She's Money!

Our little Queen is anemic.

So Yay!  We get to add another specialist to our team.

It is totally fun to call the Hematologist and have the recorded message say "Thank you for calling The Children's Hospital Pediatric Oncology Department."  And by fun I mean not fun at all.  It makes your heart stop.  I hung up the phone and double checked the phone number.

Yup.

I was in the right place.

In addition to working with your run of the mill blood disorders a Pediatric Hematologist also works with blood cancers.

Children with Down syndrome have a higher risk of developing leukemia than the general population.  Readers of my other blog know my Mother died from cancer.  It was breast cancer, but as far as I'm concerned cancer is cancer.  Chemo is hard.  And I live in fear of my baby, my sweet sweet tiny perfect baby having to go through that.  There nothing I can do to prevent it if it is going to happen to her.

If there is a silver lining it is that the same extra special extra chromosome that makes a person with Down syndrome more susceptible to leukemia also gives them greater than average odds at beating leukemia.

Which is all neither here nor there except it gave me a heart attack to hear my Pediatrician had looked at my baby's blood work and referred me to an oncologist masquerading as a hematologist.

Our Hematologist is fantastic.  He went over every result from our blood test explaining all the number to me, and how the numbers interact with one another,  And yes, while he does deal with super scary blood cancers, he also treats your run of the mill blood disorders, like anemia.

And Lily is anemic.

He prescribed some heavy duty iron drop to be given twice a day.

He warned me the iron drops taste bad,  they will turn her hippo teeth black temporarily and they make her poop scary dark colors.

Awesome.

What he didn't tell me was that my baby was going to start smelling like a bag of old nickels.

The Hard Times

So we have had a rough week with Lily.

I wasn't kidding when I said that she is an angel unless she is teething.

And she is teething hard right now.  Working on that last "hippo tooth."

She is crabby, and won't eat and won't sleep and is generally making life horrific for everyone in the house.

The not eating is especially bad because she is in feeding therapy, and I spend an obscene amount of time thinking about what to feed her.  Thinking of textures and tastes and nutrition.  Planning meals for Lily.  Spending hours trying to get her to eat.  She is anemic.  And it is dietary induced anemia.  For the first year of life she existed on expressed breast milk.  Then she switched to cow milk.  Neither of which have iron.  So I worry and try and give her roughly eleventy billion opportunities to eat every day instead of just giving her the bottle she really wants.

And she isn't eating.

Because her mouth hurts.

And the not sleeping is especially bad because I do not do well with sleep deprivation.  In college I could stay up cramming the night before a test, ace the test, and then go dancing all night the next night.  But now?  I'm dying.  I'm actively praying for the sweet release of death.   And I'm kinda hoping there isn't an afterlife because I just want the sweet oblivion of nothingness for a bit.  Like a Buddist nirvana afterlife, floating with the energy of the universe for a time.

We did take our Sweet Lily Bean to the pediatrician to be sure it was only teething and not something more serious.

After an thorough examination it was determined to be teething but she threw in a referral to an ENT just for fun because while they weren't infected Lily's tonsils were very very large.  Because what we need is another specialist.  She also suggested we give Lily 5ml of benadryl at bedtime so we ALL can get some sleep.

It didn't help.

I am exhausted.  And last night I discovered that if you turn the new baby monitor all the way down to the lowest setting it doesn't make the cries quiet, it puts the baby monitor on mute.

Awesome.

I slept through the night last night, but from Lily's attitude this morning I'm guessing she had a rough night and she was pretty cranky about it.

So really no blogging.

Too tired to string words into sentences.

Too tired to take pictures.

Teething stinks.

Be, Demand & Inspire Change

Do you remember when I mentioned other bloggers with better voices?

This is what I meant.  I love what she has to say.  And the great love with which she says it.  If you have a few minutes please grab a tissue and take the time to watch this video.

Rule #3

Lily loves her bathtime!

We have two rules for the tub.

1)  We do not stand in the tub.

2)  We do not poop in the tub.

Lily likes to play fast and loose with both rules.

Tonight bathtime was provided by her oldest sister.

Afterward I found Pork Chop...my children would like their anonymity preserved, so with the exception of The Queen they will all be referred to by the nicknames given to them on my other blog....anyways...I discovered Pork Chop furiously sitting at the table working on her latest puzzle.

Her entire body language screamed "I'm so angry about this I'm going to hurt someone."

