Sunday, November 28, 2010

more updates

Two posts in one day!! AHHH!

Emily is doing much better the past few days. She is finally over the uti and her first TWO teeth have broken through. I thought this girl would never have teeth. She now has two bottom teeth that came one right after the other.
She is still having clusters of spasms and a few seizures daily. The past few days her seizures have been down to 3 or fewer.

So now we know that a uti and teething are seizure triggers for Emily. Now we are dealing with biting. Fun.

Visually, Emily is really progressing. She is seeing so much better and is tracking and following more objects. Used to you would have to introduce something to her from the side and hope it would catch her attention but now we can start closer to mid line.


Another big thing is she is interested in the TV! She does not care for therapy so her PT suggested we turn on cartoons, I laughed to myself because she has never been interested in cartoons before, well she proved me wrong! She loved it and we got through PT without any major melt downs!

A friend gave us some DVDs to try and she loves them!
Here are a couple pics of her watching TV.


She really likes baby Einstein.

Emily and her daddy watching videos on the computer.

I want to get her an ipad so badly. I know she would love it!




We are weaning her topamax slowly and when she is off of that she will only be on phenobarb. We are defiantly seeing more of Emily since we began weaning meds. She is pretty happy but she is very opinionated if she does not like something. Especially when she is tired.

She finally broke the 20 pound mark! She has always been on the small side and now that she is on the ketogenic diet she does not gain weight very quickly. She is small but proportionate.

We did get Emily's bath chair. We decided to go with the Rifton Blue wave bath chair with a tub stand to make it taller when we need it. Emily seems to enjoy it and it supports her so much better.

All of the support straps are movable. We don't use the chest and leg straps because she does not move enough to use them yet. She loves kicking her legs in the water.

We also got her stroller. We decided to go with the Special tomato EIO. I don't have a great picture of it yet. There are many reason we chose it. It holds up to 90lbs and it reclines all the way back so she can sleep. We also got the special tomato soft touch liners to support her better and they can also be removed and used in a chair for more support later.
So far I am very pleased with it. I wish it had a bigger basket under the chair to hold her diaper bag. We carry so much stuff when we go anywhere.

So that is pretty much it. Oh and I turned 30.

Looking forward to some more good days.

5 comments:

  1. Oh, Emers, I LOVE YOU!!!! You are just doing so well!!! I am so proud of you!!!

    So- You like Cartoons....YEAHOOO!!!! Now, I know you'll like your Christmas present!!!

    I can not wait to see you, and wrap my arms around you and give you tons and tons of kisses and hugs and lovies!!!

    What a beautfiul, sweet, precious princess YOU ARE!!!

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  2. Oh wow! What a great note...I can hear the gladness in your writings...glad Emily has been doing well!!

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  3. Erica, I'm so glad to see & hear that Emily is doing better. Have you seen the "mommy hook". I got mine at Target. I have it clipped to Savanna's stroller to carry her diaper bag when we are out somewhere. Love you guys & praying for you.

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  4. Yeah, I love good days!! :) My Emily still loves Baby Einstein and she's 7. LOL She is definitely a TV addict. It's great that your Emily is aware of the TV and interested in it, and showing improvements with her vision. I love the picture of her with Daddy. :)

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  5. Sounds like things are going really well! So happy to hear...

    thanks for sharing your latest in equipment...it is always interesting to see what others are using and what's out there.

    Hugs...Deb

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