Wednesday, January 2, 2013

Happy New Year!

Happy New Year!

I'm having some issues uploading photos for November and December right now, so I thought I'd give a quick update in text.  We're very excited for 2013, as 2012 was such a great year for Gwenny's progress.  Since Halloween and starting the ketogenic diet we have seen even more progress. 

Gwenny is understanding that people and things have names and seems to understand words.  We've been continuing to work on body parts, her favorites are still 'ears', 'hair' and 'belly.' (Click here to see a video.)

Grammy Linda purchased the Baby Signing Time videos for Gwenny's Christmas present and Gwen has been eating them up!  She is mesmerized by the videos.  She can now sign 'want', 'baby' and her brand new sign is 'more'.  I can tell Gwen really wants to communicate with us and is just trying to figure out how.  I'm hoping the signs with help her with this.

Gwen's crawl has turned into more of a hop.  I'm a little sad about this because I wanted her to continue the cross-pattern crawl in preparation for walking, however, she's still mobile so we'll take it.  A couple months ago she figured out how to go down the stairs on her own and on New Year's Eve (after months of practice) she showed us how she can go up the stairs by herself! (video: Gwenny climbing stairs)

The ketogenic diet is still going really well.  Since being off the keppra and lowering the klonopin, Gwen can fall asleep without the aide of melatonin and she is more aware of what's going on around her.  I can see the wheels turning in her head and wonder if my sweet girl is frustrated that she can't show me yet how smart she is.  She is attentive to other kids playing around her, loves playing with toys, loves to be rough-housed, shows pride with accomplishment and praise and is mimicking much better than she was just a few months ago.

Gwen is pulling herself to a stand on everything! This is the next step to cruising and then walking.  We'll be working with Shriner's Hospital and PCMC therapies to help her walk.

G has developed a little 2 year old opinion, and while it can be frustrating, I'm excited to meet my girl sans drugs.

We are blessed.

Sunday, November 4, 2012

Happy Halloween!

Purple Pumpkin!  I am ready to go!

I took Gwenny to the elementary school to visit Gramsy at work on Halloween morning.

Gwenny most enjoyed taking candy out of her pumpkin and throwing it on the ground!

All worn out after too much fun trunk-or-treating.

I've been falling behind on blogging because I'm measuring food ALL THE TIME.  I'm getting the hang of it now, though, and just repeating the quicker recipes for Gwenny's keto diet.  I think there are a few factors contributing to the fact that it takes me so long to get her food ready. 
 First, and obvious, is that I have to measure EVERYTHING that goes into her mouth.  (OK, not, almost everything.) 
 Then, it has to be something she likes.  (I make something, I like it...she doesn't.  Back to square one.) 
Third, she's two years old but has the chewing skills of a one year old, so I'm trying to be careful with foods that she can easily chew. (Such as cooked carrots, rather than raw.) 

Also, she's starting to get really independent and wants to feed herself all the time.  That means, nothing that has to be eaten with a spoon.

She's doing really well and we have been able to lower her keppra once since being out of the hospital.  (Yay!)  No seizures, ketones are staying high and she is eating and drinking well.  I got her a new sippy cup with no handles, and she's drinking out of it like a pro!  She also LOVES drinking out of a big girl cup, which she holds and drinks out of all by herself (although most of the fluid goes down her front.)  She still loves to hold a fork or spoon and has started a sort of "stab" at her food with the fork.

Gwenny is vocalizing all the time now, mostly random vowels, 'mama' and 'baba,' although I occasionally will hear a "d" or "g."  She has figured out how to work a light switch and just thinks it's the coolest thing ever.  We play with the lights on the way down the stairs to breakfast every morning.

Thursday, October 25, 2012

Starting the Ketogenic Diet

Gwenny with her little purple pumpkin.

Paint one of your pumpkins purple this Halloween to show your support for Epilepsy awareness!

We started the Ketogenic diet this week for seizure control and to lower  (and hopefully discontinue) Gwenny's seizure meds.  The diet is high fat, adequate protein, low carb and makes the body think it is fasting.  Something about the fasting state (or the body burning fat instead of glucose) can control seizures in some people.

Primary Children's policy is to admit a child into the hospital when starting the Keto diet so they can monitor glucose and the body's reaction to the diet change.  We expected to be in PCMC for three days, but Gwenny was doing so well they let us go home after two days, one night.  This was wonderful news, as they were pricking her finger every four hours all day and night!

Our visitors playing with Gwenny.

PCMC is definitely set up for children.  They had a wagon available for Gwenny to ride in whenever we left our room, which she really enjoyed. 

 We took a trip to the play room when we had some free time between meals, doctor visits and blood checks.

Hospital Keto meal:  cream, egg, sausage, cheese.

Hospital Keto meal: chicken, avocado, cauliflower and cream/cheese sauce.
Gwenny's little friend that came on her food tray.

This is a Keto strip.  We put cotton balls in Gwenny's diaper and test her urine four times a day to make sure her ketones are in the moderate to high range.  (Ketones are like a sort of "ash" in the blood and urine when the body is burning fat instead of glucose.)

This is the first Keto meal I measured out by myself.  Meatballs, sweet potato, broccoli, cauliflower, butter, cream cheese, and cream.  Everything is measured exactly on a scale.

Almond crackers:  almond flour, macadamia nut flour, olive oil, egg white and salt. 
(Gwenny loves these!)