Two Sisters, One Heart

The Hot Chili Steppers finishing the race(that is our team name in all the runs we do)

Josie and the event t-shirt

Mandy Bailey and her sweet little girls, Taylor (left) and Emma(rt)

Josie and her crown. The purple one is for Teresa

At the run with some of the Baileys and Marjorie and Erik Infiesto. The Infiestos had conjoined twin girls born a year and a half ago. They got to spend 6 weeks with them before they returned to heaven. Great family. What a pleasure to meet them too and hear their incredibly brave and touching story.

Memory Banners for the conjoined twins that have past

Josie doing crafts with the girls

Josie and the boys playing Wii

The girls trying to use Josie's canes

Josie walking herself onto the scale at the neurologist today

Josie and I with our 2 Sisters, 1 Heart bracelets

Josie and I had the incredible pleasure of going to Phoenix, Arizona this past weekend to stay with the Bailey Family. The Bailey's have 6 beautiful and amazing kids. Their twin girls, Emma and Taylor, are 3 1/2 and are conjoined at the chest. They have absolutely defied the odds. They were born, which is a miracle in itself that they survived the pregnancy, with one 7 chamber heart. Their story is truly remarkable as are their personalities. The Baileys put on a fundraiser for their foundation, 2 Sisters, 1 Heart. They had a 5K, 10K and a one mile fun run. Josie and I ran in the 5K and walked the fun run with the Baileys. After the run there was a carnival. Josie had so much fun. In addition to the girls, there is Paige, 11, Drew, 9, Cole, 7, and Blake, almost 2. It was a delight to be with their family and get to know such incredible people. Josie had a ball with all the kids especially the boys who are closest to her age. It was a great privilege to be with them all. Thank You Baileys!!

Cute story...Josie and the twins got crowns at the event. Josie only took hers off to go to bed and when that happened she was very careful to put it next to her bed. She wore that thing every waking moment. On our way home on the plane, she took the crown off and I put it in the bag. When we landed, I went to get it for her because of course she wanted to wear it and it was no where to be found. Josie was devastated. I told her I would get her a new one, but of course that wasn't really the point. As we got of the plane she kept saying in the saddest voice, "I am now just a Josie. I am now just a Josie" Just a Josie...never. I tried to convince her that princesses were still princesses even when they weren't wearing their crowns. PS. Luckily they had a Party City right down the street from the airport and she was recrowned.

Today we went to see Dr. Mitchell, Josie's neurologist. She didn't say a whole lot about her writing her name backwards after a seizure. Probably because she can't even explain it. She was a bit alarmed about how sensitive her head is to movement, but she can't explain that either. No one can. Finally, she doesn't like that she is having seizures even if they are only focal ones. She is worried that they will increase and also that they can affect her mobility. We are going to put her on Topomax and if it works we can ween her off Carbitrol which obviously doesn't work. I am a tad hesitant about using Topomax because it can have a sedating effect. We will start her off really slow to see if we can avoid that side effect.

After neurology and a blood draw, we got to go upstairs to visit Teresa. She is doing really well and will have her shunts put back in tomorrow. The fungal infection responded to the medicine and she is cleared for surgery. We actually saw her neurosurgeon and he was pleased with how she is doing. He is going to try to do one shunt and see if that holds. If not, he will go back in and put in another one. Josie sure doesn't like seeing her in the hospital. She is worried that she isn't going to be OK. She kept telling Teresa don't worry you get to go home soon. Teresa just smiles at Josie. You can tell she is very glad to see her. Please keep Teresa in your prayers tomorrow morning as she has to endure yet another surgery. Thanks, Jenny and Princess Josie (not just a Josie)