Tuesday, October 31, 2006

I'm not sure if I've ever posted much on signing, but I took American Sign Language in college for 3 years. I never finished my degree in Interpreting, but I did recieve a certification in Manual Communications.

I've been signing with Joey, but I can't teach the rest of our family myself. It's too hard to teach everyone. Not to mention, I need some refreshers here and there. I keep reading about everyone and how much they love the Signing Time DVDs.Does anyone know where I can buy some of the Baby Signing Time DVDs besides EBay or their home page? They're so expensive on both of those places and we just can't afford to spend that kind of money right now. Let me know if anyone has any ideas!

Frustration

After reading a post over at Down Syndrome Life about people's reactions to his daughter, it helped to in a sense inspire a post that's been brewing up inside of me. We haven't had the issue of people staring at us until recently when Joey got his helmet. People would be staring even if I didn't paint it so I know that's not why people are staring, they're staring because he's wearing the darn thing. For me, it's going to be worth it for him to have a nice round head and not one with a HUGE flat spot on the back. Not to mention I think it's kinda cute! I wish he wouldn't need to wear it, but since he does, I'm making the most of out it! Anyways, first example of people... our first time out after the helmet was at church. I was holding Joey as we were walking up for communion and I could FEEL the people staring at us. My husband said everyone turned their heads and started whispering to each other. Grrr...

Then, last week I took him to the BJ's Wholesale Store and I literally had 20 people stop me and ask about the helmet. One guy actually had the nerve to say, "so what does he have water on the brain or something", I calmly replied back, "no, my son has down syndrome and his bones are softer and that caused his head to have a flat spot".

I know that people don't always realize that they're staring but geez... it kinda hurts. The older Joey gets, more of his facial features are becoming noticeable and people will be staring at him because he has Down Syndrome. Does anyone have any advice on how to handle people who stare? Besides what my husband does, he glares right back at the people. Some people have great comments about his helmet and how cute I made it, others like the jerk at BJ's have no common sense in what to say to someone. I don't really know where I'm going with this post, but I felt the need to vent/ ramble.

Wordless Wednesday



For more Wordless Wednesdays, go visit 5 Minutes For Mom!
I can't believe it! He can't retire! What will the Price Is Right be without Bob Barker?!?!?! I've been watching the Price Is Right my whole life (along with half of America), and Joey and I watch Bob daily and I can't imagine watching that show without him.
border=0

I just wanted to wish everyone a Happy and Safe Halloween! Joey is excited to greet all of our Trick Or Treaters tonight and so am I! I just hope we don't run out of candy again this year! I bought two extra bags just in case!


Was was orginally going to be a pumpkin for Halloween but since he has the helmet and its decorated like a NY Giants football helmet, he is now a football player for Halloween!

Monday, October 30, 2006

Thank goodness, yesterday was hay fever. Whenever it's really windy, it seems to flare up. I never thought I would want a major freeze, but we need a freeze to kill whatever is making my sinuses go crazy!

I just looked back on my posts from last week and realized that I never posted on the progress with Joey's helmet... his head has already had a 4mm change! The helmet lady was very surprised to see that big of a change already. She said he might not even have to wear it for 13 weeks now, it might be shorter!!

We had a great weekend. We went to a friend's Halloween Party in Massachusetts and had a great time. They had an extra room so we brought Joey's pack n play & monitors and spent the night. It was nice being able to be at a party and check on Joey all at the same time. Patrick and I dressed up like pirates and of corse my camera batteries went dead before I was able to get a picture of us! Hopefully someone else took one!

Well, I guess that's it for now!

Sunday, October 29, 2006

sniffle, sneeze....

Well, this morning I woke up all stuffy and sneezing my brains out, and now with my ears hurting & popping ,and a headache to top it off. Still not sure if it's hay fever, a sinus infection or a cold, with any of them not being much fun, I'm hoping it's gone by tomorrow. I've taken enough sinus medication to hopefully nip it in the butt! I can't afford to get Joey sick! With that, I'm going to bed!!!!

