Monday, January 28, 2008

We're set to star the Keto Diet!

Well, we have our start date for the Keto Diet: February 12.

Lily will be admitted to Children's for four days. During those four days, she'll start out with a short fast, then will begin eating Keto Meals at 1/3 her calculated calories, then 2/3 her calories, and the last two days will be at "full strength". I expect her to be somewhat crabby as she's a girl who Likes To Eat.

(Originally, we were looking at a start date of 2/5 which is Super Tuesday...selfishly, I'm thrilled to wait a week so I can keep my date w/my good friend Amy to watch Super Tuesday coverage all day & then have dinner w/our husbands while we watch returns. Gotta have SOME adult time, right?)

We've begun preparing for the diet by introducing some keto meals to Lily. We've offered her diluted heavy cream to drink (she likes), made some keto "chocolate milk" (diluted cream w/sugar free chocolate flavoring & a couple drops of Stevia), scrambled eggs slathered in butter (not a huge hit), and Keto Egg Nog (she liked that). I'm also getting used to lookign at EVERY label of food and discerning what has hidden carbs in it (lots of stuff!). I'm putting together my list of items to purchase before starting the diet (I need new measuring spoons and lots of little plastic containers to store stuff). I've finished reading Keto Kid, and am about 1/2 way through The Ketogenic Diet by John Freeman (aka: the keto diet bible!). I'm putting together a whole "keto diet folder" with recipes, information, and lots of other stuff that I can keep in the kitchen and take to appointments with me.

While Lily is in the hospital, I think I'm going to see if there's a social worker or someone who could spend a little time with me & Hank to help explain to him about Lily's diet, and why she needs all this special care & attention. I noticed him mimicking her spasms the other day (doing a head drop & then fake cry). I don't think it was to get attention, I think it really was just trying it on. He didn't seem to really want us to notice that he was doing it. I didn't make a big deal about it, but we did talk a little about it. He's very aware of Lily & her condition, and I think it is important to not let those feelings of his get lost in the shuffle. Fortunatley, during our hospital stay we aren't confined to our room so we can all go play in the playroom or perhaps even take a dip in the therapy pool.

Now that we've decided to move forward with this, I kind of just wish we didn't have to wait these last two weeks. The waiting & anticipation is hard!


Cathy said...

Katie - You, Lily and your family are in our prayers!! Don't get overwhelmed with the diet!! It's another step in your search for helping Lily!! Remember it can take a few months for the ketones to build up and for your dietician to fine tune the diet!!

Keep in touch.
Noah's Mom (4 1/2 w/GEFS+)

Sophie's Story by Elaine said...

Sophie was on the keto diet for about 6 months. It is very overwhelming at first but it gets much easier. Sophie's favorite meal was chicken salad, green beans and diluted cream (I mixed water with the cream to make it more the consistency of milk). If you have any questions about the diet, feel free to e-mail me. Good luck.


Cathy said...

Katie - I just had to post again!! I know the date to enter the hospital is close!! We're praying it works for Lily!! Remember that you can work it however you need to get her to eat. None of our children eat the same meals. Tailor it for her.

Way to go on your adult time!! It's hard to squeeze it in but it's critical.
Noah's Mom