I attempted to slowly back out of the room.  She is a teenage girl and sometimes, for the safety of everyone, it is best not to engage.

But it was too late.

I was spotted.

"YOUR BABY!"  she accused.  "She and I aren't friends.  I'm not talking to her."  She paused, took a deep breath, and then got right to the heart of the matter "Your baby pooped in the tub!"

"No" I said in mock horror that I hoped read as real horror to her ears.  I looked a Lily who smiled back as if to say "It's true, I totally pooped in the tub.  Again."

"She pooped in the tub and when I was fishing it out of the bath water she started handing it to me.  HANDING IT TO ME."

"She was trying to be helpful?"I offered.

But the list of crimes was not complete yet.  I did not fully understand all my poor teenage daughter had been forced to endure.

"So then I cleaned the tub and ran new water and washed her and then SHE POOPED AGAIN.  AGAIN!  Only this time it was a wet poop and she THREW IT AT ME! SHE THREW HER POOP AT ME!"

I'd like to think that at this point in the parenting game I've developed a fairly decent poker face.  You know those moments when you have to discipline your child because their behaviour wasn't socially acceptable and you have to teach them not to be little jerkwads, but in reality you really just want to laugh your butt off because what they did was so unexpected and funny you can't help but laugh?  I'm usually really good at not laughing.

I looked at Lily.

"Did you throw poop at your sister?"

And I swear on all that is holy she gave me her evil laugh.

I meant sternly to tell her "we do not throw poop at your sister."  But I couldn't.  The evil laugh did me in.  I began laughing so hard I couldn't stand.  Her cuteness saved her...again.
 
We'll add a third rule for bath time tomorrow.

Signing Success

There is debate within the Down syndrome community on the idea of teaching children with Down syndrome sign language.

Generally speaking there are two schools of thought:

1)  Children with Down syndrome will have the desire to communicate as well as the gross/fine motor skills necessary to sign long before they will have the oral motor skills to speak.  So giving them tool to communicate is good idea that can prevent a lot of frustration on the part of the child.

Or

2)  Equipping a child with Down syndrome with a means of communication other than speech will hinder future speech development.  Without the frustration of not being able to communicate they may not feel the push to do the hard work that is developing speech.

This is an over simplification of things, but each side makes valid points.  I think it really boils down to what works for your family.

We have chosen to try to teach Lily sign language.

And for six months I felt like an idiot signing "eat" and "more" as she blankly looked at me and refused to eat.  Over and over I mimed milking a cow as I offered her bottles of milk.  I pulled my hand down my face for sleep every nap and bedtime.

Lily just blinked at me.

Then one day it clicked.

I was in the kitchen and she crawled in making her sleepy whiney noise.  I asked her if it was time to go to sleep.  She brushed her hand down the side of her head.  I told her I would make her a bottle, and I noticed her little hand was clenching and unclenching.

She knew she was going to get milk.

About a week later I was laying on the couch, she cruised over to me, got right in my face, looked me right in the eye, she really made sure she had my full attention, and she signed "eat".

It was so simple, and it was amazing.

Her vocabulary now includes "eat," "sleep," "more," "milk," and her favorite "all done."

Every day we look up new words to use with her as we go about our day.  "Bath," "chocolate," "celery," "popsicle," apple," "good".  All my children are involved with looking up, and using signs with Lily.

Try as we might she refuses to sign "Mom," or "Dad."

The bad thing about child rearing theories is that you can't tell if your theory is yielding good results until the child is fully grown.  I think that is why theories tend to cycle every fifteen years or so.  Dr. Spock, Ferberizing, Attachment Parenting.  It cycles around.  So is this ultimately a good thing?  Or in a few years will I be here lamenting about Lily's unwillingness to talk because it is easier to sign?  Only time will tell.

Until we find out that signing was the worst thing we could have chosen to do I'm gonna be a proud Mama and show of video of Lily at naptime today.

And a little video from dinner.

Her version of more is evolving.  I think it is adorable and so dainty.  She didn't want to sign sleep because she didn't want to go to sleep.

Teething Woes

And we can cross apple slices off the list of acceptable food.

But we can move celery sticks from the inedible column to the "Best Food Ever" column.

Her need to constantly gnaw on a cold celery stick combined with her general cranky mood and lack of sleep lead me to believe the Queen is finally getting her fourth tooth.

