4/18 - Big Update - Testifying, Mom's TV Interview, Jamie's Awesome Progress

[I'm going to be adding more links to this post shortly, but I wanted to get it up first]

Today is April 17, 2009, and so much has happened lately that it may take me a little while to get all the information across. I’ll use headings where appropriate, so people can follow along well. First, we’ll talk about our testimony in front of the Senate Higher Education Committee in support of Senate Bill 819, which if passed would require that students desiring to live in on-campus dorms at any college in Texas (publics and privates) would need to show proof that they have been immunized against the meningococcus bacteria. Second, we’ll talk about mom’s interview on KEYE, the CBS Affiliate in Austin (and we’ll see if I can learn how to embed video into this blog… not even trying on the Facebook page). If you look closely, you can see the outline of my head in the video. You know what? I’ll just post again about all the medical stuff, which is also pretty exciting… so, check back soon, if it hasn’t already been posted. However, here’s a small teaser – Jamie is sitting up on her own, moving from the bed to the wheelchair, her protein levels are pretty great too and she’s been eating up a storm. So, that’s all great news, and its probably way too much to put into one post. So, without further ado…

Testifying in Favor of SB 819 -

Before we get started talking about all our business in Austin, we should give a special shout-out to Aunt Nancy for coming to Houston and staying with Jamie for a few days while mom was out of town. If you’re a frequent blog-reader, it may not seem like two days in the hospital room is a lot (especially considering that mom almost never leaves the hospital at all and I’m here for four or five day stints every week or so), but it is a lot of stress and work and we’re very grateful that Nancy was able to be here. Trust me, if you aren’t used to spending every hour of the day in the hospital, it kind of sucks. Ask Jamie.

Anyway… on Wednesday mom and I went to the Senate Higher Education Committee (HEC) to testify on Jamie's behalf concerning Senate Bill 819. Obviously, we anticipated that testifying before a Senate committee would be a long and drawn-out process, and this was no exception. Mom and I showed up to the hearing room right on time at seven o'clock like we're asked, and when we got there the room was completely full - standing room only. On the whole, 35 bills were introduced that day. Senator Zaffirini, the chair of the HEC, and the other committee members joked that this was going to take about six hours to complete everything for the day. Apparently, we came on a busy day. First, they introduced each of the bills - meaning that each bill’s author came to take questions from the HEC prior to testimony. Then, they start taking testimony in favor and against these bills, and they’re ordered according to the amount of witnesses on hand. Our bill, SB 819, had five witnesses – (1&2) Mom and me, (3) a representative of Meningitis Angels, a non-profit organization that supports families and victims of this disease, (4) a representative of [I may be screwing this up] Immunize Houston, a governmental based organization that advocates increased immunization for people. The fifth person was against the bill. Michelle and Molly and Andy(‘s mom), some of Jamie’s best friends, were in attendance. So was Roni, as you probably guessed by the picture. The four of us in favor of the bill testified first. Mom and I spoke last, among these four people. Mom’s testimony was wonderful and direct; I went last, but everyone else had already said everything that needed to be said, so I tried to limit myself to “Don’t screw anything up.” Check back in a bit for the link to the testimony (I'll fix this, promise).

Ultimately, everything worked out well and the bill was voted through the HEC by a 5-0 vote. The next step for the bill is for it to be argued on the floor of the Senate in the next few weeks, and, if it passes, then it goes to the house. If you’re reading this, why not ask your state senator to support this bill. The more support this bill has, the better, so it’s worth an email or a letter. Thanks for your help. Before jumping to the next topic, we need to thank Senator Wendy Davis, from Fort Worth. It’s her bill and we wouldn’t have had the opportunity to represent Jamie at the state legislature or speak to the Higher Education Committee about Jamie’s terrible illness. So, we’re very grateful for that.

