long way and there is still more to come!!!! You are an amazing mom don't ever forget it!!!

  10. This great news! No more meds -- yay!! I loved reading about all her improvements, but especially how she puts her arms around you when you hold her and tries to put her arms around you for a hug. And that she mouthed the word "hi" to you -- twice! That's awesome. And you just gotta love the old stink-eye. Shows the kid has spunk. And a bit of rebellion. I love that!

    Oh, Jen...I know it's SO, SO HARD...but keep doing what you are doing. Can you just imagine a year from today, how much better she will be? I know the progress isn't as fast as you would like it. What we moms want is to snap our fingers and have our babies back the way that they were. I know that. It's so hard to be patient.

    Hugs to you,

  11. That is GREAT progress!!!! Way to go Princess!

  12. So, what's she gonna do to rebel now that it's not drugs? huh? huh? Mom?

    I bet she comes home with a 'tramp stamp' one day...snort...(I'm allowed to call a tattoo on your lower middle back that b/c that's what they are called in our oh-so advanced midwestern society AND because I have one :)

    I bet her first tattoo will be "Be the Institute" OR "Masks are Evil" or "Inclined Floors a from the Devil" or "My Family Rox" ....

    I could go on and on :) (as usual)