RAISING JOEY

31 for 21, October 31st

Phew! We made it to the 31st of October!

I hope everyone has a safe and fun Halloween! Dillon and his mommy Melissa are coming over for dinner tonight and to go Trick or Treating with us! Lots of pictures will be taken!

November 17…

Joey’s surgery will be on November 17 at CCMC in Hartford. We actually had the choice between doing it laparoscopic or actually cutting him open and choose to have him cut open. The only reason is because the laparoscopic way is new and it’s not a 100% fix. Many children have to have it re-done later and I don’t want to put Joey through that. I want him fixed and be done with it.

The incision is not big at all, only 2-3 inches (if that). They will open him up, take out his small intestine and straighten it all out. While in there, he will have an appendectomy since his addendix is on the wrong side of his body.

The doctor will insert an NG tube to help keep the gas out of his tummy.

He will have a 3-4 day hospital stay and he will have a private room that Patrick and I can stay in with him.

I feel like I’ve been run over by a truck…

31 for 21, October 30th

So this morning we meet with the surgion about Joey’s upcoming surgery on his malrotated intestines. We’ll find out how it’s going to be done along with an actual date for the procedure. I have my list of questions to ask the doctor.

I just wish I could snap my fingers and his tummy would be fixed…

31 for 21, October 29th

21 Facts about Joey that have absolutely nothing to do with Down syndrome

1. One of his favorite foods is creamed spinach
2. He loves music!! Especially Celtic music, he’s over 50% Irish!
3. He loves dancing!
4. Joey knows sign language. He picks up new signs everyday!
5. He’s an Aries
6. He loves going bye-bye in my van.
7. Joey loves reading with his Daddy.
8. Their favorite book to read together is Hop on Pop by Dr. Suess.
9. Joey’s new favorite thing to watch on TV is Sesame Street
10. His favorite character is Elmo!
11. Wheels on the Bus is Joey’s favorite song
12. Joey loves playing outside!
13. His favorite toys are his cars.
14. Joey is CRAZY about both of his Grandpa’s!!!
15. His other favorite TV show is Mickey Mouse Clubhouse
16. His favorite dessert is ice cream!
17. Joey has 5 uncles and 7 aunts!!
18. He has a new found interest in fish & aquariums
19. His best buddy’s name is Corey.
20. Joey loves his little sister!
21. Joey and Leah are the only grandchildren of the family- we’re still waiting on cousins!

I’m going to make myself nuts…

if I keep reading up on Joey’s intestine malrotation! I’ve read where the procedure to fix this is done either by laparoscopy or by an actual operation. Apparently, appendectomies are usually done at the same time since most people who have intestinal malrotations, their appendixies are on the wrong side of the body. Sometimes NG tubes are placed.

My stomach is in knots reading all of this! I need to stop…

31 for 21, October 28th

One thing we’ve been working on with Joey is his aversion to different textures and one thing I’ve made for him is a texture box. It has several different textures in it along with various objects I change on a regular basis (clothes pins, linkies, pom-poms, ect…).

This is also a great way for him to work on his pincher grasp by picking up the beans with his fingers!

I do have one of these texture boxes for sale on my Etsy Shop if anyone is interested

For more Try This Tuesdays, go visit 5 Minutes For Special Needs!

31 for 21, October 27th

We just got back from meeting with Joey’s pre-k team at his new school. “Sigh”, my baby is going to be starting school in March! I’m so not ready for this, but I’ll survive, lol! His team at the school is going to be awesome! And the one main thing I wanted for him is music therapy and guess what?! His school has a music therapist there every Monday just for the pre-k special ed students! YAY! The one thing extra I wanted for him and I don’t have to fight for it! His PPT is scheduled for March 9.

31 for 21, October 26th

The CDSC’s convention was a success! The new/ expectant parent workshop I did went very, very well. The room was packed! It was great to talk to all the new parents so we all could share our experiences.

I spent a large part of the day with Melissa, Dillon’s mom. She helped me with the two tables I was running. I would have been so lost without all of my helpers!!!

The keynote speaker was Karen Gaffney. She is a huge inspiration! I actually had the pleasure of having dinner with her Friday night! A couple of us CDSC board members joined her for dinner.

31 for 21, October 25th

Well I’m off to the CDSC’s convention for the day!

Hot off the press!!!

Remarks By Governor Sarah Palin On The McCain-Palin Commitment To Children With Special Needs

October 24, 2008

ARLINGTON, VA — Governor Sarah Palin today delivered the following remarks as prepared for delivery in Pittsburgh, PA, at 9:00 a.m. ET:

Thank you all very much. I appreciate the hospitality of the people of Pittsburgh, and I’m grateful to all the groups who have joined us here today. The Woodlands Foundation, the Down Syndrome Center at the Children’s Hospital of Pittsburgh, Autism-link, the Children’s Institute of Pittsburgh: Thank you for coming today. And, above all, thank you for the great work you do for the light and love you bring into so many lives.

