Jamie Schanbaum Support and Medical Update Blog

October

2011-10-18T02:28:00.002-05:00

Happy Halloween everybody! One of my favorite months because not only does it include my birthday(I'm now 23!), but it's a kick off to the holidays (Spooky Halloween, Yummy Thanksgiving, & Family Gathering Christmas & Hanukkah), and great weather.

Thank you for all the followers that keep coming back to see whats going on in my life. Well this week I'm really excited to fly out to La Jolla, California where I will be competing in the Challenged Athletes Triathlon where I will be riding in the cycling portion. My other teammates are also meningitis survivors that I have met before, so I am also excited to see and catch up with them again. This ride will bring new experiences that I haven't done before like riding on the coast, riding 44 miles, and also to be participating in a triathlon. All new things, but they're thrilling at the same time.

I've been working hard everyday for almost a couple of months. With the hot weather that Texas gets, it localized my training session to my stationary trainer that I use at home. But since it is October, the weather has cooled off and I have been getting on the road with my bike a lot more - Thank goodness.

My bike has done me well over the year (and hopefully many more to come), but what is also exciting is that Im starting a new field in cycling called track. Track racing is a sport usually held on specially built banked tracks or velodromes that can curve at steep angles. I'm starting this sport because when I'm in Guadalajara for the Pan American games, it will give me more opportunities to compete in different races. I'm nervous to start this new part of my career but I'm definitely excited. Not only will the sport be new, but I will also be getting a new bicycle from Bicycling Sports Shop. They've been so generous to me on my cycling adventures, that I definitely owe them a lot of gratitude. Because not only will they sponsor a new track bike, but they were the one's that gave me my red bike. And they have also generously have handed me different articles of cycling clothing from the shop - which are not cheap and neither are the bicycles. With the track bike, it's really important to be aerodynamic, so I will most likely have a carbon fiber frame, with some new wheels. They will be soo light! My current bike weighs approximately 30 lbs, but my new one will be about 15 lbs. I could literally throw it across the room because its so light.

Anyways many more opportunities are coming my way, and I will be there for the ride - no pun intended. Please stay tuned for more post that will be coming. And wish me luck in La, Jolla.

New Update

2011-09-11T16:37:00.000-05:00

Hello Everybody! It's been a while since my last post, and I have so much to tell.

Looking back on this past year really does shock me. I can't believe how far I have come since my journey in the hospital. In my interviews, I speak of my hospital experience as a nightmare. We went through weekly surgeries, daily wound care changes, and more. And back then, my spirits were at an all time low. My body went through some unbelievable changes with the obvious amputations but also, weight and hair loss. I almost didn't recognize myself, but I knew that I was still the same person. But sure enough we pulled through. I knew (maybe with a little bit of encouragement) it was only going to get better, but no one knew what kind of a new adventure I was about to begin.

After the livestrong challenge I knew that cycling was something I wanted to pursue. So my trainer, Sean Ahmadi, and I kept going with our work out regiment. Sean has been with me since the beginnig, which was only last summer. But this past summer, new opportunities were given to us. My prosthetic company, OPT got me out to Oklahoma for my first time trail. I was fully confident that I was going to do well, until I saw the course. I described the hills like roller-coasters. No one expected Oklahoma to be so hilly. The road was consistent with hill after hill routine. But sure enough I accomplished it and I felt like a million bucks. In fact, here's a video clip. http://www.opttexas.com/index.php/multimedia/video I believe I'm the third video.
But also when we were there, we also met a few people involved with the paralympic committee based in Colorado Springs. They were intrigued and thought that maybe I have a really good chance in succeeding, because I am a rare category. Let me explain... The biggest group are men, with one leg. I'm a girl, with two legs, both my hands are impaired, and I ride a regular upright bicycle (versus recumbent bikes). So they were excited that I was interested in the sport, and almost immediately asked me what I was doing in two weeks because the US national cycling time trail would be taking place in Georgia and they wanted me to go. So I said yes! ha ha... Then before we knew it, we were in Augusta, GA competing with such a huge and dynamic group of people. It was amazing. The ride was spectacular, and started out on the Thurmond Lake Dam at the border of Georgia and South Carolina. What a unique opportunity, and I am so grateful to participate in this role. When the race was over, I didn't know how well I did (considering it was pouring rain the whole time) but I came out on top and won gold in my division. So I currently stand as a US national cycling champion. This is something that will stay with me forever, and not that many people get this chance. People work hard for a long time, and still don't achieve what I have. I am blessed. I can't believe any of this, but I will definitely sit and enjoy the ride. No pun intended...

Well after the national's time trail, no one really knew what was next. Everyone was wondering about the next paralympics in London 2012. But just because I won in the US nationals cycling doesn't mean I'm an automatic participant in being a part of the USA team. So then we got in contact again with the paralympic committee members that we originally met in Oklahoma. We tried to figure what the next step would be. Then we were told that the Pan American games are happening in guadalajara in November and that I am in the testing pool to be a part of the American team, and my chances are high. So yes, I'm nervous because this will also determine if I will be participating in London. Crazy...

Other than that I am also looking forward to the next livestrong challenge in October, but this year I will be doing 20 miles (instead of last year's 12 miles). I'm excited to participate in that but I will also endure the challenged athlete triathlon in La Jolla, California where I will ride 44 miles. The most yet, and it makes me very nervous. Even though, I'm slightly scared, I know I will succeeded and I can't wait to have the feeling of accomplishment.

It's been a crazy journey and I can't believe how far I have come. In my interviews I like to comment, " in 2008 I got sick, in 2009 I learned how to walk, in 2010 I got on a bike, in 2011 I am a nationally acclaimed cyclist, and hopefully in 2012 I can be a world champion." Wow. Look at what my life has turned to. Unbelievable.

new article

2010-11-14T15:34:00.001-06:00

http://www.austin360.com/recreation/jamie-schanbaum-who-lost-limbs-to-meningococcal-septicemia-1044612.html

MY BIKE!!

2010-11-06T14:41:00.003-05:00

hello viewers!!

I thought I should tell everyone about my wonderful month of October(and now November), and how significant it was to me! As most people know, I started training for my bike in June, where I met Sean Ahmadi, my trainer. Him and I met atleast twice a week, where we focused on strengthening my legs by starting off on a stationed bike for 5-10 minutes, then go to the floor to stretch out my legs, work on my stomach, then up nd using the lat pull downs, and more biking. But never on my actual bike, on the road until Sean thought I was ready. And I agreed. But as the months kept going, I wanted to get on the road with my bike even more. Then my wish came true, right before my birthday.

My birthday is October forth, and it was a monday this year, but the weekend before Sean and I went on our first ride. Sean and I were both nervous; But, I think Sean was more nervous. We were worried about how to push off and stop, or how to brake, etc. But we started off with him holding my bike as I got on, and then he would do the whole "dad thing," by holding the bike as we started going and he let me go when I was ready. It was cute. haha. But we pushed off, and Sean got his bike to catch up with me. Man, what a great moment that was. After all this time, it was so amazing to feel the wind on my face, blowing by my ears, and it was great to be one with the moving scene. To write what I felt at that moment, is hard to describe. Sean even pulled out his iphone to record me, and in it, I was just smiling. Couldn't even talk. He asked how it felt, and I just smiled, opened my mouth but couldn't say anything. and just laughed. What a great moment.

Then how we stop, sean goes a head of me to get off his bike, and as I would slow down, Sean would grab the bike to stop me. He is great. I cant believe how wonderfully well this has all gone for me. I cant believe I've gotten to this point. One year ago, I was barley walking on my own yet. And if someone told me that this is what I was going a year from then, Im not sure if I would of believed them. so, yeah! yahoo! I'm proud of myself! yippie!

So on my second ride, we worked on braking, which made me nervous. Then we worked on shifting gears, on my third visit. And by this point I'm riding 4 miles per ride. I impressed myself. By the 4th ride, I was riding about 8 miles at the veloway. This entire time was at the veloway, and for those who are unfamiliar, its a place for cyclists, and roller blade/skaters to go and do a few laps. The entire course is three miles long and no runners or dogs are allowed. It's really interesting. Then possibly my 5th ride I went on South mo pac, where cars are going 60-70 mph and I rode with Sean, riding about 8 miles.

Then by my 6th ride I rode 10 miles at the livestrong challenge on October 24. I couldnt believe it. There I rode with 3,000 other cyclists. I couldnt believe it. There I was not only accompanied by Sean, but also Aaron Foreman, Greg Lakompski*, Carlos Garcia, and my cousin Zeke Silva. We called Zeke to see if he would like to ride, and he accepted and rode the 10 miles with me. Aaron rode 65 miles, Greg and Carlos rode the 90 miler. UNBELIEVABLE. If you are unfamiliar with these people, check out my earlier post. Carlos, an above the knee amputee, just started riding a year ago only riding 10 miles, and now did 90 miles. holy poop. I think I can do that. Atleast at some point.

Anyways, this all happened in October. My first ride was the first weekend, and then three weeks later I was at livestrong riding 10 miles. What an accomplishment. I cant wait to see what happens next year. Thanks to those who keep reading, sorry I haven't been active on blogging. But I've been so busy with school. It's been the hardest yet. 4 more weeks til school is over, and I cant wait.

Until next time. stay posted..

my new chapter in my life

2010-07-13T18:48:00.002-05:00

Hey everyone(if there are ppl still reading, since its been so long),

I just wanted to update you guys on what's been going on with my life. Its the summer time, and the sun couldn't shine any harder in Texas, for it seems to be a pretty sweaty one. During this time I am enrolled for a summer course at ACC taking biology. I'm half way done and its been really exciting, actually not really. Other than that, I wanted to discuss with you guys my new chapter in my life, cycling. Before I got sick, my Bike and I were really close. We would biked 10 blocks to school everyday(never once took the bus or my car), go to my friends in west campus, go to HEB, go to epoch coffee to study, and any other place our peddles would take us. But once I got sick, and went through the whole realization that I would have my legs amputated, my hope to ever ride again, was gone.

