Monday, October 10, 2011

facebook page for Memphis

Hi Everyone, hope you all are well. We have been very busy lately. Wanted to let everyone know that Memphis is stable as of right now. At her last cardiologist apt on ultra sound showed that she might have a separate issue with her heart:(

It's so much info to update. So we made Memphis a facebook page so family/everyone can keep up with her. And hopefully it will raise a little awareness of this rare condition(vein of galen malformation) as well. You can just search for...Memphis Isabella Myhre on Facebook and like the page. I invite all who are interested to like the page. I'd love to share Memphis's Journey from diagnosis to cure with you all.

This condition is so rare and it does feel like no one can understand. But we continue to take it day by day. It's very scary not knowing what the future holds for your child health wise when your child has a life threatening disease. Seems I stay tired all the time from emotional tiredness. My mind needs a break, but I just haven't found a way to shut it off(even in my sleep). The Emotional Roller Coaster that comes with going through something like this is indescribable.

Here's a pic of the aneurysm in Memphis's brain(VOGM/vein of galen malformation). The large mass in the middle is the vein the aneurysm is in. Clearly this is NOT what a normal vein looks like. Honestly it's very hard for me knowing that this is in my little baby's brain.

Sorry if this post is a downer. I try my best to be honest though. Memphis is a happy baby, and we are getting her the care that she needs. The Dr. we found in New York who specializes in this rare condition will be the one to do her embolization procedure/s to fix this. He won us over with one phone call.

Gotta go for now. Both baby girls are crying. Take care my friends.

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