When I learned that Trig would have special needs, honestly, I had to prepare my heart. At first I was scared, and Todd and I had to ask for strength and understanding. I did a lot of praying for that understanding, and strength, and to see purpose. Continue reading Hot off the press!!!…

31 for 21, October 24th

Thanks everyone! From what I understood yesterday from the doctor is that its not an emergency surgery. We go next week for a consultation and will schedule then. He does not currently have a blockage from the malrotation (which is good).

And the other good thing is that the doc thinks that this procudure will be done by scoping him rather than cutting him clear open (Lord, I hope so!)

The surgion’s office called yesterday to set up the consultation appointment for his surgery so next Thursday we’ll meet with this doc to talk about surgery and set a date.

In other news, I talked to 2 new DS families yesterday and left a message for one expectant mom! YAY! The Holland Committee is off and running!!! I know for sure that one of the mothers will be attending my new/ expectant parent workshop on Saturday at the CDSC’s convention!

31 for 21, October 23

Before I get to the cute Joey video, I thought I better write an update about his upper GI appointment…

Well, I wanted answers, well I got them… Joey malrotated intestines that require surgery. It’s not a surgery that needs to be done like tommorow but it does need to be done. The surgions office will be calling us in the next few days to schedule.

In the future, his stomach or intestines could turn causing an obstruction, which is why it has to be done.

As for his poopy issues, his doctor isn’t convinced that the malrotated intestine is what’s causing it. She said it’s a possibility but not sure. She actually is starting to think it might be from Joey not eating much in the way of “solid foods”. Solid food makes solid poop.

She said we’ll see after the surgery if it helps.

The one thing I know is that I just spent from 7:45 am-2:00pm at Children’s Hospital and I’m so tired is unbelievable and Leah just woke up from her nap so there goes me laying down…

Enough about poo, here’s Joey from the other evening being his typical cute self!!

Photo and video editing at www.OneTrueMedia.com

Nervous…

Joey has an upper GI scheduled tommorrow to see if they can find anything wrong with his tummy that’s causing his poopy issues. It’s weird, I really want answers but I don’t want there to be anything wrong with him. Does that sound crazy????

I’m not looking forward to the poor little guy drinking all of that nasty liquid before the procedure either…

I’m going to need something major to help ease my nerves in the morning!

The kiddos newest playtime….

Please, don’t mind all the toys/ clutter in the background!!

Make video montages at www.OneTrueMedia.com

This weekend, busy, busy, busy!!!

It all started Monday morning checking my emails from the CDSC Board of Directors, finding out that one of the speakers for this weekend’s annual convention, this Saturday, canceled leaving 2 sessions without a speaker. Since I’m the chair for The Holland Committee, I decided to step up and offer to do a new/ expectant parent workshop.

When I was pregnant with Joey, I attended a new parent workshop, and it was wonderful to be with people who knew exactly how I felt at that exact moment. Unfortunatly, it was the last year that the workshop was offered.

So, I’ve been brainstorming different things to do for this workshop. It will of course, be a roundtable session where we’re all facing eachother. I have a booklet written by Kathyrn Lynard Soper, “What Parents Wish They’d Known” that she gave me permission to make copies of, along with a packet of poems to give to the attendees.

Along with the workshop, I’m running The Holland Committee’s Table, and the Buddy Walk Merchandise table. Is there anyway to saw my body into three sections so I can do everything??? I have 3 people who have offered to help me, but only for a while. I just hope I’ve not taken on more than I can handle…

31 for 21, 10/22- Special Exposure Wednesday & WW

Our recent playdate with Dillon!!!

For more Wordless Wednesdays, go visit 5 Minutes for Mom or the Wordless Wednesdays headquarters!

For more Special Exposure Wednesdays, go visit 5 Minutes for Special Needs.

31 for 21, October 20th

I figured this post is good for not only Try This Tuesday but also Tackle It Tuesday!

If you have crazy kids like me, I’m sure they also LOVE to open up the dresser drawers and rip out all the clothing. Well, for me, after a while, I got sick and tired of it!

So what did I do? I went to Home Depot and bought latches for all the drawers on Joey’s dresser! For a while, I was able to just keep the latches closed without anyother devices keeping the drawers closed, that was until Leah figured out how to un-do them….

So off to Home Depot again! This time, I bought a dowel rod and put it through the latches rather than putting locks on them! So far, the kiddos can’t un-do this fix!!!

For more Tackle it Tuesdays, visit 5 Minutes For Mom and for more Try it Tuesdays, visit 5 Minutes For Special Needs!

31 for 21, October 19th

WOW, I’m a bad blogger! I forgot to annouce the winner of my second giveaway of the month! The awareness ribbon cookie cutters!! Joey pulled two names from a hat and the winners are…..

Renee from My Specials K’s and Michelle from Big Blueberry Eyes!!

31 for 21, October 18th (a day late)

Ahhhh, I can’t believe I missed a day! I was so busy yesterday I completely and totally forgot! I went to tag sales, the grocery, Walmart, a birthday party, and to the mall! BUSY, BUSY DAY!

My great find of the day at a tag sale… this kitchen set!! I paid $20 for it and it’s $186 on Amazon!!