But since then, I have met pretty incredible people that have motivated me and inspired me to get back up on that bike, and told me that it was possible to ride again. My first bike enthusiast was Bob Whitford, aka 1 armed Bob. I met him as my occupational therapist in out patient rehab. He is a para olympian in cycling, and is a very handy man. The next enthusiast was my prostitist(leg conformist), Aaron Foreman, he is a completely abled body but rides road bikes all over austin and does marathons all over the country and more! Aaron has just finished up my swim legs, but his next big project are my cycling legs which I am is so excited to have. Enthusiast #3 is Carlos Garcia. Carlos had cancer in his leg, and faced an above knee leg amputation a few years ago. Carlos is only older than me by a few years, and just graduated from St. ed's in kinesiology and is going to prosthetic school to eventually join Aaron and his prosthetic company. It was really exciting to meet Carlos, because not only is he very similar in age and that we both faced amputations, but he is also riding his bike again. Carlos is also apart of the livestrong team, and rides for them a lot. Okay, there are 3 more people to introduce! #4 is Chris Carter. Carter is from the bike sports shop off S Lamar, and is willing to donate a bike to me!!! maybe not fully, but still, I will be getting a great discount. I just met Carter a few weeks ago, but I can tell that its only the beginning. He plans to help me and making my bike 100% Jamie adaptable, for we are looking at different brakes, and shifters, and peddles that are accessible for me to use. Did I mention my bike is red? It's beautiful. I haven't brought it home with me yet, but I cant wait. Person #5 is Greg Lanier. Greg is a patient of Aaron's as well, for he has been a below the knee amputee for many years but rides his bike all the time. Aaron, Greg, and Carlos all ride together from time to time, and I cant wait to join them for future rides. Okay the last person is Sean Ahmadi, and he is my trainer. Sean is going to help me strengthen my core and legs for my future in cycling. I have only worked out with him once, but I hope to keep training for a long time.

Okay, you have now met my six people Bob, Aaron, Carlos, Greg, Carter, and Sean. Seems like an awesome beyond awesome team that I got behind me. I cant wait for my future to unfold. I know in October there is a livestrong challenge, and I think that that will be my goal. I heard you can do any amount of miles you want, which sounds good to me.

Okay thats about it, when it comes to updating on my new chapter in my life. Other than that, stay tuned.

WORLD MENINGITIS DAY 4/24 - TEXAS MENINGITIS AWARENESS DAY 4/25

2010-04-25T00:09:00.001-05:00

It's been quite awhile since I've written and I do miss it and miss everyone - as you can imagine my life and all that it encompasses is always quite busy. So where do I begin. Let's start with our First Annual Bluebonnet Gala - what an incredible success from every imaginable angle. Needless to say we worked our butts off. Our success always lies with the generosity of others. Errocreative (Roni's graphic design company) - Did you see what they produced? OMG - the Save the Date - the invitation (what a job-2500 invites were e sent out), our signage(huge signs), the most beautiful well designed program. The JAMIE Group will be forever grateful. Which brings me to Fastsigns - once again they pulled through with awesome signage. Lindsay Stillman was my rock and a hard worker - she helped us organize the best live and silent auction items ever. You were lucky if you attended and even luckier if you were a auction item winner. Letty Landa helped organize our volunteers. If you saw what we had to deal with well you would know we couldn't have done it without our volunteers - so a BIG shout out to ALL our volunteers. Chef Alma Alcocer-Thomas extraordinaire - the food was beyond belief and once again if you weren't there you missed an awesome array of foods. St Michael's Academy - Amy and Wade were outstanding and of course so patient. Who knew that you could bring such beauty to a high school cafeteria . Our ever so talented emcee Ron Oliveira was perfect and went an extra mile pushing the prices up on the live auction - was a lot of fun. Great Events you were also a great help and as we've said before - we couldn't have done it without you. The Schanbaum / Silva Family always my rock - what can I say. Family is so important to me and I'm blessed to have them by my side. Last but certainly not least my BEAUTIFUL children - Nicholas, KC, Roni and Jamie. God blessed me and I believe I'm the wealthiest mom in the world with all the richest my children bring me. Love them so much. I'm sure I'm forgetting people but know that everyone that we're a part of this successful event will always have a part in my heart.
Despite the fact I have not quite put the gala to rest and that there are still a few details to put a close to it, life goes on. That being said - we've been very,very busy and where do I begin. Jamie got some beautiful, awesome vacuum legs (with coverings). They look great and after a lot of tweaking (and we're still tweaking) she loves them. Every night we must charge them so that in the morning when she puts them on she presses a couple of buttons, they create a seal to her limbs and off she goes. We are however talking to Jamie's new prosthesis' - did I tell you Jamie has a new prosthesis' and we love him - about getting a pair of swim legs (look out summer) and a pair of running legs (look out runners). We are also in the beginning stages of Jamie getting a bike and this is not as easy as just getting a bike. We have to consider jamie's legs as well as her hands and how is she going to brake - look out runners.
There's a lot to talk about but I guess the most important thing I need to say is that today is World Meningitis Day and tomorrow the 25th will be Texas Meningitis Awareness Day. Jamie and I have reached out to as many people as we could. We've done interviews throughout Texas - been on talk shows - are talking and will be talking to several organizations - we did a public service announcement - next week we will be traveling to south Texas to speak and in a week we will do media outreach in Austin as well as a few events in Dallas. We've come a long way since this horrible disease took over our world but we've also come a long way in bringing awareness. We must remember that this is a vaccine preventable disease. We must not let this happen to anyone again. No child should have to endure the pain and suffering that Jamie has gone through. We must not let the past year go in vain. Help us help others and spread the word - Vaccinate.

The Bluebonnet Gala was Amazing!!!

2010-03-01T20:38:00.002-06:00

[I know it has been a very, very long while since I posted, but I’ve been quite busy. To hit the highlights, after two months of heavy networking, I’m back in Dallas (Irving, actually) working at my new job! I started on February 5 and I’m really enjoying the new gig. The hours are long, but, maybe I that’s just related to the fact that I hadn’t really been working a normal, full-time schedule since Jamie fell ill in November 2008… Man, lawyers work a lot!! I’ve also been the No. 2 in command of planning The J.A.M.I.E. Group’s first annual Bluebonnet Gala, which is our first major/formal fundraiser. Also, I ran a half-marathon on Valentine’s Day. It’s not related to my absence from this blog, but it’s still pretty neat!]

Anyway, that being said, I’m glad to be back writing about Jamie and her story. It’s been so long since I’ve written that the general theme of her story has changed. When I used to post, the posts were dedicated to the medical minutiae of her recovery from Meningococcal Septicemia and the amputations related thereto. (“Thereto”… can you tell I’m working as a lawyer again?) Now, the story has changed a bit. Certainly, a vast majority of the story pertains to Jamie’s gradual acclimation to her new life, new legs and new abilities; however, there’s a large chunk of this blog that will become dedicated to Jamie’s new mission. By acting as the main voice of The J.A.M.I.E. Group (which is an acronym for Joint Advocacy for Meningococcal Information and Education), Jamie will attempt to educate students, teachers, parents, doctors and whoever else that will listen about the dangers posed by Meningitis. Meningitis is a life-threatening disease that, considering how severe and sudden its effects are, the public and the medical community are relatively under-informed about. But, if you’ve been reading along, you’re well aware about the damage that this disease can do.

This post is about The J.A.M.I.E. Group’s Bluebonnet Gala and what an amazing night it was. Everything went as planned, and, thanks in LARGE part to some amazing volunteers, the evening was a rousing success. The event was held on Saturday, February 27 at St. Michael’s, Jamie’s high school. Upon entering the building, you’d have no idea that you were stepping into a cafeteria. The place looked magnificent. The good folks at Great Events, a party planning company whose time was donated by one of Jamie’s supporters, flew in from Chicago and they put on a great show! Anyway, people from all over the state came to Austin to celebrate Jamie’s inspiring recovery and her new mission. I’m still flabbergasted about the amount of live and silent auction items that were donated for the event. There were over 80 items, including a 1.00 carat diamond, a football signed by the 2009 Texas Football team, autographed Adrian Peterson, Devin Hester and Matt Forte jerseys, lots of artwork, a villa in Acapulco for 10 people (with staff), $1000’s of gift cards to restaurants and other stores… I could go on and on. The food, prepared by renowned local chef, Alma Alcocer-Thomas (who donated much of the expense of the food), was fantastic. Everyone left talking about the meal that she prepared. The night was hosted by Ron Oliveira, one of mom’s high school buddies who just so happens to be the main anchorman for KEYE-TV (Austin’s CBS Affiliate). He did a fantastic job, and along with our auctioneer, Steve Glink, kept the crowd entertained all night. The best part of the evening was, without a doubt, Jamie’s video and speech that she made to the crowd after dinner. As the blog readers have witnessed first-hand, Jamie has developed into a budding writer and public speaker, and she showed off those skills on Saturday. She was great up on stage.

Also, Letty Landa and Lindsay Stillman, who both volunteered their time and also arranged for other volunteers to attend, made sure that our event had the right amount of supporting staff for the set-up, the event, and the post-game. Amy and Wade from St. Michael’s were critical for us as well when it came to setting up for and cleaning up after the party. Then, there were the two bands that were perfect: The Brimmers and The Cory Cross Band. Even though they aren’t typically playing at formal galas, you’d never know it. They, like everyone else, were perfect. Needless to say, a LOT of people came together to make this work, and they did their job. It was amazing!!!

I think I can speak for the family when I say how grateful we are for the amazing and jaw-dropping amount of assistance we received from both obvious and random sources. We couldn’t have done this on our own. We don’t have the final tally on the amount of money that we raised, but I can definitely say that we exceeded my highest expectations. We’ll be doing this again next year in Dallas, so we hope to see you all there. Thank you all so much, and now, it’s back to real life for a bit! Hopefully, the next update will be about Jamie’s new pair of legs that she’s been wearing… Thanks for reading!

