Sunday, December 23, 2007

A Non-Stop Week

This week, as all pre-Christmas onslaught weeks are, was crazy. We hit the ground running earlier in the week with Eli's Christmas program all the way to today, when we were trying to get in some last minute shopping with 25,000 other frantic people all lobbying for what is left on the shelves, which isn't much. From the grocery store to the department store - it was all crowded, as expected. We survived.

Mira has been doing extremely well over the past week, with the exception of today. She has some diaper rash that is bothering her, but other than that, she has been doing great. Her sleep has been decent over the past few nights too. She is still getting up at 4:00am, but able to put herself back to sleep soon after.

We haven't seen any negative effects from stopping the Zonegran, as of yet. It's one less medication to deal with and keep out of her system, so good riddance. Mira has also had the pleasure over the past week to get some variety in her diet, having beef stew a couple nights. She loved it! Since we are slowly weaning her off of the diet, we have been adding different vegetables into her meals, as well as offering her oatmeal and yogurt in the morning, which is hit or miss. She doesn't seem to be too keen on breakfast these days, but I think she is enjoying a change of pace with meals regardless.

And of course, the great news is that Mira continues to be seizure free. Tomorrow will be 50 days of being seizure free! We hope that everyone has a Merry Christmas and I will post pictures mid-week!

1 comment:

kelly-Ann Larson said...

Hi Marc: I saw your message from ClubRett. I have a sooon to be 4 yo who I too thought would get a postivie Rett diagnosis...but no. SHe doesn't have seizures so we didn't test for CDKL5.

What we have been testing for is other metabolic disorders; one that mentions "hand behaviors" is Congenital disorders of Glycosylation ( but more likely for my daughter is Mitochondrial dysfunction (
Also there's a online group (of frustrated) but VERY supportive parents in "undiagnosed" stage of life. Please join us
Kelly-Ann in Minnesota