Happy anniversary Serenity

Ten Years.  Ten very short years.  That's how long we have known Serenity.  I'm not sure where the time went.  My sweet girl will be 11 this month.  HELLO!  Not sure how that 11 month old they handed me in China turned into an 11 year old.  

Look how scared she looks.  She was not very happy at all to be handed to us.  She was sick and scared and well, just plain mad to have her world shook up.  She would not eat solid foods for us for a couple of months.  She would only take a bottle.  Her first solid food with us?  Fudgesicle  Behold the power of CHOCOLATE!

On the anniversary of joining our family we try to do something special with her.  This year we took a train ride. We took a trip on the Oil Creek and Titusville Railroad  It was a good time with the whole family minus Dean and Nikki.  

On the banks of Oil Creek

Big Brother and Big Sister

My beautiful daughter.

Happy Anniversary

More from the Windy City

Saturday was a full day at the conference. It was so neat to be in a room full if people that were walking similar paths. And we got to meet friends from our Adoptive Parents of Thalassemia FB group

Good looking bunch , isn't it.   The couple on the far right even did a presentation on adoption Sunday morning. 

Saturday night was the 'Mad Science Dance Party'complete wth party favors. 

We all had a good time as you can see. 

Sunday brought more speakers and group sessions. I was especially inspired by the yoga teacher's session.  And the young women that spoke about why it was so important to remain adherent to chelation brought herself to tears so moved me. And you all know my strict rule that no one cries alone in my presence....

The main lesson I learned this weekend was chelate, chelate, chelate and then chelate some more!  

After the conference ended Sunday we took the opportunity to visit some dear friends that live in the area. 

Serenity and Katie were from the same orphanage in China and adopted at the same time.  'China Sisters'. 

And of course we couldn't leave Chicago without Chicago Deep Dish. 

Soooo good. I promise I will be food responsible tomorrow.....

Little bit this, little bit that.

Greetings from Chicago!  Our merry band of travelers is in Chicago for the weekend to attend the Cooley's Anemia Foundation Patient and Family Conference.  Cooley's Anemia is another name for Thalassemia.  Last night was the welcome reception and it was so neat to be in a room full of people that 'get' thalassemia.  There is so much optimism about the future of treatments and options, the energy is incredible.  

And speaking of incredible, the food was WOW!  Thalassemia is kind of 'rooted' in south Asia, and the Mediteranean so guess what the food was.  Yep, Chinese and Italian. Greek.  The girls(as well as mom and dad) were pretty happy. 

We can't wait to see what today brings.  There will be seminars and speakers for us to learn from and even sessions for the kids.

In other news, we have received a few updates on Betty June.  She is 40 lbs and 36 inches.  She speaks Mandarin and Cantonese. She looks pretty happy in her pictures.  We didn't see Belle's smile until we were in China.  It is good to see Betty June's smile.  Being a 6 year old she has already lost a few baby teeth and is her front two teeth in.  That made me a little sad to miss.  

If you notice in some of these pictures she is wearing a MICKEY MOUSE shirt.

This same little boy is in most of her pictures.  He appears to have Down's or something like that.  I hope he won't miss her too much.  That kind of makes me sad to think about so when you say your prayers, pray for him too.

“How can there be too many children? That is like saying there are toomany flowers.” ― Mother Teresa

When Matt and I got married we wanted 6 children.  We were young and full of hope and vigor.  After being married 3 years our first son was born.  Matt was 24, I turned 23 the day after Mattie was born and our whole lives were ahead of us.  Mattie was a wonderful, easy baby.
Less than 2 years after Mattie was born along came Dean AND Donovan.  Identical twin boys born when Mattie was 22 months old gave us 3 boys in less than two years.  Life was hectic to say the least.

I'm not gonna lie.  We had fun.  I loved being the mom of boys.  They earned the nickname
'The Boybarians'. The idea of six kids seemed less than ideal while they were little.  It was fun but hard.

Fast forward to the boys getting a little older and we think maybe we could handle one more.  God's plan for our family was to add a daughter born in China.
 
Serenity was 11 months old when she came to our family.  Matt was 38, I was 37, Mattie was 14, Dean and Donovan were 12, and we thought our family was complete.  3 Boybarians and our Girlzilla.  Maybe our plan is to be a family of 6 instead of having 6 kids.