I was going to buy a kitchen set for the kids for Christmas, planning to pay full price but guess what?! Not now, I’m going to clean it up and save it for Christmas!

Then I went to Shaw’s Grocery and they were having a grand re-opening sale and had some KILLER buys! So I stocked our freezer up with meat!

I love good shopping days!!!!

31 for 21, October 17th

****Don’t forget to enter in my second giveaway of the month, get your chance to win an awareness ribbon cookie cutter!!!

A wonderful article written by Leticia from Cause of Our Joy.

Civil Rights, Now! — For Down’s Syndrome Babies

Posted By Leticia Velasquez On October 14, 2008 @ 12:00 am In The Edge

These men’s lives are inspiring examples of respect for the people whom David Gerson describes as “learning slowly and loving much”. Tom Vander Woude’s death is another. A sixty-six-year-old father of 7 boys, Tom, a retired Vietnam War pilot, bought a farm in northern Virginia to raise his family. Tom’s youngest son, 22-year-old Joseph whom he called Josie, has Down syndrome. Friends say that wherever Tom went, Josie was with him and that Tom was a tireless advocate for the rights of those with Down syndrome. Three weeks ago, Josie fell into a 10 foot deep septic tank on the property and was drowning in sewage. Tom dove into the tank telling a worker, “You pull, I’ll push”, immersing himself in the muck to save his son. Josie did survive the ordeal, but tragically, Tom didn’t. There could be no stronger affirmation of the worth and human dignity of an individual with Down syndrome than that given by Tom to his son. But sadly, examples like these are the exception. Continue reading 31 for 21, October 17th…

31 for 21, October 16th

I’m so excited! Joey finally made the “A Special Joy: Babies With Down syndrome” gallery on the Parenting & Baby Talk Magazine’s website!

Check him out!!!

31 for 21, October 15th

For more Wordless Wednesdays, go visit 5 Minutes for Mom or the Wordless Wednesdays headquarters!

For more Special Exposure Wednesdays, go visit 5 Minutes for Special Needs.

Don’t forget to enter in my second giveaway of the month, get your chance to win an awareness ribbon cookie cutter!!!

It passed, it really passed!

I keep meaning to post about it but keep forgeting… the senate finally passed the Prentally and Postnatally Diagnosed Conditions Awareness Act, (S. 1810)! And it was signed by President Bush!

This is a very wonderful time for families like ours!

Prenatal Screening Bill PassesDown Syndrome Communities Celebrate as Historic Legislation Ensures that Accurate and Updated Information on Down Syndrome Will Be Supplied To Expectant Couples

MELROSE, Mass., Sept 26, 2008 /PRNewswire via COMTEX/ — Since its introduction by Sens. Edward Kennedy (D-MA) and Sam Brownback (R-Kan) in 2005, the Prentally and Postnatally Diagnosed Conditions Awareness Act, (S. 1810) — also known as the Kennedy-Brownback bill — has become a rally cry from innumerable families of children with disabilities to provide support to parents and prospective parents who learn that an unborn child may have a genetic, chromosomal or physical disability. Presidential candidate John McCain, whose running mate Alaska Gov. Sarah Palin is a mother to an infant with Down syndrome, signed on as a co-sponsor to the bill earlier this month. On September 23, 2008, the Senate passed the bill, which was passed again yesterday by the US House of Representatives, marking one of the most historic moments in the lives of families of children with Down syndrome.

Copyright (C) 2008 PR Newswire. All rights reserved

31 for 21, October 14th

One of the highlights of my year so far was going to Boston for the NDSC’s National Convention. I got to meet so many of my blogging friends who I had never met before. It was so much fun being able to finally meet you all face to face! I know I already posted some of these pictures, but I want to share them again!

Michelle, & Kayla from Big Blueberry Eyes!

Jennifer Graf Gronebury author of Roadmap to Holland & the blog, Pinwheels, and Kathryn Lynard Soper author of Gifts!

Amy & Mason from The Flege Farm, Tricia & Georgia from Unringing the Bell, and Nicole from All 4 My Gals just to name a few of us in this one!

And I can’t forget also meeting Jan from Mauzy’s Musings, Tara Marie & Emma Sage, and so many, many more of you!

One of the highlights of my trip was definetly getting to meet Emily Perl Kingsley, author of Welcome to Holland which as been a huge inspiration for me along with many other parents.

Don’t forget to enter in my second giveaway of the month, get your chance to win an awareness ribbon cookie cutter!!!

GI update

I took Joey to the GI doc today and the good news is, Joey DOES NOT have celiac disease!!! I am so relieved!!! And his GI doctor is one of the nicest doctors I’ve ever met! She is awesome!

But now, I have to take him in for more testing to rule out other problems. I also have to cut his juice intake down majorly to one cup a day to see if that makes a difference. She’s also having us give him pediasure to give him some extra nutrients since he doesn’t eat solid foods.

She is setting us up with a nutrionist to go over his diet in more detail. We also have to take a 3 day calorie count of what he eats, fun, fun.

We made an appointment for Joey to get an upper GI done on the 23rd in Hartford at CCMC. Hopefully that will give us some answers…