My other children were late teethers, growing their first tooth around nine or ten months.  

The Queen got her first tooth at sixteen months.

I've heard this is normal for a child with Down syndrome.

Annnnnnd she started with her molars. 

Also normal for a child with Down syndrome.

My oldest calls them her "hippo teeth" because you can only see them when she opens her mouth really wide.

Lily usually has a very high tolerance for pain, not complaining about an ear infection until her ear drum has burst, or not letting us know she has strep until her tonsils are so swollen they're touching.

But teething is kicking her butt.

And mine.

Good thing she's cute.

Picky Picky

My name is Lily

And after seven and a half months of weekly feeding therapy I have mastered the honey bear!

This is kind of a big deal.

And I have all the skills I need for eating, except rotary chewing.  But that is a work in progress.  I can bite, chew, move food laterally with my tongue, and I know how to handle myself if I get a bite that is too big for me to manage.  I can avoid choking.

I can eat.

But only white food.

I like to taste everything.  But I will only eat a measurable quantity of white food.

I eat noodles, and apple slices, and bananas, and yogurt.  But only if it's vanilla yogurt.

And I drink white milk.  In a pinch I will accept chocolate pediasure.

End of edible list.

The inedible list includes strawberries, peaches, watermelon, really all nonwhite fruits, all vegetables, most crackers, and all meat.  And oddly enough I won't eat apple sauce.

Speaking of white things, I've really enjoyed watching my Mum's hair turn white as she worries herself in knots trying to feed me.

Why I Blog

Earlier this week my Dad and my StepMom graciously watched the children so my Husband (i.e. The Greatest) and I could escape for one glorious night with no children.

I can't even remember the last time we spent a night with no children.

We were just a tiny bit excited.

The Greatest knew a guy who arranged for us to stay in a suite on the top floor of a local hotel.

It was amazing.

It has ruined me for all other hotels.

From now on I can only stay on the top floor with an amazing view of the city.

We spent the afternoon exploring the city.  And that evening we found ourselves in the hotel restaurant asking each other 36 Questions to Fall In Love.  Not that we aren't already deeply in love, 17 years and five children would suggest that we at least kind of like each other.  But it was so very interesting to rediscover things we thought we knew about one another, and to see how we've grown and changed together. I highly recommend it.

One of the early, easy, questions queried if you would want to be famous, and if so for what.

I don't want to be famous.

I love my quiet little life.  I might enjoy having access to the monetary rewards that seem to follow infamy, but not the scrutiny that follows the famous.  I just want to live my life quietly, with dignity (people who know me in real life need to take a moment to stop reading and laugh at the word dignity being associated with me, I am not very dignified.  I try.  I fail.  Go ahead and laugh.  I'll forgive you), raising the best little human beings that I can.

But if I were to wake up and find myself famous, to have a voice, and a large audience to speak to, who would listen and really hear what I had to say, I would use it to speak for my daughter.

My youngest little poppet has Trisomy 21.  Better known as Down syndrome.  (Pro tip, Big D, little s)

She is pure joy.

Unless she is teething.

And then she isn't.

I would use my platform to change the world for her.  I want to create a world where she is included, accepted, loved.  A world where the accepted "cure" for Down syndrome isn't abortion.  A world where parents don't fear when they learn they are going to have a child with Down syndrome.

There is no reason to fear.

Having a child with Down syndrome is a lot like having a child.

Because it is having a child.

A child who learns and grows with her own likes and dislikes and personality.

My Husband really is The Greatest and he believes I could do this.  He believes I could singlehandedly change the world.  He encouraged me to start a blog, or write a book or submit articles to The Mighty.  To find my voice.  To share our experiences and the joy that is Miss Lily Bean with the world.  He believes I could make a difference.

Do I think this will make me famous?

Goodness I hope not.

There are many many many many many blogs like this one out there.  Written by better writers.  With better pictures.  With better voices.

But I would like to add my voice to the chorus.

I would like to stand with the others who stand and proudly declare

"I didn't know I wanted a child with Down syndrome until I had one."

We are the parents of the lucky few.

And if I can create just a little more awareness, acceptance, education in the world, then that is a beautiful thing.

Welcome

So this is my Husband.

He is ridiculously good looking and pretty much my favorite person in the whole wide world.

These are four of our five urchins

So cute I can hardly bear it.

And this is our Lily

And this is our little corner of the internet where we share our beautiful life.