5/30 - A preview of mom's post, due out today!

Hey everyone! Things are going very well for us here in Austin. Mom is working on a post, and here's some of the things she could be working on...

- Maybe she's writing about Jamie being released from the hospital on Thursday... something nice about Jamie's first night in her own bed since November... a little feel good piece, ya know?

- Maybe she's writing about this new chapter in our recovery, where we're outpatients and have to drive Jamie back to St. Davids for her wound care, PT/OT and other doctors visits. You know, someone made an observation that now that Jamie is back home, mom will have to do all the work. That's true I guess, but Nurse Sake is there to help!

- Or, mom could be talking about Jamie's upcoming surgery on her right knee. Remember how those wounds aren't closing? The more troubling one is the result of a calcium buildup (an ulcer, actually... can it be both?) on her knee cap that prevents the wound from closing, thereby preventing Jamie from acclimating to her prosthetics. Dr. Mailman, who does our Wound Care, referred us to Dr. Malone, who's the bone doctor. He'll be doing the surgery. Its not a major procedure, but you know Jamie, and she'd rather be knocked out. There's more details, but I'll let mom handle it... afterall, this is supposed to be a preview.

- Actually, mom might be intending to talk about SB 819 - The Jamie Schanbaum Act. It passed through the legislature this week!!! I'll let mom handle the details, but all that's left is for Governor Perry to sign it... or rather, not veto it. We're cautiously optimistic. Did you see the piece in your local paper about how the Senate literally pulled the plug on the official clock at 11:58 so that they could submit all the bills by the midnight deadline?? Interesting, huh?

- It's kind of new news, but maybe mom will be talking about our upcoming trip back to Houston for Jamie's second flap procedure. Dr. Boutros is back from his Doctors Without Borders expedition to Vietnam, and he says we're ready to proceed. So, Houston.... we're coming back... for a few days, at least.

- Oh! Mom may talk about the new, customized wheelchair that DADS or DARS will be providing us with. It will have sparkly wheels.

- There's so many day to day things that mom's in charge of at the house... maybe she's going to write about Jamie's new routines... or the government agencies - DADS, DARS, etc. - that are hooking us up with things Jamie needs... Jamie's friends coming by to visit all the time...

Mom... write about some or all of these and I'll write about the rest! I'm on my way to Dallas now for a few days, talk to you all soon!

5/20 - Legislative Update (last step!!), this time with pictures!

Note: The pictures have nothing to do with the legislative update. I had promised to put pictures on the blog of Jamie standing for the first time, so... here you go.

First up, here's a picture of Jamie Peronne (not Peroni, like I had originally thought) squeezing one of Jamie's legs into her first prosthetic. This may be a good time to point out that the wounds on Jamie's knees that haven't been healing as fast as we'd like. Remember? there's some incidence of MRSA on both of her knee caps that's preventing two areas from closing. The pressure that comes naturally with wearing BK prosthetics would rub on these wounds, further preventing them from closing. Its unwise to go forward on the walking until these close. So we'll wait a few weeks and then get back to the walking. Also, here's a darling picture right here of Jamie getting situated in her walker. You didn't think she'd literally hit the ground running, did you? She has to walk, before she can run, and she's going to have to spend some time in a walker before she can walk. Now that I'm officially done with the cliches... Jamie was only able to stand for a minute or two, but from what I hear, it was a tear jerking experience for everyone present. She's apparently a bit taller than she was before the amputations. I've heard anything from 5'5" to 5'8". Considering she was 5'2" for most of her life, this is pretty neat. Finally, here's a picture of Jamie on two legs (with help from two prosthetics) for the first time since November. Such a wonderful moment for everyone that was there. I wish I was there too...

SMCA Jeans Day - You know what, I'm not sure I mentioned this, but St. Michael's - where Jamie went to school from her sophomore year to her senior year - had an event to raise money for Jamie. Jeans for Jamie was a huge success and raised over $2500 and for being comprised of only high school students, that's pretty amazing. Hey look! They brought her some flowers too. Thanks to JC Shakespeare, Coach Holly Talle, Jayne Palmer, Kaitlin Maloney (pictured) and everyone else at St. Michaels (not pictured) who made this event such a resounding success. We hope to bring Jamie by the school as soon as possible... oh wait, you're out of school... maybe next Fall.

