Monday, May 10, 2010

Come and gone

Nora 4 years old

Nora after 7 weeks on ACTH-16 months old


So Nora's 3 year anniversary for being seizure free has come and gone. I didn't even realize it. Is that good or bad?

May 2nd, 2007.

She had been on ACTH for 7 days and all the spasms were gone. I still had to give her daily injections for 8 more weeks. She was huge, didn't sleep, drank gallons of milk, acted like a zombie, got really hairy, had high blood pressure and scared the crap out of us. I had no idea what to think or what to hope for or what would happen to her. Would she walk? Talk? Live?

To think that today she is such a loving, vibrant, joyful little girl is unbelievable to the person I was 3 years ago. It was so hard to even hope that she'd be where she is.

This weekend we went around the block on her trike and she actually PEDDLED!!!!! This is huge. We've been pushing her on that damn bike for 2 years and nothing. She actually held onto the handle bars and peddled her feet. She made herself move independently. I was so excited. AND she stayed on the bike the whole time, didn't make a run for the street or in the opposite direction of me.

She got off the bus today in the same pants she went to school in. Her bus driver said that her teacher said that she used the big girl toilet today. They have been putting her in underwear and changing her a few times a day when she west her pants. But maybe she actually peed in the potty? I have an email into her teachers so I can get the scoop. I am sure you all will get an update:)

She just called for help from the kitchen-"Nora get down please" She was stuck up on the counter that she had climbed to grab a banana. How about that for communication! She is amazing. Truly.

Mother's day was nice, normal but nice. No breakfast in bed or any big surprises. Just some good times with my 2 girls. A walk around the block, yummy brunch (that I made), & sushi for dinner. Emma made me lots of cards and crafts. Nora's teacher made a card with pictures of Nora signing I Love You and every time Nora sees it she says "I love you" and gives me a big
kiss. Doesn't get any better than that.

Happy Mother's day to all the mommy folks out there and a special Happy Day to my mom. I love you!!

Lori

3 comments:

The Wilsons said...

Awesome news Lori, that's great about Nora. I think about her a lot, probably more than I think about the rest of you guys. ;) It's so amazing how well she's doing and I'm sure that she has a long ways to go, someday you will not just be putting her on a bus to school, but helping her move out on her own. I know it's a struggle, but you've done a great job as a mom!

OK, back to old Kevin. :)

Barbra said...

Lori.. thanks for sharing. I hope your story helps other find the strength and hope they need with IS. I found this site called rarediseasesnow.org which has a great resources and a blog too. Maybe you could share this blog there as well.

Barbra said...
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