Friday, October 27, 2006

Favorite Ingredient Friday


Apple Crisp

INGREDIENTS
10 cups thinly sliced apples
1 cup white sugar
1 tablespoon all-purpose flour
1 teaspoon ground cinnamon
1/2 cup water
1 cup quick-cooking oats
1 cup all-purpose flour
1 cup packed brown sugar
1/4 teaspoon baking powder
1/4 teaspoon baking soda
1/2 cup butter, melted

DIRECTIONS
Preheat oven to 350 degrees F (175 degree C).
Place the sliced apples in a 9x13 inch pan. Mix the white sugar, 1 tablespoon flour and ground cinnamon together, and sprinkle over apples. Pour water evenly over all.
Combine the oats, 1 cup flour, brown sugar, baking powder, baking soda and melted butter together. Crumble evenly over the apple mixture.
Bake at 350 degrees F (175 degrees C) for about 45 minutes.

*Another great recipe for this time of the year!!!!

For more Favorite Ingredient Fridays, go to Overwhelmed With Joy!

Thursday, October 26, 2006

I was just doing my usual google search of news with the keywords with Down Syndrome and I came across this story about a young man named Tyler from Apple Valley, Minnesota, who has Down syndrome and is his high school football team's student manager. "Student manager with Down syndrome inspires football team" written by Rick Shefchik.

Wednesday, October 25, 2006

Wordless Wednesday



For more Wordless Wednesdays, go to 5 Minutes For Mom!

Tuesday, October 24, 2006

Wow, 5 minutes ago I put Joey in front of the TV and turned on his Baby Einstein DVD and it's still keeping him amused!

Yesterday I took Joey to Norwalk to go see Lori Overland, an Oral Motor Development Specialist who's evaluations usually cost $600 and her sessions $400, but is currently doing a study on babies with Down Syndrome 7 months to 3 years, and we're getting her services for free since Joey is 7 months old! Her study is looking at new ways to feed babies with DS to work on less of a tongue thrust. It involves me massaging his mouth before I feed him food and a certain way to use the spoon. It's going to be extra work but I'm willing to try! I'll be sure to keep you guys updated on how it's going.

Today, I take Joey to get his helmet adjusted for the first time since he got it last week. I really think they need to take a little off the back. When he sleeps in his crib, he can't sleep on his back. His poor little head gets tilted too much so he rolls onto his side in which he then rolls onto his stomach. Once he gets onto his stomach he gets stuck and starts crying, or sleeps with his head face down into the mattress (which is no good!). So they better come up with a solution today. My only free day this week without an appointment for Joey is Friday and I can't wait. Yesterday I had an one hour drive each way and today I have the same.

Well, it's been almost 10 minutes and Joey is still watching his DVD but starting to get a little frustrated. I better go rescue him!

Sunday, October 22, 2006

My story

I just realized that I haven't written a post on October being Down Syndrome Awareness month! For me, it's not only a month to promote awareness, it's almost like an anniversary too. I decided to write about when we found out that Joey has Down syndrome as my way of celebrating Down syndrome awareness .

It was one year ago that we found out that Joey has Down syndrome. There I was, only a couple months pregnant and went in for my First Trimester ultrasound. The ultrasound technician was such a pleasant lady showing me different parts of my baby's body when she suddenly got this look of concern on her face. She finished up the ultrasound and left the room. I laid there on the bed confused, "why did she make a face like that? I heard my baby's heartbeat and saw it moving, what could be wrong?" She came back in with the doctor a couple minutes later and the doctor started doing another ultrasound. He went directly to the neck then the face. The doctor looked at me and told me that my baby had a cystic hygroma on it's neck which was a fluid filled sac and that it's nose was smaller than most babies' noses at that gestation. I was so confused, he then proceeded to tell me that there was a good chance that my baby has Down syndrome and that I should go talk to their genetic counselor.

I laid there on the table confused and started to cry. I knew when he told me that, that my baby had Down syndrome. I just had a feeling. I was shaking and didn't know what to do. The ultrasound technician led me into the genetic counselor's office. I sat there in the chair and waited for her to come in.

Once she arrived, she proceeded to advice me on getting my baby tested through CVS or amniocentesis. She also advised me that if my baby did have Down syndrome that I had the option of terminating my pregnancy. I didn't even have the diagnosis yet and they were already talking about ABORTION! There was no way I would ever abort a child. I told the counselor that I needed to go home and talk with my husband before I made any decisions on testing.

