The Week Ahead

Ava's got a big week ahead. This picture is from almost two weeks ago. That was the last time she was this alert. She's spent much of the last week sleeping, with brief awake periods. Since her medication levels aren't high enough to be causing this, we need to rule out the possibility that she's having lots of seizures that we aren't detecting, which are wearing her brain out and causing this sleepiness. Tomorrow morning, (Monday) we'll be admitted for 24 hour EEG monitoring (remember this test?) and if she is not having seizures, we'll likely be home by Tuesday evening. If she is, then we'll stay for a while longer while we begin new medications.

Elizabeth has fully recovered from her endoscopy, so she'll be back at school tomorrow.

To her delight, we've decided to discontinue her hearing aides for now. She has gotten more and more agitated while wearing them, and any gain in her hearing has been undermined by her constant attempts to remove them. It's just too much sensory input for her right now, so we'll have to try again in the future. We did receive surprising good news this week: our insurance covered the cost of her hearing aides entirely! Since they're not covered in our policy, we'd expected to pay the thousands of dollars to provide them for her...and now we don't have to! Praise God!!

Finally, a number of you have asked if we've gotten back the final biopsy report. We have, but the information in it is confusing, and simply doesn't provide any clear diagnosis or prognosis. In fact, the first line in the report says, "we're having a very difficult time with this case."...Not a typical biopsy report! At the end of the day, they don't know why, and they don't know what it will mean, but her brain is in really bad shape. It's possible we'll get some information from the EEG tomorrow, but the most important information --whether the abnormal cells in her brain are growing and how fast-- will hopefully come from her repeat MRI on Valentine's Day, a week from Tuesday.

With every breath we ask God for a miracle, and meanwhile, we live life. We continue to receive each day as a gift.  We treasure each of our wonderful daughters.  And we live each day by the grace of God and with the practical support from countless friends, new and old.

 

Thank you for staying with us on the journey.