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  • The J.A.M.I.E. Group » 5/2 – Last Post from Houston!
    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

    Original URL path: http://thejamiegroup.org/2009/05/52-last-post-from-houston/ (2015-03-27)
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  • The J.A.M.I.E. Group » Massive and Great Update – Part 3 – Prosthetists Visit and Overall Medical Upadte
    everything was imbued with some sort of positive momentum Everything was great So when JP visited Jamie Dr Smith and Michael unwrapped Jamie s legs and showed them how awesome the looked Skin grafts were taking Wounds were closing oh that s right there were those two wounds on the knee caps that weren t closing at the time but are apparently closing now Everything was great Dr Smith and Michael knew that Jamie was in pretty excellent shape so it s not a surprise that JP felt the same way Sort of how Jamie and I feel when we watch Lord of the Rings Return of the King with someone who s never seen the film before Yeah I know this is pretty awesome You obviously feel the same way right So JP liked what he saw The legs were shrinking too according to plan JP brought some Silver Socks the Silver indicates that it has some magical anti infection stuff to it that will help compress Jamie s stumps so they could be fitted into the prosthetics This raises the question What prosthetics Are they temporary prosthetics or permanent ones The answer to that is that the first set will be temporary but how temporary And will there be two sets of temporary prosthetics Lots of questions lay lie ahead of us We re getting more familiar with the prosthetics world and we ve got a lot to learn but for now I can t relay any precise information about what kinds she ll be getting I m familiar with the options she has before her but it wouldn t make much sense for me to tell you about the 12 possible scenarios ahead of Jamie until we know which one we ll choose Jamie and JP got along very well I think this is going to work out pretty well Then on Wednesday folks from Hanger in Houston came to visit They brought more Shrinkers for Jamie clearly if they re used to shrink Jamie s legs then we ll be needing a smaller set of socks pretty soon and yeah lots of talking about prosthetics honestly I don t remember much else from this period of time so please forgive me Hanger Good Moving on Overall Medical Update So much stuff has been happening in Jamie s world that I haven t felt the need to write a post about Jamie s general medical condition That s such a good thing Here we go and once again forgive me for skipping some areas Jamie s numbers look wonderful Protein levels are supposed to be between 20 and 40 whatevers and Jamie has been within that range for about a month She broke through at 25 then 35 whatevers Then she slipped down to 24 and is now at about 26 Protein issues Looking good She s been off the catheter for over a week probably two weeks and things are going smoothly now Bladder control is

    Original URL path: http://thejamiegroup.org/2009/04/massive-and-great-update-part-3-prosthetists-visit-and-overall-medical-upadte/ (2015-03-27)
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  • The J.A.M.I.E. Group » Massive and Great Update – Part 2(b) – Jen Griffin Visits!
    s losing my hands that really sucks I mean she s right And even though I ve been telling her for a while that she ll be able to do nearly everything she used to be able to do but she ll just be terrible for a little while it s not a very big logical leap from I lost most of all of my fingers to I can t do anything for myself ever again Note Jen and Jamie met the day before Dr Boutros came and removed the pins from her left hand and before Jamie held a pen in her un shaped hand unassisted When she met Jen she hadn t had this earth shattering revelation yet Even though I d informed Jamie about the extent of Jen s condition I don t think Jamie was mentally prepared for what she saw when Jen entered the room an apparently normal attractive happily married woman who was able to do anything she wanted to do didn t appear to be slowed by her prosthetics and had a really good outlook on life In all honesty we d been waiting to meet with Jen Griffin since before we ever left Austin Jamie and Jen bonded instantly Jamie appeared pretty awestruck at all of the things that Jen sans fingers was able to do She opened her purse got stuff out of it used the phone text messaged people she was normal Sure she used the cuffs when she needed to hold silverware to eat and there were a few other things she needs assistance with but Jamie was blown away Jen told Jamie about all of the tricks of the trade which are too numerous to list completely here though a few of them include finding a good seamstress to change your clothes from buttons zippers to Velcro snaps also get a touch screen phone etc We talked mainly about Jen s experiences in those first few months after she got out of the hospital What didn t you like about your prosthetics How long did it take to do this or that What do you wish you knew going into your fittings for prosthetics you know stuff like that They had some alone time too I don t know what they talked about but Jamie needs to ask questions of people that actually know the answers Not questions about how to diagnose an illness but how to deal with overcoming it Not how to fit a person for prosthetics but how to walk on them tyle We can have the most trained specialists in the world but they won t know how to cope with this situation on a personal level This is the bond that I was hoping would be forged out of this meeting so I m glad they really hit it off Nick Griffin is pretty cool too He s from Australia and everyone likes that After the meeting Jamie was just totally enamored with