I left with a pile of various articles on genetic testing, and down syndrome. When I got out to my car, I went into hysterics. This was going to be our first child and it most likely has down syndrome. I thought that only older woman had babies with DS. I was only 24 years old! I called my boss since I was suppose to go back into work and told her what happened. She told me to go home and take it easy. Then I called my husband and told him, then called my mom and really lost it.

I finally calmed down enough to drive home. I walked in our house and was greeted by our dog. I sat on the couch and I don't think I did much else until my husband got home. We sat down after he got home and talked. We knew the risks with genetic testing but since this was our first child, we decided to go ahead with the CVS.

I went in around the first of October and had the procedure done. And BOY DID THAT NEEDLE HURT!!!

It took less than a week for the results to come in. I had just gotten home from work when the phone rang. My husband wasn't even home yet. I looked at the Caller ID and saw that it was my OB and he was calling from his home. I knew before I picked up the phone what he was going to tell me. He told me that my baby had Trisomy 21 and that it was a boy.

I hung up with the doctor and sat still for a minute before I reacted. I went into complete hysterics. I was uncontrollable. I tried calling my husband, no answer. So I called my mom clear out in Ohio. She made me call my in-laws right down the road so I wouldn't be alone and then tried to calm me down. I finally calmed down a little and got my husband on the phone. In the mean time, my father in law and sister in law came over so I wasn't alone. My husband finally got home and the four us of us sat there and didn't know what to do or say.

I got online and started looking up websites on Down syndrome. The more I thought about it, the less upset I was and I started getting excited, then I realized, "IT'S A BOY!!!" We wanted a boy so bad and we were getting him! Down syndrome or not, it was going to be a boy! We had picked out the name Joseph Patrick after my father in law. He had actually asked me if we were still going to use his name,I asked him if he still wanted us to and he said, "of course!" My father in law has always been our number one supporter and adores Joey with all of his heart. I couldn't ask for better in laws. I love them dearly!

I started reading more and more on Down syndrome. I wanted to educate myself, along with our families as much as I could before Joey was born. I read every article I could find and bought every book I could find. (Of corse, I look at those books now and laugh- they're useless. All of our children are so different, the books barly did any good!)

I found the Connecticut Down Syndrome Congress and we joined immediately. Luckily, we hadn't missed that year's convention yet. We registered and went to it a month later. That day we met so many other parents of children with Down syndrome and realized we weren't alone.

Right after I had Joey, Rebecca from Always Chaos found my blog and that leads me to now. I've made so many online friends through this blog that I can relate with. Thank you Rebecca for finding me!!!!!




I look back on how silly I acted, almost thinking that it was the end of the world and almost laugh at myself. God chose us to have Joey and I wouldn't have in any other way. I have started to dedicate my life in becoming an advocate on Down syndrome and to being the best mom I can be for Joey and future children we will have. I love Joey with all my heart, extra chromosomes and all!
I just wanted to share an article I just came across featured on the NADS website called If People With Down Syndrome Ruled The World written by Dennis McGuire, PhD.
It truely saddens to me to post that sweet little Canon passed away yesterday morning. Rest in peace sweet boy.

Teachings Of Jon

Pat and I were watching TV this afternoon and came across a program on our local public access station called The Teachings Of Jon. The show was about a man with DS and his family. He was sent off to a home when he was a baby and later his parents brought him back home to live with them. It actully kinda reminded me a little of the Memory Keepers Daughter.

Friday, October 20, 2006

I just came across a blog that I wanted to share about a little boy who needs lots of prayers. His name is Canon Norman and he was born with a heart defect. He recently received a heart transplant and then had a stroke. Please go visit his mother's blog and also pray for Canon and his family.

5 Ingredient Friday




Freaky Fudge

INGREDIENTS:
·12 oz. pkg. semisweet chocolate chips
·1 cup milk chocolate chips
·14 oz. can chocolate sweetened condensed milk
·2 Tbsp. butter
·Gummy worms or gummy bugs

PREPARATION:
In microwave, melt chocolate chips with sweetened condensed milk and butter on MEDIUM for 2-3 minutes. Stir well. Return to microwave if necessary and continue melting on MEDIUM for another 2-3 minutes. Stir until smooth. Pour into greased 8" square pan, and top with the candy creatures, pushing them gently into the fudge. Chill until firm. Store well covered in the refrigerator.


A great recipe for Halloween parties!

I just found out that 5 Ingredient Friday will be Favorite Ingredient Friday from now on, so next week look for one of my favorites!

