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.