Finally, the all too important legislative update - I'd like to thank one of our biggest supporters for providing me the text I'm copy/pasting below, which is clearer and more direct than I can ever plan to be. She knows who she is, and if she's ok with me naming her, I'm game, but... thanks! Here's where we are in this process and what you can do to help us get The Jamie Schanbaum Act over the finish line:

Okay, here is the latest on SB819 (Jamie Schanbaum Act)

SB819 passed TX House’s Higher Education Committee (it did not have a hearing). Now it has to go to the House’s Calendar Committee to get placed on the calendar for a vote by the full House (see Stage 5 of www.capitol.state.tx.us/BillLookup/BillStages.aspx?LegSess=81R&Bill=SB819

If it gets onto Calendar, and if it passes, it goes to the Governor’s desk!

What can you do as a citizen (and a voter!) of Texas:

We need the members of the Calendar Committee to hear from you and others that we want SB819 placed on the calendar so it can get voted on in the House! You would be surprised how effective a phone call from a voter is!

Of particular importance is anyone who knows Rep Brian McCall of Plano. As Chair of Calendar Committee, he carries a lot of weight on getting bills on. But other members are very important too: http://www.house.state.tx.us/committees/list81/050.htm

Although my state Rep Jessica Farrar is not on the Calendar Committee, I have contacted her each step of the way because like everything else, politics is “who you know” and I want her to know that I vote and I pay attention!

We are close to the finish line on this very important life-saving bill. Many of you know persons and families affected by this vaccine-preventable disease. Let’s finish this race to save lives of our young people. Pick up the phone and call. Just tell their staffer who you are, where you live and that you want SB819 (the meningitis bill) to get placed on the calendar. It’s quick and very effective!

Thank you all so much for your support (for us and with our legislative efforts). We're only a few days from the finish line, and so, if you've helped in the past or you haven't been able to contact your senator/representative, there's just one more phone call/email to make. So, let's get this thing passed! Thank you and check back often for updates.

5/18 - Aaron Behrens of Ghostland Observatory, and some cool things I didn't get to see

I'm reporting from Dallas today, and I'm happy to say that Jamie's reached a couple of major milestones during these past few days while I've been away. She stood in her prosthetics for the first time! Mom says that she's way taller now than she was before. She said Jamie was about 5' 8", and considering that Jamie was roughly 5' 2" before... well, that's pretty neat. Mom planned to write a post about this, but she's super busy with her normal mom duties, and Roni is graduating this Friday, so there's all sorts of related things going on. I will likely post pictures about this once I get them on my computer.

We also got some good news about Jamie's stay at St. David's - we may be leaving soon... like in two weeks soon. She's nowhere near being done with rehabilitation, but I think they said that we can work as an outpatient sometime soon. Also, we shouldn't get too much ahead of ourselves, because Jamie still has to go back to Houston for the flap procedure on her right hand, and some subsequent shaping procedures on both... There's still some hope that Dr. Boutros can come to Austin, but he's only here every so often, so we won't raise our expectations for that...

Anyway, the main reason I'm writing today, is because I want to put the finishing touches on an amazing week for Jamie by telling you about her visit by Aaron Behrens. He's the front man, lead vocalist and general dance machine in Ghostland Observatory. Together, he and Thomas Turner, are pioneering a genre of music that I haven't really seen before. You should check out their videos online sometime or check out their shows if you can. According to Jamie and her friends, they're indescribable. (Yeah, that's Ghostland with the UT Band... your eyes don't deceive you).



[For some background Jamie's insane, but totally justified, devotion to Ghostland Observatory, see our previous post, which is right below this one on the blog...] I told everyone that Thomas Turner was a really nice guy and down to earth, and Aaron Behrens was just as cool but in a completely different way. They're definitely a yin-yang kind of pairing, but that's usually the case with the best pairings.

So, of course, Aaron walked into Jamie's hospital room where Jamie's girlfriends were waiting for him. (Note to self: Start world-famous musical duo) He had a little surprise for Jamie as well: He brought an acoustic guitar, "if we'd be ok with him playing a few new songs he's been working on." Yes please! So, after hanging out with everyone for a little while, he breaks out his acoustic guitar and sings three songs for all of us. These are three songs that weren't released to the public and are very far from the typical ghostland observatory songs, and they were amazing. We were all blown away... some of us more than others (Sarah). I was able to record one on my camera but not the other two (I forgot that my new computer has a camera on it). The songs were touching and poignant. Aaron even commented after the first song that "You know, I didn't think about it at first, but that last song was pretty appropriate for the situation Jamie's in." Sharing these songs with us was so special, you know? Its a moment in time that Jamie and Aaron (and everyone else there) got to share.

