Tuesday, October 6, 2009

Wow...Two Months Passed...

Can you believe that it has been 2 months since my last post!! I have no excuse for this other than Mommy and I have been just taking it easy and having fun at home. Here is an update of what has been happening:

Health :

  • I has pneumonia in September but it wasn't too bad. I did not have to sleep over at the hospital. This month it will be 13 months since I last had a hospital stay!!
  • I am still having my random crying episodes. We still don't know why this is happening but the Doctor thinks it is behavior based. Mommy does not and neither does some of my therapists who have seen me when I am having an episode. Unfortunately the Doctor has not seen them so she can't figure it out.
Gross Motor:
  • I am using my walker more and more. I really enjoy it and I will go get it all by myself and walk around the house!!
  • I am trying to learn to crawl up and down stairs. For some reason this REALLY scares me. I cry every time Mommy or my PT makes me do this. At the suggestion of our Deafblind Specialist we have now put yellow tape on the edge of each stair to help me with depth perception. It has helped a bit.
Communication:
  • Although I have always been able to informally communicate what I want, my "formal" communication skills have been challenged. Right now we try the total communication approach and just recently I am starting to use some sign independently.(Not just repetative) So far I use Daddy, Mommy, Light, All done, and my new sign is MUSIC. I know...it's quite funny that one of my first signs is music when I am profoundly deaf in my left ear and Moderate to severely deaf in my right ear?
  • We are looking in to the possibility of getting a BAHA for my right ear. My bone conduction tests only show a little improvement over the normal test but because of my ear shape I have constant feedback. We are hoping that a BAHA will help us avoid this.
  • I will poit to my hearing aid if the battery is dead. This is huge to Mommy after months and months of fighting just for me to keep it in.
  • I have also be saying "mum mum mum"!!!!! We are not sure if this is for mommy but I only say it when I crawl to her so we think so!!

Phew..that's quite a bit of catching up!! This weekend is Thanksgiving and we are going to Ottawa(which is 6hours away) to see my Daddy's family. I am really excited.

I also have been very curious about what Mommy is doing in the kitchen. She has to be high alert because I don't quite understand what HOT is yet. Don't worry..Daddy was right behind me in this photo.



Shiny pots and bright oven lights get me into some trouble!

Lastly, a short little video of me watching the "Shadow"part of Bear in the Big Blue House. I just think it is hilarious!!! Have a good weekend everyone!


video

6 comments:

Leslie, Arlin and Katie Kauffman said...

Sorry to hear that Evie is still having the crying episodes. You said she sometimes get a rash on her face during these episodes, like Katie does, right? Could you take a picture and show it to some of Evie's doctors? When we showed a picture of Katie's rash to her neurologist, he said it was indicative of facial nerve pain. Just not sure what to do about it, though, because medication hasn't seemed to help.

Hooray for Miss Evie and her signing and saying "mum mum"! How exciting!!

Evie, Katie used to love "Bear in the Big Blue House," especially the part with Shadow! :-)

Kristi said...

So sorry to hear that the crying episodes are still happening. Along the same lines as Leslie's idea, could you video several minutes and take it in to the doctor to show what is happening? We've done this for several different things over the years and it has helped her team understand (and actually believe) what we are telling them.

LOVE to hear that Evie is telling you that her battery is dead on her hearing aid... that's huge!
As is using her walker so much, going to get it herself, all that curious (albeit dangerous!) curiosity! You go, Evie... keep up all that great work, exploration and development!

(Gracie loves music, too, and is profoundly deaf. BUT, despite the inability to hear it, she can feel it and loves making it!)

Ruby said...

OK Princess, can't think where the dancing blood came from "Mommy" or
"Daddy" love to see you exercising the body like that.
Love you berry, berry,berry much,
Aage.

Catherine said...

Reuben does beautifully with his BAHA with which he hears within normal range (unaided R: sev-prof (previously prof so getting better), L: mod-sev) so I'm sending you high hopes for Evie.

Crystal M. said...

I love her laugh, it so reminds me of Eva. So cute!!
Sorry she has crying episodes, has anything changed for her? I know since Eva's last surgery she has not been herself and is more clingy and she crys more now too.
Good luck with everything and keep up the great work with the walker Miss Evie.
Hugs,
Crystal and Eva

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