The Senate Bill went through Congress three times before it successfully passed with the help of Jamie Schanbaum and her amazing story. In early summer of 2009, shortly after Jamie was released from the hospital, the entire Schanbaum family was invited to meet with Rick Perry as he officially signed what is now and forever known as The Jamie Schanbaum Act.
Time for another update. This one is about Jaime doing physical therapy and some new tidbits on her physical recovery. She’s picked up the pace on her physical therapy regimen. I’m very happy to report that Jamie has been working very hard at PT at home. She’s scheduled for only three hours of physical therapy a week (and three hours of occupational therapy a week, and some wound care too), which really isn’t that much. Even though the outpatient PT and OT folks are supposed to be hard-asses, Jamie needs to keep up the hard work on her own. She’s been keeping up her part of the bargain in this regard and has been doing PT twice a day. Just for fun, here's a picture of Jaime doing physical therapy at St. David's. Fun stuff, huh?
Here’s an example about how the little things make the biggest difference in Jamie’s recovery. As you know, we’ve spoken at length about the wounds on Jamie’s kneecaps that were not closing well. Since her surgery a few weeks back to take care of her problematic right kneecap, both kneecaps began healing and, we’re happy to announce that Jamie has been given the OK to wear her prosthetics by her PT/OT folks at St. David’s and JP (Jamie Peronne, from Hanger Prosthetics, for the uninitiated). She needs to build her tolerance to the weight of the prosthetics. She’ll be wearing them while in the wheelchair, and she’ll use in order to balance herself when transitioning from the chair to the couch (or elsewhere). Even though she can’t stand on her own yet, I helped her from her stand up yesterday out of the wheelchair. It was very cool to help her stand, and I’m looking forward to the day where she can stand next to me without
my supporting her… did I mention how tall she is? She’s at least 5’ 7” but may be as tall as 5’ 9”. On a related note, I’m getting shorter.
But there’s more to love about wearing the prosthetics. Finally (Finally!) she can put her feet on the ground to support herself. She hadn’t been able to stabilize herself on the ground since November. She can push herself with her feet and propel the wheelchair a few feet. When she’s changing the TV channel (thank goodness she can do this on her own, along with use her phone), she can put the remote on her thigh and push down on the buttons without her leg giving way. She can rest her feet on the coffee table… just lots of things she can do now, and she isn’t even walking yet. I’m very happy with what I’m seeing on this front. More updates later.
Once again, sorry that it’s been so long since the last time I posted on the blog. Every time I feel like there’s a break in the action, a new project arises that requires most of my attention for the day. For example, this week, mom flew to Dallas to help me move… because nothing says “Moving Assistance” like a 53 year old mother of four. (Just kidding, she was a lot of help!) Just like any other move, there are still boxes sitting around the house, but it will get done today, I hope. I just leaned over to mom and said, “We need to get this done, today!” (FYI - I’m sitting with mom at the TISWG meeting in Austin. That stands for Texas Immunization Stakeholder Working Group… we’re following up on The Jamie Schanbaum Act to see what we can do to help advance this issue in the state) So, starting today, I’m going to be writing up a storm. I know I’ve said this before, but this time I mean it!
As you probably aren’t aware, I’ve been away in Dallas for a week, and when I got home (did I just refer to Austin as home?) on Tuesday, I was shocked by how much progress Jamie had made. This is what I’m going to post on today: my impressions of Jamie following my week-long absence.
First, Jamie’s hair looks wonderful. As a family, the Schanbaum’s have very, very thick hair. Unfortunately, Jamie’s hair had fallen out, more or less, due to the shock her body experienced from the disease and the medications Jamie was on. Over the past few months, it’s been clear that Jamie’s hair was starting to grow again. Last week, she got a haircut, which basically meant that we trimmed her hair down to a uniform length. Now, its growing in well, and she looks adorable. Her hair actually looks sort of like Rizzo's, from the movie Grease. Don’t you agree? I’m so happy about this development. I mean, we’d always told Jamie that her hair would grow back, but you really can’t predict these things. As you can see, she is beautiful!
That’s about all I have to add in this update. I’ll be busting out more updates soon. So, keep coming back for more.
Then you're in luck!
The fathers of two of Jamie's best friends are involved in an annual Father's Day benefit where their group of altruistic men (appropriately called the Men's Club) sell brisket to families on Father's Day and then donate the proceeds to a worthy cause. This year, the worthy cause is Jamie! We are so happy and have already had some orders come in from Jamie supporters and we haven't even put the word out on the blog.
