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Surviving on Low Power Mode

Surviving on Low Power Mode

Surviving on Low Power Mode

 

I recently noticed a feature on my phone when the battery is getting very low. An icon pops up giving me the option of conserving energy by hitting the button “Low Power Mode.” This is a fitting analogy for our lives in the past couple of weeks (or months, or years). I found myself hitting this button several times in recent weeks, as I saw this as the best way to proceed through the monotonous days in the hospital. For the …

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Our Hanukkah Hiccup

Our Hanukkah Hiccup

We’ve been told that Ethan has this uncanny ability to time his hospitalizations around holidays: Rosh Hashanah, Yom Kippur, Sukkot, Simchat Torah, Chanukah, Passover, Birthdays, and Mother’s Day. I guess the odds are that when you spend more than 300 days in the hospital over 2 ½ years’ time, you’re bound to be in-patient over some holidays. This week’s holiday of Hanukkah is no different. Ethan was diagnosed with a UTI on Tuesday morning, and by Tuesday afternoon, his bowels decided to take a siesta. …

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I Think I’m Gonna Like It Here

I Think I’m Gonna Like It Here

These were the words uttered by Zak before we said our goodbyes at Washington University in St. Louis last month. He had taken us to “The Loop,” a 10-minute walk from campus, where we enjoyed a delicious lunch together. While he was talking about all the things he was looking forward to trying out and getting involved with first semester, he got a big grin on his face and said, “Talking about all of this makes me think of the song from Annie, ‘I Think …

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Home – Sweet – Home

Home – Sweet – Home

 

 

Home – Sweet – Home

 

Ethan has set a new record. A personal best of being in the hospital for only 42 hours! Way to go Ethan!

We're looking forward to celebrating Father's Day with Ethan at HOME. The best.

Happy Father's Day to all the fathers out there.

 

 

 

*Photo credit: etsy.com

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HOME!

HOME!

 

HOME!

'nuff said…

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

* Feature image: from The Arc

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The Boomerang Effect—A much-overdue Ethan Update

The Boomerang Effect—A much-overdue Ethan Update

 

HOME. AGAIN. Or was this a dream?  We were very excited to bring Ethan home on Saturday, April 25. We felt grateful that he avoided a trip to the Operating Room during that hospitalization; his medical team was able to treat him with non-surgical methods. Ethan took those two weeks in stride. When we brought him home that Saturday afternoon, he was back to his laughing and smiling self. We tried to take the weekend to rest and recharge, as best we could before hitting …

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Shabbat Shalom

Shabbat Shalom

 

Home is the where the heart is. It's also where Ethan is! And Scott, Alexia, Zakary, Elyse and Cincy. We are excited to be back together again after spending the last 29 days in the hospital. We are welcoming Shabbat as a family and enjoying the peace and wholeness it brings back into our lives.

 

Shabbat Shalom,

Alexia and Scott

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