Friday, September 19, 2008


We went to the neurologist today to follow up on Nora's last EEG. He said it looked normal. Hmm. I asked if it's normal for HER or just normal. He said normal. But this is only a slice of time that we are seeing and it may not be normal all the time. So it could look not normal at another time. But she looks good. So hooray for that.

And we keep her on her current medication-lamictal until next May when we see him again and start weaning. I was hoping to get off all meds but he said that kids with IS who are on meds, seizure free, for 2 years have only a 30% chance of recurrence but kids who go off earlier have a 70% chance of recurrence. My view was that she seemed to do so well once off zonegran that she'd do even better med free. nope.

Then I brought up the fact that she is missing part of her corpus collasum and whether or not that is causing her delays rather than the seizures. Of course no one can tell us for sure. There was SOMETHING that made her brain not form right when she was developing. We don't know what THAT is. THAT is what made her have cysts, THAT is what made her brain not grow an important piece, and THAT is what made her have seizures. PROBABLY. Once again, it is a big question mark.

SO my next concern is what we can do now. Apparently we are doing everything known to man (or at least the neuro) at this time. But I want more. I want to see more progress. I want her to be so far beyond where she is. Don't get me wrong, I am so thankful she is doing so well and progressing but it is just not fast enough. What about when she turns 3 and we have to switch to the public school district? What if they don't give her everything she needs? I won't be able to watch through a window like I can now to make sure they know what she needs or is trying to say. If she isn't fixed by the time she's 3 how will I know if she will ever be? So once again I will stress and agonize for the next 5 months worrying about what school she'll be in when her birthday rolls around. awesome.


Sunday, September 14, 2008


Nora is such a stinker. I'll say no no Nora when she climbs on the table, I'll say no no Nora when she tries to sticks her hand in the toilet, I'll say no no Nora when she grabs the mouse when I am on the computer etc. etc. Now, every time she goes to do one of the forbidden activities, she'll say newoo newoo (no no) and then do it anyway. So much for no no.

And everyone is Emma. She'll see a girl at the park and exclaim EMMA! She'll she herself in the mirror and exclaim EMMA! She'll see the mailman and exclaim EMMA!

And everything is BA. Her cup is BA. A book is BA. Ollie is BA. Everything but Elmo. and Emma.

Alex has been in China since Mon. and gets back tomorrow. Yeah! The drywall guys start on the basement tomorrow. Yeah!!! And Nora starts school again tomorrow-yeah!!!

Gretchen and I have been ignoring our children while playing Rock Band on Wii. I highly recommend it. (I'm like Eric Clapton on the guitar by the way) Addicting and fun.

Thanks for checking in

Sunday, September 7, 2008


So Nora has had a fever for a week now. It hovers around 101 but goes down to 99 and up to 102. We went to the Dr. on Thurs. and no ear infection. I had to try to get a urine sample (urinary tract infection) but no luck. (they give you this bag to stick to her to try to catch some pee) Didn't work.

Then she seemed better on Fri. and we actually saw another Dr. for a consultation for vaccines. He will separate the MMR for her and sees a lot of kids with special needs. He has experience with kids who have IS, Agenesis of the corpus callosum and cysts. She still had no ear infection.

So Sat I went back to get more pee bags and got a little sample of course the clinic is closed by noon. So I have to keep it in the fridge. But today she still has a temp of 101. There is an after hours clinic at the children's hospital. They will probably give her a catheter to get some urine. Not fun. But a week of fever is nuts. AND Emma has a bday party today so Alex will have to bring Nora by himself. UGGGGG.

Why does this always happen to poor Norsie. Nothing is ever easy. She is going to hate being held down and have a catheter put in. but I don't think there is any other way to see if she has an infection.

Emma seems to like kindergarten although it is hard to get any info from her. Hopefully she'll make some new friends soon and feel like part of her new school (me too!).

Thanks for checking in

Monday, September 1, 2008


Emma and I made Gak the other day.

Nora really liked playing with it. Yes she did try to eat some, but mostly she just liked to feel it. It's cool and squish. It was so nice watching Emma and Nora enjoy the same activity. It really is fun to feel. And easy to make.
Only 1 more day until the big K. Emma is getting excited. And I am ready. Alex has been working in the basement non stop for the past 3 days so I had my fill of girl bonding time. School here we come!! And Nora starts back up the week of the 15th.
Happy Labor Day!