February!

2010-02-17T23:54:00.003-06:00

hey there everybody. I just wanted to squeeze in a new post. February is a big month, especially to the J.A.M.I.E. group because we are having our first annual Blue Bonnet Gala, thats being held at my old high school St. Michael's. It will be taking place on the 27th, we are expecting people from all over to come in. It's going to be really exciting to see who comes, because I know that I will be seeing plenty of people that I haven't seen in years. The Schanbaums are in the midsts of all of the planning and it's about to exceed maximum capacity of stress for us. Everyone is working really hard in putting it together. It's going to be a really amazing event.

Another exciting thing that happened in february, was my grandfather's birthday, Gene Schanbaum. He just turned 32 and looks amazing! but on a serious note, this man has always been there for me, through it all. I have always been able to rely on him, and he would be there for me to give me advice. I love him so much, and I hope he had a super birthday - Love you!

Another exciting thing that is happening with me are my legs! When one becomes an amputee, you are given your first set of legs, called temporaries. New amputees use their temporaries until their leg conforms properly to the prosthetic, which can take some time. When an amputee moves up from their temporary legs to their permanent legs, it is a big deal - FYI. Which is what I am in the process of doing right now! Im getting my permanents, that are "cutting edge," and will have calves(instead of the crobar). I am so excited and I can't wait to wear my leggings with my "shaped" legs and moccasin boots! haha. I will be sporting them at the gala.

I also just want to squeeze in that Im really proud of my sister Roni and her company erro creative. The company has only started just a few months ago, and they have so many clients that keep them busy all week. If anyone out there needs any branding done for a company or a website, erro creative is the one to do it(http://errocreative.com/). They're wickedly good!

Other than that everyone has been on a move. My brother just got a new job with the Ethos Group in Irving. KC got a new job at the "eye doctor" office in dallas, and is finishing up her course work with school. And my mom is going over and beyond for this event, she has been amazing coordinating everything with great events. I am very proud of my family, and I love them very much.

I am also proud of myself, for I am officially a 1 year amputee, as of february 6th. I cant believe that a year ago, i was in the hospital, wanting it to be a year from now. and here I am, a 1 year amputee who has overcome one heck of a year. I am someone who was told that I was not suppose to make it, and that the fact that I am alive, is a miracle. And here I am, already enrolled at UT, taking a full load (15 hours), walking to my classes, driving, regaining my independence and it feels gooood.

i am proud to be where i am right now, and happy that ya'll are still apart of my life. thanks for always reading the blog, praying, visiting, updating, and/or just basically thinking of me. everyone out there has helped me through the way, and i thank you for that.

other than that I hope to see everyone at the gala, it should be a blast!

1/15 - Here's to 2010 - It's Been Too Long

2010-01-16T19:51:00.001-06:00

First of all it's been too long since I have posted and second it's been too long since there's been a post but the holidays were sooooo busy - to say the least. It's was very important that the holidays be extra special for Jamie and the family since a year ago we were in the hospital - more importantly ICU. Thanksgiving was in ICU Seton and December holidays were in ICU Houston as well as New Years in ICU. So these holidays were definitely a time for reflection and gratitude . How could it not be? We knew that the holidays could have been a whole lot different. We reflect that we could have had the holidays without Jamie - we're grateful that we had the holidays to celebrate with Jamie. And we did just that - Thanksgiving was in San Antonio at Uncle Dean & Aunt Betty's - Hanukah was in Dallas at Papa Gene's with all the Schanbaum/Clay/Gross Family. Thanks Aunt Nancy for pulling it all together and for the doozies - Yum Yum!!!!!. Xmas was down in Valley at Uncle Joe and Aunt Cindy's house with the Silva/Martinez/Fernandez family where we feasted on all that is good and culminated with a killer game of Chalupa (Mexican Bingo). New Years - well that's a different story - Jamie & Roni celebrated in Austin with lots and lots of friends at the house that included a bounce house - Nicholas & KC celebrated in Dallas & I quietly brought in the New Year in San Antonio with Uncle Dean & Aunt Betty and loved every quiet moment of it. That been said - it's time to diet!!!

More Importantly - The Schanbaum Family would like to send a huge Happy New Year to all our family and friends. To all the people who have stood by Jamie and to everyone who has stood by every word, every breathe we took. It was one hell of a year - one that I hope I will never have to live again. As Jamie puts it -" It was - forever - a life changing experience". Jamie continuous to inspire many people who cross her path. She is my inspiration, my hope and my love. As we turned the corner into 2010 Jamie is already in full swing - spreading awareness of the disease that changed her life forever. I asked that you continue to follow our journey because the best is yet to come. Here's to 2010!!!!!!

Tune in next week where we will update you on the media swing we have had - The Jamie Schanbaum Act came into law in January. Also Jamie continuous with her struggles on her legs and on her way back to UT as a full time student.

december time! 12/8

2009-12-08T10:17:00.003-06:00

Hey everyone its Jamie, writing you another blog post. Well its December and I can't believe how fast it came. It's silly to think that this summer, i was hoping for it to be December because thats how long I was told, that it would take to independent. I now go and study at coffee shops by myself, I am also driving on 35(watch out), and I also walked into my class for the first time last week. Everything is stupendous when it comes to taking notice at my progress. But I also do something new everyday. All thanks to St. David's rehab, who helped me get my back on my feet-pun intended.

A year ago from today, my family were looking for doctors anywhere that would help me save as much as they could for my limbs. Because in Austin, we were told that we were looking at amputating above the knee, and at my forearm. Pretty insain, which makes me grateful that we found the connection to Doctor Linn, who put me in multiple hyperbaric treatments to save more than we were told. And another thanks to him because Doctor Linn was always saying to wait last minute (more like 2 days) until we amputate because, by doing so, we were able to add in more hyperbaric time to give more oxygen to my limbs, which evidently saved as much as it did. Thank you, Doctor Linn!

With it being december and xmas time, my family are going to Brownsville for some family time. We're even going to make tamales! yumm... but its also going to be the first time to celebrate xmas with the Silvas because it has been a loooonnngg time since we have all celebrated xmas together, and the first to make tamales together. "December time" also means school final's to study for, then old fiends come back in town for the break. Im in the moment of studying, but I know soon enough I will be with all of my friends from the A group-Michelle, Sarah, Andy, Cris, Claire, Molly, and Julie. I call them the A group because they were there for me 100% of the time when I was in the hospital and i am eternally grateful to have them in my life. And I haven't been with everyone since the summer, and back then I was in the wheelchair, but now i think they'll all be excited to see me on my legs. "December time," is a good time.

Thanks. Jamie.

11/15 - Thank you!

2009-11-15T21:09:00.003-06:00

So, on Saturday, November 7, we had our first fundraiser and it was a huge success. We don’t know exactly how much we raised, but it was a lot. Maybe I’ll post the final amount, when we finally compile the numbers…. It’s not that it’s a complicated calculus, its that now that we’re done with the event in Dallas, we’re onto planning for the “big” event in Austin on February 27. But, before we (mentally) leave the Dallas event, we have someone we need to thank. Regan Wagh came through for us in a big way, “helping” arrange the venue for us at Liar’s Den, which, by the way, was a fantastic place to have the fundraiser. She’s wonderful! I’d also like to thank the amazing turnout from Jaime’s Dallas-based supporters. I got to see lots of our friends and their families (who, of course, are also our friends) that showed up. Jamie had a great time, and there wasn’t a walker to be seen. Jamie walked around the event meeting all of her fans. She’s really getting quite good at working a crowded room. Really, I just wanted to say thanks to everyone that helped make the fundraiser a huge success. So, thank you… and no, I didn’t win in beer pong. I’m a bit embarrassed.

11/13 - One Year Later

2009-11-13T22:36:00.003-06:00

One year has passed since Roni rushed Jamie to the hospital because she was having a severe asthma attack. It has been a long, arduous, inspiring, exhausting, heart-wrenching and difficult year for Jamie. Still, knowing how close we got to losing Jamie, we can’t be anything other than happy with where we are. Jamie wasn’t able to get out of bed from November until May (more or less) and now she is walking on prosthetics without any assistance. Remember how many posts were almost entirely dedicated to things like protein levels? Crazy, right? In December of 2008, we sent pictures to Houston in a last-ditch effort to get someone (anyone!) to give Jamie a second opinion about amputating her hands at the wrist and legs above the knee. No one would take her except for Dr. Lin in Houston. Then, in February, after Jamie took about 50 drives in the hyperbaric chamber under Dr. Lin’s supervision, we compared those December 2008 pictures with those taken in February and we saw the miracles that took place in the hyperbaric chamber. Now, Jamie is speaking about her experiences in front of large audiences and telling them about how far she’s come, and those same 2008 pictures are included in the video that plays before she speaks. Jamie has made so much progress, it’s amazing. After thinking that we were going to lose her whole hands, Jamie is writing and drawing better than I ever could.

We have a long way to go before we’re done – in fact I’ll be posting soon about the recommendations we got from Advanced Arm Dynamics about hand-prosthetics and the amazing fundraiser we had for Jamie in Dallas last weekend. She spoke at Shelton and at St. Michael’s. She’s been busy, and I don’t think she would want it any other way. She (and the rest of us) owe a big debt to everyone out there who helped Jamie get back to her life. This is our way of making sure that Jamie has the opportunities to return the favors. Thank you all so much for following Jamie’s journey. It has been… interesting, to say the least. Dramatic? Fun? I hope that, no matter how dark things got, we were able to handle things with a bit of levity and humor. That’s Jamie in a nutshell. She’s got grit but also has a great aura about her. She has embraced her new role and her new life and is really working it. She’s absolutely killing it at her speaking engagements and is making major strides (literally) with her physical recovery on a weekly basis it seems. Jamie is amazing and we’re so lucky to have her with us still. Thank you to everyone who helped us get here.

