His GI doctor prescribed him on medication which he has been on for about 1 1/2 weeks and I’ve already noticed a slight change for the best! This medication can take several weeks to work so we’re just keeping our fingers crossed and pray that it works!

As for his behavior, he’s still hitting his head into the walls whenever he gets upset. We keep his weighted vest (which does help some) on him as often as we can but days like today where the temperature is going to be in the mid 80’s, I don’t want to chance him getting overheated.

I’m also hoping that Joey’s new stomach medication might help to lessen his bad behavior. I often wonder if he’s acting out like he does due to his stomach hurting.

I’ve also been in contact with Boston’s Children’s Hospital which has an excellent Down syndrome clinic. So it looks like sometime in July we’ll be making a trip up to Boston so see what all they have to say.

The endoscopy was perfect, nothing wrong detected. When his doctor got to his small bowel, there was a lot of inflammation and blood. There was even blood in his stomach which Dr Z thinks is backwash from his small bowel. Also, a section of his colon was thicker than normal.

There could be three different things wrong with him that would be causing him to have bloody poop, he could now have Crohn’s Disease, his lymphocytic colitis could have turned into inflammatory bowel disease, or his Celiac Disease (even though he’s on a gluten free diet)

We’re not sure if somehow he’s been getting exposed to gluten. Last year when Joey was tested for Celiac Disease, it came up negative, which doesn’t always mean that an individual doesn’t have a gluten intolerance or Celiac Disease. I’ve been so careful with my cooking, I check every single label before fixing Joey ANYTHING to eat. My only thought it that perhaps he’s getting cross contaminated somehow. I just don’t know.

The one thing I do know is that the results can’t get here fast enough. We should hopefully hear something by Wednesday evening or Thursday.

I’m also hoping and praying that perhaps his current behavioral problems are a result from his stomach hurting and when we get that under control, the head banging and crying will stop.

And let me say, I don’t want to move again anytime soon! It’s insane that amount of stuff 5 people can accumulate!

Anyways, I just wanted to let you all know that we’re still here, I promise I’m going to do better posting!!

Last night while laying in bed, I thought back to all the times I used to use the word ret@rd when I was younger before I had Joey. I remember back in grade school (obviously too young to know better) but I used to act like I had an intellectual disability because I thought it was funny, and also made fun of those who did. Those memories sicken me to think back to them, but I know I was young and very inmature. I’m so ashamed of this behavior.

Back in high school and college, I remember saying that (unforunate) saying, “that’s so ret@rded” so many times. Again, I’m so ashamed….

I actually remember the very last time I said the R word. I was pregnant with Joey and had recently found out that he had Down syndrome. I was sitting at home on the couch watching TV, feeling Joey flutter around in my stomach when I saw something silly on TV and said, those awful three words, “that’s so ret@rded.”

Right as the “ed” part of the R word came out of my mouth it hit me what I said and my thoughts instantly went to the little baby boy growing inside of me and that he was going to be the type of child I used to make fun of and that when myself and others would use the R word, that he’s the type of person that that term typically sterotyped.

I started crying and instantly vowed to myself that I would never say that word again and that I would do my best to make sure that our family would also stop saying that word as well.

Some people that I have corrected after using the R word say, “I didn’t mean it that way”, but just know that when I hear that word, that I hurts, it hurts REALLY BAD, it actually hits me and others just like a fist slamming into the side of our faces.

I know that there’s such a thing as freedom of speech, but come on people! Why use a word that makes fun of those who cannot always defend themselves? Those who are most vulnerable? I know I can’t stop everyone from saying it but if I can just get one more person to realize the effects that words have, then I have made a difference.

Why use a word that hurts this little guy and those who love and care for him?

]]> http://raisingjoey.com/?feed=rss2&p=1984 http://raisingjoey.com/?p=1983 http://raisingjoey.com/?p=1983#comments Fri, 19 Feb 2010 17:33:10 +0000 Jess http://raisingjoey.com/?p=1983 Check out this video done by Johnny Knoxville and self advocate eddie Barbanell. Both wonderful advocated for our families and spreading the word about how much it can hurt to hear the “R word” used.

A few hours later, Joey started spiking a fever and I knew then that I was in for a long day. The next thing I knew, Joey had a 103 fever and he just wasn’t acting like himself, so off to Children’s ER we went.

After waiting for FOUR HOURS to be seen in the ER, we were called back. By that point, Joey was dehydrated and completely out of it, so he got admitted to the hospital.

After more tests than I could even count, they couldn’t find anything wrong with the poor kid except that his white blood cell out was elevated which meant an infection, but they could never find where the infection was.

After 1 day inpatient, Joey started vomiting blood and passing blood through his BMs so GI was called in as well. After EVEN MORE tests, they still couldn’t figure out what was going on with him. There was no internal bleeding, no nothing to cause the bleeding, the GI doc came to the conclusion that he made a little rip in his esphogus one time when he vomited.

Later that night, poor Joey started coughing and you could hear the rattling in his chest, pneuomnia had set in. He had aspitated some of his vomit and it went into his lungs. Which thanks to the pneumonia, his oxygen count started falling so he had to get oxygen and with his sensory issues, this was a HUGE challenge getting him to accept the oxygen.

Actually, he never did end up letting the hospital put an O2 mask or cannula on him, we had to wait till he was asleep and then set it next to his face while he slept. And he still had a fever most of the time above 102.

They also started him on some heavy duty antibodics which made him start to feel better later that day and his fever finally went away.

This whole time, the poor kid never ate or drank anything. And the hospital was not going to discharge him until he did so. By the 4th morning, I decided that Joey was going eat or drink something wether he liked it or not. Thankfully once I got (forced) the first drop of juice in Joey, he started drinking, then by late morning I got him to eat, so bless the doctors’ hearts, they went ahead and sent us home!!

Those 4 days, I made several trips home to feed Aiden, deliever the pumped milk and to visit/ play with Leah.

Unfortunatly, the day after I got home with Joey, Aiden and Leah came down with the high fever which between the two of them, lasted almost a week, so needless to say, those few weeks were insane and it’s taken me an additional week just to catch up on sleep and to get things back in order around here.

There’s never a dull moment around here, hahahaha!

N*ggers, K*kes, F*ggots, C*nts, W*ps and the R-word

By John C. McGinley
Actor and Spokesperson for the National Down Syndrome Society
Posted: February 10, 2010 04:10 AM

Editors Note: The following piece contains strong language, used to explain the impact of certain words in our society.

There is an easy way to put this initiative into motion. Please join our effort to “Spread the Word to End the Word.” Go to www.r-word.org.