August 13, 2013

Regrouping

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.


We learned that the seizures were coming from a different location, near the original surgery site. We were shocked to hear this and I think the docs were just as surprised to be telling us. The area in question is very close to the motor strip so Evan is not a candidate for the laser surgery because it is such a crucial area of the brain. If he has surgery it would have to be using more traditional methods because the surgery is actually quite complex and would have the detrimental side effect of permanently damaging Evan's left hand. It's not clear how well he would be able to use his hand. 

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 11, 2013

Unwinding in the country

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.





There is something exhausting about getting all this fresh air -- or maybe we are still recovering from last week! Every is ready for bed early tonight.



These boots are made for walkin'!

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!





It's nice to have something fun to do after being in the hospital for a week.

We spent the day being pretty mellow and enjoyed hanging out at the Ronald McDonald House playing outside, watching a movie and having some low key family time.

August 09, 2013

Texas Children's Hospital: Day 5

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.



We have felt so fortunate to have so many people cheering for Evan and recognize how lucky we are to have such a strong support network! We are so happy to be sleeping at the Ronald McDonald House tonight!!

August 08, 2013

Texas Children's Hospital: Day 4

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. 



Tonight we had a great visit with our friend and fellow TSC parent, MaryJane. It was so nice to see her and catch up and she brought Evan a cowboy hat! Now he just needs the boots! 




August 07, 2013

Texas Children's Hospital: Day 3

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!


Evan looks ready for the beach! 

We started reducing his medication, so we'll see if he has a seizure tonight. 

August 06, 2013

Texas Children's Hospital: Day 2

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.



Rob will sleep with Evan tonight and as Aria and I were leaving Mindy started alerting. She was stiffing around the room and barked as she does prior to a seizure. We are hoping she's right!