Saturday, January 26, 2008

Rough Night

Mira tends to go through phases of not sleeping well and last night was 'one of those nights'. We usually chalk her poor sleeping up to several factors, including how much she sleeps during the day (little lately) or how she has been eating (very poorly lately) and/or how active she was during the day (not so much yesterday).

So, I put her down about 7:30pm last night and she slept soundly until about 11:30pm. After thrashing around and vocalizing (still very loudly and Eli somehow doesn't wake up in the room right next to her) in her crib until about 1:30am, she fell back asleep, woke up again at 3:30am, screaming. I then gave her a bottle and she stayed up until 5:30am, dozed off until 6:45am, then got up again for the day.

Mira also goes through bouts of not eating, which she is on day four of not eating much of anything. A few bites here and there to get her meds down, but that's where it ends. She plugs back a ton of liquids every day, but is snubbing everything we offer her these days.

We all have cabin fever lately, since we have been braving the 0-20 degree temperatures here for two or three solid weeks now. Sarah left for Chicago yesterday, for a much needed girls' weekend out and I returned from a Nashville day trip late Thursday night, to a balmy 7 degrees here in Kansas City. Unfortunately, it is just as cold in Chicago and Nashville as it is here - so much for a change of pace. It is supposed to be in the 50's today, so hopefully we can get outside!

No news on the Rett's testing yet - my weekly harassing phone calls to neurology seem to offer no new insight, other than 'genetics is still working on it'. I will try again next week I suppose. The neurology clinic at CMH is going through some rough transition - neurologists leaving and new ones coming in, which means shifting patients and often, frustrated parents. It is extremely difficult to even get an appointment set up now. The books are supposed to open up next week, so that we can actually set an appointment, which we are told is another 2-3 months out after the schedule is posted.

1 comment:

Anonymous said...

Hi guys,
I've been following your blog as my little girl also has seizures and developmental delays. First off I am absolutely thrilled that Mira's seizures have stopped with the Lyrica!! That is so awesome. I am writing you this note though as my daughter's physiotherapist recently suggested getting a metronome for her to help her sleep and it has worked incredibly!! We turn it on at a real slow setting when we put her to bed and she will fall asleep listening to the rythm of it. Even when she wakes up in the middle of the night we just turn it back on again and she will go to sleep. Its been a miracle sleeping solution for our daughter who would go sometimes 40 hours without sleeping! I hope it will work for Mira too!
From Mya's mommy