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  • The J.A.M.I.E. Group » 5/20 – Legislative Update (last step!!), this time with pictures!
    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

    Original URL path: http://thejamiegroup.org/2009/05/520-legislative-update-last-step-this-time-with-pictures/ (2015-03-27)
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  • The J.A.M.I.E. Group » Press
    at St David s briefly Posted on May 8 2009 in Press 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 Read More NEED YOUR HELP again getting SB 819 heard by the House Higher Education Committee Posted on May 7 2009 in Press 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 Read More 5 4 Happily Reporting From Austin Posted on May 5 2009 in Press 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 Read More 5 2 Last Post from Houston Posted on May 2 2009 in Press 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 Read More

    Original URL path: http://thejamiegroup.org/category/press/page/8/ (2015-03-27)
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  • The J.A.M.I.E. Group » 5/18 – Aaron Behrens of Ghostland Observatory, and some cool things I didn't get to see
    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

    Original URL path: http://thejamiegroup.org/2009/05/518-aaron-behrens-of-ghostland-observatory-and-some-cool-things-i-didnt-get-to-see/ (2015-03-27)
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  • The J.A.M.I.E. Group » 5/14 – What goes around, comes around
    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 girl s 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

    Original URL path: http://thejamiegroup.org/2009/05/514-what-goes-around-comes-around/ (2015-03-27)
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  • The J.A.M.I.E. Group » A woefully insufficient ode to our mother
    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

    Original URL path: http://thejamiegroup.org/2009/05/a-woefully-insufficient-ode-to-our-mother/ (2015-03-27)
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  • The J.A.M.I.E. Group » 5/8 – Jamie's first week at St. David's, briefly
    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

    Original URL path: http://thejamiegroup.org/2009/05/58-jamies-first-week-at-st-davids-briefly/ (2015-03-27)
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  • The J.A.M.I.E. Group » NEED YOUR HELP (again) getting SB 819 heard by the House Higher Education Committee
    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

    Original URL path: http://thejamiegroup.org/2009/05/need-your-help-again-getting-sb-819-heard-by-the-house-higher-education-committee/ (2015-03-27)
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  • The J.A.M.I.E. Group » 5/4 – Happily Reporting From Austin!
    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

    Original URL path: http://thejamiegroup.org/2009/05/54-happily-reporting-from-austin/ (2015-03-27)
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