Monday, May 12, 2008

In Baltimore

We're in Baltimore now, and staying at the Children's House. It is housing for the parents of children with life-threatening illnesses that are being treated at Johns Hopkins. It is an amazing place, and the volunteers and staff are so nice and supportive.

The Millers came out tonight and did a joint interview with the local CBS station here in Baltimore. It was nice to see them again. Their daughter Jodie had a right hemispherectomy when she was 3 years old. She is 18 now and will be heading off to Pennsylvania to go to college in the fall. She and Jessie did a cute interview. It is so cool to see pre-surgery and post surgery side-by-side and knowing the possibilities that may lay ahead for Jessie. There are no guarantees, but the hope is enough for right now.

Unfortunately, Jessie had another bad seizure while the camera crews were still here. They were real cool, and didn't shoot her during the seizure. They got my respect for that. We had to administer Diastat again to stop the seizure, and I was running up to call 911, when her seizure stopped. I thought it kinda odd to call 911, when I was right across from the hospital. Anyway, she is sleeping now, and she won't remember a thing tomorrow. Denise Koch, from WJZ-TV Baltimore, who is a top anchor her in Baltimore interviewed us for about an hour. She seems to be a professional and caring person.

I got a call from Suzi back home, and she told us that People Magazine wants to do an article on Jessie. We are praying that all of this publicity is not meaningless hype. We have no desire for our daughter to be a celebrity. We just want to educate people about the disease, and hopefully make a difference somewhere.

Jessie's face twitched very bad all day today. The worst that Kristi and I have ever seen. Her mouth twitched enough, that it disturbed her speech. The disease is definitely progressing.

Tomorrow morning, we meet Dr. Carson.


Anonymous said...

I watched a video about your beautiful daughter on CNN and just finished reading your blog. Your family is truly inspiring. As a former Cast Member at WDW and volunteer for GKTW, thank you. Families like yours were by my favorites by far. GKTW families are always so grateful, and it is an incredible honor for the Cast Members to help make the wishes of the children come true. It really is the bright spot in our day. People believe that we make magic for GKTW families, but it is you who make the magic for us.

I will be keeping your family in my prayers as you go through this difficult time. I pray that the surgery goes well and your daughter will make a full recovery.

Diana Williams said...

You two are the best parents! You both are so blessed to have such an amazing and beautiful little girl! You and your family are in my prayers and many thoughts! Thank you for sharing your story of hope! Gob bless you all! Jessie you are such an amazing little girl! I wish you a speedy recovery!

Lara said...

Cris and Kristi,
I'm praying for this time to pass uneventfully at home and for the doctors to have divine wisdom.

Susan Duclos said...

Jessie's story touched me and I have written about it. My prayers are with her and your whole family.

Anonymous said...

I found your story through CNN yesterday and have read through your entire blog today. I will be thinking of Jessie and your entire family as you go through the next few months. She sounds like an amazing little girl!

LiberalismIsAMentalDisorder said...

My thoughts and prayers are with you and the family for a successful conclusion to this problem.

I had never heard of this before reading about it on another blog. I pray that your family will be strong and that you all keep your chins up.

God bless you.