Saturday, January 15, 2011

Whats new?

When I started this blog I did it so that I could document Emily's life.
I am not great about keeping up her baby book, plus there is just not a baby book out there that would work for us.
I have decided that I will print my blog out (eventually) so I can keep all of these memories. So some blog posts you might be boring to you. :)

I just wanted to update what Emily is doing lately.

Emily is 19 months old now! I can't believe she will be 2 this June.
She is 21lbs and 29 1/2 inches.
She has 4 teeth. 2 top, 2 bottom

She loves her puppy Violet.

Talking to Violet

She will talk to it and laugh at it! It is programed to say her name and favorite things. She loves the bedtime music the most.

Emily loves anything with music! We keep musical toys all around the house to distract her when she gets crabby.
She likes watching tv now too. Most recently it is the Little Mermaid and she just watched Aladdin the other day and liked it too.

She is tolerating therapy much better.
We have seen quite a bit of improvement the past month. Most recently she is setting for about 30 seconds unassisted.
This is the best she has done! The boppy is behind her to catch her is she fell but she put her hands down herself and lifted her head up!
We are so proud!

We started Speech therapy 3 weeks ago. The therapist is amazing! I have learned so much from her already and Emily has already shown improvement with eating since she started.
Speaking of eating....Emily is eating, yes I said eating, 2-3 of 5 meals per day by mouth!! This is HUGE!!!
Prior to the diagnosis of IS Emily was breastfed and ate homemade baby food great. We did not have any problems at all.

Big bite!

After we weaned the ACTH and started seizures drugs on her she slowly stopped eating. That is when the g-tube was placed.
The ST taught us how to get the spoon in her mouth without Emily gagging or pushing it out with her tongue. Emily has discovered that she LOVES to eat again! I am so thankful we have found something new that she likes.
We have even seen some hungry signs lately too. You could never tell she was hungry but once she started eating we are seeing signs again!

Emily's seizures are pretty stable. By stable I mean she is having them daily but they are not clustering out of control often. I think once the past 2 weeks or so she had a seizure cluster that required extra meds to stop. They only time she is having seizures is falling asleep or waking up and if we can get to all the way asleep or fully awake she stops.
 The big issue we are having now is her spasms. She has hundreds of spasms daily. Spasms are seizures too. Most of the time they are bad but at least once per day she has a really hard cluster and the really hard ones lead to other seizures so we have to get rescue meds in her fast to stop the seizures from starting after the spasms have stopped.
It could be a lot worse but it could be A LOT better. We also realize this can all change in a moments notice.

She has been very alert since we weaned her topamax. She watches us when we talk to her and looks for us if we call her name.

We are preparing as much as we can for her upcoming hip surgery. I will update that later.

I am so thankful for good days. I cherish good days.


  1. Yay Emily!! The picture of her sitting is wonderful. Now if those pesky spasms would go away!!

  2. Look at her sitting! That is awesome. The eating is amazing too. :) I wish she was having less spasms, as they are no fun. My Emily doesn't have IS but she does have LGS, and the myoclonic spasms are the same. All day, annoyingly leading to bigger seizures. Boo. :(

    And my Emily has those same striped pajamas in the top photo! :)

  3. Great update...I'm so glad you are keeping the blog up so I can hear all about her!

  4. great update. Look at that big girl sitting up! Amazing!