Life goes on as life does.  There were first dates, first days of school, and drivers licenses, proms, birthday parties and graduations and then this happened.


Dean got married!  We were happy, we were thrilled.  His wife, Nikki, is a great gal and we feel so blessed to have her in our family.  But where did the time go?  When did we stop being a young family?  We weren't ready to start the empty nest.

So last summer we added Belle to our family.  She was 19 months old when we brought her home.  By now dad is 47, mom is 46, Mattie is 23, Dean and Donovan are 21 and Serenity is 10.  Our claim to fame is having one child in each of the last 4 decades(89,91,91,03,11).

We discovered something about ourselves, we like being parents alot.  More than we thought we did. We liked raising our boys.  Our best times involved our family.  

28 years ago our family plan was to have 6 kids.  Time to finish that plan.  

This fall we will add Betty June to our family.  3 Boys, 3 Girls.  3 bio, 3 from China.  3 adult, 3 still children.  All miracles, all blessings, all ours.

Serenity the Tree

My older daughter,Serenity, was in her first theatrical production Wednesday night. It was awesome!  She had three parts. 

Biglam the Troll

A Tree

Excuse me, a Talking Tree

And the Town Crier

It was her first year and she really enjoyed it. Can't wait to watch her on the stage again. 

It was a rare occasion to have the whole family together. So we took the opportunity to extend the evening with dinner.  

Dailey Men

As my mom would say the Whole Fam Damily

Good looking bunch. 

I am so blessed!

Thalassemia....ain't no big thang

From the CDC:

Thalassemia is an inherited (i.e., passed from parents to children through genes) blood disorder caused when the body doesn’t make enough of a protein called hemoglobin, an important part of red blood cells.  When there isn’t enough hemoglobin, the body's red blood cells don’t function properly and they last shorter periods of time, so there are fewer healthy red blood cells traveling in the bloodstream. 

Red blood cells carry oxygen to all the cells of the body.  Oxygen is a sort of food that cells use to function.  When there are not enough healthy red blood cells, there is also not enough oxygen delivered to all the other cells of the body, which may cause a person to feel tired, weak or short of breath.  This is a condition called anemia. People with thalassemia may have mild or severe anemia.  Severe anemia can damage organs and lead to death.

 Sounds like scary stuff,  doesn't it?And potentially it can be very scary. But here in the US it is so very treatable. 

Belle has the most severe type of thalassemia, beta thalassemia major. As a result she goes every 3 weeks to Children's Hospital for a blood transfusion. Because of so many transfusions there is an unavoidable build up of iron in her body. That sounds weird doesn't it?  Someone with chronic anemia has too much iron in their body.  No matter how odd that sounds it is true. So Belle takes a daily medication to get rid of the excess iron. It is called Exjade. 

Every morning we crush up the plain white tablet and mix it with juice. Some days she drinks it down better than others. Her dad does a great job as cheerleader to get her to drink it. She is turning in to a daddy's girl. 

Belle's prognosis, if we follow her treatment plan, is very good. She can have a normal lifespan, grow up, marry and have biological children.  There is very little she can't do.  

So if you donate blood, thanks a whole lot. If you donate to children's, thanks. Because of you Belle and kids like her can live a normal life span.  

We were scared at first. But we've been scared before. I still remember the look on Matt's face when he found out about the twins!  But it turned out to be something that,with the help of the thalassemia community's knowledge and support of friends near and far, we can do. 

And any bother or inconvenience gets forgotten pretty quickly when I look at this face

changing my name

I decided that our blog name was boring, so I changed it.
Going from Dailey Updates to Sing a Song of SixKids.  A little twist on:

Sing a song of sixpence,

A pocket full of rye,

Four and twenty blackbirds

Baked in a pie.

When the pie was opened

The birds began to sing—

Wasn't that a dainty dish

To set before the king?

The king was in the counting-house

Counting out his money,

The queen was in the parlor

Eating bread and honey,

The maid was in the garden

Hanging out the clothes.

Along came a blackbird

And snipped off her nose.

And a clever play on the fact that by the end of the year we will have Six Kids!