Speaking of, here is a picture of Jamie and Jen Griffin, who has been a major inspiration for Jamie:

11/4 - Jamie drives my car! (but first, some info about Saturday's fundraiser)

2009-11-04T10:48:00.007-06:00

I really want to tell you this awesome story about Jamie, but first, we need to talk about the fundraising event we’re having for Jamie on Saturday. At Liar’s Den, which, of course, is located at 2710 McKinney Ave, Dallas, TX 75204. It’s going to be awesome, and you’re going to wish you were there… unless you were there… then you’ll be cool. It’s on Saturday, November 7. It starts at 12 and goes until 6 pm, but most of the fun will happen early. We are planning three attraction/events on Saturday. All it costs is 20$. Here is what the 20$ gets you: you’re entered into a beer pong or flip cup tournament and you get all the beer you can drink. If you want to be entered into both of the tournaments, you just need to throw down another $20. Also, there are $3 wells during the event too. Oh, and there’s food too, but that’s from Liar’s Den. I’ve got a few details to add, below…

(1) Silent Auction – holy crap. There are so many items that have been donated for the event. A small sampling of items includes a slew of sporting event tickets (Stars, Mavs, Byron Nelson), hotel stays (Joule Hotel, for example), bottle service (Wish Lounge, PM Lounge), lots of gift cards to stores (Tootsie’s, Castle Gap), restaurants (Sullivan’s, Craft, Pappadeaux and more) and other things (iPod shuffle, wine basket… ). Sounds like a lot, right? Well, it is! And that is why you want to come, obviously!

(2) Beer Pong and Flip Cup tournaments – Not that I condone drinking games (I do), but we’re having a few tourneys set up, just for fun. The Beer Pong Tournament will start at 1 and we’re planning for a bunch of teams, so let me know asap if you and a partner want to play, so I can reserve you a spot! Only 32 spots in the beer pong tourney, max… we may break it down to a 16 team tournament if we don’t fill it up 32, so get in soon! As for the flip cup tournament, it will be 6 people a team and will start, more or less, after the beer pong tournament ends. That’ll be fun too. And the winners of the tournament each get a brunch at Blue Mesa Grill, which, as most people know , is an amazing restaurant in Dallas (and soon, Austin!). Like I said, above, we’ve received some amazing items!

So, yeah, that’s about it for the event, email me if you want to sign up for a beer pong team. My email is “my last name” at gmail.com (you should be able to figure out how to email me, I just don’t want any spambots to get my email…). So, email me with questions or with your beer pong or flip cup teams!

And now, a cute story… So, on Monday, Jamie drove again at occupational therapy with Bob. Later that day, mom told me that Bob told her that Jamie is cleared to drive on her own! This is wonderful and frightening news for everyone! Anyway, Jamie and I were at a calculus review session on campus (which, was an interesting experience on its own) and drove there. Afterwards, I mentioned to Jamie that I was really proud of her for being cleared to drive…

Jamie: What do you mean?

Nick: You’re cleared to drive? Bob said that you can drive on your own now.

Jamie: He didn’t tell me…

Nick: Oh, well he must have told mom then, and she told me… so, do you want to drive?

Jamie: Now?

Nick: Yeah, right now. Sound good?

Jamie: Sure!

Nick: You ever driven at night?

Jamie: No…

Nick: Whatever, drive anyway….

So, the drive went really well! Jamie is still relatively bad driver, so that’s great! We drove from campus to home in my car, not a long drive, but it was dark and student-filled, and she did a solid job! She drove in my car, used her prosthetics to push the pedals, and drove like normal. It reminded me of when she was first learning to drive… so, that’s scary. But, it’s a big hurdle for Jamie, and one of the more fun hurdles to overcome. Anyway… back to the party planning… hope to see you on Saturday!!! We’ll all be there… waiting for you! For now... more pics!

Jamie (as Charlie Chaplin), John Michael (as himself)

Jamie making the ugly-sad face at her reunion tour to Houston last week:

Jamie looking fierce for her birthday dinner..

See you Saturday!

10/27 - Walking into Houston and more

2009-10-27T12:31:00.009-05:00

Yesterday, Jamie, mom and I went back to St. Joseph Hospital in Houston, where we lived from December to the beginning of May. This was our first visit back to the hospital since we left to come to outpatient rehab at St. David’s in Austin. At the time, Jamie was more or less bedridden. She was able to get in her wheelchair with great effort, and she really couldn’t sit up straight for longer than a few minutes without getting sore or winded. She still had wounds that hadn’t closed, some MRSA on her right knee, and was still in isolation (meaning everyone needed to wear plastic suits and facemasks while in contact with her… well, we were supposed to…) It’s been a few months since that time, and, especially to the folks that hadn’t seen Jamie in months, everything has changed for Jamie. She left in a wheelchair and, yesterday, she walked on her own back into the hospital. She left with open wounds, and returned with barely a bandage on her. In May, Jamie had a few tufts of hair and nothing more, now, she has a cute little mini-fro. We’d worked to pass the Jamie Schanbaum Act (requiring incoming freshman and transfer students at all Texas colleges to prove they’ve been immunized from meningococcal disease) and attended a signing ceremony with Governor Perry. Jamie’s hung out with Ghostland Observatory, her favorite band, not once, not twice, but a few times… even getting an impromptu acoustic set in St. David’s by Aaron Behrens, Ghostland’s lead singers. She was on stage at ACL on the day before her 21st birthday. Jamie has reenrolled in UT-Austin and is back attending classes… you know what? You get the point. A lot has changed for Jamie and her fan club since we left Houston in May. The only thing that didn’t change? The weather in Houston: Still sucks.

So, the three of us woke up at the crack of dawn and drove to Houston yesterday to see all of our old friends. Ostensibly, we were there to see Dr. Smith, Jamie’s plastic surgeon who performed the skin graft surgeries for Jamie. We were really there to say hi and show off. Oh, and Uncle Dean came to film some interviews with Jamie’s team of medical folks. We didn’t get everyone on film that we wanted, but we’re planning on coming back to Houston to get the rest of the interviews. Anyway, there were a lot of tears shed by Jamie, mom and all the ladies we saw at St. Joe’s… not being sexist here, it’s just that I, Dr. Lin, Dr. Thai, Dr. Smith, Michael, Anthony, Cody, Luke and the other guys are really tough… and cry on the inside. Everyone was blown away by Jamie’s luxurious locks of hair and how well her skin has healed. The biggest treat was seeing Jamie stand - remember, no one in Houston had seen her stand before…. In fact, no one had seen her stand from November 13, 2008 to May something. Jamie took pride in walking up and down the halls of the hospital, and when she wasn’t walking, we pushed her around on her walker, which has wheels. Jamie probably gave 40 hugs while she was there… everyone was so happy to see her. It was like old times. Dr. Lin was the cutest. Apparently, he had spent the week before our arrival spoiling our surprise visit… though I think mom forgot to tell him it was a surprise. Anyway, there are a bunch of pictures at the bottom of the post, so check them out. Thank you to all of our friends in Houston for taking such good care of our Jamie while she was in your… care. Also, thanks for letting us barge in and own St. Joe’s for another day. It felt good to be back.

On another note, Jamie’s spoke at the Blanco United Methodist Church last weekend and rocked it. She wrote about this already, and no, I wasn’t in attendance, but I wanted to give some impressions that I’ve soaked in from everyone else. Jamie did amazing… I don’t think Jamie wrote that, but she did. Uncle Dean produced a video that played to the congregation prior to her walking/speaking on stage. This was the first time anyone had seen this video and it was very good… very intense, as most videos of Jamie tend to be. [Something I’ve said several times in the past couple of days is, “I can’t believe how normal we thought this was… this was pretty intense.” … we looked over some old pictures of Jamie’s legs prior to her surgeries… it was … graphic]. This was her first time to address a crowd of strangers and talk to them about her story. According to all accounts of the story, Jamie knocked it out of the park! She got a standing ovation from the congregation and then there was a reception in her honor afterwards, as well.

Finally, we’re getting close to our first big fundraising event! I’ll have a separate post for this, with all of the details and whatnot, but it’s looking to be a rousing success! It will be held on November 7, from 12p to 6p (duh), at Liar’s Den (2710 McKinney Ave, Dallas, TX 75204). We’ve received commitments for a lot of big time auction items, some of which I’d like to be on the winning end of (for example, we’ll have some amazing tickets to the Mavericks, Stars and Byron Nelson). We’ll also be having beer pong and flip cup tournaments, with the tourney winners getting some actual prizes that they’ll want to compete for. More on this soon, but just mark this on your calendars and spread the word!!

OH! And, be sure to check out this amazing post, written in the Texas Jewish Post this past week and then, mom wrote a piece that was published today in the Dallas Morning News' mom's blog... you know, because she's a mom. Wow, that's a lot of links in one post... now for some more pictures!

Jamie and part of the Hyperbaric team:
Jamie and Mom hugging Allison and Michael:

Jamie and Dr. Lin:
Jamie and Waddell:
Jamie and Luke:
That's all for now!!

10-20 Thanks Blanco

2009-10-20T00:12:00.001-05:00

Hello again! It’s Jamie with another blog post. I’m writing to you now, to report my trip that I had when I visited the Blanco United Methodist Church this past Sunday. I went to Blanco to give my first speech about myself and how my life is going today. When I arrived my Papa Gene and Aunt Betty greeted me. When we walked in I met Ken and Margo who were running congregation. The Sunday ceremony ran like any other ceremony and about halfway I took up about fifteen minutes to speak. I didn’t however, prepare a speech, but at the same time, I wasn’t nervous. I don’t know why I wasn’t nervous; after all it was my first speech. I guess I just knew that everything was going to go smoothly. So the halfway marker came up, and Ken introduced me with a video, that my uncle Dean made, and then I got up in front of everyone to tell my story. Let me add, that it was my fourth day or so, to be walking on my own without a walker. So I stood up and walked by myself up to the front. I definitely feel as if I did touch those that were listening, and I felt a whole great deal of satisfaction after I gave my speech, as if this is my new calling. Standing in front of a microphone was pretty easy, and I did love it. People even did come up to me and told me that I had good public speaking skills and that I spoke very well in front of everybody. It was definitely another good day in my life, and I do know that there will be more speeches in my future.

