Saturday, January 30, 2010


We found this idea in our recent issue of Family Fun Magazine, and last night Gee-off made them for the kids.

Simply push 4 pasta noodles through chunks of hotdog and boil them up - an instant hit!!!

Brenna chowing down (in her Cinderella headband of course!)

Drew ate his so fast, in this pic he had already moved on to the grilled cheese but wanted a pic of himself anyway!

Carter likes it! No surprise there! :)

In other news, everyone is finally feeling better. Unfortunately both of Emily's nurses got the bug too, and Emily has been having diarrhea for about a week now. It does seem to be easing up for the past two days though and we have a sample out to the lab just in case. I'm just glad we were able to keep things under control at home and keep her out of the hospital!!

Sunday, January 24, 2010

Sick of being sick...

So, we all took turns being sick this week with the 24 hour stomach bug. It hit some of us worse than others, but I missed work twice, Drew missed 2 1/2 days of school, and none of us ate a regular meal for dinner all week.

Emily is still on continuous feeds, gradually increasing volume.

This picture was taken during Carter and Brenna's "hangover". They'd been up all night, and finally could rest. If you look carefully, you can see that Brenna has her Fairy costume AND mittens and hat on under the blanket.

Wednesday, January 13, 2010

Keto Diet Anniversary

On this day last year, Emily was admitted to CHOP to start her initiation week on the ketogenic diet. You can follow this link to read my posts on how it all began. (Thanks to our fellow keto family for the reminder!!)

We had a very rocky start, the diet really caused her blood sugars to drop to dangerously low levels, and she got 2 stomach viruses in the first 2 months. Blech!! At that time, I was very pessimistic about any kind of success on the diet.

But once she was able to keep down the required formula, the diet began to work it's magic. Emily started having completely seizure free days in March and went SF for 103 days!! Her spasms have crept back on and off since then, but mostly off. We rarely see any spasms at all, and if we do, they are so mild we can hardly identify them!

Freedom from seizures has also made a miraculous difference in her development. Last year, Emily slept almost all the time. She was eating a bit by mouth, rolling some, and smiling more often. Now, she has much more awake time, she's holding her head up, her vision has improved - she focuses on objects and people and often makes eye contact, she is smiling all the time and laughing, she rolls, lifts her head up and props herself up on her arms while on her belly, she holds toys, puts them (and anything else she can get in her hands on) in her mouth, and in the past month she has started sitting UNSUPPORTED!!!!!! Unbelievable.

We are so thankful to the CHOP staff for continuing to recommend this diet and we're so glad we gave it a try. Emily has made such amazing progress and it is so awesome to watch her getting stronger and happier each day.

January 2009 (with my Aunt Nancy)

January 2010 (with Carter, Brenna, and Uncles Mark and Evan)