48 hours in 1 room with a 3 year old = Ahhhhhhhh!!!

This past weekend, Bree and I spent a lovely three days at Florida Hospital in Orlando for her 48 Video Electroencephalogram (VEEG). The room was beautiful as well as the facilities...better than Arnold Palmer (although it is newer). After we were there a few hours, Bree was finally connected and where ever she went her backpack and the video camera followed. For a little girl with Sensory Processing Disorder, she did amazingly well with the wrap on her head. The first day went by pretty fast and even though there were a few time she woke up that night, we both slept pretty well. By the second day she was used to the cords coming from her head and adjusted to wearing the backpack. The second night was a breeze...sleeping through the night. Sunday couldn't have come quicker. Spending three days in the same room was grueling...not being able to take Bree for a walk or go to the play room was difficult. I thought it would be strange having a camera following everything she did, but after a while I forgot it was even there. It ended up being a successful reading and all we know now is that she had no events (seizures) while we were there.

Update

Slow-spike were found in the left frontal lobe. We knew they would find background activity and now we know where it's coming from. There was no focal point found but we now know that her current level of medication is not working. She will now increase her amount of Lamictal. to 50mg in the am and 75mg in the pm. Let's hope she has no seizures!

Easter 2010

This past week was a hectic one...the kids were on Spring Break. I had planned to do a family portrait session, but it was unfortunately cancelled. So, I decided to post my own family session from our Easter holiday. My husband, our kids, and I went to my mother-in-laws for the day and spent time with her and my sister-in-law and nephew. The food was delicious and everyone had a wonderful time. The kids ate plenty of candy and my son enjoyed the egg hunt over and over again.

Here are a few pictures from our holiday.

Epilepsy Awareness Walk

The girls and I will be a part of an important cause this March. I've created "Team Paige and Bree" and will be raising money for epilepsy awareness and research. As you know the seizure disorder the girls were diagnosed with, Infantile Spasms, is a devastating form of epilepsy. There is no cure for IS but with our donations researchers will be able to continue looking for one.

The walk will be held on Saturday, March 6th at 9am at the beautiful Lake Eola in Orlando. You can make a donation by clicking on this link:

TEAM PAIGE AND BREE

I'm so proud to be a part of this and look foward to growing our team and surpassing our goal of $200.00. My dear friend Maureen has joined our team and has already raised $55.00. As of today Paige and Bree have raised $150.00. A big thank you to Michelle McDonald, Beth Chapman, and Theresa Perrault for your donations. And a BIG thank you to my Uncle Howard for his amazing donation of $100.00. It's people like you who give us hope that there will someday be a cure. Thank you and look foward to posting more thank you's as the donations come in. And a post is never complete without a picture, so here you go.

A new year...a better year!

Good bye 2009...goodbye hospital visits...goodbye seizures. That's my resolution for this year - not to lose weight (not that I wouldn't like to) or eat healthier (would like to do that as well) but for our daughters to have a happy and truly healthy year. It always seemed like as soon as one medical bill was close to being paid off something would happen and another would come. Our girls have been through too much...more than anyone should have to go through. We just want our girls to live life as normal as possible and spending hours in the ER or days in the hospital is never normal. We are so lucky to have such beautiful daughters and the idea of when the next seizure will come is always in the back of our minds when it shouldn't be. So let this year be different.

Christmas 2009

This holiday season was an exciting one. Of course, I baked too many cookies and spent too much money but the kids had a wonderful time. The kids and I went to my mom and grandmother's on Christmas Eve to open gifts; my aunt and uncle met us there with many more gifts. Connor was so excited to see his very first big boy guitar...I hope he takes to it-he loves music. Paige and Bree were given twin baby dolls that are able to talk and sing back and forth through a sensor on the sides of their heads. It's pretty amazing to watch. The best part of the day was watching the girls open their gifts for the first time. Never have they tore into a gift and it was a sight to see. That evening the kids received their traditional Christmas Eve pajamas from Santa before Connor wrote Santa a note and left out cookies and milk.

Bright and early the next morning, Connor was ready to go and minutes later every gift was open. I feel so very fortunate to have such a wonderful husband who is able to provide our family with such happiness. The morning was followed by dinner made by Pete's mom. It was a wonderful ending to a wonderful holiday. Here are a few pics of the holiday.

Yummy cookies

Christmas Eve

at Grandma's house

The girls got a keyboard...

and Connor got a guitar

The talking dolls...too cute

Pete and the girls with Pete's mom

so many toys!