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!

Finding Hope

To see Evan run around and play you would never know that anything is wrong with him. He's energetic, talkative and bright-eyed, loves to ride his bike and knows more about Pokémon than anyone I know. He's a sensitive and caring young man who loves to make people laugh and manages to spread joy wherever he goes.

Unfortunately, Evan's seizures are not improving and watching him have seizures can be a surreal experience. Every 10 days or so, our world is rocked by a seizure. After having tried lots of different medications, I'm sorry to say, they aren't working. There are other drugs but they probably won't work either. I'm not being pessimistic or feeling sorry for us, that's just where we are statistically: any medication he tries has a less than 1% chance of working.

Evan's last seizure was 9 days ago and knowing he is approaching a seizure, life becomes more worrisome, especially at night. We know that in the next few days we will be jolted awake by our son convulsing. He will settle into a slower pace as the seizure grips his body. We will administer a rescue medication to stop the seizure and we will watch him seize for several minutes more. Sometimes, if it isn't slowing down, we give a second dose and call 911. It's a strange routine to become accustomed too.

I am a perpetual optimist but even I have a hard time when the good side is that we didn't call 911 or that the seizure "only" lasted six minutes. It's hard to find comfort in knowing that there were 14 days between seizures instead of 9. The last few months my emotions have been raw and my spirits down. I have felt beaten down and have had a hard time finding a sense of hope.

On our most recent trip to the neurologist it was suggested that we consider a second brain surgery and an interesting conversation followed:

Me: "What sort of timeframe are we looking at?"

Dr.: "It depends on the Neuropsych evaluation. If he is showing a decline you should schedule it as soon as possible but if not, you've got time."

Me: "So, how much time? A year?"

Dr.: "Oh no! I wouldn't wait that long!"

Rob and I laughed about this conversation later remarking to each other, "that's not 'time'!"

We left the doctor's visit with a roughly sketched out plan to begin the process for a surgical evaluation, a few surgical options in mind and a small glimmer of hope.

Redefining Normal

Last night Rob and I went out for dinner to celebrate our anniversary and we dropped the kids off at Bob and Beth's house. We had a perfect evening filled with great food and lots of laughter. After dinner we went to pick up Aria and Evan and had a glass of wine by the firepit while the kids played. They were up a little late but on a Friday it's not such a big deal. I couldn't help noticing how "normal" and relaxed I felt. It was rejuvenating and we both needed that.

This morning I was watching Evan sleep, his steady breathing gently lifting his chest. I marveled at the length of his eyelashes and admired his lightly freckled cheeks.

As I watched him sleep I noticed his hand twitching in his sleep. Not a seizure but maybe a neurologic induced movement. I watched him more closely just in case and within minutes his body began to shake in the rhythmic movement that defines what is now normal to us.

I snapped into action and gave him the rescue meds as Rob rushed into the bedroom. The seizure lasted 7-8 minutes, as most do for him. These are always the longest minutes, filled with worry and dread.

After the seizure Evan slept again, this time as a result of the meds we gave him but looking every bit as angelic as he did earlier.

This redefined normal weighs heavily on our whole family and I'd like to find a better treatment option, one that actually works. I'm looking forward to the day when my version of normal doesn't feel so warped!

NYC

We had a mad dash to Manhattan from Long Island today. Rob and Aria had to head home and Evan had an appointment with Dr. Weiner so we drove in and parked after dropping them off.

They picked up dumplings in Koreatown to eat on the way home and Evan and I had NY pizza. I'm not sure which child was more happy!

Evan and I wandered a bit and went to a movie before his appointment. We had a pretty nice afternoon and it's always so nice to see Dr. Weiner too. This was an info gathering appointment but it's a little nerve wracking to think about possible next steps if he keeps having seizures.

NY Doctor Visits and EEG

Evan is still having seizures and his neurologist wants to take a look at his brain waves again. She wants to see if, in addition to the seizures we are seeing, there might also be something going on in the background that we should be aware of.

So we made the trek up to NY to see if there are any answers to what's going on with Evan. He got hooked up to the EEG yesterday and we will be interested to hear the results after a few days of EEG monitoring.

Evan did really well with the process and it was helpful to have Mindy with him. The biggest complaint has been that his head itches.

We also had an appointment with his neurologist, Dr. LaJoie, to talk about next steps and treatment options. Today we will see Evan's neurosurgeon, Dr. Weiner. We try to follow up with him whenever we are in NY and it's always nice to see him and hear his input on the most recent MRI.

MRI

One of the hardest things to do is watch Evan receive anesthesia prior to an MRI. Two things make this challenging: he's scared and nervous so he sometimes cries or resists the process and we watch his body crumple as the anesthesia courses through his body. When he was smaller I would hold him and that was a more difficult psychological experience to have him in my arms as he lost consciousness and his body went limp.

Then there is the waiting. It seems like an eternity as we sit in the waiting room, waiting...waiting...waiting.

This year was the first time Evan had Mindy with him and we were amazed by how she reacted to Evan. His anxiety level was high and she knew it. The team was really good with Evan but the member of the team who really shined was Mindy!

As Evan laid on the table to receive his anesthesia, Mindy put her front legs across him and rested her head in his lap. She did this on her own with no commands; she just knew what to do and provided him the comfort he needed. He was petting Mindy as he fell asleep.

When he woke up, we were with him and Mindy was laying watchfully by his side. He was happy to see her when he woke up and quickly began his nurse-charming routine. He was very groggy and the first thing he asked for was Mindy. The second thing he asked for was the Skylanders toy we promised him. We knew he was on his way back to normal when he started playing on his iPod Touch. A couple popsicles later and we left with our eyes on the next prize: McDonald's!

Overall, not a bad experience. Evan was super polite and his manners were shockingly impeccable, especially given his altered state. I think he knows please and thank you get you treats and lots of attention in hospital settings.

Once again I find myself in awe if my son. In spite of everything he deals with everyday, he approaches these challenging situations with grace, humor and a positive spirit.