Wednesday, February 28, 2007
In the meantime, Sarah and I have planned a trip for months and we are leaving tomorrow, for Vegas! We have not had a vacation that didn't involve family, kids, or work since 2000, when we spent a week in Tokyo. It will be a short weekend trip, but it will be fun. Sarah's sister Aura is coming in from Illinois (with Truman - Addy will be staying in Illinois with Daddy Wario) to watch Eli and Mira. I cannot thank her enough for letting us get away for the weekend - hope she isn't pulling her hair out by the end of it!
Monday, February 26, 2007
We had a long discussion with neurology and came to the conclusion that we should keep Mira on the Diamox for a while longer, at least until she is healthy for certain period of time. She is currently at 18mg/kg and will go up in dosage to around 30mg/kg, which is about the maximum dosage for Diamox, before you start to see undesirable side effects. So far, it hasn't done much for her, but we are willing to continue at a higher dosage, since she is already on it. It may take a few weeks before we abandon it, should it prove to be ineffective.
The nurses at Children's Mercy are wonderful with Mira's situation. Being as busy as they are, they are always responsive and caring, helping us navigate through all of this as best as we can. Mira is going to start having regular neurology appointments, probably every three months. Her next one is in May, but we keep in close contact with everyone at neurology week by week to let them know how she is doing.
Sunday, February 25, 2007
We are gearing up for another week of neurology discussion(s) and medication weaning schedules.....................
Saturday, February 24, 2007
Sarah and I were talking and half-watching the highlights from the Mizzou/Nebraska game (Mizzou lost and Sarah cheered.....) when it happened. Mira was sitting on my lap, when I leaned her up and she let loose all over my lap, several times. Yummy. She had done the same several days ago, within an hour after having some Pediasure. So I think we are steering clear of it, indefinitely. Must be the sugar content. Her seizures have been remained basically unchanged - we think she has been at a consistent level with the Diamox and vitamins over the past week.
Otherwise, it's been raining here all day, so a trip to Korma Sutra (Indian food) was in order. After a soaking trip to the Plaza to run errands, Sarah and I had our nan + saag fix for the day while Eli had chicken nuggets. It's supposed to snow again tonight so I think we will all be trapped indoors tomorrow....................
Thursday, February 22, 2007
Mira has been doing a lot of sleeping lately, probably drained from the stomach virus and not having a whole lot of energy to do much. She has been on the Diamox for about two weeks or so, but it is really difficult to see if it is doing anything since she has been sick for a part of that. She weaned off of the Trileptal in early February. We saw no improvement with anything when she was on it. We are planning on talking with her neurologist early next week, which hopefully, Mira will get in some healthier days before that time.
So, here we are on Thursday and I think the sickness is hopefully fading out. Mira is finally starting to get her appetite back and Eli gets to go back to school tomorrow! The poor kid has been cooped up in the house with a fever or something for over a week. You can only watch so many Thomas the Train videos before it becomes old "Sir Topham" hat. (bud-umb-pah! - thank you, please tip your waitresses................)
Tuesday, February 20, 2007
In the midst of this frenzy, there are great moments to cherish. Mira had her very first program, sponsored by the Britain Center, back on December 7th and we all had a wonderful time. Mira's class played along with a couple of songs, with bells in hand. After the program, all of the kids and therapists were able to see Santa, who had an endless bag of goodies for everybody. Mira is sitting on the far right with her feeding therapist, Jamie.
Eli was a little skeptical of Santa..........besides, someone just mentioned there were cookies here?! Yeah, look Santa, I gotta bolt. Can you just drop off some toys at my house as scheduled?
Auntie 'G' took this picture of all of us the family. I think I had consumed about twenty sugar cookies and a gallon of punch for 'dessert' when she snapped this. Who needs dinner?
Monday, February 19, 2007
For those of you who are familiar with Mira's story, this blog will serve as an unpdate for Mira and everything that is going on in her life. If you want to know more about Mira's medical treatment history, follow the link to www.kidsepilepsy.com and do a search for Mira's name on the site. Otherwise, if you go to the January 2007 Archive, you can find her longer history.