How we loved

(as if the title doesn't give it away, I feel I should make a disclaimer that the following post is gushy. You've been warned. ;)

(you might be interested to know what spurred this post. Here is the background.)

I remember it like it was yesterday, the wooing and the breathlessness. The I-can't-wait-even-one-more-minute-to-see-you palpitations.

It surprised me, how I had begun to care for him without knowing it at first. He says he knew how he felt from the beginning. I was clueless about that too, but looking back I see it now.

Much of our courtship was spent apart. I still haven't decided, years later, if that was a blessing or a hardship--probably a mix of both.

We got good at letter writing and too-brief, often poorly connected phone conversations. We longed for more time, more words, less miles between us.

When things got hard for him in South America, I just wanted him home. He made that happen just after Valentine's Day my senior year. Kevin Thiemann made him sit in a huge, uncomfortable box delaying the surprise until our Bible study was over that night, not wanting to derail our group. I can still picture it, and it still makes me smile. Only love would make him stay in that stupid box, for what had to have been an hour and a half or more.

We were engaged soon after that, and then, as it had defined our relationship, we were apart yet again. This time it was me who left. To India. For two months. Again with the letter writing and broken phone calls.

We set The Date right after I got home. Two months out. Enough was enough. We made quick decisions about flowers and cake and dresses and tuxes, longing for the day when we could just be. Together.

We spent the whirlwind of our wedding smiling till our faces hurt, full of joy and excited to start our lives together. We drove to Tulsa that night to catch an early plane the next morning. We must have said, "I can't believe we're married!" at least 20 times a piece in the two hour drive there.

We loved big and strong but not yet deep, that would come over time. And it has. Through career changes and diagnoses and moving and babies, we have clung to each other. Through selfishness and immaturity, through stubbornness and perhaps because of it, we are still here together, clinging and loving.

I loved him then, and I love him now. May God's grace continue to make our youthful promises of forever a reality.

♦

Next Steps (Detroit Day 4)

Yesterday was a day full of information. We met with Dr. C and his team for quite a while at his office. We looked at scan results, pulled up YouTube videos of ella's past and current seizures, answered lots of seemingly unconnected questions, and basically had our minds blown.

I'll try to summarize but there was so much to digest and much of that is difficult to explain. Here goes nothing.

I tried to go in with no preconceived notions, but as it turned out I couldn't help it. I went in with the assumption that Ella's development level would be too advanced to be considered a surgical candidate. I was also unsure that a single focus (one bad part on her brain where the seizures are likely coming from) could be found since her MRI was clear.

I was wrong on both counts. 

Ella's development, especially her speech being at the level of (in my layman's estimate) that of roughly a 12-month-old, is concerning to Dr. C. He believes that not only will she NOT eventually catch up (as many practitioners have told us) but that the gap will continue to widen between her and her typical peers. I had become discouraged with the slow pace with which she acquires new words and how she is still not putting phrases together, so I guess it's not entirely a surprise that she may not do it on her own after all, but it's still disappointing.

I'll get back to the speech thing in a minute.

The PET scan (which measures brain activity) that we had done earlier this week showed that Ella likely does have a seizure focus, perhaps at a microscopic level that would not show up on MRI. And instead of being on the right (like the original MRI suggested) it's on the left; Dr. C believes Ella has a cortical dysplasia (bad spot) in the temporal lobe that is affecting Ella's speech center and that what speech she does have is coming from her right brain (which is not naturally what occurs and could therefore account for her great delay). He also thinks that she might have some abnormality in her left frontal lobe. This makes more sense to me than any CD being on the right side because Ella has always had more right-sided involvement during her seizures which would suggest a left-sided problem.

Interestingly, Dr. C thinks that Ella's left-handedness is pathological. That she was born to be right-handed but because the left brain is damaged she switched to her (right brain controlled) left hand. This theory is complicated by the fact that I am left-handed, and there is some left-handedness on Chris' side of the family too, so it COULD be inherited but the doc says it's still suspicious for a damaged left brain.

But I digress.

All that to say that preliminarily Dr. C thinks that Ella's best chance of a good outcome (which he defines as not just seizure control but allowing the child to catch up to her peers' development) is surgery. Specifically surgery that removes the damaged parts of Ella's brain--up to almost all of her left hemisphere (leaving the motor cortex intact to prevent weakness on her right side) if necessary.

Before we can go forward with surgery, which he believes should happen sooner than later to protect Ella's intellect, there's a few things we need to do first. Namely, we need to make sure that Ella's right brain is normal. It won't do her any good to remove some of the left brain if the right brain cannot compensate. Dr. C believes that Ella is too high functioning to have bilateral damage. I happen to agree with him too. But to make sure that the seizures are coming from the left side only, we need to get an actual seizure on EEG. He recommends that we take her off her meds cold turkey right before hooking her up and keep the test going until she seizes. We will probably do this at Ark. Children's within the next few weeks. We did have an EEG back in May or June that showed left-sided spikes, which at the time didn't make sense but now may be the evidence we need. Dr. C wants the squiggles from that test (his words), not just the written report. I'm not sure how to get that, but again he wants it within the next few weeks.

Once we get these last bits together, and as long as nothing contradicts his preliminary determination of left sided cortical dysplasia, Dr. C will present Ella's case before a board of 20 neurologists and epileptologists who will make the final determination as to whether Ella is a candidate for surgery.

This will likely happen pretty quickly. Her age is fast approaching three years (an unwritten marker for when damage from seizures starts to become irreversible) and I am only getting more pregnant by the day as well which would make it more difficult/less advisable that I travel.

I'll save the specifics of surgery for another post, as this is already quite lengthy and we haven't really gotten all the specifics anyway--not wanting to put the cart before the horse so to speak.

As to whether we will give the green light for surgery should Ella be approved, the short answer is yes we probably would. I'll save the long answer for that for another time too.

Thank you for following along with us, for your prayers, your encouragement. We'll continue to lean on your support as we go forward.

♦