10/6 - Jamie's Birthday and ACL, wrap-up

2009-10-06T16:42:00.002-05:00

Happy Birthday to Jamie! Jamie turned 21 on Sunday, and she really started her 21st year with a bang! I guess it would be more accurate to say she ended her 20th year with a bang, because, as promised by the boys from Ghostland Observatory – Aaron and Thomas – Jamie was dancing on stage at Austin City Limits (ACL) with Ghostland. OK, so she wasn’t, like, front and center, on the stage, but she was only a little to the side, where the band’s family hangs out. It was an amazing show!! Me, Jamie, Roni, mom, Becca and Cris got to go backstage, then on stage, at the AMD stage on Saturday night. That was the second largest stage at ACL, after the Livestrong stage, and the amount of people watching Ghostland blew me away. However, the real surprise came at the end of the show… up until the finale, it was your usual Ghostland Observatory concert (meaning, it was an awesome, frenetic, non-stop electronic rock, light show…), but, unbeknownst to the crowd, the University of Texas Marching Band was sitting backstage, right next to Jamie and her crew. When Ghostland started one of my favorite songs – And The Band Marches On – the UT band assembled on the stage and started to rock along with Thomas’ beats and Aaron’s vocals. It was pretty great and the crowd was really into it. Afterwards, Jamie got some quality time with Aaron and Thomas, and then said so long. We’ll see them again in Dallas on Halloween. All in all, Jamie had a fantastic birthday weekend. We are so happy we got to share it with so many of Jamie’s friends… frankly, we’re just happy that Jamie is still with us, enjoying life.

You may have wondered how in the world Jamie could be getting around at ACL. Ordinarily, Austin City Limits is very difficult to traverse. There are thousands upon thousands of people, trying to get from stage to stage to see their favorite performers (I think there were a total of eight stages), and everyone traverses the same routes, more or less, across Zilker Park. Well, ordinarily, it would be tough for Jamie to see her favorite performers, and it was made even worse by the much-complained-about rainstorm that hit ACL this weekend. So, it was muddy. Very muddy. So, presented with all of these challenges, how did Jamie fare? Pretty well! Jamie drove around the park on a motorized scooter provided to her by a friend of Jamie’s and Cris’ family, Tommie. This scooter was awesome. Jamie got through the crowds and the mud with ease…. And if that doesn’t sound awesome enough, Jamie was able to take advantage of the “special access” section at each of the stages. These sections were immediately in front of the crowds, in a sectioned-off area that gave Jamie access to some of her favorite acts. She’d have to tell you more about who she was able to see. I’m not cool anymore, so I wouldn’t be able to tell you half of their names. I mean, she saw Grizzly Bear and Michael Fonti (I think that’s how it spelled)

Anyway, that’s all for now. Mom and I are off to Brownsville for a few days to retrieve some of her old belongings from the Valley that we haven’t been able to retrieve since November. See you in a few days!

9/30 - Jamie is driving; New hand prosthetic company; ACL; Jamie's Birthday!

2009-09-30T10:05:00.003-05:00

I can’t believe that its almost October. So much to do in the coming months.

First, we’re planning two benefits for Jamie in the next few months. The first one will be on November 7th at Liar’s Den, on McKinney Ave in Dallas. It’ll be during the day and a more casual affair than the one in February in Austin. Think kegs of beer, some fun music and general carousing. There will be a silent auction, beer pong/flip cup… all-in-all, it’ll be a wonderful time. $20 suggested donation, but I’ll have more instructions on the buy-ins for the competition in the near future. The other, bigger event (more of a gala) will be on February 27th at St. Michael’s in Austin. Think emcee, sport coats and good food.

So, onto the updates you’re looking for... but before that, a magic trick from Jamie:

... Nice...

1) Jamie’s back on the road! Bob, Jamie’s OT, got her back into a car for the first time since November 2008. Jamie and Bob drove from St. David’s to our old house on 48 1/2 street to the Hancock Center parking lot, and back to our current house in Austin. For those of you not familiar with Austin, that’s about 2 miles, total. She drove using hand pedals/brakes that are located next to the steering wheel. According to Bob, it wasn’t too hard for her to drive. This was a week or so ago, and Jamie hasn’t driven since, but it’s good to know that Jamie can still drive well… or as well as she could drive before… which really wasn’t that well, but you get the point. We’ve been discussing what kind of car to get Jamie when she’s fully able to drive again. Something economical, with good trunk space for the assistive technology she’ll be reliant on. I’m not good with cars or else I would start listing… I remember that the Honda Element was one of the cars discussed, but that’s about all I can think of for now. Here's a video (with bad sound) of everyone talking about Jamie driving... Sake is there too:

2) One of the biggest developments in the last few weeks is our new relationship with Advanced Arm Dynamics. We were introduced to Advanced Arm Dynamics (AAD) through one of our new doctors, Dr. Sharma. Dr. Sharma is a hand doctor, like Dr. Boutros. (Interesting note, Dr. Sharma was partnered with the plastic surgeon who, on December 6, recommended that we amputate Jamie’s arms at the wrist and her legs above or at the knee… he isn’t partnered with that doctor anymore). Dr. Sharma is wonderful and is happy with the work performed by Dr. Boutros. He isn’t planning on too many more surgical procedures on Jamie, if any, in the future. OK, there will be some, but nothing too extensive. Also, we’re glad to be with him because he is so close and has this good relationship with AAD. So, I missed all of the early appointments with Dr. Sharma, so I can’t tell you too much about what went on there, but at one of those meetings, he recommended that we look at AAD… then he set up a meeting with one of AAD’s reps, who was driving down from Dallas. Well, we were BLOWN AWAY by the things we were shown by Bernie, the rep for AAD. Bernie, as you can tell in the videos, is an amputee; he became an amputee after being a victim of a random drive-by shooting. His hand was messed up badly… he showed us pictures of it. Here's some video from that meeting:

As you’ll see on the video, the technology that AAD is developing is amazing. AAD is the only company in the country (world?) that works exclusively on upper extremity prosthetics , and they have the results to prove it. The demo model that he showed to me, mom, Jamie and two other amputees that were in the same meeting is representative of the kind of prosthetic Jamie will be outfitted with. The prosthetic will consist of a glove or a socket that Jamie’s hand will fit into. On the inside of the glove will be electronic sensors. These sensors will sense when Jamie’s arm/hand muscles move and will move individual fingers according to those motions. There are two sensors per finger – one contracts the finger, the other releases it. It is pretty damn amazing. Because Jamie’s hands aren’t uniformly shaped, there may be some fingers that this doesn’t apply to (Note: last Monday, at the AAD mothership in Irving, they told Jamie exactly that. So, on some of her fingers, she will have the sensors/individual fingers and then, on the fingers were there is less available bone, there is an extremely new technology that is in place that would require some pins to be inserted where the finger would be, and then a prosthetic is put on that finger, and then you rely on electronic sensors to move the finger… as you can see, I barely know what is going on with this yet,… but I will…. Sometime soon. (Btw, that picture is from Jamie's PTOT session following our meeting with Bernie.... he came to St. David's and talked with Bob and Kerry about what they could offer for Jamie. Getting advice from our trainers has proven invaluable, because they know the right questions to ask and they can tell help nudge us in the right direction).

3) On Saturday, we will all be going to Austin City Limits (along with the rest of civilized society, apparently), but we’ll be going in style! (for a few reasons) First, Aaron Behrens, the lead singer in Ghostland Observatory that came to visit Jamie in the hospital at St. Davids, offered to give Jamie the same side-stage treatment that we received in July at the New Braunsfels show. Aaron and Thomas, the other member of the band who also visited, have been so great to Jamie… really, some of the best moments we have had following Jamie’s illness have been brought by these two guys (and by Cater and Becky, who really connected us with the Ghostland boys). So, we’ll also be cruising in style because Jamie will be driving a scooter that was originally gifted to us by Tommie Leon, a friend of Jamie’s from high school. That will be pretty cool. Also joining us backstage will be Roni, because she was given all-access passes because the group behind ACL selected Roni’s T-Shrit design as one of the official ACL shirts this year!!! Very exciting news, and very cool that she got backstage passes for her work. Good job Roni!

4) It is Jamie’s 21st birthday on Sunday! We are so grateful that Jamie is still around to celebrate this landmark occasion. It was almost a year ago that we very nearly lost her. Things could have been much worse for her and for us, so considering all of the things that didn’t happen to Jamie, I’m very happy. We love her so much and she continues to make such amazing progress. :)

Finally, we had a great weekend in Dallas to celebrate Yom Kippur (the Jewish day of atonement) with the family. It was Jamie’s first road trip since she, Michelle and I drove from Houston to Austin in May. It was great to see everyone. Jamie visited Shelton, her old school, and some of her old friends, including the Applebaums. There were some people that Jamie wasn’t able to visit (Prescott’s, we’re looking at you!) but Jamie is planning on several more trips in the near future, with Halloween looking to be the next trip. Thanks for all of your support and we’ll talk to you soon!

9/25 - Tailgating with the Happy Hook-ers

2009-09-24T11:04:00.007-05:00

Last week, most of the Silva family – that’s mom’s maiden name, of course – went to tailgate together before the Texas vs. Texas Tech football game with our tailgating group, The Happy Hook-ers. Cute name, right? Mom has been tailgating with these guys for a while now, and I’ve only joined up as of this year. They’re a big group of around 80 people (without guests), but that number was wildly inflated for the Tech game. So, the two founding members of the Hookers – Kim and Diane– approached mom with an idea: they wanted to donate the proceeds from the Texas Tech tailgate to Jamie, and they’d also set up some donation buckets at the tailgate as well. Then, Orlando, the owner of Taco Shack, got in on the action and offered to have some donation buckets stationed at the local Taco Shacks here in town. (There are a lot of Taco Shacks, and, in all seriousness, they are awesome… maybe the best in Austin and DEFINITELY the best place to get good tacos quickly)… Anyway, so, they set up the donation bins for Jamie, and I was expecting some money, sure, but not what we ended up getting… we were absolutely blown away by the generosity of the Happy Hookers and their guests.

