Monday, January 28, 2008

A Much Better Night (and Monday)

Mira rebounded Saturday night and slept from 7:00pm to 7:00am, only getting up briefly, once. I think she was making up for lost sleep. I think she might also be on the rebound with her eating habits as well. Up until this morning at therapy, she still wasn't eating much. She managed to down an entire yogurt with her feeding therapist, which is probably more than she has consumed in the last 4 days, combined.

We also managed to get an appointment (most likely due to a cancellation) with CMH neurology, toward the end of February, so we are on the books for Mira's next appointment.

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.

Tuesday, January 22, 2008

This Week

Mira has been doing very well over the past week. She continues to vocalize a lot throughout the day, nearly shattering windows at times. It is seriously ear piercing. She is also trying to move around quite a bit - she seems to be in a state of perpetual motion, especially when she is in her crib or on the bed. It keeps diaper changing times fun and exciting. She will twist on her side as she is rolling around and it seems like she is trying to lift her head up, but it is so much work for her.

Mira is also starting to grab at toys. Tonight, she reached several times for her Abby Cadaby toy (from Sesame Street) which have bells tied around her waist to make noise. She has been responding to Abby consistently and she gets excited every time she hears the bells. Her movements most of the time seem uncoordinated and not very deliberate, but you can tell that she is really trying to do things. Over the past few weeks though, her movements are becoming increasingly purposeful. Sarah said that Mira has been pulling her bows out of her hair throughout the day too. She is making a little progress every day by doing new things.

Monday, January 14, 2008

Baptisms + Decibel Ranges

We had Mira and Elias baptized yesterday at St. Michael's. It was something we had been planning to do for some time. We wanted to thank everyone so much for being there and for all of the wonderful gifts for the kids. A special thanks to Tom, Nikki, Sophia, and Siena for making the trip in from Illinois. I will post pictures soon.

Mira had a pretty rough night last night - who could blame her after such an eventful day. She was up most of the night, kicking and vocalizing. The interesting thing is, she has become REALLY vocal over the past two days. Yesterday evening, she seemed to strike a chord with everyone in the house - a really LOUD chord. She has been moving and squirming around a lot lately (which is progress!) and now has started vocalizing a ton, to such an extent I thought she was going to shatter some wine glasses tonight. I shot some video last night of her doing some of it.

Friday, January 4, 2008

Two Months Seizure Free!

As of January 2nd (Wednesday) Mira has been seizure free for two solid months! Lyrica has turned out to be the miracle medication for her. She is now only on a single medication and has weaned off of the diet for the most part. She is able to now enjoy applesauce, pudding (with extreme caution - see yesterday's post) and she actually had some of my Mom's famous spaghetti sauce yesterday, which we had on reserve in the freezer. (Hint, hint, Mom - we need to restock.......). We have been helping Mira get reacquainted with oatmeal and juice as well, in moderation. She continues to do so well and we are all so proud of her!

Thursday, January 3, 2008

Press Your Luck

For those of you out there who remember the 'Whammy' from the game show 'Press Your Luck', this one is for you..........

Earlier this week, Mira wasn't eating very well and we were having a difficult time just trying to get her eat anything, even a few bites. She had been taking plenty of fluids and has gone through bouts of not eating before (see Thanksgiving posts) therefore, we weren't too concerned. Well, after a few days of nibbling at meals, I figured it wouldn't hurt to try and feed Mira in her KidCart, since it wasn't likely that she was going to eat anyway. The first few spoonfuls of applesauce went off without a hitch, so I graduated to vanilla pudding, figuring I was on a roll.

This is usually the point where I begin chanting 'no whammies' in hopes that Mira doesn't gag on the pudding, which is her way of saying "I'm REALLY not hungry so stop tyring to feed me." Well, the Whammy came out, meaning Mira proceeded to gag once and vomit everything she had drank in the past 48 hours, all down the sides and front of her KidCart. Her stomach holds a lot of fluid, just so you know.

Ahh, to clean the KidCart is so, so much fun. First, you strip all of the straps, belts, armrests, seat padding, neck padding, (separating the padding from the covers) and throw it all in the wash. Then, detach the seat from the stand, scrub the seat and stand down with soap and water, getting in all of the bolts, screws, and wheels. If it's too cold outside, you get to do all of this in the bathtub instead of spraying it down with the hose. Once all of the padding is scrubbed, washed, and dried, you get to reassemble the whole thing. Oh, yes, and Mira needs a bath too.

The irony is that this is certainly not the first time this has happened. It seems whenever I press my luck trying to feed her in the KidCart, I lose and end up an hour later with wrinkled hands, a bottle of 409 in my hand, crawling on all fours scrubbing the hardwoods.

The moral of this story is simple. Don't ever feed Mira in the KidCart. Ever.