    Original URL path: http://thejamiegroup.org/2009/04/massive-and-great-update-part-2b-jen-griffin-visits/ (2015-03-27)
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  • The J.A.M.I.E. Group » Massive and Great Update – Part 2(a) – Dr. Boutros Tells Us the Good News
    that the pin had gone through two bones spanning the length of her palm Yikes we both said Then he pulled the other one out some pain but no tears or argument Very easy Makes me optimistic that other things removing the feeding tube as I ll discuss in a later section will be as painless and as easy You don t want to keep these pins do you Jamie and I answered No why would we want to do that Boutros said I don t know some people just want to hold onto these things He threw each of the four inch pins in the medical trash bin An hour later when we called mom she asks Did you keep the pins So Dr Boutros asks Jamie to move her left thumb again Jamie starts to wiggle that thing all over the place She is beaming So is Dr Boutros I start beaming too since that s apparently the thing to do Dr Boutros is very obviously pleased with his work and he asks Jamie to hold a pen with her thumb He gives her his pen a big expensive looking thing Jamie fumbles with it and it falls out Unphased I give her one of my normal pens and she holds it in her hand just fine We re all smiling ear to ear Just a big love fest I can t even begin to tell you how great this is Dr Butros begins For Jamie to be holding a pen with her left hand is incredible I haven t even done any shaping on this hand This is amazing I couldn t have asked for anything this good to happen He s clearly thinking because he has his hand on his chin He tells us that given how great this turned out we may have a lot more options than he previously anticipated We ask what he s thinking about and he tells us that Oh I m not sure we need to discuss it right now very exciting very exciting I m pretty curious and frankly we d received enough good news for now he can save this for later if he wants Then Dr Boutros looks at Jamie s right hand He takes a look at her hand the graft on her right thumb that has almost fully taken then takes a look at her two remaining digits Jamie s index and middle fingers have some slight length remaining and part of her bone is sticking out of the top of each Dr Boutros takes a step back and says everything looks great Then he starts talking about something else and got interrupted by Jamie who asked the only question that remained Now what He s smiling again Cheshire cat sized Now you get to go home What do you mean go home Jamie and I almost say in unison According to Dr Boutros Jamie s hand right hand is perfectly healthy enough for her

    Original URL path: http://thejamiegroup.org/2009/04/massive-and-great-update-part-2a-dr-boutros-tells-us-the-good-news/ (2015-03-27)
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  • The J.A.M.I.E. Group » Press
    Shelton Read More 4 18 Big Update Testifying Mom s TV Interview Jamie s Awesome Progress Posted on Apr 18 2009 in Press I m going to be adding more links to this post shortly but I wanted to get it up first Today is April 17 2009 and so much has happened lately that it may take me a little while to get all the information across I ll use headings where appropriate so people can follow along well Read More Testifying for Senate Bill 819 at the Capitol tomorrow watch it Posted on Apr 15 2009 in Press Tomorrow Wednesday mom and I will be testifying in support of Senate Bill 819 which if it eventually gets passed would require college freshmen to be immunized if they live in on campus dorms We re very happy that Senator Wendy Davis Fort Worth is sponsoring such an important piece of legislation I don t think I need Read More 4 13 Mom and Nick s Excellent Adventure Part 2 Posted on Apr 13 2009 in Press OK sorry to leave everyone who was reading this blog between the hours of 11pm Sunday and 11am Monday but I found my journal so I m ready to finish our story from last week Mom s and my I can t decide if that s grammatically correct last errand was to meet with a prosthetist at Hanger Prosthetics Read More 4 13 Happy Easter Happy Passover God Bless U Posted on Apr 13 2009 in Press It s been a pretty exciting and grueling week for my little Jamie but it s all good stuff Let me first start by saying last weekend was tough With Jamie s IV gone there was no way to receive her IV pain med that included

    Original URL path: http://thejamiegroup.org/category/press/page/9/ (2015-03-27)
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  • The J.A.M.I.E. Group » Massive and Great Update – Part 1 – Overview and Friday's Trip to the Capitol
    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

    Original URL path: http://thejamiegroup.org/2009/04/massive-and-great-update-part-1-overview-and-fridays-trip-to-the-capitol/ (2015-03-27)
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  • The J.A.M.I.E. Group » NEED YOUR HELP – Re: SB 819 – Please contact your Texas Senator to ask for their support!
    http budurl com arxk to see which Senator represents you to tell them nicely that you want to prevent this terrible disease from harming anyone else and that they should support SB 819 We need all the support we can get and your voices are the only way to reach these Senators 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 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

    Original URL path: http://thejamiegroup.org/2009/04/need-your-help-re-sb-819-please-contact-your-texas-senator-to-ask-for-their-support/ (2015-03-27)
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  • The J.A.M.I.E. Group » Shelton School Blue Jean Day for Jamie – Thurs April 23
    students at Shelton School We truly want to thank them for their support 2 BLUE JEAN DAY on Thursday April 23 for All Students and Staff Donation of 5 00 to participate check payable to Shelton School or cash to division offices Jeans must be worn with an approved Shelton t shirt and tennis shoes No cutoffs patches or torn jeans please If the student does not participate the uniform and approved shoes must be worn This Blue Jean Day will be to honor a former Shelton student who has a love of life and is fighting very hard in a Houston hospital Donations will go to the family of Jamie Schanbaum to assist them in her medical expenses Jamies story she thought she had a bad case of the flu when she went to the emergency room on November 17 2008 Much to everyones dismay she was diagnosed with Meningococcemia a bacteria which wreaks havoc on the bloodstream The bacteria had spread throughout her body and was restricting blood flow to her extremities Unfortunately the impaired circulation to her hands and feet caused gangrene and on February 6 Jamie had surgery to remove most of her fingers and both legs below the knees Jamie has many surgeries to be performed on her legs and hands but she is a fighter Jamie will be fitted with prosthetics soon and will head back to school at UT where she will complete her studies in pharmacology The link below is a news report on Jamie Some pictures are disturbing but every parent should know of the dangers when a child does not receive the meningitis vaccine Shelton School has not allowed the students to view this links content http www keyetv com mediacenter local aspx videoid 22260 keye dayport com navCatId 5

    Original URL path: http://thejamiegroup.org/2009/04/shelton-school-blue-jean-day-for-jamie-thurs-april-23/ (2015-03-27)
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