About

Hello, my name is Stephanie and I’ve created the million-and-fourth mom blog on the Internet.  I am a stay-at-home mom from Pittsburgh with a sorta (not really) successful crochet business on Etsy.  I’m married to Andrew and have a toddler named Will and an infant named Paige.  Paige was recently diagnosed with a rare brain malformation called Lissencephaly.  It’s so rare that Google spellcheck doesn’t even recognize the word.  I’m not entirely sure why I’m even starting a blog but I hope I can use this as a tool to meet people in similar situations, keep those who are interested informed, and learn a few things along the way.

 

Advertisements

5 comments

  1. Hi, my name is Lisa and my little lady 5 month old Macey was diagnosed with Liss 2 weeks ago. Thank you so much for your blog. It’s the only sign of hope in a very depressing google search. We are currently going through steroid treatment for infantile spasms, and hoping desperately that my once happy smiling baby girl will be there again once we start weaning her off the steroids and onto anti-convulsive drugs instead. I think I can handle everything else this horrible disease can throw at us, as long as I am able to see my little girl smile occasionally.
    Your blog on food options and suggestions on spoons is awesome. There is no information out there when it comes to this sort of thing. Please keep it coming!
    Thanks again, from a very grateful mummy.

    1. Glad you like it!! Paige started smiling again when she weaned off of her steroids and it was the best feeling! If you are on Facebook I get a lot of support from The Lissencephaly Network and The Liss Loop groups. Keep in touch!

      1. My name is Michael. My fiancé’ Tricia and I have a beautiful daughter Charlotte Mary who was diagnosed with Lissencephaly at the age of 4 months old. Charlotte just turned 5 this week and is as beautiful and happy as ever. Tricia and I recently started a foundation with the purpose of assisting and guiding parents and families of newly diagnosed Lissencephaly children. Our goal is to EDUCATE the families by providing source materials to all the Children’s Hospitals in the country, to provide SUPPORT through a local network of individuals who can share their experience with the families, and to help these families Thrive in the new world and adventure they are about to embark on as a Liss family. After reading some of Stephanie’s blogs and comments of others we would like for you to like our Facebook page https://www.charlottelissensfoundation.org and check us out. Although we are in the early stages of our program we will be looking for Liss families throughout the country to join our cause. Thank you.

        Michael and Tricia, and of course our Chairman Charlotte Mary.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s