One last note about our meeting with Aaron Behrens. If you don't know about Ghostland Observatory and you still haven't clicked on the links I've provided to their websites/videos, you need to know that Aaron is known for his energetic (kinetic?) dance moves. Just all over the place. Jamie is also all about dancing. She's a groove machine, and is going to have to relearn her old moves (in addition to developing some moves that can only be performed by someone with two BK amputations). Well, Aaron laid down the gauntlet for Jaime: a Dance-Off at ACL, on October 3, 2009, in the final hours before Jamie's 21st birthday. Aaron Behrens vs. Jamie Schanbaum! This is who she's up against:



Thank you Aaron and Thomas, you've done more for Jamie and for us than we could have imagined. We hope to see you around, and we'll see you for sure at the Whitewater Festival (if that's what its called) in July and at ACL in October!! You guys are amazing!

5/14 - What goes around, comes around

Yesterday marked 6 months since Jamie got sick. During these/those six months, everything has sort of folded-in on itself. We keep seeing the same story lines repeat themselves or the same issues or characters keep reappearing. So, here's a quick sampling of our week, with the theme of "What goes around, comes around" -

1) MRSA - This is an example of something that went around, and now has come back around... I think we got rid of this twice, but, when you're in the hospital constantly, its almost to be expected. Jamie has two wounds on her knee caps that aren't closing as quickly as her other wounds. This is an issue, but not too major of one. It will need to be monitored, especially as she gets fitted for her temporary prosthetics (should be standing for a few seconds on Friday!). Still, as her knee flexes and extends, the wound moves - and sort of looks like a winking eye - and, just like with Jamie's wounds on her butt back in Houston, these wounds just happen to be very inconveniently placed. Whereas the wounds on her butt were preventing her from doing as much physical therapy as we all would have liked, the wounds on her knees may end up slowing Jamie's first week or two on the prosthetics. Honestly, the prognosis on these wounds isn't that dire or negative, but I usually have low expectations when it comes to time tables, so this is just my outlook on the situation. No one has said that it would be too big of an issue, I'm just wondering about it...

2) Thomas Turner from Ghostland Observatory - For those who don't know about Ghostland Observatory (I'd like to send a Helllooo to Papa Gene, and a Hey Cowboy to Papa Zeke), they're a local (Austin) band comprised of two folks - Thomas Turner and Aaron Behrens. Their music is a mix of electronic/dance/funk/rock - or, as they describe it on their myspace page (click the link above if this is being read on the blog), their sound is like "A robot making love to a tree." And, as someone who has heard both, they're telling the truth. Jamie and her friends are huge fans and totally worship these guys. I've heard their music through Jamie, and I'm hooked too. They're really good - check out "Sad Sad City"; "Midnight Voyage"; or, my favorite "Piano Man".

Anyway, the day after Jamie got sick, she was supposed to attend her sixth Ghostland Observatory concert. As you know, she didn't get to leave the hospital, even though, in her heavily medicated mind, she thought she left. Well, as luck would have it (and as I'll explain in the book that's coming out about this whole situation), we were able to arrange for Thomas Turner (drums, synthesizer, backup vocals according to wikipedia) to come visit Jamie. [For this, I'm heavily indebted to Becky and Cater. Thank you both very much!]. Sorry about the over-reliance on parentheses... So, on Tuesday, Thomas Turner came to visit Jamie in the hospital. It was supposed to be a surprise, but I sort of blew it. Jamie and her friends loved meeting him. He was such a sincere and normal guy. He brought Jamie an LP that he signed with a really nice message to Jamie. Thomas Turner and the girls sat around chatting for a while, and mom, Uncle Zeke and Aunt Shirley took pictures and talked. The girls showed Thomas the scrapbook that they’d made for Jamie – its called “The Shit that Happened while Shit was Happening” – and, conveniently enough, it is riddled with Ghostland Observatory lyrics. Thomas stayed for a while, and really only had to leave because he had to pick up the kids (see? Normal.) Also, when we pointed out to him that Ghostland would be performing on Saturday, October 3, which is the night before Jamie’s 21^st birthday, he offered to arrange something special for Jamie and maybe a couple of friends, but more on that later. As I write this, on Thursday morning, Jamie’s room is likely buzzing with anticipation as the other half of Ghostland Observatory – Aaron Behrens – is coming to visit today. I’ll post pictures of that as soon as I can, but I’ll be in DFW until the beginning of next week, so who knows when that will be. Honestly, meeting Ghostland Observatory is a huge milestone in Jamie’s recovery. This is arguably her favorite band, and Jamie’s a music lover, so that means a lot. She’s also a dancer, and that’s what you do to Ghostland’s music. (Prior to my drive from Houston to Austin with Jamie, I’d never seen anyone dance for more than two hours in a row [without paying by the song], and Jamie accomplished that, with gusto). What a treat! I wonder – When we look back on this week in the future, will this be the week that Jamie stood for the first time since November 13, or will it be the week she met Ghostland Observatory? That’s how cool this is.

