So we are regrouping and looking at other options. Prior to this news we were talking about the possibility of having surgery while we were still in Texas so the shift in direction really threw us for a loop.
August 13, 2013
Last week we met with the doctors in Houston to talk about the results from the very thorough testing they did. Evan was all smiles in his cowboy boots with DS in hand. It was good that he had it because it offered him a complete distraction to everything that was going on and being said.
August 11, 2013
After spending a week in the hospital we were thrilled to take a break at our friends' farmhouse about an hour outside Houston. It's the perfect weekend escape! The kids are loving being able to hang out in the pool and it was so relaxing and rejuvenating. I love being away from the energy of the city to have a chance to really unwind.
We had lunch at a 50s style diner where the waitresses wear poodle skirts and they play old music. The kids got a real kick out of it.
Highlights were milkshakes, the pool and catching lizards. Back to the basics to connect as a family.
As soon as we knew we were coming to Texas I started saying we needed to get boots while we were there! Today was Evan's first day out of the hospital and Grandpa Fred gave him an IOU for a pair of boots when he and Grandma Lynell visited in the hospital so today was the day!
August 09, 2013
Today began with a seizure early this morning, so the doctors now have a lot more information to work with. It was a typical seizure and lasted about 10 minutes.
We had a flurry of activity today and Evan's doctors came by to talk to us a few times. The seizure activity looks like it is coming from the tuber in his right frontal lobe that we thought was the culprit. We were relieved that he finally had a seizure while he was being monitored!
Today was filled with removing the EEG leads, a PET scan, an MRI and an fMRI. He was sedated for the two MRIs and it was late when he got back to his room. As a bonus, Evan was discharged and we got to leave the hospital!
We also had the benefit of having Grandpa Fred and Grandma Lynell come to visit us in the hospital. They got to hear firsthand all the news from today and it was nice to hang out, even though it was in the hospital. it was also perfect timing to have extra adults to free Rob and I up to be with Evan as he came out of sedation and look at the Video EEG results with one if Evan's doctors.
August 08, 2013
Sigh...still no seizures...
We reduced Evan's meds yesterday and reduced again today in the hope that Evan will have a seizure and they will get lots of data to make recommendations.
Some interesting quotes from Evan during his hospital stay:
"Since we're in Texas we should be outlaws!"
"This hospital's not half bad -- I get to stay up late and eat Popsicles, but I'd give anything to get this EEG off!"
"If they cure my seizures they might cure everyone's seizures and then nobody would ever have a dog like Mindy."
"To cure my seizures all you have to do us tell me you want me to have seizures then I'll never have one."
Today Aria and I escaped the hospital for a couple hours and went to the Houston Aquarium. Aria liked feeding the stingrays and there was an unexpected bonus of getting to see White Bengal Tigers. We sat in on a feeding session which was pretty interesting.
August 07, 2013
Rob slept at the hospital last night and Evan didn't have a seizure so nothing has changed. We are all ready to leave the hospital! There's only so much we can do to keep things interesting when Evan has to stay in his room!
August 06, 2013
Evan slept well last night but didn't have a seizure yet. Thankfully he didn't have one before we checked into the hospital, so at this point he is overdue for one and we are eager for him to have one while he is being monitored.
I slept with Evan at the hospital and Rob and Aria came by after they woke up. Mindy is continuing to be a real rock star!
Evan took a break to paint and Mindy took a break too!
It's hard to keep Evan stimulated in a hospital room but we were lucky to also have visits from Carroll & Wayne Brown and then Mark & Shannon Nini. Having people hang out with us made being in the hospital feel normal in a way.