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?)

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