3) Seton Doctors are Back – Remember Dr. Morrison from Seton in Austin? He was Jamie’s main doctor, in addition to Dr. Bummer, who oversaw her care while Jamie was in ICU – for those three or four weeks where she was the sickest person in the hospital. He was our rock, really. We relied on him to keep us steady and to tell us the truth, but in a way we could handle. His demeanor (and sweaters) make him sort of like a Medical Mr. Rogers…. A Dr. Rogers, if you will. (Oh man, I’m on a roll today). Anyway, he was in St. David’s and I stopped him from going in an elevator – “Dr. Morrison! Hey! Come here, you’re not going to believe this!” – and brought him to see Jamie. Bless Jamie’s heart, but she didn’t really remember him at all, but Dr. Morrison was flabbergasted. He was very impressed by Jamie’s overall condition, especially with how much of her extremities we were able to keep. If you recall, the plastic surgeon at Seton recommended cutting Jamie’s hands at the wrist and her legs… we were told that “we’ll have to see when we get in there, but it could be above the knee or below the knee, who knows?” So, it was really neat to see Dr. Morrison again, and, on top of that, Jamie’s doctor at St. David’s, Dr. Heinze (pronounced like the ketchup – Heinz – then add an E), is considering an Infectious Disease consult regarding her knee wounds. That doctor? Dr. Bissett, Jamie’s infectious disease doctor from Seton. Crazy, huh?

Before I go, I wanted to let you all know that the House Higher Education Committee was canceled and will hopefully be rescheduled ASAP, but the prognosis for getting SB 819 passed has become more bleak. I know we've asked a lot, but if you could call your Representative (Again!) and implore them to put it back on the calendar, it would mean a lot to all of us. Thank you very much and we hope to see you all soon.

A woefully insufficient ode to our mother

Jamie is here working with Kristin (PT) and Cindy (OT) in a joint session. They’re working on her flexibility, building muscle in her core and just focusing on basic motions and movements. Jamie already had one OT session, WC (wound care) session and a representative from DADS (a government program that helps with home care assistance, among other things), and all that was before noon. Mom is taking a much deserved morning off. It’s very well deserved. I know everyone probably is impressed with mom and the amount of work she’s putting in, but I’m here more than anyone else besides her, and there is no way… no freaking way… that I could do mom’s job. (PS - Sorry about the picture, mom. Couldn't find a better one of you with Jamie at the time...)

Look, I slept here last night, and between the crummy cot (which, for the record, is way better than the couch at St. Joe’s and WAY better than the one in St. Joe’s ICU), the construction upstairs in the early morning (and late morning, and now… and, when I finish this post, there will still be construction above us going on), and the other hospital goings on and it makes for a pretty demanding situation. Jamie is becoming more and more able, but she is far from independent. Jamie can do a lot of things that take place in her bed, but she can’t leave the bed yet on her own. So, if she is thirsty, hungry, needs to barf, needs to go potty, someone (mom) is getting it for her. She does all this while coordinating with an alphabet soup of state agencies and programs – DARS, DADS, Medicare, Medicaid, Social Security, CLASS, etc. Then, before we know it, Jamie Peroni from Hanger is ready to visit and talk about the next step in getting Jamie’s prosthetics. Let me tell you something about the prosthetics industry: there is so much information out there and so many types of prosthetics, joints, sockets and feet; so many uses for the prosthetics; can they go in the water?; what’d the difference between the temporary and permanent ones?; how long for each? You’re getting the point, right? In mom’s spare time, she’s helping push legislation to require all freshman college students in on-campus dorms to prove that they’ve been immunized against meningitis. This has been a well documented and time-consuming effort on our part, and thanks to her and to you all, SB 819 (The Jamie Schanbaum Act) has made it all the way through Senate and is going before a House Committee this week. And you better believe that mom doesn’t ever want to leave Jamie alone, so mom has also become an expert at finding people to stand in for her when she is out doing everything else. And this “everything else” includes going to the grocery store for the house, dropping Roni off at school to be nice, cleaning the house (where we take care of two cats and a dog), helping arrange Roni’s graduation party, and then whatever else comes her way. She’s so caring and giving that even when she doesn’t have much more of herself to give, she is the first to raise her hand and be willing to help. [An example from yesterday: Sara our cousin had her windshield smashed pretty badly, and mom came to the rescue because our Aunt (mom’s sister) was in Brownsville and obviously couldn’t come help; helped her file a police report, clean up the smashed windshield and console Sara. Really, just a shitty situation, but mom didn’t ask any questions and knew that she had to go help. That’s just the person she is.]

