Monday, November 26, 2007

Doing Much Better

Mira had a much, much better day today. She ate a great lunch and dinner, keeping everything down. She didn't sleep as much today, probably due to having some food in her stomach and having more energy.

Sunday, November 25, 2007

Thanksgiving Break

We returned from Illinois this afternoon, after spending Thanksgiving with Auntie Aura + Uncle Ware - thanks for putting up with us for 4 straight days!

Mira was mildly cranky on Thanksgiving Day - why we don't really know. She was pretty irritable during the afternoon and couldn't seem to settle down for most of the day. That was also the last day she ate a decent meal. Friday and Saturday she wouldn't eat anything all day, gagging on some pudding both nights, scattering the hardwoods with her upset stomach. We don't know whether she has a stomach bug, is bored with the food, or just isn't hungry, but she has eaten very little over the past 3 days. She is drinking plenty of fluids and doesn't have a fever, so we aren't real concerned at this point. We were able to get her to take a few spoonfuls of applesauce today, without gagging or vomiting - always a bonus when there is nothing to clean up.

Speaking of cleaning up...........I have officially met my quota of cleaning up bodily fluids for the next 6-8 weeks. Friday night - lots of vomit, soaking her high chair. Saturday night - repeat of Friday night, this time thoroughly drenching her Kidcart. Tonight - overflowing diaper (not the 'clear' stuff mind you) - staining her recently cleaned and disinfected high chair, again, along with the bed, the floor, and of course, her clothes.

On a positive note, she is still seizure free and still in a good mood! We have her neurologist appointment on Friday around lunch, along with her Christmas program on Friday evening.

Wednesday, November 21, 2007

EEG Results

Mira had her EEG yesterday and everything went very well, despite her not being able to completely fall asleep - she did a lot of rolling around, even giggling toward the end of it. This was her 10th or 11th EEG (sort of lost count) and they all have pretty much looked the same until now.

We did get a brief message back from her neurologist this afternoon and he noted the following: 'Her EEG is improved, although still abnormal. The movements and activity noted on the EEG are in fact not seizures or seizure activity.' This is very good news overall! We are going to get into a more in-depth discussion during Mira's standing appointment with her neurologist next Friday.

On a side note - it was great to see my sister and family yesterday evening in from Colorado, who graciously treated us to pizza -thanks so much! We hope to come out and visit soon. Hope everyone has a wonderful Thanksgiving!

Saturday, November 17, 2007

This Past Week

Mira continues to be seizure free, which is fantastic. On the flip side, she is having sleep issues again, getting up throughout the night. She also is having strange movements throughout the day, which to me are concerning. She tenses up and arches her back all the time, in this sort of rhythmic motion every 4 or 5 seconds and seems to do it throughout the day. While I don't think it's seizure activity per se, I do think there is something else going on with her. We have her EEG scheduled for Tuesday, which might shed some light on it.

Monday, November 12, 2007

One Week Seizure Free!

Mira has not had a seizure since last Monday, which marks one week of being seizure free! She has been vocalizing all day and constantly moving around. So much so, that we are keeping her off of the floor (she usually 'rolls' around on a blanket in the living room) because she is chaffing her cheeks and nose really badly.

She only got up twice last night, which is a big improvement from over the weekend. Things are going well for her and we are hoping and praying that it continues!

Saturday, November 10, 2007

Seizure Free Stretch

I hope I don't jinx it by saying this, but Mira has been seizure free for five days straight. Her last seizure was on Monday. She has been doing very well and constantly squirming. Seems like she won't sit still and has been smacking her globe toy so much, that I think she is going to break it. I hope her seizure free streak continues!

On the negative side, she has been having difficulty sleeping again. She has been waking up periodically throughout the night, crying as if in pain. This morning she got up at 4:00am and was inconsolable for a while. Her sleep patterns have been getting thrown off and she has been taking long naps in the afternoon, which is a recent phenomenon for her. I theorize that the sleeping issues are neurological, since her crying out seems to happen at night or when she is extremely tired. Coincidentally, that is prime time for kids to have seizures - when they are falling asleep and when they are waking up.

We do have her scheduled for an EEG on the Tuesday before Thanksgiving and a neurology appointment at the end of the month. She has not had an EEG for almost a year.

Tuesday, November 6, 2007

Going Well

Things have been going very well for Mira over the past few days. She has been having only one seizure every other day, since last Thursday, which is fantastic! She has been giggling and smiling more, and doing very well in therapy.

Once again, she got a REALLY big kick out of 'The Bunz' this evening, making some strange laughing noises which I have never heard before. She became very animated and excited as soon as I pulled the string!

Sunday night Sarah and I attended the 26th Annual Tiny Tim, a formal fundraiser for the Lee Ann Britain Development Center (also called the IDC) where Mira gets many of her therapies. It was amazing to see the turnout and generosity from so many people giving to such a great cause.

Thursday, November 1, 2007

Skunk + Spiderman Sightings!

We had a great Halloween last night and have enough candy to be on a sugar high until early 2012. Mira was a skunk, which she seemed to get a big kick out of most of the time she had it on (despite the frown in the pictures). The tail was the kicker for the costume!

Eli was Spiderman with exaggerated muscles and all. We made it up and down our block before he decided he didn't need to go door to door to get candy - we have plenty at home! I was even able to cash in on some of the candy, when Sarah picked up a bag of Bottle Caps. Now, my teeth hurt. Mmmmmmmmmm.........sugar.

We did finally get Mira's Kidcart on Wednesday as well. It is a three-piece interlocking system that has a seat, a 'cart' for around the house, and a stroller base, all for a mere $6,200 retail. We will find out from insurance how much of that we will end up paying. She was seen at the seating clinic at CMH over the summer to get fitted for it. She is just on the cusp of being too small for some of the straps, but she will grow into it.

Mira continues to do very well since being on the Lyrica. She had one seizure today, but was extremely active after dinner and even knocked her toy straight off the chair.