Massive and Great Update - Part 1 - Overview and Friday's Trip to the Capitol

Ok, so I apologize for the delay in posting. The rumors are true, and we’re coming home soon. Really soon. This is probably the biggest news we’ve received in a while, and I will give this the treatment it deserves. Unfortunately/Fortunately, several events/meetings/Telemundo interviews happened last week, each of which is deserving of its own lengthy post. This also means that some items that deserve a detailed mention (like Mike Segal coming by the hospital again; mom and I go to the Social Security office again) I’m just going to have to skip over for now; Mike Segal, great guy… if you didn’t click the link to his website yet, you should… What’s this? I didn’t put the link up yet? My bad.

Now, here I am in the Barnes and Noble/Borders across Northpark Mall in Dallas, wearing my oversized headphones on my oversized head… it’s a nice Sunday and I’m ready to catch (everyone else) up. I think the best way for me to handle this is in order of awesomeness – so, the posts will go in this order –

Part 1 – Going to the Capitol

The Jamie Schanbaum Act is through the Senate

Texas Meningitis Day

Part 2 – The Words We’ve Longed to Hear; The People We’ve Longed to Meet

(a) Boutros's Hand Update; We're Leaving Houston on Sunday

(b) Jen Griffin comes to visit Jamie

Part 3 – Medical Updates – Prosthetics and Unplugging

Prominent Prosthetists Propose Prosthetics (that was fun)

Important Medical Information

Sorry, if I get to rambling or get off track, or if the grammar is bad… I’m doing as best I can here… so without further ado, here’s the last week in the life of Jamie and the family.

We’re very excited to announce that Senate Bill 819, authored by Senator Wendy Davis from Fort Worth, passed through the Texas Senate by a vote of 29-1! [For the record, I consider this to be a unanimous vote, because the only vote against the bill was due to one state senator’s objection to the procedural matters related to this and most other bills. (Also, this is why I wish I could insert footnotes into the blog posts) So I feel good about 29-1]. As you probably know, SB 819 would require all students living at on-campus dorms, on both private and public universities in Texas, to provide proof that they have been immunized against the meningococcus bacteria. There’s an opt-out provision in the bill too, so people who are fundamentally opposed to vaccines won’t be required to subject their children to any unwanted vaccines. To each, their own. So, it passed. I’m grateful to all of Jamie’s friends and supporters who contacted their state senator about this bill, and whether you told them you were a decorated war hero (Blake H.) or a member of the medical profession (Justin C.), I’m glad you contacted them. Also, to all of the immunization movements out there, thank you for getting the ball rolling on important legislative efforts such as this one. We didn’t do this in a vacuum and wouldn’t have made any inroads unless people had already been made aware of the damage caused by meningococcal disease.

As for Friday’s details – Mom and I were in town from Houston to be recognized (along with Maureen Moore and Nancy Day, two women whose families have been impacted by the disease) on the floor of the senate in connection with Texas Meningitis Day. KC was in Houston with Jamie, if you’re wondering. I’ll explain the details of the Texas Meningitis Day resolution shortly, but that’s why we were in town. We hoped that SB 819 would be voted on while we were at the capitol, and mom and I were ready to stick it out until the vote took place. Luckily, we didn’t need to wait long. Senator Davis, asked the Lieutenant Governor to prioritize the bill, which meant that it would be heard early – it was the fourth bill heard on the day. In fact, we had just finished taking pictures related to Texas Meninigits Day when we were told that we should go to the gallery (or is it galley?) to watch the vote on SB 819. We were told that we should meet back in this area after the bill passed to take pictures with everyone.

What do you mean, after the bill is passed?

