End the R Word 2014

    Today is 'End the R Word Day' so I wanted to share a little post from the NDSS on how children with Down syndrome should be refered to.  Spread the word to end the word! 

USE THIS LANGUAGE WHEN REFERRING TO DOWN SYNDROME AND PEOPLE WHO HAVE DOWN SYNDROME:

• People with Down syndrome should always be referred to as people first. Instead of "a Down syndrome child," it should be "a child with Down syndrome." Also avoid "Down's child" and describing the condition as "Down's," as in, "He has Down's."

• Down syndrome is a condition or a syndrome, not a disease.

• People "have" Down syndrome, they do not "suffer from" it and are not "afflicted by" it.

• Down vs. Down's - NDSS uses the preferred spelling, Down syndrome, rather than Down's syndrome. While Down syndrome is listed in many dictionaries with both popular spellings (with or without an apostrophe s), the preferred usage in the United States is Down syndrome. This is because an "apostrophe s" connotes ownership or possession. Down syndrome is named for the English physician John Langdon Down, who characterized the condition, but did not have it. The AP Stylebook recommends using "Down syndrome," as well.

• While it is still clinically acceptable to say "mental retardation," you should use the more socially acceptable "intellectual disability" or "cognitive disability." NDSS strongly condemns the use of the word "retarded" in any derogatory context. Using this word is hurtful and suggests that people with disabilities are not competent.

Boaz's Endo Check-up

    This weekend both boys have been sick. For Emory, this just meant that he was tired, coughing, had a runny nose, and had a fever. For Boaz, this meant that he had all if the above plus crazy blood sugars and high ketones. We do our best to keep his sugar down, and the ketones flushed at home but sometimes it requires a little more. After spending all of Saturday on a rollar coaster of blood sugars and ketones, we ended up in the ER.  At bedtime, Boaz's ketones were negative. Two hours later they were 4.4mmol (Large). Because they had gotten worse, we decided it was time for the ER. We also knew that if we kept him at home, we would have to wake up every hour to check the ketones, and if we missed a check it could be dangerous.  We had an awesome experience at the ER. When we got there, they took him straight back and started an IV. Boaz did really good with the IV. He cried while they out it in, but I think he was mainly sad that he couldn't see his daddy. He thought the board that they put his arm on was very silly, and would not stop poking it. They drew some blood and confirmed that he was not in DKA. So he received fluids through IV for a few hours to make sure we could flush his ketones. Once the IV was done, they took his sugar and confirmed that his ketones had flushed out. We then gave him some insulin, and signed the discharge papers.  

Today, Boaz had his three month check up with his Endocrinologist.  It went very well!  His a1c was 7.8 which is down from 8.0 and she said it was a great a1c for his age!  After his appointment, we had to go get blood work drawn to check on his thyroid. Boaz was a little sad about this, but he still took it like a champ!  So overall, his appointment went great and we were in and out in an hour!