Bated Breath's Burst Bubble

As you may remember, I was a bit excited 2 weeks ago.  Josiah had last weighed in at 13lbs 2oz.  That was June 8th.  Fast forward to the end of July.  I brilliantly 'guestimated' (at home) a weight of 16lbs 10oz.  That result injected a, perhaps overinflated, sense of excitement (and desire to 'knock their socks off').  I was rearing to get Josiah back to the MD for an official weight check.  Of course, I did what I threatened to do.  I called the pediatrician's office and had him back in there on two days later.

August 1st.  I had to settle for a different MD - Josiah's was on vacation (he had some nerve when I was ready to gloat :).  Josiah was weighed.  15lbs 11oz.  Crap!!!!  A momentary disappointment, followed by "Hey!  He gained over 2 lbs in less than 8 weeks."  If I hadn't thought he weighed almost 17, I'd have been dancing down the hallway at the pediatrician's office.  Unfortunately, I did think he weighed more.  Oh well!  I made one more appointment for mid-August in preparation for the audiology clinic appointment.

Mid-August....back to the pediatrician.  9 month visit (one month late), weight check, and ear check.  Weigh-in - 15lbs 3oz - OUCH!  It was an 8oz weight loss in 10 days.  Damn!  It's the never ending roller coaster.  Well, it wasn't that bad.  Josiah's regular pediatrician was back.  Despite the 8oz weight loss, the MD was thrilled with the 2 lb weight gain over 2 months.  Things are moving up, slowly but surely.  (Kel, needless-to-say, I never got the satisfaction of the FU smile lol).

No shots for the 9-month check - thank goodness!  Even better, Josiah had no fluid in his ears.  That should bode well for audiology!  Right???

So that's that.  The weight is improving but not as quickly as "they" would like, sometimes.  We're just muddling through day by day.  We smile at every little accomplishment.  We dream of the next one.  We continue to watch with amazement, the blessings we have been gifted.

Next stop, Boston....the audiology appointment.  I love walking into that clinic.  You enter into a professional building on a busy city street.  You pass the security desk, press the elevator button, and ultimately reach the destination.  As the elevator doors open, the first visible 'landmark' is the Big Bird on the wall.  He silently stands there to greet you, as if to say "Welcome." 

We were there early....40 minutes early.  Josiah was called fairly quickly - impressive in itself.  They checked his ears for fluid and found none (YAY!!!!).  He didn't like the ear probes.  Therefore, the test result was not perfect.  Ok, step 2.  I carried Josiah into the testing room.  He sat on my lap.  An MD sat in front of us facing Josiah.  She acted goofy in an effort to maintain his attention.  Now the 'test' began.  Noises (varying from tones to music to voices) would sound (in varying volume levels).  They wanted Josiah to turn his head left or right - to correspond with the direction of the 'noise.'  Well, he did - sometimes.  His facial expression changed EVERY time indicating he could hear.  However, he picked and chose when he wanted to turn his head. 

They say the test was inconclusive.  They say "developmentally" he's still a bit young for this test.  Really????  I say....he thought their test was stupid :)

We'll go back, again, in a couple of months.  Until then, Josiah continues to inspire me everyday <3.  I love you, little man!

"Don't ever underestimate me!  I would never do that to you." 

A Hot Topic: Down Syndrome in the News

"HHS mandate"

Source:
https://docs.google.com/document/pub?id=1w48IMDEXH4w-ZWW802xAaqiYJQ-NvuL-4UegPg1_YIE

The recently finalized Health and Human Services (HHS) regulations will mandate that private insurers provide no-cost prenatal genetic testing for all expectant mothers.  Down Syndrome advocates are calling for the mandate to be rescinded.  Here's why.

The mandate is included in the Patient Protection and Affordable Care Act's (PPACA) requirement for no-cost preventative care services for women.  To include this mandate under "preventative care" implies that Down Syndrome can be prevented (which it cannot).  It also seems to imply that it SHOULD be prevented. 

As written now, the HHS only requires no-cost testing.  It does not, however, require no-cost supports, etc so that an expectant mother may make a more informed decision based on the findings of the prenatal testing.

Also of note: Mammograms are not included in the mandate, and mammograms would prevent cancer deaths.

Another important note: The screening for DS is funded by the government in the HHS mandate. 

"The Value of Prevention"

Source: http://www.businessgrouphealth.org/benefitstopics/topics/purchasers/condition_specific/evidencestatements/neuraltubecefects_es.pdf

It is reported that the life-time cost for all cases of Down Syndrome (in 1992) exceeded 1.8 billion dollars.  This includes incremental medical, developmental, and special education costs as well as "lost productivity and earnings due to disability and death."

"The economic benefit of prenatal screening is defined as the averted cost from preventing the birth of a child with a chromosomal abnormality."

IDSC

Source:

https://www.facebook.com/profile.php?id=1649516049#!/IDSCforLIFE

The International Down Syndrome Coalition (IDSC) for Life has two major concerns with current health care mandate . The first concern is for the child who is in the womb, and is diagnosed with Down syndrome. Currently, the termination rate for children who are diagnosed in utero is reported to be near 90 percent in America. The International Down Syndrome Coalition for Life is concerned that the current health care bill will encourage families to abort the life of a child who happens to have Down syndrome, in the name of cost effectiveness.

“Will there be a panel that will decide that the price savings of terminating the pregnancy outweighs the dignity and value of the life of a child? Will it then become a patriotic responsibility to end a life that others deem less than perfect? Will there be measures written into the reform that protect the life of a child diagnosed prenatally with special needs?

“Since the goal of the healthcare reform bill as it is written is to help save the nation money, the IDSC for Life believes these are vital concerns which must be addressed.

“Our second major concern pertains to the individuals with Down syndrome who have been born. Currently, these people are given therapies and life-saving surgeries to help enhance the quality of their lives. Under HR 3200, can we be sure that this will continue? Will their medical concerns be treated equally with individuals who do not have Down syndrome? The IDSC for life is very concerned that our children, grandchildren, sisters, brothers and friends will not be given equal access to health care, because of their diagnosis. We believe that each individual deserves medical care that is needed to ensure that they can live full and happy lives. We cannot help but wonder if this health care reform act will actually lower the quality of care that our loved ones require.

“The IDSC for Life would like to see provisions in any health care reform bill which will ensure the protection of the lives of individuals with disabilities. We believe those provisions must be written into any health care reform to protect those in the womb, and those who are already born.”