So, we went upstairs, to watch the bill be voted on/through. First, Senator Eddie Lucio, Jr., who has been instrumental in every legislative action we’ve been a part of, had an amendment to announce on the floor – in honor of Jamie and her family, the SB 819 would be known as the Jamie Schanbaum Act! He read a beautiful speech about meeting Jamie and his relationship with the Silva family (Note – Silva is mom’s maiden name and our Silva family is based in Brownsville, Texas). We had talked about Senator Lucio intention to name the bill after Jamie, and we all believed that it would happen, but, as Benjamin Linus said to John Locke on LOST recently, “It’s one thing to believe something will happen, but quite another to actually see it happen.” [This is what happens when you see every episode of LOST multiple times…]. So, the Jamie Schanbaum Act (formerly Senate Bill 819) passed with a vote of 29-1. Now, its onto the House, where Texas’ many representatives will ultimately decide whether the Jamie Schanbaum Act becomes law.

Everyone there was moved; some people were teary-eyed. Jamie’s friends Michelle and Sarah were in attendance; Roni was roving throughout the gallery, taking pictures (as I said, she’s quite good, and you know I wouldn’t say that unless it was true); Uncle Joe and Aunt Cindy were there with their children Sara (soon-to-be graduate of UT-Austin) and Chris (soon-to-be student at UT-Austin), our “cousin” Letty… ok lots of people were there. As for me, I was looking around and smiling at everyone I could smile at. Then I caught Senator Davis’ eye, and she was smiling and doing an “air clap”. So, thinking this was my signal to applaud (despite the fact that a full 20 seconds of silence had transpired since the vote was read), so I started to clap loudly… probably about 7 claps. As it turned out, I waited too long; Lt. Gov. Dewhurst had already begun speaking again, and he stopped short when I started clapping. I immediately stopped clapping. He looked around the Senate chamber, trying to find the offending clapper like he was trying to locate a wayward bird that flew into the room. No one spoke, and I meekly raised my hand and stood up a bit to identify myself. “We will have order in the gallery!”

I’m an idiot.

We went from there to congratulate the senators on passing the bill… either that, or they came to congratulate us on the bill. Either way, we met Senator Lucio, Senator Davis and Senator Florence Shapiro and took some pictures. We all felt pretty great about what had transpired. It was just a general love fest... Funny story, Senator Shapiro, back in the day, taught several of my uncles at Richardson High School. She’s also the mother-in-law of Rabbi Brian Strauss who came to meet with us in the hospital a few weeks earlier. You see, it’s all coming together.

In conclusion, we’re one step further to preventing this disease from wreaking havoc on people’s lives. We’ll let everyone know when the bill, er… the Jamie Schanbaum Act, is going to committee or going to a vote in the House. Thank you all for everything… I don’t think this would have happened without your support.

Friday 9am - Texas Meningitis Day

The only reason we were in Austin in the first place was to be recognized on the Senate Floor when Senator Eddie Lucio, Jr. put forth his resolution declaring April 25 as Texas Meningitis Day. Why April 25th? Because that’s also World Meningitis Day. In fact, it was the first World Meningitis Day and first Texas Meningitis Day on Saturday. As I mentioned in Part 1, Nancy Day and Maureen Moore were there to represent their families in the same way that we were representing Jamie. Senator Lucio read a beautiful speech about his meeting Jamie and provided some important details about the effects of meningitis. Not knowing what to expect, I thought his words were particularly touching. I’m so grateful to Senator Lucio and his staff – every legislative door we’ve walked through, they’ve opened. Then, after Senator Lucio introduced us, we shook some hands and took some pictures. We met Senator Zaffarini, who chaired the Higher Education Committee that we provided statements to a week earlier, and Senators Ellis and Duell as well as Lt. Governor Dewhurst (an hour later, he’d give me the Death Stare for applauding the passage of the Jamie Schanbaum Act… whoops).

Our hope with recognizing April 25 as Texas Meningitis Day is part of our larger effort to make more people aware of the disease, because people can’t prevent something that they don’t know much about… as we learned earlier this year. The Jamie Schanbaum Act and Texas Meningitis Day are just the beginning for us, and we’ll have many more events in the future to inform people about the disease as well as recognize Jamie, her recovery and tremendous story.

So, that takes care of all of Friday’s fun. I’ll try to add pictures later in the next few days.