Peanuts and Cracker Jacks

The seizures are back. We knew this would happen. They began Friday night (the night we left the hospital). Go figure, that is often how it goes with kids with epilepsy. The seizures can be elusive as well as relentless. They only seem to relent when you are threatening to get rid of them! Weird, huh? All that to say- we are thankful we have the surgery plan in place.

The MRI went well. We are thankful that Oliver got a slot in that fancy smanshy machine. It is different from the MRI he had at Duke, it is particularly good at picking up the tubers. Mass General developed the technology for this machine and I think it makes the image 3-D instead of 2-D. It also helps the neurosurgeon spot the blood vessels more easily than on a regular MRI. That is a good thing because hitting a blood vessel gets very scary, very fast, when you are dealing with brain surgery. When it is your baby's life on the line, you want the most cutting edge technology that is available and we got it. Thank the Lord!

Also, big thanks to Jan (the nurse) for working with our insurance company to get this test approved. What a blessing! If I were Oprah I would do something really grand (like buy her a car, or a house in Maui, or a pony) to thank her for being SO good to us.

As I understand it, the next step in the surgery process will be on June 1st. This is when the Epilepsy Surgery Conference takes place. The surgery conference is when the entire Mass General team discusses Oliver. They make a power point of his case including the EEG, MRI and other data.  Then they all discuss the risks vs. benefits, the surgery plan, any further testing that needs to be done when we arrive, etc. After this conference, Dr. Thiele will call us and we'll talk about the details. We're praying and thinking seriously about what lies ahead and the decisions we have to make for Oliver. The gravity of the situation is not lost on us. We feel the weight of it more and more as we get closer. My understanding is once we say "yes" it is a matter of scheduling the date for the surgery. We will need to plan to be in Boston for at least 1-2 weeks (assuming all goes well). There are still a host of unknowns and so much could change. We'll keep you, our O-Team, in the loop as we get closer.

Now to the really fun stuff! We ended our time in Boston with some All-American baseball. The Red Sox game was awesome! Andrew was pumped and he immediately knew we weren't passing up this deal. Of course, Oliver loved it when the crowd got rowdy. He was dancing and clapping- super cute! It was a very generous gift, an unexpected, wonderful night...the cherry on top of a good, productive trip.

The most salient part of our trip wasn't the Red Sox or getting the fancy MRI- it was the presence of God. We saw his fingerprints all over the place! Even in the midst of this valley we don't need to fear, we have a Great Light with us, the Author and Perfecter of our faith. We hope that you are encouraged as much as we are; that even though this circumstance is hard, the Lord is good and shows His faithfulness daily. We know He has entrusted us with Oliver for a reason and we're so glad we've had the privilege to be his parents.We are better for it.

The Lord is near to all who call on him, to all who call on him in truth. 

Psalm 145:18