Thursday, October 19, 2006

Today I hit a milestone that I truly needed to hit. Sometimes it takes something to trigger one's mind to realize that they need to get their act together. For me, this was budgeting our money better. Let's face it, almost every couple starting out hits a low at some point, that's us right now. We're broke! Patrick started his new job and is making a lot more money than his last job, but we've been spending way too much. Between needing buying new fall clothes for myself (last year I was in maternity clothes & my clothes from the year before are too small), trying to get home to see my family, groceries, the high price of gas, Joey's formula, diapers & now baby food, and all of our bills, we're not saving one single cent! I think it's time for me to take some financial advice from my mother in laws favorite person, Dave Ramsey before we end up completely broke.

I am in charge of our fiances and so far I seem to be doing a crummy job doing it. I do by best to not buy little extra things that we really don't need, but I love shopping. It's an addiction of mine that I'm having that hardest time beating. I always think to myself, "oh it's only $5" or something along those lines. Well, all of those $5 add up really quick!

I've got to start saying no to myself and showing some discipline! I've been so good at clipping coupons, looking for sales, but it's just not enough. If anyone has any words of advice or suggestions, I would love to hear them! I just hope I can live up to what I just wrote...

I will end with these two quotes by Ralph Waldo Emerson:
"Money often costs too much" and "Can anybody remember when the times were not hard and money not scarce?"

Wednesday, October 18, 2006

Wordless Wednesday




Joey meeting my turtle Gus for the first time back in Ohio.

For more wordless wednesdays, go visit 5 Minutes For Mom!
Yesterday we went and picked up Joey's helmet. He doesn't seem to mind it at all except for when his head starts to sweat. That boy gets so grumpy when he gets hot! Anyways, I painted it last night and gave it the theme of Patrick's favorite football team, the New York Giants. I did my best to make it look like a Giant's football helmet.


Tuesday, October 17, 2006

We're home!

Wow, after a long 10 days, we're back!! I really went through some blogger withdrawal while we were gone! I couldn't check up on all of my favorite blogs and was going crazy wondering how everybody has been doing!!

Our trip was wonderful! I always love getting back to Ohio to see my family and friends. Saturday the 7th was my Grandma's 80th birthday party, so I got the chance to see all of that side of the family. Along with meeting 2 of my cousins' new babies for the first time! Little Jacob and yes another Baby Joseph!! Of course my Joseph is about 3 times the size of this little guy. The party was a lot of fun and we were all very grateful that we had Grandma after her open heart surgery/ stroke in August.



Monday through Friday was full of visiting everyone and just staying home and relaxing. Except Joey decided that while on our trip, he was going to start getting up at 4am instead of 6am. Luckily, he would go back to sleep around 6 or 7 and my mom would take over so I could go back to bed for a couple hours (THANK YOU MOM!!!)

This past weekend was the Sauerkraut Festival in Waynesville. It's probably my (along with most of my family's) favorite weekend of the year. It is a family tradition to go every year. My Aunt and Grandma have a craft booth at it so, we all gather together, take turns selling things at our booth and stuffing our faces full of various foods... some with Kraut, some without. This year, I ate such a mixture of food: sauerkraut pizza, sauerkraut donuts (which don't really have kraut in them), apple flappins, BBQ pork chop sandwich, carmel apples, peanut butter fudge, ham & soup beans, hot dogs with sauerkraut, fried mushrooms, cheese sticks. Of course some of these things I split with my cousin. I know I ate more, but I just can't think of it all. The one thing I DO KNOW is that I need to diet for the next 6 months to lose all the weight and calories I took in those 2 days!! Every year I look forward to the 2 days I get to spend with my family and pig out. I still have yet to miss a festival and I hope I never have to.

Friday, October 06, 2006

Well, Joey and I are out of town for the next 10 days! We're off to good ol' Dayton, Ohio to see my family & friends! I'll try to update, but I'm not sure how much time I'll have!