Jamie had a good time at the tailgate too. This, I think, was the first major public event that Jamie had attended with her prosthetics on and while she was walking around. She didn’t have her wheelchair at all. Definitely the first time for that! What’s neat was that once the tailgate got going, she lost some inhibitions and she started to walk a few steps here or there without support from the walker or from anyone! That was amazing to see. And it was seen by a lot of her Silva brethren – Nicole (nee Silva) and Stephen Lahti; Zeke and Marc Silva (they’re brothers, FYI); Cindy, Joe and Chris Martinez; Letty and Ramon Fernandez (mom’s/our cousins), and we, the Schanbaums… so, when you think about it, I guess there weren’t too many “Silvas” there… but still it was a good time. And we can't forget about Jamie's friends that showed up, like Molly and Michelle and Jeff... also some of my friends showed up too, which is nice... thanks.

There was also a reporter from ABC there… I think he may have been a journalism student from UT who was working with ABC… I don’t remember, you should ask mom… but Jamie interviewed and her story was on the news on Sunday morning… mom says that it is on the internet, but I can’t seem to find it anywhere. When it pops up, I’ll post it. Anyway, that’s all for now… gotta get some stuff done before I leave for Dallas – time to go to the fair and celebrate Yom Kippur with the family in Dallas!

9/17 It's Jamie

2009-09-17T22:36:00.000-05:00

Hey everyone! Jamie - checking in to keep you posted. Last weekend I had the pleasure of meeting Rayna DuBose. Rayna is another survivor of meningococcal meningitis who lost her legs below the knee and up to her mid forearm. I met Rayna and was amazed at how well she was able to move around. Let me add that she was wearing high-wedged heels with her prosthetic legs! We met because she was giving a speech in San Marcus at Texas State. I didn’t know what to except, but maybe an auditorium? But instead they had a huge room with round tables with about 2-300 people, who all were fed food. Rayna was a huge inspiration. She had an amazing way to capture the audience’s attention. They were all laughing and were all moved by her story. She was such a huge inspiration to me, and showed me that this is something that I could do. I met so many people and had a great time at Texas State. Who knows what the future holds for me.
The other day in PT/OT Bob took me out driving! Yeah, that’s right! Bob and I hit the road. We started off in the Hancock center, first just getting used to driving with my hands. But once I got used to it, we went through the Hyde Park neighborhood. Not quite like old times, but it will be later down the road. No pun intended. On another note, in my last PT/OT session, we met a prosthetist that specializes in hands. He brought down this new hand that is so new, that there is no news press on it yet. It was basically the opening of the iphone for hands. They’re luckily located in Irving, Texas. I say luckily because they are literally the only ones with this prosthetic. We’re having our evaluation two Mondays from now, and I think that I might get them in maybe two months from now. I’m so excited!!
I know it might be a little late but it was recently my mom’s birthday on September 4th, and I just wanted to mention how grateful I am to have her in my life. Life can get pretty challenging, but this year was especially difficult on everyone. But my mom was there for me, just as much as the sun was there for earth. And I am, needless to say, thankful for what she has done for me. And I love YOU mom!

This is Jamie, checking out!

9/11 - More videos and pics of Jamie!

2009-09-11T14:28:00.004-05:00

Hey everyone! Look at me, I'm actually posting when I said I would. First, I'll hit on a few of the developments that have happened (or are happening) from the past few weeks.

First, Jamie is spending a lot more of her time walking around on her prosthetics. I'd say that she has her legs on 25% of the time now. She also has a fun rolling-walker that she can use, which doubles as a seat for her. It's one of those cool walkers that you see people use at grocery stores and whatnot. Very useful. Even though her residual limbs are still pretty sore when she walks around, she's getting more and more comfortable. In fact, those little stumps are getting littler. As had been told to us many times, her stumps are shrinking pretty quickly. She'll start the day wearing 6-plys of socks on one leg, and then, by the end of the day, she'll need an additional couple of plys. (If you aren't up to speed on the whole "6-plys" conversation, on each of her stumps, before it is slid into her prosthetic, Jaime puts socks on. But, unlike regular socks, these socks are numbered to indicate how thick they are - 1-ply for the thinnest, 3-ply, 5-ply are thicker. So, as Jamie's legs shrink throughout the day and/or the week she will adjust her socks accordingly... so that's some fun info about socks...)

Here's another fun little update. The kind folks at Taco Shack in Austin (are they elsewhere too? they should be) - whose owner is a member of our tailgating group, the Happy Hookers - has offered to put donation jars in all of his stores, with the donations going directly to Jamie!! Pretty wonderful, right? I'm not sure how long they will be in the stores, but they will be there until at least the Texas Tech game on the 19th. We are honored by these kinds of efforts being done on Jamie's behalf. Thank you so much!!!!

(Also, did you notice Jamie has been posting lately. I LOVE IT!)

So, here's the videos I promised after yesterday's post took way too long to upload:

First, some leg presses -

Next, some balancing exercises:

And now, Jamie walking away from me... look how far away she is!

That's all for now! Talk to you all later!

9/10 - Videos and pictures from Jamie's past week!

2009-09-10T13:23:00.005-05:00

Hi everyone! It's been a little while since I've posted (why do I feel like that is my customary introduction, now), but to make up for it, I'm going to post some pics and videos... I figure that everyone will like this more than reading, anyway. (For those of you reading on facebook, now would be a good time to click the link I pasted above so you can see the videos/pics). So, without further ado:

This is Jamie riding a tricycle yesterday. Mom is taking the video and that's Bob, her OT helping her along. Pretty neat stuff, huh!

Here's a video that everyone on facebook liked from last week. This is Jamie walking without supporting herself on the parallel bars:

I intended on posting some more videos today (like of her doing leg presses or of Jamie doing some more balancing exercises) but DAMN, these videos take forever to upload and now Jamie's PT session is over... so tomorrow, I'll post some more... promise :)

september 1, 2009-can't believe its september

2009-09-01T18:23:00.000-05:00

Hey viewers, this is Jamie again with another blog post on what has been going on recently. In PT/OT I have been making huge progress! I have gotten to the point where I can walk with one hand on the parallel bars, and onto to walking with only placing my hands in someone else’s in front of me! With no walker or anything. Kerry, my PT, and I have been discussing how I should move onto a 4-wheeled walker. It’s the walker that looks like an upside down “y,” and has a little basket with a seat on top of it. With this 4-wheeled walker, it will completely eliminate the wheelchair. Thank goodness. But besides that, I have become mobile while standing, with Bob (my OT), by bending, turning, shifting weight, reaching, grabbing, etc. It is really exciting to see what new things I can do each day.
On Sunday the family and I went to Fonda San Miguel, to have a nice Mexican brunch on the day of wicked, the musical(which was awesome). I bring this up because I went in with no wheelchair. I even walked around the buffet line. My family was really proud of me…I could tell.
The other week I also revisited my high school, St. Michaels. It was truly amazing to see some of my former teachers, especially Mrs. Prior! I have always loved her and her spirit, and reuniting for only a minute’s worth, really did highlight my week. At St. Michael’s we discussed the gala that would take place in November that would be in honor of my name. I am really excited for that to happen. This event will also be a whole year after being admitted to the hospital. Crazy how much can happen in a year.

Alright viewers, I’ll keep you posted on what happens next.
Tah tah

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

2009-08-24T13:31:00.007-05:00

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

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

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

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

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

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

It's me, Jamie!

2009-08-15T21:33:00.000-05:00

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

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

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

8/7 - Jen Griffin comes to visit

2009-08-07T12:46:00.002-05:00

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

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

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

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

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

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

7/30 - Walking Around and Jamie's New Marching Orders

2009-07-30T11:32:00.008-05:00

... and we're back!

So, I guess I should start with the obvious news. Jamie is really progressing on her prosthetics. We've sorted out, for the most part, the problems she initially was experiencing with her legs (the wounds that weren't closing [still open, a bit, by the way], the knee injury from before her illness that made the socket fit funny, etc.) are mostly non-issues. When she's at her PT sessions at St. David's (seen, to the left), she's started walking on the parallel bars... going back and forth and repeating. On Monday, when she was at PT with Roni, she walked back and forth on the parallel bars 4 times. That represented a huge achievement for Jamie. One of the more recent posts on this blog has a video of her walking a few steps for just a minute or two... so, considering the huge leap from that earlier time to Monday's walking with the parallel bars, I thought things couldn't get much better. Turns out I was wrong... Jamie's trainer, Kerri and I were watching Jamie go through the parallel bars a few times... I wouldn't know how many times because I was out of the room on the phone... but when I got back (Jamie: "Finally! There you are.") Jamie had already been up on her legs a while, but she wanted to show me more. I was amazed to watch her walk back and forth a few times, because I hadn't seen that yet... then Kerri asked me if I wanted to try holding Jamie up while she took steps. This required me to stand in front of her and, with my arms bent at the elbow, I supported Jamie's weight on my forearms while she walked towards me. This was adorable, of course. Then Kerri chimed in with, "Do you guys have a walker?"... "Um, nope."... "Here, let me get one then." So, Kerri went and got us a walker and off we went. This is what it looked like, more or less:

No wait... that's exactly what it looked like. Anyway, in case you want some pictures of your dedicated author standing next to his "little" sister, here ya go ==>

Anyway, so as you could see, she walked around a whole bunch. Bob, her Occupational Therapist showed up for the end of the PT session, which is always before her OT session, and when Jamie was done walking, he made her walk all the way back accross the room to sit in a real chair, where they did some weird wax-related procedure, pictures are over there, to the left. The wax was fun... everyone loves playing with wax.... but what's really interesting is that this was the first time Jamie has sat in a "real chair", at least according to her, since November. So, that was a fun day at OT/PT... also, we got a walker yesterday so Jamie can show everyone her new walking skillz....

