Saturday, May 26, 2007

Box Fan Love

So after many, many months (actually years....) of Mira not sleeping through the night, we found something that has worked beautifully, as of late - a box fan! We have a 'white noise' machine that we have used for months, with no consistency of her sleeping through the night. She was getting up every 1-2 hours, every night. Well, after things started warming up here in KC, we turned on the attic fan (which makes a lot of noise during the night) and she slept great for a couple of nights when it was on. In order to replicate the noise when the AC is on and the windows are shut, we took out an old box fan, which has a very similar noise to the attic fan and she has slept through the night THREE NIGHTS IN A ROW!!!!

Could be the fan, could be something else - I don't care. Sleep is sleep.

On a side note, we are awaiting the results of some additional genetic testing done - as soon as we get it, I will post.

Saturday, May 12, 2007

'Aaaaaeeeyyyyy, Sleep on it!'

Last night was pure hilarity for Mira for some reason. Every night, we have a ritual that involves a bath, pajamas, and laying her on the bed with 'The Bunz' before she goes into her crib. The Bunz (a pink bunny nicknamed after perhaps one of the best characters ever to hit 70's prime-time, 'The Fonz' - why I don't really know, these things just happen) has a string, that when pulled, produces a quiet lullaby that Mira tunes into, usually resulting in some smiling and brief visual tracking for her. She usually stops fidgeting immediately when she hears the song and will focus in on The Bunz to hear the song.

Last night, Mira was so excited, she ripped out a great extended belly-laugh and was really digging The Bunz, laughing loud and smiling at him, her arms and legs flying around. Rare form for Miss Mira - we haven't heard her laugh like that in a long time.

So, Bunz, thanks for the memories........sure wish we got it on tape!

Saturday, May 5, 2007

Pureed Chinese - Who Knew?!

Mira had her first taste of Chinese food for dinner. We try and introduce new foods every so often (since she gets so tired of chicken + sweet potatoes - we can tell because she is turning orange) so tonight we pureed up everything we ordered. Sure tasted better than it looked.

We thought we were in the clear with the rash on her face, but it came back with a vengeance yesterday, so we have to go another round with her 'supercream' to knock it out for good. She also moved up to 10mg on the Lamictal on Wednesday (week 5) and so far so good.

I had heard through the I.S. grapevine that a new medication is in Phase II Clinical Trials (takes a long, long time for medications to reach this point) that is specifically designed for kids diagnosed with Infantile Spasms called Ganaxolone. The trial is currently recruiting patients, so this week I contacted the company and unfortunately, Mira does not qualify, due to her past AED medication history. If other parents are interested, the link is here: Ganaxolone is manufactured by Marinus Pharmaceuticals which is here:

Tuesday, May 1, 2007

Trolley Run and Video

The Trolley Run was a great success this year! The weather could not have been any nicer for the run, too. Last year it was overcast, drizzling, and cold. This year - sunny and 75 degrees! There were over 8500 runners this year, their biggest turnout ever. Next year will be the 20th anniversary for the Trolley Run, so expect something big……

Just a few picks from the run below. Thanks so much to everyone who ran (well, pushed strollers) with us this year and to everyone who donated to CCVI.

I also finished a video of Mira, which is posted below. It is also linked to the Yahoo site in the upper left hand corner. Thanks again!!!

Mira's Video