From Melinda on 12/15/2004
Here's an update on Angela as promised, with lots of joy to report!
We are delighted to tell you all that the opening on Angela's head is now
completely healed on the outside! She no longer needs to wear a bandage
and finally I can hold my daughter close and smell *her* smell instead of
chemical bandage smell. She has a beautiful swallowtail butterfly-shaped
scar on the back of her head and healthy skin and hair all around (though
still boasting the "tonsure" look where we shaved her hair to try to get
the bandage to stick better). Maybe I'll try to get a picture of it for
those interested. Personally I think it's pretty cool! The bone is
still open underneath but it may grow in too--that remains to be seen.
Also, and maybe because she's completed the work of healing her head, she
is now steadily gaining weight. She is 6 lbs 10 oz now. She's been
gaining an ounce or two a day for the last week or so, though still
taking in about the same amount of breast milk. The funny thing is that
she started gaining even when drinking only the lower-calorie foremilk
for a week. Wild. I guess when she makes up her mind to something she
just does it!
In all other ways, Angela continues to look great, delight us with her
expressions and sparkling eyes, and touch us with her peace. She's
really getting into a good rhythm of eating, sleeping, and awake times.
She even has made some sort of peace with the car seat, (sometimes). She
has now been to two song swaps and a dance--Sunday I went to the English
dance in Norwich with Angela and my mother, and I danced about 4 dances
with her in the sling, happily snoozing to the music & movement.
As far as how Dave and I and the kids are doing, it's really hard to say.
It's a very bizarre situation, with such conflicting thoughts and
emotions. We are so delighted with her, and so pleased with how she's
doing, and so deeply in love with her as she is with us now. And yet we
know that her stay here is limited, and that even if she does stay for a
while she will face major challenges in development. It is much harder
in some ways to contemplate her death now that we have known her for a
while--in some ways it made more sense for her to die earlier, as if she
would just leave as easily as she came. On the other hand, we have
enjoyed these days with her so much we wouldn't have them gone. It's
strange to be talking to Hospice people and planning for her burial on
one hand and on the other hand reading about other children with Trisomy
13 who have lived for years (about 10% do live beyond the first year) and
thinking about the challenges involved in that and talking to early
intervention specialists. It's crazy!
I guess there's a lot of other things going through our heads but this
time at the computer is stolen from sleep time and it needs to come to
and end now.
We continue to be deeply grateful for the thoughts, cards, prayers and
hot meals that are still coming every week and sustaining us--physically,
emotionally, spiritually. May all of you be touched by deep joy as we
Love from the Rickers--David, Melinda, Karina, Dylan, and Angela