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!