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.