Mom and Jamie were on TV once again -

Earlier in the week, Mom called her friend Ron Olivera, a superstar anchorman for Austin’s CBS affiliate, KEYE, and told him that we were going to be testifying at the capitol on an important bill pertaining to meningitis vaccines. Being the cool guy that he is, he somehow arranged for a cameraman to be at the Higher Education Committee meeting and then arranged for mom to be interviewed by Alexis Patterson, one of CBS’s reporters for the evening news. [It is now April 18… its taking me forever to finish this post] I could go on and on with details about how Roni and I set up for the interview, or how attractive Alexis Patterson is in person, but it’s a long interview, so I’ll let mom and Alexis speak for themselves. Click HERE to see it. This interview was played twice, once at 5 and again at 6. Interestingly, each showed different footage, spliced together with some of the footage from Jamie/Mom’s interview back in February.

So, wrapping up the non-medical news, the Senate Bill made it through committee and it is now on its way to the Senate floor. It is Senate Bill 819. Call up your state senator, and tell them to vote in favor of the bill or else! (I don’t know much about state politics, but I assume that direct threats work well)

Jamie’s Amazing Progress -

I hadn’t been in Houston for a week, which usually means I’m going to be excited by the progress Jamie has made during that time. So, take that anticipation, and add to it the fact that Jamie has been unplugged from antibiotics (which made her nauseous and blah) for about a week, and is off of her serious pain meds (dilautid and vicodin) which saps her mental and physical energies… I was expecting something pretty damn awesome... and Jamie has delivered, and then some.

1) Jamie is off the catheter now, Yay! (Also, because I’m a boy, I don’t handle anything in the “female” region, so double Yay!) This isn’t the first time we’ve attempted this, and last time we tried, Jamie’s backside was covered in bandages and things got a bit messy, which we couldn’t really tolerate. This time, Jamie’s had complete control over the situation. Even though mom got her some sweet Depends, she hasn’t needed them at all. I’m actually quite impressed. If I was wearing Depends (or if mom bought a larger size of Depends), I’d use them. I’m not kidding. Overall, this makes things so… much… easier.

2) Jamie can move herself from her bed to her wheelchair and vice versa. The greatness of this development can hardly be understated because, in order to get to this phase of the game, Jamie (a) sat up on her own, (b) put pressure on her wrists [but not her full palm yet, doctor’s orders), (c) scooted around on her butt, which barely has any bandages on it at all and which has skin grafts that have or are in the process of fully taking and (d) has enough arm and torso strength to balance herself and move herself over the chasm between the chair and the bed. I’m so elated that we’ve finally reached the point where we don’t need multiple assistants to get Jamie mobile. Now that she doesn’t have the catheter anymore, it’s a simple procedure to move from place to place. No more saying, “Watch the cath!”

3) Jamie’s protein levels are at 34.1 (normal range is 20-40). Doesn’t seem like too big of a deal, perhaps, but we should remember that we spent months below 10 and only recently got excited to be at 12… then we were at 29. So, Jamie’s really kicking ass in the nutrition department. She’s been eating up a storm and even ate some cantaloupe unassisted. Baby steps…

4) We're off the major pain medications. Finally, we’ve been talking a lot about pain meds and withdrawals, so we’re happy to report that Jamie isn’t on dilautid or morphine or vicodin or fentanyl anymore. To regulate pain, she takes ibuprofen. We knew that we’d eventually get to this point, but I didn’t think we’d get here so soon. So, that rules.

More good news: this time from Dr. Thai. As you recall, Dr. Thai is Jamie’s general hospital doctor. He said that if Jamie doesn’t require any antibiotics in the future and if her “numbers” stay where they are, then he’s going to sign off on Jamie being released from St. Joseph on May 1st. (!!!!!!!!!!!) We still need to wait to hear from Dr. Plastic Surgeon on Jamie’s right hand, but otherwise, we’re ready to rock.

Upcoming – On Monday, Jamie’s prosthetist in Austin (JP from Hanger Prosthetics) will be visiting the hospital, and, in conjunction with Dr. Smith and Jamie’s physical therapy team, represented by Michael, they’ll plot the course as far as Jamie’s prosthetics go. Are we ready for temporary prosthetics? Should we start standing on the stumps? Stay tuned, things are changing, changing fast and appear to be changing for the better!

Special Thanks to Roni for all the wonderful pics. She's our official photographer and is actually quite talented. Good job!