Category Archives: Connecticut

Field Trip Chaperone: The Good, the Bad, and the Ugly

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One of the perks of having Leah & Joey in the same homeroom class is that when they go on field trips, they’re together so if I get the opportunity to be the chaperone, I go for it! Yesterday I spent the day (freezing my rear off in 50 degree below normal for May chilly weather) but I got to witness first hand not only the love Leah has for Joey but the love his entire class has for him as well.

As we hiked all over our local YMCA’ s camp, I watched Joey and his peers. Although Joey didn’t participate in all the activities, he still watched and took things in on his own pace.

Joey didn’t pay attention to what the camp counselors were saying or collect the same scientific data his fellow 4th grade peers were taking on their clipboards they were carrying around. But he watched his peers work and measure things and even noticed things that the other children down notice like the squirrel running through  woods or the swan swimming across the lake.

As we were walking back to the picnic shelter for lunch, I watched and could feel my heart swelling with love as Leah walked with her brother.

And then today I repeated the whole chaperone fun all over again, this time with Aiden’s class and once again, I froze and left the camp this afternoon feeling like a Popsicle! But there’s one thing I cherish about being a stay at home mom, being able to go on the field trips and volunteer at the Joey, Leah, and Aiden’s school, even if I do freeze and have to go above and beyond the call of chaperone duty occasionally, it’s worth every single second!


And I’ll leave you with just a few words of advice for any parent who’s going to be going on an elementary school aged field trip to an outdoors camp with their child and class. Trust me, if you want to have a successful and hopefully stress free field trip you might want this advice, hahaha!

10 Things About Being A Field Trip Chaperone You’ll Kick Yourself for Not Knowing

  1. If it’s cold outside, not only dress your kid in layers, dress yourself in layers as well.
  2. Bug spray… you may not be able to spray the other kids down, but golly, spray your kid down!
  3. Sunscreen, enough said…
  4. Bring Kleenex, I had more kids ask me for a tissue that my three kids have asked me in a year! But whatever you do, don’t just shove some extras in your pocket and call it a day. You may end up with that one kid in your group who won’t take even a clean tissue from your pocket, they must SEE it come out of the package or it’s not considered clean…
  5. Bring extra band-aids, even though there should be a first aid kit somewhere where you’re at, whoever has the boo-boo is going to want that darn band-aid INSTANTLY. It’s like a life or death situation!
  6. Bring diaper wipes, if there’s no sinks nearby and one of the kids stick their hand in the mud, you’re gonna want that wet wipe ASAP or the mud will end up on your sleeve!
  7. An extra bottle of water for the kid that gets sand in their eyes and you need to wash their eyes out. Again, it’s a life or death situation just like with the band-aids!
  8. Bring a trash bag to collect the dirty Kleenex, band-aid wrappers, and diaper wipes in. Trust me on that one!
  9. Bring a second bag to collect all the cool rocks, sticks, and whatever else your group of kids collect or else half of it ends up in your pockets.
  10. And lastly bring a backpack to put all these above items in…

 

Joey’s Jamboree- Celebrating Down Syndrome Awareness

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One of the events that we love going to in our Down syndrome community is the annual Buddy Walk. For many Down syndrome organizations this is the number one way to raise funds for their organization that helps families in their area.

After taking a few years away from participating in the Connecticut Down Syndrome Congress’s Buddy Walk, due to the craziness of our lives, I decided it was time to form a team again. There’s nothing more heart warming than seeing hundreds of people all come together to celebrate our beautiful children.

October is Down syndrome awareness month and I can’t think of a better way start off teh month by walking in a Buddy Walk. The Buddy Walk here in Connecticut is on Saturday, October 1st at Rentschler Field in East Hartford. Registration opens at 11am and the walk steps off at noon.

If you are local here in Connecticut and would like to join our team, we welcome you with open arms to join Joey’s Jamboree. You can register on our team’s website. If you are not able to join us but would like to donate to our team, you may do so by going to our team’s website by clicking here. And remember, it’s tax deductible!

Also, if you would like to participate in your local Buddy Walk, you can see if you have one near you by clicking here.

Thank you in advance for your love and support!

 

Our trip to the Pez Visitor Center

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For our latest family outing, due to the sweltering 95 degree heat today, we wanted to stay indoors so we decided to head south to Orange, Connecticut to visit the Pez Visitor Center.

Don’t worry about getting lost, because as soon as you’re to Edison Road aka Pez Boulevard you’ll know thanks to the street sign! You can’t miss it! It’s less than 2 miles off of I-95!

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Then once we pulled up to the building, we were welcomed by three massive packs of Pez candies on the front of the building. Right away, the kids got excited!

For my fellow special needs families, there’s plenty of handicap parking and there’s ramps right in front of the building, no stairs to worry about entering into the building. There’s also a nice elevator inside the building to get to the second floor.
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While Daddy bought our tickets (they’re reasonably priced: Children under 3 FREE, Children 3-12 $4.00, Regular admission $5.00, Seniors (60+) $4.00, Group (10 or more) $4.00) the kids waited on super cute Pez benches in the lobby, then we entered into the main show room/museum.

