Plan for Roxanne

Roxanne was diagnosed with epilepsy (specifically, infantile spasms) in October, 2006. We went to see Dr. V, the epileptologist at Johns Hopkins in November, 2006, and the team left off saying they would have the neuroradiologist review Roxanne’s MRI, and would be in touch. When we called back weeks later, the radiology people had yet to review the MRI. In other words, we fell into a black hole of disinterest.

Changing tack, Roxy and I went to see Dr. P, the epileptologist from Children’s on January 2nd. A week later, she got another, more detailed, MRI. A week after that, we met with the neurosurgeon. Talk about interest and attention! Whoo!

The epilepsy team at Children’s includes four epileptologists (pediatric neurologists with a specialty in epilepsy), a neuroradiologist and two neurosurgeons. They reviewed Roxy’s case (old and new MRIs, old/new EEGs, history of seizures, drugs taken, etc.) and unanimously agreed that surgery is her best option. (Can I note how cool it is that a whole team of brilliant people reviewed Roxanne's case? Very.)

Dr. Y, the neurosurgeon, used the recent MRI to show Dan and I the area of abnormality in the right parietal region of Roxanne’s brain. It’s about the volume of a ping pong ball, and they hope that by removing that area, Roxanne’s seizures will decrease dramatically or even go away.

While it doesn’t feel like the idea of brain surgery is good news, it is. Roxanne isn’t responding to anti-epilepsy drugs, and statistically, if she hasn't, she won’t. Her seizures and the medications are slowing Roxy's development, and can eventually cause permanent damage. I hear our situation is what families of kids with epilepsy hope for. Huh.

Of course there are risks with the surgery, and yeah, I’m freaked out. But the studies show that not doing the surgery, and Roxanne continuing to have seizures every other day, will most certainly cause her to be developmentally delayed. Studies also show that this type of surgery can be very successful.

So. The surgery is scheduled for the week of February 12. They say she'll be in the hospital for a week after the surgery, which I find hard to believe -- only a week? I don’t have a lot of other details yet, and frankly, I’m not sure I’m ready to hear all of them. God. Brain surgery.

Steppin' out with my baby

Last October, as you may recall, Roxanne had a course of a powerful anti-epileptic drug that knocked out her immune system (unfortunately, it didn't knock out her seizures). For the 8 week recovery period, she was basically on house arrest. The only places she went were doctor's offices. It was really isolating.

Roxy's immune system should be better now, and after talking to her pediatrician (Dr. K - VERY cool), we determined she can go out, as long it's not a place mobbed by children.

I needed to go to Tyson's Corner to do some shopping, and this was the week to do it. I originally picked Thursday, but that was one of Roxy's high seizure days, and I didn't want to freak people out. (She does look kind of possessed when she has a seizure. I'm used to it, but others might want to call 911.) So, Friday it was.

Roxy enjoyed checking out a new environment. The mall has a lot more interesting lights, colors, sounds and people than our house, or even the hospital. I’ve been worried that Roxy is understimulated at home. For example, I know you’re supposed to talk to your baby, which I thought I wasn’t doing, until I had to quiet down at the mall. I picked up a sweater I was considering, showed it to Roxanne and said, “what do you think of this color?” When another shopper turned to see if I was asking her a question, I realized I must chat with Roxy more than I realize. (Roxy liked the color, by the way.)

It was funny how people reacted to Roxy with the feeding tube in her nose. One woman approached the stroller like, "ooh, a baby!" then changed to "ugh, what's that?" when she saw her face. Part of me wanted to laugh at the idiocy of it all, part of me wanted to explain, another part of me wanted to slap the lady. I overheard a child say, "mommy, what's in that baby's nose?" The mom hadn't seen Roxy, so I didn't get to hear what kind of answer she might have made up. The tube doesn’t seem like such a big deal to me, but I guess it looks creepy to others.

Well, I'm not going to hide my kid. We're going to continue to go out, and eventually, strangers will see her have a seizure, and they will have to deal. People have to deal with her feeding tube. Sick or disabled kids make people really wiggy, I get that. People don't like to be reminded that bad things happen to innocent children, but too bad. I did meet a couple of folks who cooed at Roxy and either ignored her tube, or simply asked what it was about. Cheers to them.

Like riding a bike

Today as I was getting on the elevator at the doctor's office, I saw a couple signing to each other. Without thinking about it, I signed "excuse me" when I wheeled Roxy's stroller near them. They started signing with me, asking how old she is, etc. They never got around to the "so, are you deaf or what?" question, since it was a short ride. Regardless, it felt good to know I've still got it.

