Monday, August 24, 2009

8/25 - Governor Perry signs the Jamie Schanbaum Act into law

Welcome to the 100th Post on the Jamie Blog!!! Thank you all for following Jamie's (and our) story over these past few months. We are lucky to have been joined on this journey by all of our friends and family, both new and old. We've been through a lot and there's a long road ahead of us, so I hope you all don't go anywhere!

Now that that's said, there are many things that we'll need to cover in the next few posts (Jamie's new prosthetic legs; creating The Jamie Group, Inc. and our application for 501(c)(3) status; fundraising events in Austin (11/12) and in Dallas (11/7); Jamie getting back into school; the Happy Hookers tailgaters donating the proceeds from the Texas Tech game to Jamie; Jamie generally being awesome...) and I'm happy to say that Jamie will be helping me write blog posts in the future. However, this post is all about our latest trip to the state capitol for the (honorary) signing of the Jamie Schanbaum Act by Governor Rick Perry.

At 4:45, Gov. Perry came into his public reception room, where Jamie, me, KC, Roni, mom and Papa Gene were waiting. Before going forward, I should list some of the other attendees that helped make the law a reality, including: (1) Maureen Moore, who, along with Anna Dragsbaeck are part of the Houston Immunization Group that helped and pushed us to get this bill passed. Sometimes, I feel like Anna/Maureen and Mom/me are in a competition to see who can thank the other ones the most. (2) Joan Vasbinder, who also testified before the higher education committee along with mom, me and Anna Dragsbaeck; she lost her son to meningitis three years ago. (3) Sen. Wendy Davis, who authored Senate Bill 819, which is the original version of the law before it stalled in the house before being attached to a related house bill. (4) Louie Sanchez, who will soon be Sen. Eddie Lucio, Jr.'s chief of staff. Sen. Lucio is the man who helped us get in touch with Sen. Davis in the first place; mom knows him from back in Brownsville where she was queen. Louie was there on behalf of the Senator, who wasn't able to attend, but he's been so helpful on his own that we'd have wanted him in the picture anyway. (5) Rep. Donna Howard: She sponsored SB 819 in the house, where it unfortunately stalled and nearly died due to politics related to the voter ID laws, until...(6) Rep. Patrick Rose: who, along with being a former law school classmate of mine, is the Representative that amended one of his similarly themed bills to include the meningitis immunization legislation... and THAT is how a law is made!

So, anyway, Rick Perry came into the reception room to meet all the people who helped make this bill a reality, but if you ask me, he came to talk to Jamie. He probably talked with us for 10 minutes but it simultaneously felt like a brief moment and an eternity. He mentioned that he saw Jamie's recent story in the Daily Texan (which I CAN'T believe I've failed to mention so far...). Jamie commented on the Governor's tie, which was red with flying elephants on it. He said he thought it looked pretty cool. We agreed. Then, after the signing was over and we all took pictures and smiled for the KEYE cameras that were there (more on that below), he talked to Jamie some more, this time on a more serious note: he talked about the importance of giving back to your community. Jamie told him that she wanted to help people overcome their disabilities... thanks to people like Bob and Kerri, she feels strongly that helping people is in her future... Gov. Perry focused on this when he talked with us, and he reminded us that he didn't always know he wanted to get into politics, but he found his calling: giving back to the community that gave so much to him... so here he is. Anyway, like we said, a very, very wonderful day.

Finally, its definitely worth noting that mom was able to convince the folks at the capitol to allow the KEYE cameras to film the signing... then mom and Jamie had another interview, this time on a much happier note than before. Click HERE to see the video and article on the KEYE website.

Thank you to everyone who helped make the Jamie Schanbaum Act a law in Texas. We're glad that so many people will be able to benefit from our situation. Thanks again to everyone who has followed our story from Seton to St. Joseph to St. David's to the capitol. We love you all.

Saturday, August 15, 2009

It's me, Jamie!

Hey viewers, it’s me Jamie and I’m here writing my first blog post. What a crazy wild ride I have been on and I am so glad to be home with friends and family. As you all may know, I have been in outpatient rehab at St. David’s. I have the best therapists to help me with walking and strengthening my hands to use in my daily basic activities. My physical therapist, Kerry, and I have been getting up and walking off of the parallel bars, and onto the walker. We are at the beginning, but as everyday goes on with my progress in physical therapy, I gain strong beliefs that I will be up and dancing in time for ACL. Then there is one-armed Bob. I am so lucky to have my occupational therapist, Bob, because we have a strong common ground that we can both relate to. It is a powerful thing to have someone like Bob to help me overcome my day-to-day struggles, when I know that he is one to understand my incapabilities. But with a team like Kerry and Bob, I know that nothing can stop me.

Now that summer is coming to an end, I am saying goodbye to my friends as they go on into their third year of college. I have to say that it was pretty convenient that when I was released from the hospital, all of my friends were back home for the summer to help maintain my sanity. Coming home from the hospital, I was filled with fear and nerves because I knew that I was coming home to a completely different life with new challenges. But as the summer went on, I began to feel like my challenges were only minimizing, as if I was heading back to normalcy.

I am also writing to thank all of you for your nonstop support and prayers. It’s pretty amazing to get support from people I wouldn’t expect to hear from, like people from Clint’s church down in Blanco, Texas, my old nurses from the Houston hospital, my sibling’s friends (including their families), strangers who only know me through TV news broadcastings, families all the way up into the depths of Amarillo, Texas, old teachers and friends from middle school and even elementary school. I also want to thank my Papa Gene because without him none of this would have been possible. The support is endless and I am eternally grateful. I know that there are many people out there that I’m not thanking in this post, but just know that I love you all and I’m so glad you’re with me on this journey, Without everything that you all have done for me, I wouldn’t be the same person as I am today and I thank you, for I am proud to be Jamie Schanbaum

Friday, August 7, 2009

8/7 - Jen Griffin comes to visit

STEPHEN COLBERT – “Tonight: I report on the state of racism in America. My guess: Alabama!”