The main area was quite crowded at times, so I suggest if you have a child that doesn’t deal well with crowds, I suggest going on a weekday instead of a weekend.

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One of the fun activities they have is a scavenger hunt for all of Snow White’s 7 Dwarfs. Once you find all 7 of the dwarfs and figure out the hidden message, you get a free Pez Dispenser at the end of your visit! This kept Aiden busy the entire time, he takes his scavenger hunts very seriously!

Although the visitor center isn’t huge, there’s so much to see in the small area. After all, Pez Dispensers aren’t that big! There’s thousands of dispensers so don’t expect to see each and every one! They have the very first ones made back in 1948 clear through present day! It was so neat seeing the Pez dispensers from when I was growing up in the 1980’s-1990’s! I remembered many of them!

Once we finished looking at all the nostalgia, we started picking out the dispensers we wanted to buy. Aiden picked out a Scooby Doo collector pack with all 5 of Scooby’s crew as dispensers. Leah picked out 2 Emoji dispensers and she filled a small bucket of Pez candies. Joey of course picked out a Finding Nemo dispenser, and I got a Captain Jack Sparrow dispenser! After all, who doesn’t want Johnny Depp feeding you candy, lol!! The single dispenser packs are $1.99, the fill a bucket of candy is $5.99 and most of the collector packs are $10.99.

One of the great things about this place is that with every ticket purchased, you get a $2 credit towards items to purchase that day! So this is a trip that won’t break your piggy bank! So if you haven’t been to the Pez Visitor Center yet, it’s definitely worth the trip!

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Let’s talk GI, part 2

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*If you missed Let’s Talk GI, part 1, you can read it here.

As the years have gone on, sadly, Joey’s gastrointestinal issues have continued. We STILL deal with chronic diarrhea. Along with that aspect of his problems, 5 years ago we faced an even larger one.

Right around the time we moved into the current house we live in now, we noticed an extreme change in Joey’s behavior. He was acting out, slamming his head into walls and the floors, eating less and less, he was just not himself. We chalked it up to a new house and school. After a while, deep down I knew there was something else, I just didn’t know what.

Due to him not eating, we had discussed a feeding tube. He was losing weight. It was a truly terrifying time for everyone. I had taken him to see his GI doctor, she was at a loss too. We decided start by scheduling  another colonoscopy/endoscopy to see if perhaps there was something wrong that she could see.

I’ll never forget the night all hell broke lose. It was a Sunday night, my husband and I had just put the kids to bed and had just settled into bed ourselves. I had actually started to nod off to sleep when Joey started screaming, crying and doing this wreching/hiccupping sound. Nothing was helping, we couldn’t calm him down.

I packed a bag and rushed down I-84 towards CT Children’s Medical Center with Joey in the backseat. I KNEW something was not right with my boy and that it wasn’t good. I made it to Hartford in record time. Thankfully he was taken straight back when I carried him in the hospital.

There’s nothing WORSE than having your non-verbal child not be able to tell you where he’s hurting from. He couldn’t even point. He just laid there screaming, trying to throw himself out of the hospital bed due to the severe pain. Nothing was helping his pain, not even Morphine.

It took 24 hours to finally diagnose his problem, every x-ray and ultrasound came up negative. His stomach was soft to the touch, not distended. No stomach bile came up until around 22 hours into the ordeal. The doctors finally listened to me and ordered an Upper GI with a small bowel follow-thru.

The radiologist doing the test looked at me and explained that his small bowels were totally obstructed where the bowels and stomach connect and that Joey needed to have surgery immediately.  He has showing me the images on the screen and it was so obvious were the blockage was.

I’ll never forget stepping outside for a moment to call my husband and then my mom. I finally broke down in tears while talking to my mom. I was terrified. I felt like I had failed Joey by not pushing the doctors more and finding this more quickly.

Then they pretty much took Joey straight from Radiology to the Operating Room. I followed my boy who was still screaming, laying on a hospital stretcher down the long white hall, up an elevator, and went as far as the staff would allow me before someone took me to the waiting room.

By that point, I was exhausted. I hadn’t slept in almost 48 hours and I just handed by baby off to the hands of the surgeon to try to have his bowels and his life. They didn’t know what they were going to find when they opened him up. My husband was frantically trying to finish up all of his appointments at work so he could join me at the hospital. My mom was on her way up to Connecticut from Ohio and my mother-in-law had Leah and Aiden. I was at the hospital alone and scared. Finally, one of my friends joined me at the hospital. I think I took very brief catnaps during the two hours he was in the OR.

Once he was finished,  the surgeon, Dr. B came into the waiting room and we sat down and he explained that Joey had developed adhesions (scar tissue) from his Malrotated Intestines surgery and that the adhesions had wrapped totally around his small bowels and pulled them all down from where they were suppose to be. Thankfully, Dr. B was able to save Joey’s bowels! The blood supply flow had just been cut off, had it been any longer, it would have permanently damaged the bowels and Joey would have lost a portion of his small bowels.