Equally interesting, I saw a young guy in black standing near (but not with) them who had been signing as I entered the elevator. Even if I hadn't seen him sign, he totally had the just-finished-interpreting-for-a-doctor's-appointment look.

As I walked away, I thought, "wow, that was me 6 months ago."

Weekend report

This weekend was noteworthy because something strange and rare occurred. I went out both Friday and Saturday nights! On Friday, Dan and I left Roxy in the very capable hands of Fencergal and her guy, and went to see Eddie from Ohio at The Birchmere with Dan's son. The concert was more mellow than the last time we saw EFO at Wolf Trap, and as always, the performance was wonderful.

On Saturday night, I went to Miss S's twelfth night party (despite the fact that twelfth night was last weekend). The idea is that after we all eat and socialize, each partygoer provides some kind of entertainment for the group. Most of us are singers, so there were lots of lovely songs, some with guitar. There were some poems as well, and TOWWAS showed off one of her crafty scarves. I sang Regretting What I Said... by Christine Lavin, the same song I auditioned with for the Revels this year. It felt really good to be out at a party, hanging out with all my Revels friends, and singing. Still, I went home pretty early. Roxanne gets me up early in the morning and, well, I just missed her.

We only got some vague news about the MRI last week. Our neurologist said his team was able to see the area of dysplasia on her brain, but they need more time to decide if the margins need to be defined by additional testing. I have a meeting with the neurosurgeon this week, so I hope we will hear more then.

I also have a meeting with the GI surgeon this week. I don't know which surgery will take place first, but if the neurosurgery is several months in the future, we'll need to move forward with getting the G-tube and nissen fairly soon. Roxy has already had her ND tube for over a month, and it shouldn't stay in for much longer.

Although she has a lot of doctors appointments, Roxanne is doing really well. Some days, she only has one or two seizures, other days, many more. But she's still our happy, smiling, laughing girl, through it all.

Waiting for news

Roxanne had her MRI at Children's Hospital last Tuesday. The whole process took far longer than I expected, based on previous experience. We arrived at about 9:30am and left around 3:30pm. Roxanne was sedated for about an hour (we think) and came out of it well.

I have yet to hear what showed up on the MRI. Dr. P said he would take the results to the epilepsy team at Children's to determine next steps. Being impatient, I want to know NOW. Yesterday.

My mom left on Wednesday, and I've received some very kind emails and calls from friends checking in. In a nutshell, I'm doing OK. It's a strange period of limbo, but Roxanne is taking it in stride, so I guess I will, too. The good news is she's sleeping pretty well, so I'm not as frazzled as I used to be when I took the night shift.

One way or another, Roxanne will be having surgery soon, and I'm trying not to freak out about it. She might have neurosurgery soon, depending on what the MRI showed. If not, she will need the g-tube and fundoplication soon. Either way, I'm mentally pacing the floors day and night.

Next

I don't know if it was my clothes, but the meeting with Dr. P. went very well. He seemed interested in Roxanne's case, and called me two days later to recommend another MRI of Roxy's brain, this time high resolution. As Dr. Y had noticed on last October's MRI, Roxanne seems to have an area in the right lobe of her brain that is abnormal, that could be the cause of her seizures. (Note: The folks at Johns Hopkins have YET to review Roxy's October MRI. Dr. P's rapid response is astounding!)

Roxy's MRI is tomorrow at Children's Hospital in DC. She'll have to be sedated, because she's too wiggly to get the images they need. I hate the idea of anesthesia, but this is too important to get hung up on the details.

Next week, we have an appointment with a pediatric neurosurgeon at Children's to discuss the option of surgery for Roxanne, depending on what the MRI shows.

Oh yeah, my mom leaves on Wednesday. Send me strength.

Oh, hello

I recently heard that there are some loyal blog readers out there that check this website daily. Sorry I don't update that regularly. TOWWAS is already feeling the post-a-day pressure, but I have yet to succumb.

Here's something I was thinking about today. I had a friend who always made a point of dressing up for appointments with her oncologist. When asked why, she replied, "I want to look like somebody worth saving."

I think she hit the politics of medicine right on the head. Doctors have limited attention and resources. I believe that they can't help but do triage on every patient they see. If you look like somebody who has a good chance for a good outcome, they are more likely to spend their resources on you. If they think you're a lost cause, they quietly let you fade into the background.

So when Roxanne and I went to see the new epileptologist from Children's, Dr. P., I made a point of dressing up for the appointment. I made sure my records were complete and ready to hand over. I wanted to look like someone whose child is worth helping. I hope it worked. We'll know when and if Dr. P reviews her MRI, EEGs, labwork, etc. and comes back with recommendations for future action.