... and so she can practice walking a lot more while at home. That's part of the new rules here at the Schanbaum. According to her OT/PT guys, the new "default" will be that Jamie wears her legs for most the day and then can take them off when she's uncomfortable... but she'll have to put them back on shortly. This is a big change from the old rules - where Jamie wore her legs sometimes, but most of the time she didn't wear them. In fact, Jamie is becoming much more independent. Instead of asking us to do things for her or push her somewhere, she's going and doing it herself... or at least trying to do it herself, which is pretty much what she should be doing now anyway. It takes some getting used to on our part as well, this whole "independence" thing. Its not an unusual occurence for Jamie to be seen using a fork on her own, attempting to put things in her webspace, and while it may not work out as she hoped (at least not yet), I'm so happy to see her trying new things...

That's about all I've got to say... so, just for fun here's a picture of Jamie with Daisy Mae, one of our kitties.

Meow.

7/19 - On Stage at the Ghostland Observatory concert!

2009-07-19T15:31:00.013-05:00

Well, that was pretty terrific!
Yesterday, Aaron Behrens and Thomas Turner (above left and right, respectively) - the two men who perform for thousands upon thousands of fans as Ghostland Observatory - outdid themselves again and gave Jamie and her friends (and mom, and Roni and me) some memories that we're unlikely to ever forget. To give everyone a brief introduction, through a series of connections that we luckily stumbled into, Aaron and Thomas each came to visit Jamie in the hospital when she was still doing inpatient rehab (more like, IMpatient rehab... HA! I'm sorry...) at St. David's in Austi n. You don't believe me?

See? Told you.

<== Thomas and Jamie

Sarah, Jamie, Aaron, and Michelle ====>

Anyway, as I was saying, this is Act III in their gift to Jamie. When they came to visit, Jamie and her friends told the guys that they would be attending the Ghostland Observatory shows in New Braunsfels as well as the one at Austin City Limits on the day before Jamie's birthday. They both said, basically, "You're coming to our shows, well, hey, lets get you backstage, it'll be an awesome time!" To which, we all said, "uhhh... ok." Fast forward about two months and its July and we're getting ready to see them play, up close and personal... and when I say upclose, I mean it. Check this out:

(Special thanks to Roni for taking all of these amazing shots... once Roni selects her faves, she may post some more up here.)

Anyway, yeah we were super close. But it wasn't just a fun concert, it was a really great day. Most of Jamie's best friends came over to the house around 4 to start putting glow-in-the-dark paint and stickers all over their bodies. There were a lot of us and we piled into two cars and headed to New Braunsfels. We got to the venue around 6:30 or 7 and were absolutely shocked at the set-up provided by the Ghostland guys. When we got there, we met Brian the stage manager and he told us to make ourselves comfortable and to feel at home. He also told us that they had cordoned off an area on the back corner of the stage for us to sit in and that if anyone gave us any stress, to come find him and he'd tell them where to stick it. So, we were elated. We knew we'd be getting backstage passes (though we didn't believe it would happen for certain until we arrived there... didn't want to jinx it), but to actually be on stage is totally different. Here's the view from our first sitting area. It was probably about 8:00 when this picture was taken -

Pretty adorable, no? (Also, that's Roni's friend, Bailey. "Hi, Bailey!") Too bad KC had to work in Dallas... :( Anyway, then we came to find out that our little area would be a little out of the way of the show, and that Thomas and Aaron wanted us to have the best seats in the place... right up front. Actually, take another look at the picture, above, and see where those two horizontal cases are? Right behind the guy with the plaid shorts? That's where we were standing... it was awesome.

There was some time to kill before the show got going, and Aaron and Thomas each came up to us to say hello before the show. That was really nice, and I love when they do that. Here's a picture of Aaron saying hi... I couldn't find one of Thomas saying hi where someone didn't look hilariously terrible.

So, the show went on. It was the best concert I've ever been to. Roni, mom and I had never been to a Ghostland concert before, but it was amazing. The girls (and Andy) felt right at home. We are so grateful to these guys for going out of their way to make Jamie's recovery process a memorable one for all of the right reasons. This is something that she and her friends will never forget.

Here's a few more pictures that Roni took during the show... Just an amazing night overall... now back to work!

Awesome.

7/17 - Standing tall... almost as tall as me...

2009-07-17T17:04:00.005-05:00

So, I was talking today to Jennifer Griffin about scheduling her next visit to come talk to Jamie... you remember her, right? We've been in contact with her since our days at Seton hospital in Austin. She's been a source of inspiration for Jamie and our family because, although she didn't contract the meningococcal bacteria, she became severely ill over two years ago. Her illness required the amputation of her legs below the knees and the removal of all of her fingers. She's overcome so much and done it all with grace and a smile. Very nice.

Anyway... so, I'm talking to her outside of 24-hour fitness, where mom is signing herself up for a gym membership (and getting Roni and I 24 day free passes), and she says, "... and you're doing a great job keeping up on the blog." I had actually thought she'd say something to the contrary, like "Where have you been?" I told her, "I'd type more, but there aren't really a lot of significant events to type about... I guess I could type about the lack of activity, and I probably should, but..."

So, be careful what you ask for, because there just happens to be some cool things to show you from today.

First of all, when we got back from 24-hour fitness to pick Jamie up from her PT session, she had something to show us... do you want to see?

Pretty cool huh? Yeah, I took that on my iPhone... She also stood for over 5 minutes, which is also a record for her. This progress is the result of a few things falling into place. First, JP, the man behind her prosthetics, tweaked her prosthetics so they fit her a bit better. She was having discomfort due to another problem that popped up... Apparently, when Jamie fell off of her bike in October, she dinged up her knee pretty bad. This caused her patella to list to the side a bit, which, in turn, caused her some discomfort when she stood on her prosthetics. So, Jamie and her therapists (and soon, you can add Nick and mom to the list of people) are helping Jamie massage her knee so that her patella realigns itself properly.

Jamie felt pretty great about her effort today. She felt even better about what was waiting for her at home... her new wheelchair! Finally, Willie the wheelchair guy (the Schanbaums are good with coming up with names for people... Dr. Bummer, JP, Dr. Foot Doctor, etc.) came by the house to deliver our specially customized wheelchair. Every aspect of the chair is exactly as Jamie and mom wanted. This includes, of course, the sparkly wheels that shine when they're in motion. I'll capture some video of this and send it along. There's still a few things that need to be added to the chair (e.g., the knobby wheels that are designed to allow Jamie to stop her chair easier, since, you know, she doesn't have fingers...), but it looks like its good to go for the next big piece of news, which is that...

Tomorrow, we see Ghostland Observatory perform!!! Lots of pictures of that are sure to follow. Have a great weekend, everyone!

7/10 - Checkup visit in Houston

2009-07-10T10:14:00.002-05:00

So, things went very well in Houston. Mom, Jamie and I went to visit Dr. Boutros yesterday in order to follow up on last week's hand surgery. As reported by mom, the main focus of the hand surgery was to cap the exposed bones on Jamie's right hand, do some touch ups on her left hand, and, finally, expand the web space on both of her hands so she will be able to grip things better.

Ever since last weeks surgery, Jamie has had her hands wrapped up so thoroughly that they look like two of those turkey legs you can get at the fair. She's been pretty anxious to get her hands out of those things. So, to no one's surprise, Jamie unraveled her own hands before Dr. Boutros came into the room to see us. When Dr. Boutros came in, he was very happy with what he saw. The webspace on Jamie's right hand is pretty big. Big enough to hold a bottle of... soda... if she'd like to. Its still pretty tender, so there won't be any of that nonsense going on anytime soon, but it still looks pretty likely. Her index finger on the right side also looks pretty good. We didn't lose that much length on it at all. The rest of her fingers look good. As of now, the index and middle fingers look like they would fit nicely into some of those Pro-Digits we keep talking about.

So, we're happy with these results. Also, Dr. Boutros told us we didn't need to see him again for another 6 months. This means that in all likelihood, Jamie won't be having any surgeries until December. That's pretty cool. Also, Dr. Boutros said that, except for some xeroform she has to wear in between her right thumb and index finger, she doesn't need to keep her hands wrapped up anymore. They're to be cleaned with soap and water and lots of moistureiser. Not sure why, but it sounds like it makes sense.

The next steps, as far as her hands go, will be to get used to using them. They're still very sensitive. But that's how its been with everything. Later today, mom and Jamie are going to see a doctor about her right knee cap. Jamie says it is still hurting her a lot and its also not closing like the left one... the surgery on her right knee went well, but that doesn't mean that her skin is closing up like we'd like. So, if the MRI says something interesting, we'll have another problem to deal with. If not, then we're going to start moving forward with getting used to her prosthetics more. Thanks for all the support, everyone! We really appreciate it!

Surgery – YUCK!!! KC’s 25th Birthday – YEAH!!!!!!!

2009-07-07T19:38:00.002-05:00

Well, we planned on going to Houston the day before Jamie’s surgery and that was a good thing because as it turned out we got a call from Dr. Boutros’ office that we had a pre-op appt with him Tuesday at 2:30 – surprise! So Roni, Jamie and I left early enough to get to Houston, check in to hotel and get to the appt – KC was driving in from Dallas. So appt goes well – we talked about what to expect, the usual orders were given along with all her necessary prescriptions. So the second surprise – surgery is scheduled for 1pm, not 11:30 as we thought and instead of having to be at surgery center at 9:30 am we didn’t have to be there till 11:am. In reality it’s not really a surprise things happen like
that in Doctor World.

