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Monday, April 14, 2008

Disability Blog Carnival #35: The Hardest Part

The carnival is up over at Reimer Reason. It's excellent! Check it out!

Audaciously Dissing the GNS and Java Boycott Day:...whatever

Quick update on all things Ryn Tales: (in order of importance)

Ellie is kicking butt on ALL dimensions and it has been such a fun couple of weeks with her. Mind you she is always a blast but the last two weeks have been really excellent because of the reasons below:

1. Her oral aversion is GREATLY improved. This is an aversion she has had since the NICU which she overcame enough to eat when she was 3 but then when the seizures kicked in at age four she reverted back to being very aversive. Incidentally she developed seizures after 4 traumatic months of being integrated into the public school down the road. I can't help but think that is all linked. The upshot of this regression was that she would no longer even try to speak or mimic us or let us mimic the sounds she made and even more devastating, she refused to eat by mouth full stop. So that is where we are coming back from since May of 2006. So here we are on the verge of May 2008 and her carers are commenting that she is going to eat. I always have to add, "AGAIN, she used to eat you know!" Because if I don't keep telling myself and everyone else it feels like that will be lost forever - the fact that she ate - and along with it my hope and belief that she will eat again.

So what has she been doing that leads me to believe she is overcoming all of this:

a) on Saturday night when we were showing Dada how Ellie can brush her teeth - she not only let me in her mouth and not by me insisting but by her choosing for me to brush her back teeth (which is incredible for a kid with dysphasia and oral aversiveness and hypotonia that makes holding her head straight for any period of time difficult). I did so and she grimaced but did not gag (it is also amazing that her gag reflex has moved that far back because it used to be at the tip of her tongue) and then....she asked me to brush her teeth 3 more times. Not just a portion of them, but all of them. Being a somewhat disciplined maybe slightly obsessive toothbrusher myself - I totally get that! Sooo go Ellie!!!
b) She will play with food now, sometimes, especially if other kids are.
c) She will watch others eat. She used to get upset or not look or try to go away from eating folks when she decided food was suddenly not her thing way back in May of 06'
d) Saturday when Dave put a little bit of Ranchero (a yummy but disgusting nutritionally speaking puff like a cheese puff only with BBQ flavor (obviously an Irish creation) on her lips she pursed her lips and tasted it and liked it - very cute - very Irish. It would not be outside her gene pool to decide she will only eat crisps until she is 20 or 30...well better leave that alone for now.
e) She will practice sounds with us -right now we are working on M.
It may take a couple of years to get her speaking but in terms of the big picture - who the heck cares?! In two years she will only be 7 and if she were speaking by then I would be so incredibly delighted. When you're 5 you have some time to work on things.

2) Gross Motor and Physical Energy:
Ellie's physical energy seems greatly increased. She is less tired and wants to move all the time now. She wants to roll and will also pick to do her Pony. She hardly every picked it before. The other amazing thing about her in the Pony is that on her own with no coaxing she will take regular steps. She used to push off with both feet or just use the right leg and foot with her left dragging along. But now she is using both in a regular walking motion consistently. Hurray for Ellie!

And rolling - sheesh! the kid is fast and wants to roll up and down our ABC rug 10 to 20 times which is allot for Ellie. Maybe more. It's great to see her so energetic and not have everyone always commenting how tired she looks.

3) SLEEP UPDATE: This one is definitely throwing caution to the winds so in light of that I will bold all the really important parts so they really stand out:

Ellie is typically sleeping through 2 to 3 nights in a row and then will be up the third or fourth night. I have actually been tracking this closely to try to understand why and have realized that if she doesn't get enough calories and the difference can be as little as 20 she will wake. If she is cold she will wake so we have been keeping the house warmer at night in case she kicks her covers off. If she gets her meds too late she will wake. If she eats too late she will reflux in the night and wake. So at least I can try to mitigate a visit from the GNS by watching all these things. Ellie's system is very sensitive so tracking all this is helpful because though she is strong minded she is also a delicate flower.

4) Java Boycott:
The day after my last update I had no coffee and only two cups of caffeinated tea. The next day I had only one cup of caffeinated tea. And today I had none as I have built up my stock of decaf tea BUT I did go have breakfast at Victor's and my plan to head off my thoughtful waitress before she wasted a cup was thwarted in the doorway of the diner by a very pushy woman looking for directions. I gave her directions but only after she had vented all her being lost frustration on me first and when I walked back into the diner there in my favorite spot to sit and practice signing was a small OJ and a steaming cup of Jo. I couldn't tell her, gee don't want that, but thanks! That really is the nicest thing someone has done for me today! So I drank a quarter of it. So barring any pushy lost people hopefully I will be able to tell her next time before she pours. sigh. When people are really nice like that you acknowledge their small kindnesses.

Overall, the no coffee thing is actually getting much easier. I feel less tired, have to pee less, and my body feels less tense. I have been aiming to exercise 5 days per week to increase my energy that way instead of with coffee and it seems to be working.

There's probably more and I have some really cute pictures and videos of Ellie to share but that will have to be next post.