Saturday, March 1, 2014

21.5 Hours

After 21.5 non-stop hours we woke up this morning to feeling as though we had an epic hangover.

We spent about $1,000 in those short hours and although I feel like I took 10 vodka shots and rode a bull, I did neither.

Are we crazy? Sure, but whatever it takes for Oliver!

Our little superhero!

Our prayer was two fold. First, that we would have eyes to see the goodness of God in this, and also that Andrew and I would remain a team. Travel together with someone for that long and no matter what you say at hour 20, it will probably sound "snappy"! We just decided to not talk and listen to "This American Life" for hour 19-21.5. Good plan if you ever find yourself in this situation :-)

When you have eyes to see there are blessings everywhere. First, all our travel arrangements went as planned (this is huge in the Northeast in the winter).

We got to hang out with the Farrell family, who graciously picked us up at the airport and cooked breakfast for us. There could not be a more generous family in Boston; they are so good to us. We also took a nap at their house before our flight out of town. They are exceedingly more than we could have asked or imagined.

We were amazed again at how blessed we are to be in this drug trial. 125 kids out of 300,000 in America with Epilepsy. We are so blessed and thankful.

Finally, we were surprised by our A-mazing occupational therapist, Seth, who stopped by today with a meal and bottle of wine for dinner tonight. Totally unexpected and so thoughtful. We don't deserve how good you all have been to us. For the emails, texts, funny cards, videos, hugs, thank you.

More like a face plant than a kiss, but I'll take it!
It feels like we are running an endless marathon and despite the finish line moving constantly, we have an army of amazing people cheering us on, binding up our broken hearts, shouting encouragement, and feeding us along the way.


Our marathon times, roughly.

Our doctor has asked that we not put much of the details of the trial on social media due to its sensitive nature. Of course we agreed and understood. Here is what I can tell you: we will start in the med in the next few months and it will be in liquid form. We will make 15 trips total to Boston and 9 of those will include Oliver.

We love you all and are grateful for each of you.

5 comments:

Lane said...

Just sending some love and "cheers" your way. You are an inspiration. Your involvment in this study is an answer to many prayers!!!!

Anonymous said...

So very with you and hoping for the best!
Heather

Becky said...

A visitor to my blog just pointed me in your direction as I also blog about my son and TSC. Love to find blogs sharing our experiences.

Mrs. M said...

Hi Stephanie,
I am so happy for you all that Oliver has been accepted for this clincial trial. There has been so much hope and positive results provided through MMJ. I am excited for you! Yes, I know it's early,early days but my goodness it's worth the effort and oh how I pray that this is Oliver's time for a breakthrough.
Hugs to you!
Margo

Michelle Poccia said...

Stephanie, I see all these reports about medical marijuana and treating kids for seizures on TV and in the paperall the time now. I say a prayer for Oliver every time. I am hoping that you guys are doing well in this study. Just wanted to let you know that you have so many people that are rooting for your family! Much love, Michelle PS I love that one of the strains of plants is named "Charlotte's Web"! (my favorite childhood book!) XO!