5 Ingredient Friday



One Dish Spicy Chicken Mac and Cheese

-1 (10 ounce) can tomatoes and green chilies, diced (rotel)
-1 lb boneless skinless chicken breasts, cut into bite-size pieces
-1 (12 ounce) package macaroni shells and cheese
-1/2 cup sour cream
-1/2 cup cheddar cheese, shredded

Directions
1. Spray large skillet with cooking spray and saute chicken on medium-high heat for about 5 minute or until cooked through.
2. Drain liquid from tomatoes into a 2 cup liquid measuring cup and add enough hot water to measure 1-3/4 cups.
3. Add macaroni, tomatoes and the tomato liquid mixture to the pan and mix well.
4. Bring to boil and reduce heat to medium-low. Cover and simmer 9 to 10 minute or until macaroni is tender.
5. Remove from heat and stir in cheese sauce from mac and cheese package and sour cream until well blended.
6. Sprinkle with shredded cheese on top and cover.
7. Let stand 1 to 2 minute or until cheese is melted.
-TIP: Reduced fat items can be used but I don't recommend nonfat.


**I actully was just online looking for new cassaole/ one dish recipes and came across this one, and since it sounds so yummy, I thought I would share it!

For more 5 Ingredient Fridays, go visit Overwhelmed With Joy!

Thursday, October 05, 2006

helmet mold

Well, Joey got the mold made for his helmet. I was allowed to take pictures, so you know me and how much I love photos so here they are! The first two are actually take by Cranio Technologies and the rest are of coarse, by me. He wasn't a very happy camper, I wouldn't have been either, but it'll be worth it in the end.


Pat & I think this looks like a mug shot!




Wednesday, October 04, 2006

Opps!

Today was one of those days when I just wanted to go back to bed and start all over! I was suppose to have an 11:00 doctor's appointment. So I get Joey all ready, pack everything up and start my car. The "check engine soon" light came on, so I shut off my car and checked the oil. It was low, so I grabbed to blue bottle out of my trunk and started to fill up my oil. I looked down as I started to fill the oil to realize that the fluid I was putting into my car was red and smelled nothing like oil! It was transmission fluid!!! So I stopped filling up my car. Luckily I had enough common sence to not turn on my car so I've been stuck home all day waiting on my husband to change my oil. Definetly a ding-bat moment! And to top it all off, I had to miss my doctor's appointment! Grr...

Wordless Wednesday



Off the coast of New London, Connecticut.

For more Wordless Wednesdays, go visit 5 Minutes For Mom.

Tuesday, October 03, 2006

Joey's PT came over today to go over the evaluation she did last week. Joey fits into the 4-6 month percentile except for his upper body strength. So, they're adding on physical therapy once a week, occupational therapy once every other week, speech therapy once every other month, a teacher once a month and a nutritionist every couple months. I can't complain about all that! The more help, the better.

It was also suggested today that I take Joey in for a GI evaluation. He's been having issues with constipation. Even with all the prune juice and fruit, he's having difficulties going. I feel so bad for him, he has to push so much and cries the whole time, the barely anything comes out. I never thought I would be so obsessed about someone's BM's!!

Today, I got an email from a parent here in Connecticut that was doing a google search on Bumbo Seats and came across my blog. What a small world!! So a quick hello out to Holly!!

Monday, October 02, 2006

Holiday Cooking, Blogger Style



Oven Baked Chicken Salad
-2 Cups of cooked chicken (shredded)
-1 cup chopped celery
-1/2 cup salted cashews (chopped)
-3 tbsp lemon juice
-1/2 cup chopped green peppers
-1 tsp salt
-1 cup mayo
-1/4 tsp sweet basil
-1/4 cup chopped pimento
-1/2 cup milk
-1 can french fried onions
-paprika


Directions
-mix all of the ingredients except 1/2 can french fried onions & paprika. Pour into greased casserole dish. Bake covered for 30 minutes at 350 degrees. Remove from oven and top with remaining onions & sprinkle with paprika. Bake 5 minutes longer uncovered.

Category: appetizer, side dish, or snack


For More Holiday Cooking, Blogger Style, go to Overwhelmed With Joy!

Sunday, October 01, 2006

Buddy Walk

Our Buddy Walk yesterday was a HUGE success! We had the perfect weather, Joey was such an angel, and we raised $895 for our team. We've been recuperating all day!! My friend who is stationed in Groton even got a weekend leave and was able to be there with us. It was all together a wonderful day! Here's some pictures...


Patrick & Uncle Martin


Aunt Eileen, Aunt Margaret & Aunt Maureen


Our view during the walk


Team Heeran!


Mommy, Daddy & Joey!!!


Dancing to the "good bye" song