So, here's the details: The event is formally hosted by St. Ignatius Martyr Church - Men's Club. Mr. Palmer (512.565.0361) and Mr. Cantu (512.658.3393) are the people to call if you want a brisket. The briskets are 40$ a piece, but all that extra money you're spending (and it isn't that much because the briskets are apparently great) goes to Jamie. You pick up the briskets on Sunday, June 21 (Father's Day) between 8am and 12 noon at the church, located at 126 W. Oltorf (NW corner of Oltorf and Congress).
Our family is so grateful for efforts like this. A whole, organized event... organized entirely by someone else... all for Jamie. It's just so great to see that kind of charity and thoughtfullness in today's society. Anywho, you should definitely get your brisket from there... Give your mom/wife a break and order the brisket. You'll get so many brownie points you won't know what to do with them... (You can donate them to Jamie too, if you'd like)
Happy (early) Father's Day to all!
So, I don't have much to add, except to say that there isn't much to add for now. There will be big announcements to come - hopefully sooner than later - especially now that Jamie had that surgery on her knee. Mom, Jamie and Roni went to Houston to visit Dr. Boutros. He wanted to see Jamie before scheduling the next flap surgery, this time on her right hand. He met with Jamie and sent us back to Austin with an appointment to undergo surgery on that hand on July 1st. We're excited to be moving forward on her hands and her legs... like I said, I'm very excited that Jamie's knee looks to be healing on its own. We should be up in our prosthetics in a week or so, I hope.
I think everyone would be happy to know that Jamie and I played the Wii together over the past few days. With a clever use of Ace bandages and some other hospital materials, I affixed Jamie's right hand to a Wiimote and she was good to go!! (provided that the games didn't require any button pushing). She was able to play Tennis, Baseball and she was able to play Boom Blocks (check it out!), but it was kind of difficult. It's the little things that matter most, and this was a nice little treat for us.
Finally, I'm going to try to get better with the timeliness of the updates. I'll rededicate myself to posting on the blog over the next few weeks. There's always something to add... I like the silence however, so maybe I should just try to avoid jinxing us. Don't want to disturb the peace... there's some healing going on...
It's been awhile since I've posted and it's been awhile since the last post and as usual things are pretty hectic - but at least we're back in Austin. The most exciting happenin thing in the Schanbaum family is the recent graduation of my beautiful Roni from University of Texas at Austin. Roni graduated from the Communications School with a Degree in Advertising. We are all so proud of her - she has done a fabulous job. The School of Communications had their ceremony on Friday and then there was an all over UT graduation on Saturday night. If you have never been to one of those you must go next year. It's held out doors in front of the UT tower and all though there was almost a rain out it went on with total fanfare. The UT drum line march in the participating graduates as well as professors. The UT band played on stage while the UT choir sang to some unbelievable music. President Powers spoke with Director Robert Rodriquez as the commencement speaker - he was awesome, as well as '09 UT graduate (it took him a little longer to graduate because he entered UT many years ago but took time off). The ceremony concluded with the lighting of the tower with a huge 09 and an amazing fireworks display. Awesome!!!!! Go Roni!!!!!!! I am so proud of you and love you so much.
Well it's official we are out of the hospital and it only took 6 month and 17 days but as with all the other adventure this new one took a lot of work before we were to go home. So here are all the details:
1.Wheelchair - Who would of thought that a wheelchair had so many parts and details to consider. The angle of the seat, 70 or 90 degree angle of the front leg rest, where the wheel actually falls in relation to Jamie's torso. We have to decide where the back support of the chair will lay on her back - preferably mid back so she can turn, look back without obstruction. The brake system had to be well thought out since Jamie's hand are still not up to applying to much pressure on anything. An additional wheel is added with a series of 12 quad knobs that protrude about 2 inches to help Jamie push and stop. The chair is a titanium rigid frame and once the removable wheels (yes that can to done, too) are removed weighs less that 
20 lbs. Arm rests, footrests, side quards, cushion and of course the all too important color - all these things are decision to be made. Oh and we need a loaner until we get our final chair. One final neat add on by Jamie (who by the way could care less about all the details) will be her front caster wheels - the light up while moving. As well as this wonderful new wheels for Jamie a few other necessary items were ordered and delivered by medical supply company so that Jamie's transition would and could be as comfortable as possible.