Did I mention that the above paragraph describes the “ideal” situation, where nothing goes wrong… where there’s no bumps in the road… there aren’t any new infections or complications… no sudden changes of plans… no big and unnecessary dramas? Well, let me tell you: Something ALWAYS goes wrong; there are ALWAYS bumps in the road; there’s ALWAYS a new infection (today, it’s MRSA on her knee caps, AGAIN); there’s always unnecessary drama. And, mom is always there to handle it. It all comes to her and sits on her desk. Jamie has a slight change in medicine? That’s something mom needs to remember. Jamie meets with Jen Griffin or Mike Segal? Mom wants to be there for that too. Everything. And I mean EVERYTHING falls on mom’s desk and she deals with it all with a smile on her face (usually). There’s so much for her to deal with that I would completely understand if she just became robotic and went through the motions, but she’s not like that. She doesn’t want to know that Jamie is being given Lyrica, she wants to know why. She wants to know everything about everything. She’s amazing, and that’s the whole purpose of this post.

Yesterday was mother’s day, and I just don’t think it would be possible for us to ever articulate how much she means to us. It doesn’t seem fair, really. I mean, every year, every mother, regardless of what they do, gets one day in their honor. But for Patsy, she’s does so much for so many people this year and we owe her so much more than one day in her honor. For once, I’m at a loss for words. If you’re reading this, then you know that I can write up a storm, if I’m so inclined, but I don’t think I can find the words (if there are any) to describe how much we all owe to Patsy for what she’s done over the past 6 months. That paragraph I wrote (above, about what all she’s done for us) is woefully incomplete. It also paints an incomplete picture – just imagine doing more than you’ve ever done in a day, for someone you care more about than anyone else, then do it 24/7 (literally). As I said earlier, no one knows more about what mom does than I, and I know one thing: we couldn’t do this without her. She’s better than anyone we could ever ask for, and hopefully she forgives me for being a day late on posting this Mother’s Day letter.

We love you, Mom! Rest up well. There’s only a few more years left. :)

5/8 - Jamie's first week at St. David's, briefly

Finally, a post about the daily goings on here at St. David's in Austin. If I could describe the St. David's rehab unit in a few words, they might be: scheduled, punctual, detailed. Fun and different are also words that I'd use. If you're a frequent reader of the blog, then you know that Jamie is required to undergo three hours of treatment per day, which takes a physical toll on her, but I'm happy to report that she's handling the increased workload with a smile. It also helps that her friends and family have been visiting pretty regularly. So, just looking at yesterday's schedule (which appears to be pretty similar to today's schedule) she has OT from 9 to 10; she has Wound Care from 10:30 to 11:30 (or however long it takes); she has PT from 1 to 2; then, from 3 to 4, Jamie has 30 minutes of PT and 30 minutes of OT. She also meets with the Psychiatrist three times a week to deal with the trauma of what she's gone through. So, assuming Jamie doesn't have any visitors, her day is very busy.

Of course, Jamie's had visitors streaming in and out of this place. One visitor she's had a few times has been Jamie Peroni (JP) from Hanger Prosthetics. He came by on Monday to cast Jamie's legs for her prosthetics (see the picture to the right). Then he came on Wednesday with some sockets, based off of Monday's casts. On Wednesday, JP put both of the sockets on Jamie's legs to see how well they fit. The goal with the sockets is to evenly distribute Jamie's weight so that it her leg is not resting on the bottom of the socket. If I remember correctly, there are four spots where Jaime's leg comes into contact with the socket, and it will be easiest for Jamie to walk on them if the weight is distributed to these four pressure points evenly. Anyway, JP marked up these rough draft sockets and, today, he'll come back and check to see if the sockets are a perfect fit. I'm not sure what the next step is, but I will have an answer for you later today when JP comes.