Right around the time my husband got to the hospital was the time we were able to go back to the recovery room to see Joey. He looked so small and fragile with all of the wires and drainage tubes coming out of him. He slowly started to wake up and we were taken back to his regular hospital room. After we thought he was doing ok, my husband went home to be with our other children.

Once he was settled in his room, I noticed that his face was swelling very quickly and he was turning beet red. I quickly pointed this out to his nurse, who then proceeded to pull the call button cord out of the socket which made an alarm go off throughout the entire floor. He was having an anaphylactic reaction to something! Doctors and nurses came out of the woodwork and were in the room so quickly. I could feel my legs starting to shake, I started collapsing, I thought I was going to loose him!

One of his nurses took me out into the hallway while they were able to stabilize him. Once I gained control of myself, I went back in. They think he had an allergic reaction to the antibiotic they gave him in the OR, it was one he had never had before.

Joey ended up being in the hospital for 9 days. He had to drink, eat, walk, and go #2 before they would let him go home. Finally I think it was around day six he started taking small steps. Day seven I put out a call to the clergy department, the most wonderful Catholic priest came up to visit us a few hours later. When I explained why Joey was still in the hospital, he said the most awesome thing, “I will pray for poop.” And guess what, about 15 hours later, we got poop and the next day got to go home!

Once he was home, things got interesting, we had to keep Joey from getting into too much trouble while his incision and bowels healed. We had to keep Leah and Aiden (who was only 1 year old) from climbing all over their big brother!

After about 2 weeks, we sent him back to school and things finally got back to normal. He had stopped hitting his head into the walls and floors. His appetite slowly improved, and he started gaining weight back. Our little boy was coming back to us! And with that, I’m going to end this portion of Joey’s GI story and continue another day.

To be continued…

 

Our visit to the Peabody Museum

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A few times a year we venture down to New Haven for a trip to Yale’s Peabody Natural History Museum and since the Joey starts summer school and Leah & Aiden are off to camp next week, I decided yesterday was the perfect day to go! And since I discovered that one of my best friends had never been there before, we brought her along for the ride!

Joey really wasn’t in much of a photogenic mood but I still managed to snap some photos of the fun we all had.

As we were walking up to the  building, Aiden decided to try to walk in the dinosaur’s footsteps…

“Mom! It’s T-Rex!”

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The Famous Hall of Dinosaurs!

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Joey admiring the Velociraptor model

Aiden and Leah’s best Dodo bird impression

“Mommy, look at me, I’m a mummy just like this one!”

For those of you not from Connecticut who are wondering where/what the Peabody Museum is, it’s down on the shore in New Haven. It’s part of Yale University and houses many of their best artifacts. It’s one of the oldest natural history museums in the world! One claim to fame is the character Mr. Burns from the Simpsons went to Yale and a reference about the Peabody Museum is made in an episode!

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source: The Simpsons, edisode “Burns, Baby Burns”

This year is the 150 year anniversary of the museum. The Peabody is three stories tall, there’s a small elevator for those of you with strollers or wheelchairs. On the second floor, there’s a discovery room for smaller children although due to it being a smaller room, no strollers are allowed in that room. Unfortunately, there’s no cafeteria or eating area so feed your kiddos before you go or, the wonderful thing about New Haven is, there’s so many amazing places to eat! I have to suggest, if you’re family likes pizza, try out Pepe’s Pizza and for dessert Libby’s Italian Pastry Shop both on Wooster Street!

If you’re in Connecticut or planning on visiting Connecticut, it’s totally worth the trip! There are so many amazing things to see, every time we go, I see something new and exciting!  It’s one of those museums you can visit over and over again and it will never get old.

Sensory fun day at CT Science Ceter 6/18/16

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Heads up fellow Connecticut (and surrounding states who might want to take a road trip lol), the CT Science Center is having sensory friendly hours on Saturday, June 18 from 9am-12pm. We love this place!
Events_Thumb-150x150A little directly from their website

“The Science Center is an exciting place, bustling with loud sounds and bright
lights…but we’re lowering the volume and dimming the lights for SUPER
Sensory Friendly Hours 9AM–12PM.

Get ready for a SUPER day of fantastic sensory-friendly, superhero fun
courtesy of The Miracle League of Connecticut! Meet amazing superheroes and
join the fun by wearing your favorite superhero costume.

Groups with special needs programs and families with children on the autism
spectrum or with other developmental disabilities will enjoy tons of kids’
activities, arts & crafts, and LIVE Gallery Science demonstrations. There will
also be a special sensory-friendly theater presentation of our Creative Creatures
theater show at 12PM.

Advance Tickets

Advanced tickets can be purchased at a discounted rate of $12 per person until
Midnight on Friday, June 17.

Tickets will be available at the door for $14.95 each. 1:1 aides are always free.
All superhero activities are included with General Admission or Membership.
A separate ticket is required for the theater show at 12PM. For more
information, contact Brit Montmeat, Group Sales Account Manager,
at bmontmeat@ctsciencecenter.org or (860) 520-2112.

Please note that lighting and volume levels will resume at regular levels 12–
5PM.”