Thursday, May 28, 2009

Wowie Maui

Hi- we're back from our trip to Maui. The girls had so much fun. The beach, the pool, the aquarium, the pool, the luau, the pool, the ice cream, the yummy sushi, the parrots on heads, the pool. Did I mention the pool? Emma (and Nora too) did a lot of swimming. She is getting pretty good for a girl who can't touch in the shallow end. Alex and I were exhausted every night but tired and happy. The weather was awesome and who doesn't love the pool?

The EEU auction is this weekend so we are doing some volunteering to get set up for it. It is a huge event. Last year they made almost $600,000 and the year before that $720. K2 is a sponsor again this year. It should be a blast. And hopefully we'll get some fun stuff.

We started weaning Nora from her seizure medication (Lamictal). She was on 70mg/day and we've been decreasing 5 mg a week and is now on 55 mg/day. She seems to be tolerating it ok. Knock on wood. She is chatty kathy. Can't get her to stop! She just talks your ear off. She is super social too. She loves to greet anyone she comes in contact with. So hopefully her wonderful progress will continue.

Thanks for checking in! Aloha!

Sunday, May 10, 2009

Happy Mother's Day

Happy Mother's Day to all the moms out there. And especially to my mom! Big hugs and kisses.

We had a great day. We played at the park and on the beach. The girls got soaked and smelled fishy. The tide was way out. We had a bath first then a nice dinner for Judy (Alex's mom) and me. I made a fabulous strawberry cream cake. Yum. It was a lovely day.

Tomorrow we go to see Nora's neurologist. It is Nora's 2 year anniversary of being seizure free. She stopped having seizures after 7 days of ACTH. I can't believe how lucky we've been. Knock on wood. I can't believe that it has only been 2 years. It seems like a lifetime ago. What a horrible time that was. It is amazing how far Nora has come since then. We didn't think she'd be able to ever talk or even walk. We had no idea what she would be like. Now look at her. She's doing great, absolutely great. I am amazed at what she can do every single day. She does something spectacular every day. Literally. I am so grateful that she has come this far. I feel like she may have a chance at really beating the infantile spasm odds. I hope I am not jinxing it. I think she's an amazing little person.

Nora was on Zonegran for about 18 months (?) and has been on Lamictal for about 6 months, maybe more. I have to go back and check. I think they'll start weaning her off the Lamictal soon. I have mixed feelings of taking her off meds. I can't believe the progress she's made since being off Zonegran. It was soon after she was done with it that she really started talking.

So would she make even more gains off all meds???? Would she have a chance of having seizures again? We don't know what even caused her IS in the first place. Do her delays have to do with the seizures or from the agenesis of her corpus callosum? Or could her seizures have been caused by her arachnoid cysts? No one knows. Will she stay seizure free forever if she stays on her meds or could she stay s-free off meds too?

There are so many risks and factors to consider. I know of so many kids who haven't been as lucky as Nora who are still fighting seizures, lots of them, every day. And they haven't found a medication to make them go away. I am so so thankful that Nora does not have to be plagued by daily seizures anymore. Do we chance it and take her off her meds? I guess I'll worry about it tomorrow.

Today was a perfect day with my girls, my dog and my husband. We'll worry about tomorrow in the mo-ning. As Nora got into her bed, (yes bed, not crib!!!) she said "Mommy, night night, I lub you, see you in the mo-ning."

And 10 days until Maui. Ahhhhhhh............

Thanks for checking in.


Friday, May 1, 2009

May is here

Only 20 days until we go to Maui. SO excited. A very non exciting week around here. Alex got home Sun. and all is back to normal. Emma has running club today. She's getting ready for the Alki-a-thon in a few weeks. The kids get pledges to run laps to raise money for her school. We'll see how many laps she'll run. She's more of a slow poke than a sprinter. I can't believe she's almost done with Kindergarten.

Nora's school's auction is at the end of the month. It is an enormous event. Last year they raised over $600,000 and has made $750,000 in past years. It won't be as big this year due to downsizing the items and the economy. But it is a fun event and this year's theme is Mission Possible-spy stuff. What to wear?

I am worried about what to do with Nora this summer. Her school has a camp in July but we'll be travelling a lot that month (Seaside, OR and NY for my 20 yr reunion). But then in Aug? nada. She's too young and not potty trained for most camps and I wouldn't trust her to be in a typical camp setting. She's a handful to take to the beach/pool/park. Think 18 month old in a 3 year old's body. I have to be on top of her so she doesn't run away or get hurt. Emma has 1 camp scheduled in Aug. and hopefully some swim lessons. We'll have to get creative.

Thanks for checking in