Back to Tuesday - We go back to hotel which by the way is gorgeous, within blocks of surgery center (with car transportation to center), a well needed treat for Jamie and perfect place to celebrate KC’s bday – just me and my girls-fun and a good distraction for Jamie to keep her mind off her surgery. All us girls played, ordered in and watched TV
in our well equipped handicapped room.

Day of surgery the girls slept in awhile probably to avoid eating since Jamie couldn’t eat therefore we didn’t eat. We went to the surgery center at 10:30 –remember we had to be there at 11 – and guess what doctor had an emergency and is running late – Surprise!!! Jamie was finally rolled into surgery at 2:30. In the meantime KC and Roni headed back to hotel to enjoy some birthday R & R. Approximately 3 hours later Dr Boutros came out of the surgery room “Everything went well!” That’s Dr. lingo for it’s all wrapped up come back and see me in a week and we’ll do the unveiling. Seriously so much detail was addressed to both hands, almost too complicated to write everything down. Both thumbs had exposed bones so filling down of bone was necessary then skin was pulled up to cover wound. Index and middle finger on right hand also had exposed bone and were also filled down and skin was pulled up and over all requiring only 1 stitch so as not to upset blood flow. The “Z-plasty” was not done because there was not enough separation on her web. This procedure can be done once and only once so Dr. Boutros had to do a skin graft (skin came from just under her upper arm). Z-plasty will be done at a later date – the further Jamie can spread her web the better. After a short time in recovery we were driven back to hotel, which was around 7. Needless to say we were exhausted and hungry.

To my amazement Jamie had a comfortable night all made better having her sisters by her side. But why should I be amazed Jamie is an amazing girl. Watching her being poked and prodded again brought back some uncomfortable memories. She’s slowly coming out of this nightmare and hopefully soon all this will just be a bad nightmare.

Jamie continues her therapy 3 times a week with 2 of the most incredible therapist out there – we’re so lucky to have them. Jamie is slowly getting up on legs – still a little painful and uneasy as no one can imagine. Today we went to visit with a new orthopedic doctor here in Austin. It’s important that we have someone to look over her case and make sure all is well and we really like him, too. Adjustments are already being done on her prosthetics – for instance 13 plys of socks are used on the prosthetics for a comfortable secure fit which means that her legs are shrinking (as expected) and hopefully soon we will be getting permanent legs. Jamie was not too crazy about her new height so she has opted to decrease it by a half inch.

Finally, we’re headed back to Houston on Thursday for the unveiling. As Jamie says it – I will be looking at the hands I’ll have for the rest of my life. But it brings joy to my eyes to see her beautiful face, her fabulous new hair do, they way she loves on her animals and the way she talks about the future. You see there is a future.

Thanks to all for your love and support – stay tune. I will fill you in on my wonderful experience at the National Meningitis Association Conference where I met some wonderful people.

Surgery Wednesday!

2009-06-30T21:47:00.002-05:00

This update is a little late in the making, but Jamie is having her first major surgery in a while tomorrow. As we speak, mom, Jamie, KC and Roni are in Houston together having fun at a hotel the night before the surgery. The surgery takes place tomorrow at 9am... which means everyone needs to be at the hospital at 7am... which also means that Jamie can't eat any food after midnight or so... and it also means that the surgery probably won't start until 10am. Even though we haven't had a major surgery in a few months, this seems like very familliar territory for the family. I'm sure that mom will have no trouble jumping through all of these familliar hoops.

Here's the deal with tomorrow's surgery. Dr. Boutros will be covering the bones on Jamie's right hand with skin taken from... somewhere... though I know it isn't a traditional skingraft and I also know it isn't going to be a flap procedure. Jamie's hands will be free in the next couple of weeks, unlike last time. Also, both of Jamie's hands will have a procedure called a "Z-plasty" (really) and the purpose of this surgery is to increase the amount of gripping ability of both of her hands. So, I guess both of her hands will be hurting for a little while going forward... which is why we're glad that Tommie (last name withheld/forgotten temporarily) is letting us use an electric scooter he has, so Jamie won't have to put pressure on her hands when they're still sore from the surgery.

Anyway, wish us luck and keep Jamie in your prayers. We're very hopeful that these procedures are going to be huge successes, like the last one was. I wish I had more to add, but, as you could tell from my description, I don't know as much about this surgery as I have about the past ones... So be sure to check back in soon for an update on how things went. I'm sure they went really well.

PS - I'm in Dallas because I'm going on a bachelor party weekend, starting tomorrow. So, yeah, I'm missing Jamie's surgery, but, in all fairness, I had plunked down some money on this trip... I was almost in more trouble for missing KC's birthday, which is on July 2nd. Happy Birthday KC!

6/24 - Rockadoodle and the Dueling Narwhals!

2009-06-24T13:53:00.007-05:00

Jamie: "Neh neh. We should get the drums for Rock Band."
Nick: "What?!?! You're ready to play? I'll be right back!"

[A trip to Best Buy and the Jym (that's what the gym at the JCC is called, by me) later...]

Sorry about the picture quality... Jamie and I had just finished watching the video from The Ring, so our pictures are sort of out of focus. Yeah, so Jamie and I are back, finally, to playing guitar hero... that was our favorite thing to do ever, and even though Jamie is relegated to our permanent drummer/vocalist, it was SO much fun playing guitar hero with Jamie again. It was even more fun once we disabled the drum foot pedal. [Code = Yellow, Green, Red, Blue(4), Red]. She can't really use the foot pedal yet... even though the wounds on her knee are healing fabulously, she's still being asked to only wear the legs for one hour blocks to get her used to the weight of the prosthetics... Once that's taken care of, she will have to use the foot pedal.

So, if you're curious, Jamie and I used an ACE bandage and this super-sticky stuff called "painter's tape" (Note: It's not tape... it's also probably not called Painter's Tape), and bound her hands to the drumsticks, with the sticks positioned as they otherwise would be... and, then, voila... I keep telling everyone that our band's name should be "The Dueling Narwhals" because each hand looks like a Narwhal.... but I haven't met anyone else who knows what a Narwhal whale is. A Narwhal Whale, according to the experts, is a unicorn/whale hybrid. See that picture over there [====>]? That's a Narwhal, folks.

And, now, ladies and gentlemen... I'm pleased to present... Rockadoodle and the Dueling Narwhals!!!
PS - Rockadoodle is and always has been my Guitar Hero band name.
PPS - I'm burning that Hawaiian shirt right after I post.

6/23 - Brisket!

2009-06-23T14:31:00.005-05:00

Happy belated father’s day, everyone! We had a wonderful weekend in Austin. KC came to visit her sister for a few days and the three of us got to play video games together (more on that in the next post). The biggest news from the weekend is that the Men’s Club at St. Ignatius in Austin sold briskets to raise funds for Jamie. It was a great turn out. They sold over one hundred briskets, raising an amazing amount of money. The fathers of two of Jamie’s best friends – Eddie Cantu and Steve Palmer [they're in the front row, with Jamie in the picture], fathers to Andy and Michelle – are in the Men’s Group, and we can’t thank them enough for their efforts on Jamie’s behalf. I wanted to thank everyone involved before too much time had passed. I wish I this post was wittier or more laudatory, but you can’t squeeze water from a rock… wait, that’s not it… you can’t unring the bell… no… Ah, forget it.... I'm just out of good material. Here’s some fun pictures from the event. Thank you all so much, you deserve much more than this brief post. (Mom, instead of telling me what this post lacks, just add it in the comments! Love you!)

Oh, I should say that the briskets were delicious. Want to know what they looked like? Too bad. Here they are. (You already saw them anyway, didn't you?)

6/19 - Legs!

2009-06-19T16:08:00.006-05:00

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.

6/18 - Hair!

2009-06-18T12:49:00.003-05:00

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.

6/11 - Live in Austin? Need food for Father's Day? Want to help Jamie's medical expenses?

2009-06-11T16:48:00.003-05:00

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!

6/9 - A day trip to Houston; playing the Wii

2009-06-09T22:09:00.004-05:00

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...

There's No Place Like Home

2009-06-03T10:03:00.002-05:00

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

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

2009-05-30T12:26:00.003-05:00

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

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

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

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

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

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

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

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

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

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

2009-05-20T18:41:00.008-05:00

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

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

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

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

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

SB819 passed TX House’s Higher Education Committee (it did not have a hearing). Now it has to go to the House’s Calendar Committee to get placed on the calendar for a vote by the full House (see Stage 5 of www.capitol.state.tx.us/BillLookup/BillStages.aspx?LegSess=81R&Bill=SB819
If it gets onto Calendar, and if it passes, it goes to the Governor’s desk!
What can you do as a citizen (and a voter!) of Texas:

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

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

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

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

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

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

2009-05-18T12:47:00.003-05:00

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

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

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

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

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

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

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

5/14 - What goes around, comes around

2009-05-14T08:32:00.006-05:00

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

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

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

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

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

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

A woefully insufficient ode to our mother

2009-05-11T14:48:00.002-05:00

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

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

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

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

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

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

2009-05-08T10:44:00.006-05:00

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

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

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

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

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

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

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

2009-05-06T22:22:00.003-05:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Jamieschanbaumupdatesandsupport.blogspot.com

5/4 - Happily Reporting From Austin!

2009-05-04T19:40:00.000-05:00

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

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

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

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

5/2 - Last Post from Houston!

2009-05-02T17:46:00.000-05:00

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….

Massive and Great Update - Part 3 - Prosthetists Visit and Overall Medical Upadte

2009-04-27T14:35:00.002-05:00

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.

Massive and Great Update - Part 2(b) - Jen Griffin Visits!

2009-04-27T14:32:00.002-05:00

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? :) ]

Massive and Great Update - Part 2(a) - Dr. Boutros Tells Us the Good News

2009-04-26T15:10:00.003-05:00

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:

Today I don’t need a replacement/
I’ll tell them what the smile on my face meant/
My heart going Boom Boom Boom/
“Hey” I said, “You can keep my things, they’ve come to take me home!”

[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.