Sunday, March 14, 2010


I posted this on Facebook the other day but for the benefit of those who aren't on it...

The other morning I was driving Julia to school. All of a sudden a car pulled out in front of me and I had to quickly hit the brakes. Before I could say anything, from the backseat I hear Julia say..."Oh shit!". Although I was horrified my potty mouth while driving had obviously made an impact, it was too funny to not laugh. Which was probably the wrong reaction...the light in her eyes once she realized she'd said something funny probably means we'll be hearing it a lot from now on. Note to self...stop cursing!

So it's now been about a week since we came down on her Vigabatrin dose, we're now at 1000mg/day down from 1250mg/day. Again, we are already seeing a very positive difference. More energy, more speech, just more more more. Amazing. We are nervous though about this weaning process...Michael and I both can't help but remember the awful seizures she had in the hospital right before surgery when she was totally off of it. We just have to remind ourselves that we're dealing with an entirely different brain now. One that has far less nasty stuff to try and control. We may take the wean much slower than the guidelines Dr. C gave us, just for our own peace of mind. I'm going to talk to her local neuro to see if there's any validity in that line of thinking. But so far, so very good.

Monday, March 8, 2010

Quicky post because we just got home a little while ago and we are all beat...but it was a great appointment. It was so wonderful to see Dr. C again...I just love that man. Plus we got to see him at the Southfield office which is AMAZING...quiet, easy to get in and out of, just all around better than the main hospital.

The final EEG report showed no spiking or seizures when she is awake. However...when she is asleep there is "intermittent spiking in the centroparietal area". Dr. C said that is probably coming from the motor strip where we did the MST. He wasn't overly concerned. Ideally we would have no spiking at all but he said that it's quite possible that over time the spiking will go away because it has nowhere to go now. I was concerned that we wouldn't want to wean her Vigabatrin after that, but surprisingly he said let's do it. That she is not at risk for infantile spasms anymore and the Trileptal should be appropriate for controling the spiking. So we are going down in 250mg increments every 3 weeks or so (I may stretch it out to every 4 superstitiously.) If we see any weird behavior, call him, but otherwise do a repeat EEG after the wean to see how things are and go from there. Other than that he said she looks great and to push the speech therapy, which, you know, duh. :)

So glad to be home and have that behind us for now!

Friday, March 5, 2010

24 hours later...

...we are home! The EEG I'd been dreading for weeks came and went and is now behind us. We arrived at the hospital around 10am and were quickly shown to our room. Julia was in a great mood for the next couple of hours, we snuggled together in her hospital bed and watched Noggin on the new flat screen TVs they have in the monitoring rooms (nice upgrade, Childrens!) She didn't seem to be bothered being back in the hospital, maybe because at first she didn't know we were at the hospital. As we walked down the hallway to admitting she said "Okay, time for the airplane!"...yeah, she thought we were at the airport, which I can understand. The busy hallways and tall ceilings in the lobby did conjure up images of the airport.

Once the EEG techs came in to get her wired up the fun began. There was a lot of tears and they ended up having to use the papoose board to keep her still. But after all the leads were attached it only took some hugs from mom to calm her down and we settled in for an afternoon of more TV watching. There were only a few times she tugged at her cap and she did say at one point that her boo-boos itched (she kept pointing to her head and saying "my boo-boos" cute!) But other than that she was happy for the most part to stay in bed playing with some of the goodies I bought in the gift shop, napping or watching TV. The hospital food was a big hit as well...chicken tenders and fries for lunch and a quesedilla and fries for dinner. What more could a 4 year old ask for?!

Her neurologist didn't have time to stop by but did call me around 5pm. She said she'd been taking peeks at the monitoring and that it looked very good. No seizures, not that we expected any. I asked her if she saw any spiking and off the top of her head she said she didn't think she saw any...which is awesome. She'd also pulled up her last EEG prior to surgery to compare and said it was like night and day. I was able to view the monitor myself for a little while immediately after they hooked her up. It was hard for me to make sense of what I was seeing since she was still crying, moving around, etc. But it did seem very different from what I was used to seeing before.

She fell asleep around 8pm and I shared her hospital bed with her which made for a GREAT night's sleep as you can imagine. :) We were awoken right at 6am by another EEG tech to get her leads removed, were dressed and out of our room by 6:30 and out of the hospital by 7am. It was great.

So no official results yet. We are leaving for Detroit on Sunday to see Dr. Chugani on Monday. Hopefully there will be something ready by that point that can be faxed to him so that we can make some decisions on weaning her Vigabatrin. I am just so relieved that part is over.