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!

Sweet Serenity

Serenity saw Santa last night. When she was telling him what she wanted this is what she said:

 She doesn't care if she gets an iPad or anything else for Christmas. She wants her family all together and happy. 

We are going to try to  give her what she wants. 

Psalm 34:18 The LORD is near to the brokenhearted and saves the crushed in spirit.

I've been spending a lot if time driving back and forth to Children's Hospital. Belle has had some issues with her port as well as her regular transfusion. 

She has an amazing strength. Daddy told her last night what a trooper she is. 

("Let's go back to Florida")

She really is. And Children's Hospital of Pittsburgh has been such a blessing to us. 

But not just to us they take care if so many others with bigger health problems than Belle. It is a real eye opener. 

There is so much suffering just beyond our own little circles. 

During this blessed season I encourage each if you to reach beyond your circle to be a blessing to someone else either in word or deed. 

And hug your loved ones a little tighter. 

I know I will. 

Disney Daze in pictures

1 Samuel 16:7 But the Lord said to Samuel, “Do not look at his appearance or at his physical stature, because I have refused him. For the Lord does not see as man sees; for man looks at the outward appearance, but the Lord looks at the heart.”

I know better, I really do but I am human.  We(especially women)judge ourselves so harshly when we fall short of what we think is physical beauty.  We perm, straighten, pluck, tan, blush and bronze ourselves silly.  And we compare ourselves to unrealistic images.  

A few days ago I was looking at the internet news and clicked on one of those side headlines, it was something about the most photoshopped celebrities.  It was a real eyeopener.  Not even Madonna looks like Madonna!  

That started me thinking.  We(I)spend a lot of time before leaving the house on looking my best.  For years I have fretted over my thinning/greying hair, or the lines around my eyes. When someone may have thought I was Belle's grandmother, as soon as I got to the van I was calling my hair stylst getting an appointment to have my roots done.(true story)  

But I wonder, have I spent as much time or energy making sure my heart is as attractive as it can be?  Have I cultivated a beautiful spirit?  When the Lord looks at me is He pleased?

I guess having daughters is changing the way I think. When Serenity tells me I'm beautiful, I need to stop pointing out my flaws. I need to say Thank You and accept myself the way she sees me.  Because what am I teaching her if I constantly complain/put myself down for my perceived physical shortcomings?  I want her to see her own true beauty.  Can I find mine?  Can I cultivate my inner beauty and learn to love the lines around my eyes?  I still try to be attractive and I love how my hair is getting curly and fuller but I want to put more energy on the inner Jamie.

So I say, "Hollywood, you don't matter! I am who I am.  My goal is a better one.  I want to mirror God's love not Brittany's abs."

http://www.huffingtonpost.com/2013/06/12/celebrity-photoshop-photos_n_3428033.html
http://www.buzzfeed.com/jessicamisener/23-celebrities-before-after-photoshop
http://collegecandy.com/2012/04/21/54-photoshopped-celebrity-before-and-after-photos/#photo=1

Transfusion Monday

Belle is sleeping on my lap as her IV pumps 'go juice' into her 'magic button' 

Translation for those of you over 2: blood into her port access. 

When we were starting our second adoption and considering which special needs we were comfortable with we ruled out Thalassemia because... Well because we were lazy. I mean trips to the hospital every month for a whole day sounded like an ordeal. But we were wrong. These hospital days aren't so bad especially since she has a port. 

Most days at home I have dozens of things I feel like I should be doing, but on hospital day all I have to do is be with Belle. We have snacks, watch movies, get lunch, look at books, visit the kitchen for goldfish graham crackers and she naps. 

Oh sure there is some medical stuff going on but that's not my dept. someone else is in charge of that. I'm just in charge of being with my baby.