Posted 2014-12-08T17:39:25Z

December 8, 2014: One month later

[On our Sabbath walk two days ago]

One of the most difficult things about Edward's disease is that it's unpredictable and there's rarely a clear path ahead. Edward has slowly been getting worse over the past three weeks. He's sleeping less, both at night and at nap times; he has become increasingly less independent, more clingy, more apt to cry if I put him down, more worried when he loses sight of me or I move even a few feet away; he has started shaking more when he's reaching for things; he's begun to get scared and shaky, again, when someone picks him up and doesn't immediately hold him close--if held at arms length in midair even briefly his arms tense up and shake, his face turns scared and panicked-looking, and he begins to whimper or cry; he has lost his recently-aquired ability to nod, though he can still shake his head (and now uses shaking for both yes and no); he falls more often when crawling or cruising; he's frequently at extremes--seeming to be always either laughing in a hyper, crazed way or screaming in distress; and his attention span for playing with blocks or cars, looking at books, or just any activity at all has shortened considerably.

There's always something else to blame... We've been traveling. He's tired. His schedule's been interrupted. He's on decadron (a steroid that can make him angry/sleepless) this week. It's all the holiday chaos. He's two years old. We tell ourselves these things, because they may truly be affecting him, because he's still just a two-year-old, because we want there to be a normal reason for his behavior, because we want to have found our miracle cure. At some point, however, we have to concede to our parental instincts and acknowledge that the traveling is over, we've been keeping him on schedule, he's been off decadron for days, we're far past any Thanksgiving chaos, and he's still getting worse. He has woken up screaming horrible screams multiple times the last several nights, and doesn't go back to sleep easily or for very long. Last night was the worst, and it made us really sit down and evaluate whether we can continue to act like he's ok. It's not that he's never happy, it just happens less often and for shorter times.

I left a message for his doctors this morning. It's only been two months since his last rituximab infusion, so I don't know what they'll suggest or whether there is anything to do about this right now. I just wanted to update you all and ask for prayers for us to have patience and energy, for his doctors to have wisdom, and especially for Edward to have peace and relief from agitation, and of course, we want him to be healed.

Sabbath walk 2
[A happy moment on Sabbath afternoon]

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Emilie DeVasher 37 Comments

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December 8, 2014: One month later

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