RAISING JOEY

The results

So thankfully Joey’s colonoscopy came up negative for celiac which means that he was not being exposed to gluten and also came up negative for Crohn’s Disease. The one thing it came up positive for again was his lymphocytic colitis. He had blood in his small bowel and that blood was washing back up into his stomach which would be why he had blood in his poop.

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.

More tummy woes

So we’ve had our hands full with still trying to unpack and getting settled in especially with Joey. The poor kiddo just does not adjust to change very well at all. We’re still having behavioral problems with Joey hitting his head into walls and crying a lot. And to top that off, he’s been having issues with his stomach again. His BM’s have been testing positive for blood, so yesterday Joey had another colonoscopy/ endoscopy to see what was going on in there.

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.

Hello strangers!

Once again I’ve been a slacker when it comes to blogging, I’m sorry to whatever readers I have left on here! I do have a good reason for my lack of posts though… we moved to a new house and for over the past month I’ve been very busy unpacking and setting up our new house!

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!!

The last time I said it…

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?

The kiddos

Just thought I would share a few new pictures of the kids that I recently took

CDSC’s Legislative Video

The Connecticut Down Syndrome Congress recently produced three new videos, below is the legislative one.

Some more from John C McGinley

Thank you Johnny Knoxville!!

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.

Our latest “adventure”

Sorry (once again) for the lack of posts the past month. I had all intentions of writing at least once a week but almost 4 weeks ago, I could tell Joey was coming down with something so I called the pediatrican and took Joey to be checked out. Of course, the pedi could find nothing wrong with Joey so we were sent home.

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!

Thank you John c. McGinley!

An article by actor John D. McGinley & fellow parent of a child who has Down syndrome. Please take a minute to read to understand why I get so upset when I hear/read one of my friends/family use the word ret*ard. Words do hurt, they can hit like a fist.
————————————————————————————-

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.

Sensory Processing

I’m so behind on posting updates, especially about Joey! Last week, I went to a PPT for Joey regarding the Sensory Procesing evaluation that his school sent in a specialist to do at the begining of the school year.

The evaluation was performed by an Occupational Therapist that specializes in kiddos with sensory processing difficulties, and also by Joey’s therapy staff at his school. With all the tests/ evaluations that were done, they came to the conclusion that Joey does indeed have the Sensory Processing Disorder/ Sensory Intergration Disorder.

I knew in my heart that Joey had this sensory disorder before they even diagnosed him. After reading several books on it over the summer, I just knew it. I’ve seen so many other kiddos who have Down syndrome who also have sensory problems but there’s times that Joey just “shuts down” when he gets over stimulated and it’s so sad. It breaks my heart that so many everyday things that don’t bother most kids, upset Joey the way that they do.

Certain sounds/ activities, he squats down towards the ground and covers his ears. It really does break my heart. But thankfully, the OT who performed the evaluation gave many ideas/ strategies to use with Joey to help make it less sensitive to activities that may overwhelm him.

I’m so grateful to have such an awesome, supportive school staff that is willing go out of their way to help Joey out!

I’ve also started taking Joey to weekly feeding therapy appointments at CT Childrens Medical Center and she is also going to be working on sensory related therapies with him as well.

Xmas Pics 2009

Just a few weeks late but here are our pictures from our trip to Ohio for Christmas. Enjoy!

Poor Jo-Joe

Yesterday, I took Joey to an appointment with his audiologist to have the molds made for his new hearing aid. Thankfully, the audiologist’s office is in the same town that my husband works so he was able to meet us there.

As soon as I pulled into the parking lot, Joey KNEW that he was going to an appointment of some sort and the poor little guy started acting crazy before I even got him out of the van.

Patrick pulled up just a few minutes later which helped to calm Joey down a little as we waited to be called back. The audiologist came out and greeted us and walked us back to her office. As soon as she came out and Joey saw her, Joey gave her the look of the devil, he’s one smart cookie, hahaha!

Before she took the molds, we went over what his hearing aid will look like and other tidbits we need to know. We even got to pick out the colors that the hearing aid can be! The mechanical part that goes around the back side of his ear will be blue and the part that actually goes into his ear will be blue and yellow swirreled (Down syndrome awareness colors!).

