Friday, June 15, 2007

Almost done

This is my first post on Nora's new blog site. I am in the process of figuring out how this works. I probably should have started this long ago and used it like a diary of Nora's journey through Infantile Spasms. Anyway, check back whenever you get a chance and I'll try to update you on what is happening.

She is almost finished with her wean from the steroid, ACTH. Only 1 more week to go. She has been on it for 7 weeks now. She has gotten very puffy and gained a lot of weight which is one side effect. Her blood pressure has also been very high so is on b/p medication as well. She hasn't been too miserable except at night. She wakes up between 3:00-5:00 am every day and is up ready to go.

She did start walking about 2 weeks ago. She's bit of a drunken sailor at this point but at least we know she'll get there eventually. She still has no communication except crying and grunting. She sees a speech therapist every week so hopefully we'll get some language in the future.

Nora is also enrolled in a birth to 3 program which helps children with developmental delays. She goes 2 times a week and seems to enjoy it. At least, she doesn't scream the whole time. Nora also receives addtional PT/OT and speech therapies.

Anyway, I'll try to start posting daily. I guess I am a bit late with Nora's blog but I really didn't have the time or energy to figure it out.

Thanks for stopping by!

6 comments:

Rattana said...

Yahoo! Go Nora!

Mike said...

we are so proud of nora...walking!and all of her accomplishments.....
. and we are also very proud of her family, helping her with every step forward that she makes........love to nora and her family.........kisses and kisses......mim and grandfather

Lisa said...

Lori, you are an amazing mother. We are always here for you and your family. We love you so much!

Lisa

Amy said...

Lor - I am so happy that you have started this blog - sounds like things are headed in the right direction - I am in complete of awe of you, though you were born to be a mom! All our love to you Alex & your beautiful girls...Amy & Bill

Michelle said...

Lori,
Congrats to you for doing this blog, it is awesome and congrats to Nora for starting to walk. Keep up the great work, the patience and the advocacy for your little sunshine!!

aunt joan said...

Sorry Nora and Emma were sick hope everyone is well now. We are so proud of Nora and the family hope everything turns out postive.