2. Wound Care - Well your looking at her - it's Nurse Patsy doing wound care - well almost.
Jamie does have a wound care office that she will go see on occasion The day of Jamie's release from hospital we went to meet our new friends. Very nice group and we will be seeing them about once a week till all things heal up. But hey, in reality I've seen it done so often that I feel like I could do it with my eyes shut - or maybe I should do it with eyes wide open. But when we did see wound care Dr Mailman suggested we see bone and joint specialist to see about that nasty knee problem which leads me to......
3. Austin Bone and Joint Clinic - We had an appointment with Dr. Malone Friday, 6/5 to see why and what could be done to help heal the wound on her right patella(I love that word - right knee cap to us lay people). Seems that a little calcification has set and keeps wound from healing. Dr. Malone recommended we do minor surgery - debriedment, thought we would never have to do that again. So surgery is scheduled for Thursday 6/4 and we have to be there at 5:am for surgery at 7am. Now I will only say this once but this is when been in a hospital may have it's advantage - we can just roll out of the hospital bed. But "there's no place like home" and so I had to get up at 4am - the hospital is literally less than a mile from home.
4. Hands - This will be 2 different pieces of information regarding her hands. On our last day at St. David's we had a very pleasant visit with our other new friend - a hand prosthetist. Seems that Hanger (Jamie's prosthetic company)Upper Limb Division just relocated to San Antonio from Anaheim, Ca. because of a huge contract with BAMMC and they are experts in their field. We are lucky beyond belief to have them on our team. He explained all the possibilities that are out there for Jamie's fingers, often referring to Pro-digits - Oh! yes and how expensive they are. But first things first we need to have hand surgeries. Dr. Boutros is back from his extensive visit to Vietnam and is anxious as well to start the surgeries. So this Tuesday we are taking a road trip to Houston (of what I know will be many more) to discuss surgery details. We hope to stick a visit in to Dr. Smith, as well.
This is getting long and wordy and I have alot more to tell you so I'm going to split it up and I promise (cross my heart) to post the continuation by tomorrow.
TTFN - Have a fabulous day
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!
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 o
riginally 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.
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!
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 21st 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.
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 d oesn’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. :)
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.
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
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!
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….
I’m losing a bit of steam, I must admit. I’m starting my 8th page (on MS Word, 11pt font, single spaced) of this massive update, so let’s see if I can squeeze out the necessary details about Jamie’s meeting with Jamie Peroni from Hanger Prosthetics. Then, if there’s anything left at all, I’ll update everyone about Jamie’s general medical condition.
Monday, April 20 – 9a – Jamie from Hanger comes to Hang with Jamie
It’s been an entire week since Jamie Peroni came to visit Jamie Schanbaum, so my memories of this meeting are sketchy at best, but here we go…
On Monday, Jamie Peroni (JP) from Hanger Prosthetics in Austin came to visit us in Houston because he wanted/needed to see Jamie before we could really get the ball rolling with respect to her future prosthetics and her recovery schedule. I’ve already told you that I’m feel pretty great about this guy; he’s direct, optimistic, smart, clever, experienced and places a priority on his personal relationships with patients. He doesn’t just fit the patient with the prosthetic and then not see the patient again until they need a replacement part; JP will call you if you don’t call him about the prosthetic. He won’t let his patients mope about their hardships; he’ll crawl right up your butt and make sure they continue to improve and progress. I’ve already written about this, but in case you hadn’t read that post…
Anyway, JP wanted to see Jamie’s stumps with Dr. Smith and some of the wound care team in attendance. Even by Monday of last week, 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 not even an issue; the only issue is that Jamie had been avoiding putting pressure on her hands (Doctor’s orders) and now she’s able to do that. Once she gets her first set of legs, I don’t think there will be any problems in that department. Her nutritionist is no longer requiring us to do calorie counts (after posting totals of 1950, 2850, 2300 calories for the few days I was there last week, who can blame them), and Jamie will be getting her feeding tube out soon. By the time you’ve read this, she’s probably had it removed. Jamie’s attitude is through the roof. She’s smiling, laughing and dancing like she normally does… ok, she’s not dancing like normal, but does shake her body whenever given a chance. We’ve been wheeling around the hospital multiple times a day.
