summer fun

I can't believe it's July already. Emma had her dance recital and did a great job. It was really a great performance. All the dancers work so hard all year and it is amazing. Some of the seniors had been dancing since they were 3. Emma is taking a circus camp this week. They do tight rope, acrobatics, trampoline, ropes, tumbling, juggling, etc. No clown stuff though. She seems to be enjoying it.

Nora has been trucking along. She is showing no signs of side effects from weaning her off Lamictal. She is down to 30 mg/day from 70/day. Still talking all day- every second of the day. She wakes up and yells from her room "Mooooommmmmmmmyyyyy, where are you?" "Watch Sesame Street?" She went from giving a hoot about TV to an Elmo junkie.

Nora and Emma go to the summer camp at the EEU (Nora's awesome school) next week. They should have fun. Then we head to the OR coast for some family fun. Then home for 2 days and off to NY for my reunion and some family time. The girls and I will be there for 2 1/2 weeks. Then back in Aug. and Emma's 6th bday. Wow. Time flies.

Thanks for checking in. I'll try to get more exciting pictures soon.

Lori

Last days

Nora and teacher Valerie
Emma and some kids from her class.
Emma and Ms. Coghill (Emma was bawling at the end of the day, so sad to leave)

Friday was Emma's last day of Kindergarten. Big girl. And Nora finished her first year of preschool. Summer officially starts tomorrow. Bring on the margaritas!

teef

Nora grinds her teeth. She has always done it. It used to be worse. It would just make my skin crawl. She is actually on my lap as I type watching you tube videos. And grinding. Just barely but still grinding. She doesn't realize she's doing it I don't think. I tell her to stop "Nora no teeth grinding!" and she'll say "No teef!!!" and stop for 2 seconds. Emma has lost her 4 bottom teeth already and will be 6 in Aug. I hope Nora loses her little stubby teeth sooner than later. They look so tiny. She got teeth early. Her bottom 2 by 4 months old. So maybe she'll take better care of her big teef.

Happy Father's Day to all those dads out there.... Alex, Frank, Joel, Mark, Zeth, Marc, Brandon, Matt, Christian, Kenneth , Bill and all the special dads that I know and only read about. There are a lot out there.

Thanks for checking in
Lori


PS I got my i phone Finally and can't stop playing with all my fun apps. Emma and Nora especially like the whoopie cushion....

Lucky stars

I have to thank our lucky stars that Nora hasn't had a seizure in 2 years, since the 7th injection of ACTH. She has only been on one seizure med at a time-Zonegran and then Lamictal and they both worked. She is now down to 50 mg/day and we will keep decreasing over the next few weeks.

I read a lot of blogs about other children with Infantile Spasms. A lot of blogs. I don't know how to put them on the sidebar of my blog or else you could see them all. Maybe I'll try to figure that out today. ANYWAY, the IS blog community is very supportive. I sometimes don't feel like we fit in now- because Nora is one of the lucky ones who doesn't have seizures anymore. (knock knock knock on wood) But I cry with every parent out there who has to see their child have a seizure, have to go through test after test and with those who have surgery on their wee little brains to cut out the bad parts.

Like Sophie. I have been reading about Sophie since day 1 of our IS journey. She and Nora seemed so alike-close in age, close in developmental abilities, close in cuteness. Her mom Elaine has emailed me and I her about various things. She even emailed me the other week while in the hospital with Sophie. To comment on our Maui trip. Amazing mommy. They have been in the hospital for a couple of weeks now. I can't even begin to imagine how they are handling this. What a scary thing to watch. Please keep Sophie and her family in your thoughts.

I have to thank our lucky stars EVERY day. Nora is doing so well. She amazes us every day with something new. If I could figure out how to download video, you could see. Maybe later.

Thanks for checking in
Lori

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!
Lori

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.

Lori

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

Lori