As for her OT/PT routine, the kinds of exercises she's doing here in Austin are totally different than what she was doing in Houston. For example, during today's OT session, she did lots of exercises with weights while sitting in her chair. Most of her exercises are intended to strengthen her core muscles so she can balance while sitting for an indefinite period - she has to sit perfectly before she'll be able to stand... stand perfectly before walking... walk, jog, run, jump, dance... you get it. But I'm very enthused by the strength building aspects to Jamie's routine. Also, they're working on the hand dexterity. Today, Jamie and I played a couple of games of Connect Four (see the first picture, above). But even the basic exercises are tweaked and varied to make it interesting and challenging. Whereas Jamie completed her arm exercises in her chair today, yesterday, she was sitting on a bouncy ball to work on her balance. See?

Jamie and the rest of the family absolutely love the fact that our home base is here in Austin. If we need something or someone at the house, its literally only a mile away. It's awesome.

As you can see, I've finally got some pictures on the blog. Usually, its the blog readers that get all the Jamie pictures, but I'm about to add a TON of pictures to the facebook group. I'll probably post some of those pictures to this blog, but if you're reading this on the blog and you aren't on facebook yet (hi Papa Gene and Clint!), then you may be missing out on some fun pictures.

Finally, no update yet on whether SB 819 has been heard by the house. Thank you so much for all of your emails and phone calls to your state reps. Even though I didn’t ask you to email me once you’d contacted everyone in the Higher Education Committee, but a lot of you did and we’re very touched and grateful.

NEED YOUR HELP (again) getting SB 819 heard by the House Higher Education Committee

First - Thank you all for contacting your state senator about SB 819 (aka The Jamie Schanbaum Act). As you've probably read on this blog, SB 819 made it through the Senate, but now it needs to be voted upon by the house. But before a vote takes place, we need it to be scheduled for a hearing in front of the Higher Education Committee in the House. Therefore, we're going to need your help once again, and, like before, we'll be needing this assistance today (Thursday) if possible - apparently, the calendar is set on Friday and it doesn't look like there will be another chance for us to get this heard by a committee during this legislative session.

So that's the goal: Get a hearing scheduled with House Higher Education Committee before session ends... so... ASAP.

[Click the link above or go to http://www.house.state.tx.us/committees/list81/290.htm to see the members of this committee, then, click their picture to go to their web page and then look for the "Send Email" link on the right side of the page... click that link and send a short email or call... calling is easier, I think, but how ever you contact these reps is great with us!]

So, we'll need to contact the Representatives on the Committee and the Representative who is sponsoring the bill in the House (Garnet Coleman). So, in order, it appears that the people who can make this happen are (1) Rep. Dan Branch, from Highland Park, (2) Rep. Garnet Coleman, from Houston, (3) the other members of the Higher Education Committee and (4) any other Representative that you can contact about this.

Rep. Dan Branch - Highland Park/Uptown Area Dallas (this is most of my friends...)
Rep. Jaoquin Castro - San Antonio
Rep. Roberto Alonzo - Dallas
Rep. Leo Berman - Tyler
Rep. Ellen Cohen - Houston
Rep. Donna Howard - Austin
Rep. Brian McCall - Plano
Rep. Diane Patrick - Arlington
Rep. Patrick Rose - San Marcos/South Austin

I know that some of you reading this do indeed live in these areas, so PLEASE contact these individuals. You all know how important this is to us, and, on behalf of all of the family, thank you for taking a few minutes of your day to contact. Thank you so much for your efforts on Jamie's behalf. Please try to contact one or more of the above-listed folks in order to encourage them to schedule SB 819 for a hearing. Thank you very much for your time and support.

(At the bottom of the post is the letter I submitted along with SB 819, when it was being heard in the Senate Committee, that provides some information about Jamie, the bill and the disease)

About the Bill, Briefly - This bill will require incoming college freshmen (who live in on-campus dorms) to prove that they have been immunized against bacterial meningitis. If this legislation was in place two years ago, Jamie would not be wrapping up her 6th month in the hospital. Of course, this bill also has Opt Out language so that those families who are opposed to these types of vaccines are not forced to immunize their children against their wishes.

What you can do! - Please, please email or call one or more of the Representatives listed above to tell them (nicely) that you want to prevent this terrible disease from harming anyone else and that they should do whatever they can to ensure that SB 819 is scheduled for a hearing before the House committee ASAP. We need all the support we can get, and your voices are the only way to make sure that our state representatives know how important this bill is.