In fact, I’m in Dallas now, and all this makes me want to do is go back to Houston to be with Jamie. What else is there to talk about? Infectious disease has signed off. Orthotics has been gone for a long time. Dr. Lin and vascular stuff is a non-issue as well. We’re just waiting for insurance to do their thing, waiting for a bed to open up in Austin, and then we’ll be in it. I can’t believe we’re this close to leaving… I can’t believe we’ve been in Houston for almost five months. That’s about all I can muster now… but it sounds like you’ll be busy reading this stuff for a while. Thanks for all the support, it’s been a constant source of motivation for us through these months. Thank you all so much.
This and the next update come from Monday, April 20; I’m just a week late in posting. Before I get into what transpired on Monday, I should take a few sentences to tell you who Jen Griffin is. Jen fell ill over two years ago, and even though Jen didn’t contract meningitis, she was required to amputate both of her legs and all of her fingers/thumbs due to the sepsis that her original infection caused. Just like the blog you’re currently reading, Jen’s family created a blog to notify her friends, family and supporters about her condition and recovery. Her story and Jamie’s story are so painfully similar that Nick, Jen’s husband, said that our blog made him feel like he was reliving the events surrounding Jen’s hospital stay. Of course, not everything is exactly the same. As I mentioned, Jamie still has parts of two fingers and parts of both thumbs. Whereas Jamie’s legs, arms, back and tush were covered with wounds due to her infection, Jen didn’t have any of those symptoms. Also, Jen had her amputation surgeries as she was coming out of her 8 week, medically-induced coma; Jamie didn’t have her amputation surgeries for almost three months after she originally fell ill. I take it that you’re getting the point – Jen and Jamie’s stories aren’t identical, but despite these differences, I don’t think we’ll find anyone with such a similar story to Jamie’s. Jen has about a two year head start on us and is clearing a path for us to follow. So far, we’ve met many folks who lost both of their legs, and some had AKAs (above-the-knee amputations) and some had BKAs like Jamie. Some people had lost a digit or two, some lost entire arms, some had mental complications, some had complications related to their internal organs. Despite the scores of people we’ve met, only Jen Griffin is dealing with the same life situation that Jamie is about to enter. This is why this meeting is long overdue.
I have a feeling that this meeting may have changed everything for Jamie’s mindset. Jamie’s had a while to come to terms with her new condition, and it will take her many more months and years to deal with, but one thing she’s been saying lately is, “I could have dealt with losing my legs, but it’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. 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 her new friend. She talked about all the cool stuff Jen could do… things that Jamie thought were out of the question (other examples: driving, showering). If it wasn’t for the significance of Jamie’s meeting with Dr. Boutros the following day – you know, where he took the pins out of Jamie’s hand, almost cried when Jamie held a pen on her own and told us we can go home as soon as possible – we’d still be talking about our meeting with Jen. It’s just wonderful that Jamie found someone we can find some guidance from on the “no-fingers” issue. But, maybe that’s the most important takeaway from the meeting – Jamie realized that she DID have fingers and she has thumbs. Sure, she has way less fingers than I do, but Jen has less fingers than Jamie, and Jen and I text each other frequently and have Google-talk conversations all the time. To say that Jen’s attitude and perseverance have inspired Jamie and changed her outlook is an understatement. She’s done so much more for Jamie and for us. Jen is excited to be a part of our lives for years to come, but not as excited as we are to have her in it.
You see why I’ve been putting off these blog posts? Just so much to say. What a great introduction to a wonderful person. [Btw, Nick Griffin, mom and I had a nice time too, but who cares about us? :) ]
Now its onto some very exciting meetings that we had this week. First, Dr. Boutros (I don’t know why I’ve been calling him DPS for so long, it’s not like he requested anonymity) came to talk to Jamie and I and gave us the best news we could have asked for – we’re going home! Second, we finally met with Jen Griffin, who, while she didn’t contract meningitis, lost both of her legs below the knee like Jamie, but unlike Jamie, Jen lost all of her digits on both hands. Jamie was absolutely blown away by everything Jen was able to do and peppered her with question after question. This meeting will certainly be the first of many for our families and Jen and Jamie are destined to become close friends. This, I know. I’m sorry that the part about Dr. Boutros is long, but there’s too many details to cover, so I have to put it all in. Sorry.
Tuesday 6pm – Dr. Boutros tells us that the left hand looks great, then says to go home
As Peter Gabriel wrote in the song, Solsbury Hill:
[This isn’t true. You can’t keep our things, but WE ARE GOING HOME SUNDAY!]