I’m on my way to Alabama (literally writing this on the airplane), but I definitely need to update everyone on the happenings in Jamie-town lately. First of all, we’re getting close to start talking about upper extremity prosthetics. JP (for the uninitiated, Jamie Perrone from Hanger Prosthetics) will be coming by St. David’s during one of Jamie’s upcoming PT/OT sessions (its more fun to say P-TOT, but I digress, like usual) and we’ll be talking about the several options whereby Jamie will be able to grip things, including the Pro-Digits option that we’re all pretty jazzed about. Remember, the Pro-Digits are the battery powered option whereby Jamie will have individually articulating fingers… pretty neat, huh? I mean, we spoke with JP on Tuesday about this and the other options, and I’m happy to report that we are getting access to technology that is so new that, even though Hanger is literally creating and advancing this technology, there isn’t enough data to accurately answer “How long do these things last?” Of course, the answers to the question of “How much does this stuff cost?” are much clearer… More on that in subsequent posts… Jamie has also continued to become more and more independent. She is putting on eye makeup on her own, gripping lots of things in her right hand (the good one she had surgery on most recently), wearing her legs more and more and generally being awesome. This is, of course, awesome. She learned to eat chips on her own too… this is huge… imagine feeding someone tortilla chips with salsa one at a time… yeah… I swear, chips + salsa is Jamie’s favorite food, after tomatoes.

Also, Jamie’s new wheelchair is almost complete. Willy the Wheelchair Guy came to Jamie’s PTOT session on Monday and delivered the wheels that we wanted for Jamie’s new chair… that’s not really the most exciting news in the world, but it did happen, so there you go. Also, Bob, Jamie’s OT guy, has some cool ideas about getting Jamie on a bicycle again. The easiest way to do this is with a recumbent bike, which is where the cyclist sits in a chair and the pedals are located in front of, instead of underneath, the rider. Bob is a really cool guy. He used to coach and be a member of the US Para-Olympic cycling team (I think)… did I mention he has one arm? Yeah, he rules.

Also, Jamie’s new wheelchair is almost complete. Willy the Wheelchair Guy came to Jamie’s PTOT session on Monday and delivered the wheels that we wanted for Jamie’s new chair… that’s not really the most exciting news in the world, but it did happen, so there you go. Also, Bob, Jamie’s OT guy, has some cool ideas about getting Jamie on a bicycle again. The easiest way to do this is with a recumbent bike, which is where the cyclist sits in a chair and the pedals are located in front of, instead of underneath, the rider. Bob is a really cool guy. He used to coach and be a member of the US Para-Olympic cycling team (I think)… did I mention he has one arm? Yeah, he rules.

The main reason I feel so compelled to post though is because Jennifer Griffin came to visit Jamie and the rest of us on Monday. You probably remember Jen’s story, but in brief, about 2.4 years ago, she contracted an infection (Strep A or Staph A) that caused a full on infection, and the subsequent complications resulted in the amputation of her legs below her knees and the removal of all of her fingers. [Remember? Her blog is right over there รจ It’s called “Get Well Jen” – SPOILER ALERT – she’s doing great!] So, of all the people who try to sympathize with Jamie, only a very, very few can truly understand what Jamie is going through, what she has gone through and what she will go through. Jen is one of them… one of they…? Anyway… I can’t possibly express (I can) how much I appreciate Jen’s willingness and eagerness to be a part of Jamie’s life. She’s the one who gave Jamie the tool she uses to apply mascara and eyeliner. This is the second time that Jen has come to visit. The first was while we were in the hospital in Houston, when Jamie was mostly bedridden, so a lot has changed for the better. Jen came with us to the PTOT appointments on Monday and was pretty impressed with Jamie’s walking. Jen also showed off her cool legs (the heel has a button that adjust her heel angle to allow her prosthetic feet to fit into shoes with heels). Really, the coolest parts of Jen’s visit are those little back-and-forths between her and Jamie. “So, Jen, how do you do this?” “Jen, what can/can’t you do now?” That sort of thing. Also, I should mention that Jen got a present at the OT session. Bob brought Jamie an extendible wand that has a strong magnet at the end. This is pretty useful ordinarily, but super useful when Jamie needs to get something far away (remote, phone [once we put a magnetic strip on it]) but isn’t wearing her legs. Bob gave Jen one too. They’re pretty cool. Before Jen left, we all went to dinner at a pretty good Mexican restaurant and a funny scene occurred… you know, when I first met Jen and her husband at a restaurant in Dallas in December, she told me that one of the most important things she ever learned was to not be afraid to ask people for assistance. At the time, I really didn’t understand what she meant, at least not to the extent that I understand now… So, I thought it was funny when it came time to eat, and, without asking for help, we were all prepared and eager to help Jen like she was a member of our family… which she is. We love her.

Finally, I wanted to say thanks to everyone for their continued concern, well-wishes, support and donations of time and money. We’ve continued to receive a steady stream of all of these and we remain touched. Thank you so much for following along, and, while our journey is far closer to the beginning than to the end, we’re happy to share our progress with you all.

Sorry for writing so much… I’m still on the plane… but I’m done now, so… bye.