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.



Kristina said...

Oh my gosh look at that sentence!!! Nora is amazing - I don't even know her that well but I can see her progress so clearly. I am SO happy for your family. :-)

The Wilsons said...

I think that she is doing awesome! She seems to leap forward each time we see her. Maui will help too, you'll have to make it a yearly trip to turbo charge her progress!