I’m pretty sure we learned this on Tuesday. It must have been Tuesday, because Jamie and I were watching Lord of the Rings: The Two Towers on our projection TV. Jamie was sitting in her wheelchair and had been doing so for a few hours; she’s way more tolerant of the wheelchair than she used to be, and though her legs get tired from hanging there, now that we started reclining the back of the wheelchair a bit, she’s more comfortable relaxing for more than the required two hours at a time. Pretty great.
So, Dr. Boutros comes into the room where Jamie and I are chilling. Mom is out getting her weekly break from the hospital, so she wasn’t able to enjoy the moment with me and Jaime. Dr. Boutros starts his examination of Jamie’s hands with her left hand. Her left hand had been part of the Flap Procedure, so it has undergone more surgeries than the other one. It’s also Jamie’s “bad hand”; she has parts of two digits on her right hand and doesn’t have any on her left hand. As it stands now, Jamie’s left hand looks like a mitten. When Dr. Boutros unwrapped the left hand, he asked Jamie to move her thumb around, which she did despite the fact that she still had two pins sticking out of her thumb. He was visibly impressed with his work. Then he smiled and said “OK, let’s take those pins out and see how well you can move.” Jamie said “Right now?” Dr. Boutros smiled, “Yep.”
It can hardly be understated how little Jamie likes painful things like, say, removing pins from her hand. She had practically demanded that we remove the pins in the OR. We said no; can’t have surgery for everything. So, when Dr. Boutros suggested that we take out the pins right now and without any anesthesia or numbing Jamie’s hands, I was shocked that Jamie was pretty cool with the idea. So, Dr. Boutros slowly tugged, twisted and turned the pins. He pulled, he twisted, he pulled; miraculously, Jamie hardly flinched. We both stared as he eventually pulled a shiny four-inch pin out of her hand, near her thumb. [For some reason, I’m reminded of December 6, when Jamie and I watched the plastic surgeon at Seton squeeze liquefied muscle out of Jamie’s palm, and he told us she’d lose both hands at the wrist]. He told us 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 to enter a rehab facility. He said that we don’t have any restrictions on the things we can do. Jamie can and should be putting pressure on her palm now. The most important thing is for us to begin rehabilitation and get Jamie walking again as soon as possible. His office and the folks at St. David’s in Austin will coordinate to discuss the best time for Jamie to take a break in her rehabilitation to come get the flap procedure done. She’ll have to have her hand sutured to her side for up to two weeks, and since she can’t do rehab like that, it makes sense. Also, he says, a healthy, active person will heal much better than someone in a hospital. Also, he points out, hospitals suck and nothing makes someone feel as good as being home and getting some puppy and kitty loving.
He explained that we can simply come back to Houston when it’s time to perform the flap surgery that her right hand still requires. While we’re talking about the Right Hand Flap Surgery, he said that, as a result, Jamie’s right hand will look worse after the surgery until he shapes it in a subsequent surgery. We tell him that as long as we’re not losing any length, we could care less about how the unfinished product looks and we won’t be discouraged by how the post-flap hand looks. Currently, the left hand, which has undergone its flap procedure, has a big mass of extra skin sitting on top of Jamie’s palm. So, I can imagine how a lump of extra skin will look on a hand that has digits on it. As Dr. Boutros said, it’d look like there are several little mushroom caps on her hand. No big deal.
Back to the matter at hand (wink):
Jamie/Nick – “Wait, we aren’t covering the bones before we leave? What if we hurt the bones?”
Boutros – “There isn’t anything you can do to the bones. The exposed parts are dead; that’ll have to go anyway. It’s not like you can do anything to hurt them.”
J/N – So, what’s dead is dead? [I HATE that phrase. I hate it more than the phrase “let’s just be friends”, my formerly most hated phrase]
B – Yep. It’s fine, you can do anything you want.
J/N – There’s no concern about infection?
B – Just keep it clean, you’ll be fine.
J/N – How? Can we pet the animals?
B – Soap and water should be fine and yes, you can pet the animals. Just keep it clean.
Jamie and I were blown away. We’d thought that we wouldn’t be going to Austin until she had another flap surgery, and even if we wouldn’t be undergoing another medical procedure, we were pretty certain that Dr. Boutros and Jamie’s hands would be holding us up at the end. So, now the only things keeping us from Austin were the removal of Jamie’s feeding tube (piece of cake) and avoiding any regression in her “numbers” or infection.
