Wednesday, May 20, 2009


Life has been CRAZY busy. I sure hope there is a relaxing moment around the corner.

Hannah's birthday is just around the corner. She'll be 8 on May 30th. It'll be tough for all of us in that it'll be our first birthday celebration without Billie. She LOVED birthdays. Still, we'll try to focus on what we have and not what we don't. We have Hannah. We very easily could not have. I think the biggest lesson I learned since last July 17th is to never take a single day for granted. We came so close to losing her many times. So, please pray she stays well so we can party! We are going to celebrate this amazing miracle of a girl that we are so privileged to have in our life.

We have a couple more months to wait for answers. On July 15th Hannah will go in for an MRI. After the MRI she will move to the epilepsy monitoring unit for another 24 video EEG and then the metabolic geneticist will come in to see her while we're there and order the testing she needs to be done. It will be a full couple days. I'm sad that we have to wait longer but what's two more months when we've waited 8 years?

There is a brand new gene mutation/deletion just discovered that the geneticist is going to test Hannah for. It is PCDH-19. They've found this gene in girls who were clincial for DRAVET but did not have the SCN1A deletion/mutation.(which Hannah did not) It's still very rare. Maybe more rare than even DRAVET but the prognosis is a little better than DRAVET too. I've read the research and agree that Hannah should be tested for this. So, that is something they will test for in July among some other more common things that they'd just like to rule out.

We're still looking at a move this summer. We really need to move to stay sane. The boys still need a mother too and with David an hour away it makes things hard. It would help for him to be closer to us and for me to be closer to the things Hannah needs. Please help us pray things will open up for us to make a smooth, affordable, and low stress transition. I will miss everyone here but I'm going insane trying to figure out how to get Hannah to everything she needs and be there for the guys and take care of our home, bills, etc.

Thanks for your continued prayers and support.

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