After going over the logistics, we got to the tough part, getting the mold of Joey’s ear…

The minute Patrick picked him up, he started screaming and screaming and screaming….

Once the foam was put in Joey’s ear, no one could touch it or Joey’s ear (pretty much had to have Joey sit still) for about 4-5 minutes while it hardened and Joey didn’t like that fact at all. I’ve only seen him flip out that bad one other time and that’s when he got an echocardiogram.

Poor kiddo screamed until he was pretty much dry heeving. Even after she took the mold out, he still wasn’t happy so Patrick took him out to the car while I finished up in the office.

At least the hardest part is over, next appointment on Febuary 3rd, we go back to pick up the actual hearing aid then learn how to use it…..

Go Maddy!!

A fellow blogger, Barbara Curtis, who also has a son with Down syndrome, actually she has FOUR sons who have that beautiful extra chromosome, well, her daughter, Maddy was on American Idol last night and was AMAZING! Maddy recieved a Golden Ticket from the Idol judges so she will be going on to Hollywood!

Before she auditioned, there was a nice little segment on Maddy and her brothers

The keys to life….

I just love articles written by Beverly Beckham, especially her articles about her grandaughter, Lucy who has Down syndrome. This article isn’t about Lucy, but I really enjoyed it and thought I would share it with everyone.
————————————————-

Songs: They’re the key to life
By Beverly Beckham, Globe Columnist | January 3, 2010

Canton resident Beverly Beckham can be reached at bevbeckham@aol.com.

Merry Christmas!!!

To all of our readers, we wish you all a very Merry Christmas and a Happy New Year!

Love,
Jessica, Patrick, Joey, Leah and Aiden

Let There Be Peace on Earth

I posted this video last year and thought it would be good to post it again. Brings me to tears when I watch it, absolutely beautiful and moving!!

Long overdue post!

I want to applogize to all of my readers, I’m way overdue for an update. My mother keeps reminding me to post something on here but I’ve been so busy! Let’s see, since I last posted a lot has happened.

Right before Thanksgiving, Joey came down with H1N1 and spent 3 1/2 days in the hospital. Very, very scary. It’s weird, you hear on TV about children ending up in the hospital thanks to that yucky illness but I never thought one of my kids would end up with it!

The ironic thing is that THE DAY that Joey came down with it and ended up in the hospital is the day he and his sister were suppose to get the vaccines!!!

Leah also came down with it the next day but was able to fight it off mostly on her own with only a few doses of TamiFlu.

A few weeks later, Joey came down with the croup and that resulted in another trip to the ER but thankfully we were sent home a few hours later after a breathing treatment and a shot of steriods.

We’ve also had several colds in the middle of all of this (all of which Joey has caught) so we’ve been a healthy bunch, let me tell ya, hahahaha!

Leah and Aiden are doing good. We can’t get over how big Aiden is getting. Last week out of nowhere he no longer fit into his 0-3 month clothes so we had to make a trip to Kohls to get him some new clothes!

And poor Leah has been averaging 3 ear infections a month for the past few months so she has an appointment to see an ENT for tubes.

Again, I’m so sorry for the lack for posts lately, but between Joey’s illnesses, being a mom to three, and being addicted to Facebook, I put my beloved blog on hold and kept putting off posting on here!

We’re leaving tomorrow for Ohio for Christmas, so I will be back after Christmas!!! I will leave you today with a couple new pictures of the kids and one of our first snow fall from the other day

CJ’s Traveling Afghan Project article!

CJ was one of the first bloggers who found my blog back when Joey was born! I credit CJ for getting me addicted to blogging!!!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Appleton mom CJ Field’s crocheted afghans comfort families with Down syndrome

By Kara Patterson
Post-Crescent staff writer

“Once a family is matched for Melissa, I will be making Melissa an afghan of her own,” Field said.

31 for 21, October 21st

Last night at Joey’s parent-teacher conference, Joey’s teacher gave me a sheet from Joey (with her help) with an update of everything he’s doing at school.
——————————————————-

These are things I like and I am good at in the classroom setting:
-Attending and participating during circle (w/ a smile on his face)
-Imitating teacher movements/ gestures for poems and songs
-Signing action songs/ poems
-Referencing peers to model their movements during circle
-Eating snack independently with adult guidance as needed (especially chocolate pudding and apple sauce)
-Joey is highly motivated by his peers during during music & movement activities
-High level of innate mastery of motivation for self initiated activities
-Persistant exploration of the environment and engagement in familiar and routine activities and material use.