It was a pretty emotional scene, to say the least. The emotion, though, was elation. We’re finally leaving. We decided that it’d be best to target Sunday, May 3rd as the day we get to leave for Austin. Then, we’ll simply drive back in my car to Houston for another few surgeries with Dr. Boutros. Sounds pretty simple, huh? So, yeah, that’s the big news – First, we’re coming home. Second, Jamie’s left hand can grip a pen and may prove far more useful than we’d ever imagined. The right hand, he said, will be far better than the left.
So, that’s about it… next up, I’ll write about Jen Griffin coming to visit, and we witness the beginning of a lifelong relationship. Thanks for reading to the end of this long post, and for putting up with my delay in getting this post out there.
Ok, so I apologize for the delay in posting. The rumors are true, and we’re coming home soon. Really soon. This is probably the biggest news we’ve received in a while, and I will give this the treatment it deserves. Unfortunately/Fortunately, several events/meetings/Telemundo interviews happened last week, each of which is deserving of its own lengthy post. This also means that some items that deserve a detailed mention (like Mike Segal coming by the hospital again; mom and I go to the Social Security office again) I’m just going to have to skip over for now; Mike Segal, great guy… if you didn’t click the link to his website yet, you should… What’s this? I didn’t put the link up yet? My bad.
Now, here I am in the Barnes and Noble/Borders across Northpark Mall in Dallas, wearing my oversized headphones on my oversized head… it’s a nice Sunday and I’m ready to catch (everyone else) up. I think the best way for me to handle this is in order of awesomeness – so, the posts will go in this order –
The Jamie Schanbaum Act is through the Senate
Texas Meningitis Day
Part 2 – The Words We’ve Longed to Hear; The People We’ve Longed to Meet
(a) Boutros's Hand Update; We're Leaving Houston on Sunday
(b) Jen Griffin comes to visit Jamie
Prominent Prosthetists Propose Prosthetics (that was fun)
Important Medical Information
We’re very excited to announce that Senate Bill 819, authored by Senator Wendy Davis from Fort Worth, passed through the Texas Senate by a vote of 29-1! [For the record, I consider this to be a unanimous vote, because the only vote against the bill was due to one state senator’s objection to the procedural matters related to this and most other bills. (Also, this is why I wish I could insert footnotes into the blog posts) So I feel good about 29-1]. As you probably know, SB 819 would require all students living at on-campus dorms, on both private and public universities in Texas, to provide proof that they have been immunized against the meningococcus bacteria. There’s an opt-out provision in the bill too, so people who are fundamentally opposed to vaccines won’t be required to subject their children to any unwanted vaccines. To each, their own. So, it passed. I’m grateful to all of Jamie’s friends and supporters who contacted their state senator about this bill, and whether you told them you were a decorated war hero (Blake H.) or a member of the medical profession (Justin C.), I’m glad you contacted them. Also, to all of the immunization movements out there, thank you for getting the ball rolling on important legislative efforts such as this one. We didn’t do this in a vacuum and wouldn’t have made any inroads unless people had already been made aware of the damage caused by meningococcal disease.
As for Friday’s details – Mom and I were in town from Houston to be recognized (along with Maureen Moore and Nancy Day, two women whose families have been impacted by the disease) on the floor of the senate in connection with Texas Meningitis Day. KC was in Houston with Jamie, if you’re wondering. I’ll explain the details of the Texas Meningitis Day resolution shortly, but that’s why we were in town. We hoped that SB 819 would be voted on while we were at the capitol, and mom and I were ready to stick it out until the vote took place. Luckily, we didn’t need to wait long. Senator Davis, asked the Lieutenant Governor to prioritize the bill, which meant that it would be heard early – it was the fourth bill heard on the day. In fact, we had just finished taking pictures related to Texas Meninigits Day when we were told that we should go to the gallery (or is it galley?) to watch the vote on SB 819. We were told that we should meet back in this area after the bill passed to take pictures with everyone.
What do you mean, after the bill is passed?
So, we went upstairs, to watch the bill be voted on/through. First, Senator Eddie Lucio, Jr., who has been instrumental in every legislative action we’ve been a part of, had an amendment to announce on the floor – in honor of Jamie and her family, the SB 819 would be known as the Jamie Schanbaum Act! He read a beautiful speech about meeting Jamie and his relationship with the Silva family (Note – Silva is mom’s maiden name and our Silva family is based in Brownsville, Texas). We had talked about Senator Lucio intention to name the bill after Jamie, and we all believed that it would happen, but, as Benjamin Linus said to John Locke on LOST recently, “It’s one thing to believe something will happen, but quite another to actually see it happen.” [This is what happens when you see every episode of LOST multiple times…]. So, the Jamie Schanbaum Act (formerly Senate Bill 819) passed with a vote of 29-1. Now, its onto the House, where Texas’ many representatives will ultimately decide whether the Jamie Schanbaum Act becomes law.