If you need to read some information on Jamie or the bill before sending, please use, edit or paraphrase the letter (below) if you need to. We really appreciate your help here, so thank you so very much. Need any other help with contacting these Representatives or with anything, you know how to get ahold of me. Thanks so much!

All our best,
Jamie, Patsy, Nick, KC, Roni and the rest of Jamie's dedicated family and friends.

------------------------------------------------
Jamie Ann Schanbaum is a lifelong Texan. She was born in Dallas on October 4, 1988 and recently began studying at The University of Texas at Austin to be a pharmacist. She is a charming, bright and funny young woman. Jamie loves to laugh, dance and play with her animals. If it weren’t for her extraordinary character and charitable personality, Jamie would have been just another college student in Austin. However, Jamie is not an ordinary young woman. As a high school student, she woke up at 5 am many times to help serve breakfast at one of Austin’s soup kitchens. She taught campers how to SCUBA dive at Camp Longhorn. She truly radiates compassion and love. Jamie makes her friends’ lives better and their burdens lighter. She is one of those individuals that you meet once and remember for the rest of your life. Unfortunately, on November 13, 2008, that life was very nearly cut short when she contracted a bacterial infection, specifically, the meningococcus bacteria. Even though she survived, the life that she enjoyed ended on that day due to an easily preventable infection.

Typically, the meningococcus bacteria manifest itself in one of two ways. The more common type of infection is called meningococcal meningitis (commonly referred to as simply “Meningitis”); this is the more typical manifestation of the disease. Jamie contracted the less common and more violent version of the bacteria, Meningococcemia. Instead of attacking Jamie’s nervous system, as happens in most meningococcus cases, the meningococcus bacteria infected Jamie’s blood, which typically leads to death or, for the luckiest individuals who contract this disease, only amputations. Despite quick actions and attentive care provided by her doctors at Seton Medical Center, the infection took hold almost immediately. There was little that her doctors could do once the infection had set in. On February 6, 2009, doctors at St. Joseph Hospital in Houston amputated both of Jamie’s legs below her knees and removed the most of her digits on her hands (luckily, parts of both of her thumbs and two of her fingers remain). Jamie’s courage throughout this fight cannot be understated. She gritted her teeth and faced this challenge head-on, but there is a huge difference between Jamie recovering from this devastating illness and not having to have faced it at all. If Jaime had been immunized from the meningococcus bacteria with a readily available vaccine, this heartbreaking situation could have been avoided. Our efforts on Jamie’s behalf are intended to help others avoid the pain and trauma that Jamie has had to experience. Jamie will battle the effects of this disease for the rest of her life and it is important to her that she is able to show her friends, family and those around her that this dreadful situation could have been avoided.

Jamie carries on with the support of her mother, Patsy, and her siblings, Nicholas, KC and Roni. Jamie is constantly talking about being back at school, and, finally, after being in the hospital for almost six months, she sees that her goal is almost realized. She still has several months of painstaking rehabilitation ahead of her, but with the help of her family and friends, she will endure her trials and surpass all expectations as she’s done in the past. As was noted earlier, this young woman’s spirit is bright and pure. Jaime’s family has tracked her amazing progress on a blog so that her supporters can follow along. They welcome everyone to follow Jamie’s story at the URL at the bottom of this page. Jamie’s is a story of perseverance and character; its lessons are universally applicable. We simply wish that Jamie did not have to endure this pain so that others can avoid it.

Jamieschanbaumupdatesandsupport.blogspot.com

5/4 - Happily Reporting From Austin!

Even though I am technically in Dallas (OK, I’m in Fort Worth), its time to update Jamie’s blog on her travels from yesterday. I’m happy to report that Jamie is safe and sound in Austin at St. David’s hospital! We woke up early on Sunday morning because Jamie’s team in Houston wanted to change her dressings one last time. So, Michael and the wound care team came to Jamie’s room at 8am, to wrap her legs, her right hand and her tush one last time. Honestly, its remarkable how far we’ve come since we first got to Houston; Jaime’s wounds are practically non-existent compared to how they originally looked. Really, most of the wounds are gone, even on the tush. Pretty nice. Jamie’s left hand is completely unwrapped now. She uses it more and more every day. I’m still pretty impressed with how great it looks. We won’t know much about how well she’ll ultimately be able to use that hand, but considering (1) it’s the bad hand, (2) Dr. Boutros was shocked that Jamie could hold a pen, and (3) it’s unshaped [meaning that it still has a few surgeries to go] – I’m pretty pleased with it.

