Tuesday, May 13, 2008


I spoke with Mira's neurologist (or at least his nurse) about raising Mira's dosage and we agreed to wait it out another week to see if Mira can get all of the congestion out of her system. It's been lingering around for a few weeks now and she still has loads of snot - I don't know of a delicate way to put it. We stocked up on Kleenex at Costco last week and have since gone through half of it!

Sarah and I have been seeing a lot of head drops lately, maybe up to a half dozen or so a day that we catch. I saw a couple this morning and one when Eli and I were out in the park with Mira. Despite this, Mira is still in a great mood, eating well, and drinking well - all of the things she should be doing.

Mira has taken on the name 'Thumper' since one of her favorite things to do these days is kick. If you hold her in your arms, with her facing away from you, she kicks and 'thumps' like a miniature tornado - arms and legs going everywhere. She is also constantly arching her back, which makes it nearly impossible to sit her on your lap, let alone try and hold her. She seems to be in constant squirm mode.

Changing her diaper has become a real challenge, since all she wants to do is throw her legs up in the air (usually at you) all while twisting, turning, squirming, and generally trying to kick her way out position. Don't get me wrong - it's fantastic to see her moving so much and exerting an incredible amount of energy, but it is a total 5 minute workout for Sarah or I just to get her changed.


Anonymous said...

Hi, I read about your blog on another Moms website. My daughter, Kelly, has West Syndrome too! We had a much easier medicine road than you guys. I would love to email you. My blogsite is in serious need of updating. It is
My email address in museable1@aol.com. My name is Janette. Kelly was born Nov 10, 2008. We were diagnosed with West Syndrome in September of last year. It was terrible but we are under control with our medication.
Love to hear from you.
Janette Meyer
Kelly mom

Anonymous said...

oops, Kelly was born in 2006, not 2008!