Pulse-Ox Screening for All Newborns

NEWS via PdHeart:

Dear Members,

It is with great joy and excitement that I am writing to
let you know that this afternoon, the Secretary’s Advisory
Committee on Heritable Disorders in Newborns & Children
(ACHDNC)voted to recommend that pulse oximetry screening
for critical congenital heart disease be added to the
newborn screening uniform panel!!!

The recommendation now gets passed up to Secretary Sebelius
for review and approval. We're almost there!

AnnaMarie Saarinen just called with the news. She has
worked tirelessly to advocate for early diagnosis and
screening and has effectively spearheaded this important
effort. You can follow her blogs on http://1in100.org

Thank-you AnnaMarie for your hard work and determination.
Thanks also to Dr Gerard Martin who REALLY listened to my
impassioned pleas and worked so hard to implement model
screening programs. I tearfully and joyfully post
Annamarie's message below:

"‎At 2:40 eastern time today, the national committee
on newborn screening voted to YES to recommend pulse
oximetry screening for critical congenital heart disease be
added to the newborn screening uniform panel. I don't even
know what to say right now...still in shock. Was not
anticipating vote until January. Have to hug Eve and have a
major cry right now. It's due time...all babies are finally
going to be screened before discharge. Policy priority #1:
DONE!!!!!"

This is indeed a red letter day for all of us.

Our voices are being heard and yes, we CAN make a
difference!

My love to you all,
Mona

Obsessed with the Boer War

I can't write blog posts or even watch TV.  I am obsessed with the Boer War - a war between the British Empire and the Dutch/Afrikaner 'Boers' at the end of the 19th C.   More particularly, I am obsessed with transcribing a diary kept by my Great Grandfather during his service among British forces in the Boer War.

The diary starts in September 1899 and I am now transcribing entries from mid December where he has just been placed in a unit manning a very big naval gun.

A page from the diary. 

It is exciting stuff but written in cursive with some quaint spelling and a distinctly old fashioned punctuation (they don't use many full stops or comma's, preferring dashes everywhere).  To further complicate my task, the diary was written in a carbon copy order book (probably from the book shop in Durban).  Each page is numbered (good) but in some areas only the carbon copies remain - the originals having been, perhaps, mailed or shared with others.  The remaining carbon has faded to the point of near illegibility and sometimes I puzzle for many minutes over a word or line.

To cover up my lack of blogging (nobody is complaining because my most loyal reader, my mother, is away at their beach cottage and my brother - according to Facebook - has LOST IT)  I shall offer up a few pictures to console you before returning to life with Wren and Frost (which is really fine, Wren doing okay at preschool but looking a tad "forlorn" according to Fred.)  I am not forlorn while he is at preschool so it kind of makes up for him being a tad sad.

Hluhluwe Game Reserve - September 5th 2010

Entering the park, you are warned about the dangers
of Elephants and ordered to remain entirely in the car
without arms poking out windows etc.

We liked the warning about elephants crossing
which they did at times.

 

Of course, pretty soon the Americans
had their heads out the window.

We watched this elephant for about 10 minutes while it ate most of this tree.
Elephants are very hungry (aka destructive) and tear down trees for practice (aka fun) even when
not that hungry.

This is a very cute baby zebra
until you realize it is peeing.  We started to say
that Wren was like a laxative for animals.
Whenever he was looking they would pee or poop
causing him a great deal of amusement.

This giraffe did not pee so Wren found it boring.

The first (white) rhino we saw.  These rhino were walking through
the burnt veldt which still had embers and small fires.

Wren has a odd expression because he is eating sweeties (candy)
He was often bribed with candy because he had to sit aroudn
for long trips in the car.  He also liked riding in the boot (trunk) and
not having to wear a seat belt!  God, I love seat belts.  Unbelted
children are a lot more of a nuisance!

This buffalo is pooping. Yes, really.

I just thought this was a really nice photograph.  My best pictures are of zebra because they are relatively
unconcerned by people and quite common.

The View from somewhere over something but no animals.  It was more often like this than the other pictures.

At picnic spots you can get out of the car and use the bathroom.
We saw nyala coming down to drink in the early
morning when we stopped at this river side picnic site.

.... and surprised some baboons eating seed pods on a tree.

We all love warthog.  When alarmed, their tails stick straight up like
aerials. 

First Day at Preschool

Today Wren started at his new preschool.  He was very apprehensive and worried about the details.  When I dropped him off he cried and stretched his arms out for me but I was firm and left.

Apparently he did 'well'.  I think that "well" might be preschool-teacher-speak for "he was freaked out but we didn't have to call you."

Going to preschool this morning.

He tells me he was sad and missed me but he had two friends who were girls and a boy and that the school has blue fairies and they bring them flowers and they give them things and they live in a tree but they had to dig up a tree to bring it inside for the blue fairies. 

Also, that they ate pasta for lunch and after lunch were allowed to have bread with honey.

And that it was TERRIBLE but ALRIGHT.

 The whole Waldorf experience has already had an impact on Wren.  He came home and went outside and spoke about fairies.  In the park this afternoon during Frost's soccer practice, Wren looked for trees where the fairies might live.

Also, he decided he was a dog and ran around with his tongue hanging out and picked up sticks from the ground with his mouth.  He also pretended to be a spider.  He says that they did not do this at preschool but I suspect that there was some bestial child at preschool who inspired him.

He never wanted to be a dog before?

This evening, Frost asked to help prepare dinner.  Apparently, his new teacher gives not too much homework and then allows them to do "alternative" homework including things like making dinner, doing sport and math or writing projects of their own devising.  I like this teacher.

Before the Dinosaurs we lived in Magnolia
At breakfast this morning, Wren asked me who built our house.

I explained that our house was built "long ago" by someone (1949) but Daddy and I built the kitchen.

Then Wren wondered how much it cost.  I told him it was a lot of money but we borrowed it from the bank.   He said "Before that you lived in a truck?"

"No," I answered "before that we lived in Magnolia.  You weren't born yet."

"Oh!" said Wren, everything now becoming clear.  "That was when the dinosaurs were still OUT."

"What do you mean, 'out'?"   I asked.

"Well, the dinosaurs were still out then" he repeated.   "Now they are gone 'stinct.  They DIED."

I wasn't quite sure where to go in the face of his bold compression of eras spanning millions of years into a scant decade.  Even creationism is not as bold.  Perhaps it is the power of the Waldorf Fairies.

Later, when I told Wren we are not going to buy something he wanted he suggested we "borrow the money from the bank."

Insurance / robbery update
Other good news is that Liberty Mutual is going to pay for both laptops and the camera stolen minus our $500 deductible.  That makes it a lot less than it could have been.  I am very impressed by them. I didn't have to fill in ONE FORM.  The cynic in me wonders whether our premium will skyrocket next year, but the service has been great so a small increase would be justified now that they know we are high-risk travelers to Africa.

Backlog of photos
Because of the loss of my laptop and the abysmal slowness of the local connection, I didn't get to post much about the last weeks of our trip.  I have a load of lovely pictures to which I am going to subject you.  Right now, I don't have time to write enough to do them justice but here are a few of the kids while at the Lodge in Hilltop Camp at Hluhluwe Game Reserve.  My many pictures of zebra will follow in the days ahead!

Wren, Frost and the Large Aloe

Frost climbs a tree in front of the lodge. 

The boys run down the road to the swimming pool.  This picture speaks to what is missing in a more ordered life.
I like the swimming pool being down a road by electric fence with bush-buck in the shrubbery and monkeys over
head.  This is the way it Should Be.