These are things I am getting better at in the classroom setting:
-Participating in table top actitivies with adult facilitation ie.. gluing, painting, markers
-Following one step directions in the classroom with adult facilitation
-Pointing to photos/ visual cues to express desired activity
-Transitioning within the daily schedule using a simple visual schedule board
-Increased comfort levels improve overall performance in most areas of the daily cirriculum
-Parallel playing near peers while engaged in familiar and preferred activities ie.. trains, cars, bean table, water table, simple 1-2 step play schemes with dolls/ food/ puzzles
-Transitioning to least preferred activities with adult support
-Increased symbolic play with adult/ peer modeling
-Increased attention span with familiar and highly preferred materials
-Emerging trial and error problem solving skills with materials of interest ie… puzzles, bean table, trains/tracks, legos, instruments

These are things I need help with:
-Toileting, washing hands, caring for personal belongings, transitioning from one activity to another when he is not interested or in the mood to engage.
-Safety awareness concerns require constant adult supervision/ facilitation in the classroom and outdoors
-Increasing attention span with activities/ materials that are unfamiliar/ least preferred

31 for 21, October 20st

Joey made the list of kiddos who have Down syndrome on parenting.com! Check out my little buddy!!!

A Special Joy, Joey’s picture!

31 for 21, October 19th

Siblings and Down syndrome

I often think about the future when Joey, Leah, and Aiden are older, and how they possibly mightb react to Joey having Down syndrome. This obviously won’t be the case for several more years, if ever.

I’ve talked to many parents who have older children and their children really never had a problem with their sibling having Down syndrome. They don’t see a difference with their brother or sister but sometimes, they need a little information and support.

Below are some websites parents might find useful for their children.

-What the other children are thinking: Brothers and sisters of persons with Down syndrome. By Dr. Brian Skotko
-We’ll Paint the Octopus Red by Stephanie Stuve-Bodeen
-The Best Worst Brother by Stephanie Stuve-Bodeen
-Our Brother Has Down Syndrome by Shelley Cairo
-Life is far from ordinary for these kids. Teens talk candidly about growing up with a sibling who has special needs. By Gail Rosenblum, The Star Tribune
-Down’s Syndrome Association’s publication on Siblings & Down syndrome.
-The Other Kid

31 for 21, October 17th

I just love the fact that parenting.com is doing this very special showcase of beautiful kiddos who are blessed with Down syndrome, several of which look familar :). They did the same thing last year too!!!

A Special Joy 2009: Kids With Down Syndrome Galleries
See photos of your snap-happy kids, who happen to have Down Syndrome, in honor of National Down Syndrome Awareness Month in October.

Round 1
Round 2
Round 3
Round 4
Round 5
Round 6
Round 7

I’ll keep adding links to new rounds of pictures on this post as they become available!!

31 for 21, October 16th

In a past interview about the movie “X-Men, The Last Stand”, Halle Berry mentioned her nephew who has Down syndrome. Below is the portion where she mentioned him. You can read the entire interview here.
________________________________

UGO: The cure in this movie raises so many interesting questions.

HALLE: My nephew has taught my family so much. My sister mostly has learned so much about herself, about family, about who she is and what she is made of. So to take that away from her would do her such a disservice. I think that people are brought here the way that they are for a reason. I wouldn’t chose to change him because I see the benefit that his little life has brought to all of us. Now if he said to me that he didn’t want to have Down Syndrome anymore, then I would say that I would change it if I had the opportunity to. But not knowing his position I would like him to stay the way that he is. We’ve all gotten so much from him.

________________________________
Another name to add to my list of famous people who have loved ones who have Down syndrome!

31 for 21, October 15th

OK, so I missed a few days worth of posts, opps!!! Anyways, I love cute, funny saying bumper stickers, I actually have one on the back of my van that says, “My kid has more chromosomes than yours!”. A couple others I thought of that would be cute…..

“Genetically enhanced”

“Designer gene original”

“What’s an extra chromosome between friends?”

**What cute sayings can you think of for our kiddos who have Down syndrome???