Everyone there was moved; some people were teary-eyed. Jamie’s friends Michelle and Sarah were in attendance; Roni was roving throughout the gallery, taking pictures (as I said, she’s quite good, and you know I wouldn’t say that unless it was true); Uncle Joe and Aunt Cindy were there with their children Sara (soon-to-be graduate of UT-Austin) and Chris (soon-to-be student at UT-Austin), our “cousin” Letty… ok lots of people were there. As for me, I was looking around and smiling at everyone I could smile at. Then I caught Senator Davis’ eye, and she was smiling and doing an “air clap”. So, thinking this was my signal to applaud (despite the fact that a full 20 seconds of silence had transpired since the vote was read), so I started to clap loudly… probably about 7 claps. As it turned out, I waited too long; Lt. Gov. Dewhurst had already begun speaking again, and he stopped short when I started clapping. I immediately stopped clapping. He looked around the Senate chamber, trying to find the offending clapper like he was trying to locate a wayward bird that flew into the room. No one spoke, and I meekly raised my hand and stood up a bit to identify myself. “We will have order in the gallery!”
I’m an idiot.
We went from there to congratulate the senators on passing the bill… either that, or they came to congratulate us on the bill. Either way, we met Senator Lucio, Senator Davis and Senator Florence Shapiro and took some pictures. We all felt pretty great about what had transpired. It was just a general love fest... Funny story, Senator Shapiro, back in the day, taught several of my uncles at Richardson High School. She’s also the mother-in-law of Rabbi Brian Strauss who came to meet with us in the hospital a few weeks earlier. You see, it’s all coming together.
In conclusion, we’re one step further to preventing this disease from wreaking havoc on people’s lives. We’ll let everyone know when the bill, er… the Jamie Schanbaum Act, is going to committee or going to a vote in the House. Thank you all for everything… I don’t think this would have happened without your support.
Friday 9am - Texas Meningitis Day
The only reason we were in Austin in the first place was to be recognized on the Senate Floor when Senator Eddie Lucio, Jr. put forth his resolution declaring April 25 as Texas Meningitis Day. Why April 25th? Because that’s also World Meningitis Day. In fact, it was the first World Meningitis Day and first Texas Meningitis Day on Saturday. As I mentioned in Part 1, Nancy Day and Maureen Moore were there to represent their families in the same way that we were representing Jamie. Senator Lucio read a beautiful speech about his meeting Jamie and provided some important details about the effects of meningitis. Not knowing what to expect, I thought his words were particularly touching. I’m so grateful to Senator Lucio and his staff – every legislative door we’ve walked through, they’ve opened. Then, after Senator Lucio introduced us, we shook some hands and took some pictures. We met Senator Zaffarini, who chaired the Higher Education Committee that we provided statements to a week earlier, and Senators Ellis and Duell as well as Lt. Governor Dewhurst (an hour later, he’d give me the Death Stare for applauding the passage of the Jamie Schanbaum Act… whoops).
Our hope with recognizing April 25 as Texas Meningitis Day is part of our larger effort to make more people aware of the disease, because people can’t prevent something that they don’t know much about… as we learned earlier this year. The Jamie Schanbaum Act and Texas Meningitis Day are just the beginning for us, and we’ll have many more events in the future to inform people about the disease as well as recognize Jamie, her recovery and tremendous story.
So, that takes care of all of Friday’s fun. I’ll try to add pictures later in the next few days.
[This is a message I've sent to our friends and family, asking everyone to contact their Texas State Senator and asking for their support of SB 819]
As you may know, we've become very concerned with getting the state of Texas to require meningitis vaccines for college students. To that end, we testified in front of the Higher Education Committee in support of SB 819 last week. This bill concerns a VERY important health issue for the citizens of Texas and a personal issue for our family. TOMORROW (or Friday) the bill is being argued on the senate floor and we need your help getting senator support.
(At the bottom of the post is the letter I submitted along with SB 819 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 your state senator ASAP [click 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 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