Of course, leaving St. Joseph means a lot of things. It means that mom arranged for there to be a Thank You Lunch for everyone and I’ll be sure to post about it once I upload the pictures from mom’s (formerly, my) camera. We have a ton of wonderful pictures. More importantly, it also means that each of Jamie’s doctors approved of her leaving the hospital. Infectious Disease, Ortho (wait, Ortho is a word, but Orthodics isn’t? sigh…), Dr. Thai (can’t remember what he’s, you know, the doctor of)… anyway, the point I’m making here is that all of her doctors found her to be OK to leave the hospital. That’s a big deal to us, and even though we drove Jamie to Austin so she could go to her third hospital in 6 months, her doctors basically said that she was well enough to go home! (OK, they may not have said that, but we did it anyway! Loved the puppy and kitty reunion. Sake [like the drink], our beautiful dog and friend, loved it more)

I really wish I was in Austin today so I could be with mom and Jamie during the first day at St. David’s. Her schedule sounds pretty brutal; brutal, but understandably necessary. The plan, generally, is for Jamie to undergo three non-consecutive hours of therapy per day. For Monday, the first session is an evaluative session where her physical therapist will work Jamie through a series of exercises to see where her starting point is. Then, she’ll have an hour-long PT session (physical therapy, if you don’t remember) and then an hour long OT session (occupational therapy) with her OT therapist. That last clause of the sentence – “OT session with her OT therapist” – may seem redundant, but if I learned anything from my two hours at St. David’s yesterday, it’s that Jamie has ONE physical therapist running point for Jamie; same for the Occupational Therapists. That’s a change from St. Joseph’s, where Jamie was under the care of a team of wound care, PT, OT folks (MAN, I wish I had that picture with all of these people in their red shirts at the luncheon… I’ll try to add it later, you’ll see what I mean, then). Anyway, that’s one of the many changes we’ve seen at St. David’s, and we’re happy to report that most of them – lots more TV channels, cot for mom to sleep on if she needs it, pretty thorough food menu – are positive changes.

Anywho, I’m off to take care of some business - I’m going to start packing for my move to Austin… (what? I didn’t tell you I was moving to Austin? Well, ever since the economy laid me off from my previous job in March, I’ve… [WHAT!? I didn’t tell you that either? Well, then it looks like we have a lot of catching up to do when you get to Austin to see Jamie!]) Jamie can’t wait to see you all, so we hope to see you all soon!

5/2 - Last Post from Houston!

Well, the day has finally come! We’re leaving tomorrow (Sunday) and will be back in Austin sometime tomorrow afternoon. Jamie, Michelle and I will be driving in my car; mom will drive Jamie’s explorer. Earlier this week, Michael taught us how to put Jamie in my car, and it isn’t too hard. So, tomorrow, we’ll pack my car up with our entire hospital room and hit the road. It’s been a long time coming, and this week, like all the others, has been a busy week. Jamie has had her feeding tube out since the beginning of the week. It was supposed to be pulled out really easily, but it got stuck on something, so it had to be removed surgically, which Jamie liked a whole lot. Definitely the shortest surgery Jamie’s ever had. Earlier in the week, we had thought that we’d be able to leave in the middle of this past week. Then, we had to have the feeding tube removed surgically, so plans changed and now we’re leaving on Sunday. We’ll check in on Sunday and be ready to get rehab started on Monday with the weekday schedule. We are so excited for the change of scenery and routine.

I’ll bust out a proper good-bye post sometime in the next day or so. We have met so many wonderful people here in Houston… I mean, we’ve been here for five months… we had a nice little good bye luncheon for the folks at St. Joe’s who have been instrumental in our recovery and I’ll write about it soon. I’ve been slacking on the posts of late… I’ll pick up the pace. Promise.

Before I split for now, I need to say thank you to the good folks at Shelton, Jaime’s school in Dallas. They had a Jean Day the other day to raise money for Jamie. I wrote about this before. It was a massive success and we’re overwhelmed by their efforts. Thank you all so much, Jamie and the family really appreciate it. When Jamie’s up and running again, we’ll come on up and say thanks in person!

Sorry about the short update, but, seeing as we’re leaving tomorrow, I need to help pack up the car and we all need to get a good night’s sleep because tomorrow will be a long day and we’re all pretty tired right now. I can’t believe the amount of stuff we’ve accumulated over the past 5 1/2 months. It’s a lot of stuff. A lot of protein bars and DVDs. I couldn’t be happier to pack everything up. Now, it’s onto the next phase... Austin… rehab... prosthetics…. zzzz….