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.

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.

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!!

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! 

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. 

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!

Texas Children's Hospital: Day 1

It was a long first day at Texas Children's Hospital! We got here at 9am and met with the neurosurgeon and neurologist and then moved to the Epilepsy Monitoring Unit where we met with nurses, a PA, a resident and the epileptologist coving the floor this week. 

Evan got hooked up to the EEG which was challenging, as it always is, but this time we upped the ante: instead of the standard 28-lead EEG, they placed 80 leads so they can gather more brainwave information. It took a long time and was rough for Evan. Mindy was a big help and at one point laid across Evan as everything was being hooked up.

The hospital is really nice and we are in a big private room with a couch that converts to a double bed. A huge upgrade to the hospital chairs that covert to a very makeshift sleeping space that i refuse to call a bed! There are cameras set up to watch Evan so they will see everything in the event of a seizure. The EEG techs can talk to us through a booming speaker in the ceiling -- it's all very "Wizard of Oz"! When they used a flashing light to test Evan for this type of sensitivity, we tried to get the wizard to DJ for us, but no luck. He did give us dinner recommendations though!

Aria and Evan have posed like this many times, in many hospitals, sharing Evan's hospital bed while watching a movie.

We are hoping for a seizure tonight: the sooner it happens, the sooner we get to leave! Fingers crossed!

Ronald McDonald House of Houston

After a long drive, the Ronald McDonald House of Houston was a welcome sight and will provide a home away from home for our family this week. Every time I have crossed the threshold of a Ronald McDonald House I am somewhat awestruck by everything they do to support families.

After checking in we met a family who all shaved their heads in support of their oldest daughter who has cancer and is preparing for a transplant. They will be here into December. Aria and Evan became fast friends with the girl's younger sister and ended up watching a movie with a table of children while they all ate dinner together.

The dinner was generously donated, prepared and served by a local family who frequently volunteer at the Ronald McDonald House. Rob and I sat together in the crowded dining room feeling exhausted and grateful. 

We've stayed at a few Ronald McDonald Houses and they are all filled with thoughtful volunteers and a mix of families who are connected through the type of medical challenges that require out-of-state travel and sometimes lengthy hospital stays. 

The rooms are like hotel rooms and there are multiple public areas, playrooms, an arcade / game room, playground, kitchens for cooking and a dining area. It's not unusual for groups to provide dinners for the families and there are free shuttles to the hospitals nearby. 

Aria and Evan really liked the massage chairs! And there is a therapy dog here that we hope to meet tomorrow. He is here mon - fri and looks a lot like Mindy. We leave early for the hospital in the morning so we may not get to meet him right away.

Traveling to Houston

As we begin the process of having Evan evaluated for a potential brain surgery we    have become increasingly more interested in a new surgical technique using an MRI-guided laser. We are on our way to Texas Children's Hopstal in Houston to explore this as a possibility for Evan.

It's a long trip, but we decided to drive to Texas, mainly because we don't know how long we will be in Houston. They have scheduled a 7-day Video EEG, SPECT Scan, PET Scan, MRI and fMRI. It's a pretty full work up and should give the docs a lot of info. When Evan is in the hospital we will hope for seizure activity so they will be able to determine where the seizures are starting. This always feels like a warped thing to wish for! 

Evan is due to have a seizure soon and according to his trend, it could be tomorrow -- the day before he us admitted to the hospital! We are hoping that won't happen and have a plan to nudge him all night long for the next two nights so his body won't get to the sleep cycle where he has a seizure. This is a crazy plan, unless it works!