Wednesday, February 28, 2007

Bye Bye Acetazolamide......

Well, after Mira went up on her Diamox (Acetazolamide) she will quickly come back down. We started increasing her dosage on Monday after a discussion with her neurologist, from 18mg/kg to 28mg/kg, and by today, she was really having some adverse reactions to it. Over the past few days, she had become very limp, floppy, and lethargic since the increase, not to mention, her seizures became much more intense and frequent. Well, three strikes and you are out. I talked with her neurologist this evening and we agreed to take her off of it completely. If she is lethargic, crappy, AND still having seizures, then that is enough to say it's not working. So, Mira will wean the Diamox over the next few days and start Felbamate (Felbatol) on Monday. Felbamate has about as much of a chance as any of the others to help, so pray that this one works for her.

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


Mira is doing much better today. She still has a slight fever, but her appetite was in full swing for dinner - she ate some chicken and sweet potatoes, her favorite! We hope that she is on the upswing now.

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.

Coming up....................Vegas!!!

Sunday, February 25, 2007

You Give Me Fever........

Mira started spiking a fever yesterday and today it peaked at about 103. She had a pretty rough day overall and didn't want to eat or drink much. We were finally able to get her to eat about 3/4 of a Yo Baby peach yogurt for dinner. I think she just couldn't resist the 'rap' references with her food. Who could? Yogurt equals hip hop fun.

We are gearing up for another week of neurology discussion(s) and medication weaning schedules.....................

Saturday, February 24, 2007

What is the deal with Pediasure?

Well, we thought we were out of the woods with Mira and throwing up, but it seems as though we have discovered the trigger - Pediasure!!! She had been doing so well over the past few days with keeping food down, although she still is not eating much.

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

Goodbye Stomach Virus!

I think everyone is ready for Spring to arrive! After a nearly two week bout with a stomach bug, I think we are all in the clear (knock on wood). Early last week, we were awakened by the sound of Eli's dinner disagreeing with him at 2:00am. Thus began our journey into nausea and vomiting until the weekend, when Sarah and I had to publicly utter the words "I'm glad Mira hasn't gotten it"..............sure enough, right before bedtime on Saturday, Mira caught the bug and started vomiting. She has been fighting it off and on since then, yet has been able to keep everything "down" since Monday.

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

Let's Back up to December........

I have to rewind before I go forward! It seems that around the first week of November, particularly right after Halloween and the novelty of the 'Lightning McQueen' costume has long worn off and is lying in a shredded heap under your child's bed, not to be found until 2012. This is the time when your schedule soon becomes quite full. A scheduling marathon begins to take shape, where you as the parent, are caught in an overloaded, multi-tasking frenzy of simultaneous shopping and turkey basting, pretty much until the end of the year. At certain moments, I feel that being an octopus would have its advantages, despite the whole 'having to live underwater' thing. If only I had 8 arms. It would be sweet. Imagine if you could wrangle a stroller, a screaming 3 1/2 year old with low-blood sugar, several bags of groceries, and a runaway shopping cart (with a malicious grin) headed toward your brand new Odyssey that you just washed.

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

Welcome! - Starting Mira's Blog

After months and months of wanting to sit down and get a website going for Miss Mira, I finally am able to get started.......

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 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.