A march, a birthday, a hospitalization

  • On April 30th, the kiddies and I walked for our local chapter of the March of Dimes. With the generous support of our friends (even ones we’ve never met!) and family, over $3300 was raised for our walk. For those of you who contributed…. thank you, thank you, thank you, thank you!

  • Earlier this month, Andrew and Eleanor celebrated their first birthday. What a first year it has been for all of us. In the Korean culture, there are two celebrations in a baby’s first year of life. The first is called the baek il and takes place at 100 days of life. Reaching 100 days was celebrated because of the high infant mortality rate years ago. One of Andrew and Eleanor’s great grandmothers, for example, lost three babies before 100 days. On Andrew’s 100th day, his health situation was extremely precarious: he hadn’t eaten in almost three months, was experiencing symptoms of malnourishment, and heading towards liver failure. It was an especially sad day for our family. From that point, it would be two more months before he came home. The second celebration is called the doljanchi and is the first year birthday. Having spent much of the year wondering whether or not Andrew would even survive his first year, this birthday was especially meaningful for us.

    One of many family photos. Taken by our very talented family friend, Esther.

    Another family photo. This one was taken by my brother, Johnny. Here, Eleanor is trying to choose between money (for wealth and prosperity), a spool of thread (for a long and healthy life), a pencil (for scholastic achievement), a reflex hammer (a nod to her father's profession), and a copy of Shakespeare's Hamlet (a nod to mom's profession). She chose the money. For Andrew, we rigged it a bit and chose for him the spool of thread. This is also the only photo from the party of Andrew smiling.

  • Two days after the party, Andrew was–yet again–hospitalized for another EEG to monitor whether or not the Vigabitrin was working. While on Vigabitrin, Andrew has been the happiest and most comfortable he has ever been in his life. There was no improvement in vision or physical development. But he was happy! And responsive to sound and touch! Smiling! Cooing! Taking regular naps during the day! Taking 2-3 meals of solids a day instead of one or none at all! He even stopped holding his breath and passing out all the time! We were so sure that his EEG would correspond to these positive developments. Nope. They did not. The EEG turned out to be exactly the same–horrendous and hypsarrythmic–as it was pre-Vigabitrin. So now we’re weaning him off of Vigabitrin and starting him on seizure drug #4: Depakote. Why not just keep him on it if he’s so happy and comfortable? Well, if you let hypsarrythmia EEG patterns go on for too long… bad, bad things happen. Andrew has already experienced much of its consequences. Hopefully, as we continue to wean Andrew off of the Vigabitrin, his baby happiness and comfort will remain preserved.

    Cuddling with a stuffed sheep that makes whale noises, a gift from one of Andrew's awesome therapists.

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    5 Responses to A march, a birthday, a hospitalization

    1. Anna Dell'Olio--the sub @Stuy says:

      The pictures are gorgeous. A belated Happy Birthday to the little ones. You, all, are in my thoughts and prayers.

    2. Alison says:

      Happy birthday to your little ones. What a shame about the medication not working. I hope you have more success with the next one.

    3. Angela says:

      love you guys! you are all beautiful. give andrew an extra little squeeze for me 🙂

    4. Sophie Oberfield says:

      So sorry I missed it! I heard it was fantastic. I look forward to visiting you all this summer! Much love.

    5. Wow, I love hearing about the Korean traditions. I definitely want to try the symbolic things with my boys and see what they pick. Their first birthday is coming up soon, I so I just might do that!
      I’m sorry your 100th day wasn’t very good though. My great-grandmother also had twins who didn’t survive and though family lore is fuzzy, I’m sure it’s because they came too early. I prayed to her to help me make it to term, but she must not have heard me. 😦

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