8/7 - Jen Griffin comes to visit

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.

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

... 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!

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 Austin. 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...

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

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!!!!!!!

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!

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!

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!

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?)

The Jamie Schanbaum Act

The Senate Bill went through Congress three times before it successfully passed with the help of Jamie Schanbaum and her amazing story. In early summer of 2009, shortly after Jamie was released from the hospital, the entire Schanbaum family was invited to meet with Rick Perry as he officially signed what is now and forever known as The Jamie Schanbaum Act.

6/19 - Legs!

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!

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?

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

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

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!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

5/14 - What goes around, comes around

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

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

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

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

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

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

A woefully insufficient ode to our mother

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

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

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

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

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