Monday, August 31, 2015

Tales of the Anemic

The anemia saga continues...

We met with our Hematologist last week and we're delighted to announce that our Queen has iron levels that are *almost* on the extremely low side of normal.


Which I think is pretty darn fantastic considering we had only finally found a way to make her actually swallow her iron supplement instead of spitting it all over us the week before.

We tried everything.  Name a juice and we tried it.  It turns out Lily is not a fan of juice.  Any juice.  Although she seemed especially offended by orange juice.  Which is pretty darn funny when you take into account she spent two weeks on an "orange" diet eating only peaches, macaroni and cheese, and cheddar cheese slices.  But even then she refused to eat mandarin oranges so maybe her embargo on orange juice isn't so surprising after all.

So no juice.  Not milk, even flavored milk.  Not in her pedis sure.

It got rough.  Sometimes nights with Lily are hard.  She will wake multiple times and require a bottle and a turn in the rocking chair to get her to go back to sleep.  One night was especially hard.  I was up with her three different times, with three different bottles, but without the cognitive ability to think ahead.  If you give a baby a total of four bottles in a ten hour period you might want to consider changing said child's diaper at some point.  I did not change said diaper.  There is no diaper in the world that could have handled what she unleashed.  It tried valiantly but my darling woke in a puddle.   She smelled faintly of urine.  We changed her.  Tempers are short when exhausted parents try to give her her medicine  allow a girl to practice her spitting skills.  So now we have the faint smell of urine and dirty nickels.  Then she threw up (maybe if she had done that 12 hours earlier we could all have gotten some sleep).  So my sweet sweet princess smelled of urine, dirty nickels, and now vomit.

She travels under the hobo handle Curly Slim.

But finally, after much trial and error we discovered the magic concoction that will make Slim drink her iron supplement and sign for "more."

Pina colada mix, minus the rum of course.

I have a nosey neighbor who likes to look in our windows.  I often wonder what that old woman thinks when she sees me mix a shot of pina colada twice a day to give to the baby.

I am expecting CPS to arrive on my doorstep any day now.

Monday, August 10, 2015


We've been selected!

"The 2015 NDSS Times Square Video will play in the heart of New York City on the Clear Channel Spectacolor screen in Times Square on September 19, 2015 at 10 am ET."

On a whim I submitted a photo of Lily to the NDSS for consideration for their video.  I did it an hour or two before the deadline (or just after if the deadline was Eastern Standard Time).  I am honored that our picture of Lily will be included with over 400 other pictures on the screen in Time Square as part of the NDSS New York City Buddy Walk.

I love being a part of this opportunity to showcase Down syndrome as something beautiful and ordinary and part of life.  I'm sure this video they are compiling will help promote not just awareness but acceptance of differences.  There is a hashtag that goes around Instagram #morealikethandifferent.  More alike than different.  I hope that showing picture after picture after picture, snapshot after snapshot after snapshot of the lives of individuals with Down syndrome will show they aren't that different after all.

They are people.  With feelings, ideas, hopes and dreams.  They are worthy of dignity and respect and love.  And they are loved.  So very loved by people who hope and dream for their acceptance and safety in this world.

I'm so excited Lily was selected.

I just wish I could remember which picture I submitted.

I'll be sure to link to the video on Youtube when it is avaliable.

Saturday, August 1, 2015

Anemia Woes

Curse The Queen Bean and her unusually well developed spitting skills.

We all smell like money.