Friday, April 8, 2011

Her road of life...

(I took this picture of Baby Ruth at the hospital, post x-ray)

She didn't end up having her first surgery this week.
A conversation with the anesthesiologist the morning of
had us in the doctors office that afternoon...
We left with prescriptions to treat her pneumonia and
an ear infection...

It's good that Baby Ruth is such a people person...
The hand she's been dealt has her meeting
new people quite frequently...
New doctor
(she has 4 she sees on a regular basis)
New phlebotomist
(new one at least every 6 months)
New x-ray technician
(will be 3 this month alone)
I'll say...she handles the blood draws like an old pro...
doesn't even cry anymore.
And that's saying something because she's
had it done 3 times in the past 2 months.
(everything has come back lovely)

So anyway, a conversation with her pulmonologist
had me thinking...
She was talking genetic counseling and how it might
be a wise choice for Baby Ruth before she
decides to have children...
She also mentioned career choices that would be a big no-no...
the top of that list:
Hair Stylist.
(exposure to lung irritants is strongly forbidden for "Alpha's")
The thing is Baby Ruth has pretty fragile lungs...
not just because of her asthma.
Baby Ruth has Alpha-1 Antitrypsin Deficiency...
her phenotype has given her high odds of
developing Genetic Emphysema as an adult.
(80-100% chance)
Antitrypsin is a protein that's made in the liver.
It's used mainly by the lungs as a kind of "immune system"
(Google has more details if you get time)
With Baby Ruth, not only is her body deficient in this protein...
what her body does make is malformed, preventing
it from leaving her liver.
That last bit is why she
 is followed by a Gastroenterologist.
The build up of the protein in her liver
makes her liver "mad"
Her Gastro calls it:
Congenital Liver Disease
(liver disease present at birth)
  For all that could be going wrong
Baby Ruth is doing amazingly well...

I've decided to frame the picture at the top of this post.
To me it says:

Here's hoping her road of life will be long
and lined with wildflowers.

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