Thursday, March 29, 2007

New Blog Home!!!

OK folks, today is a very exciting day, we've moved to so be sure to change your blogrolls, bloglines and anywhere else you might have us linked in!! Check out our new home!!!

Wednesday, March 28, 2007


I've been trying to get Joey to start eating more solid foods and boy, is it getting frustrating!! He's been doing so well with stage 3 gerber foods that I figured it was time to try new foods. He absolutely HATES those meltable puffs, the minute he sees them, he clamps his lips shut. Same with teething biscuits, except with them, he also starts crying. I had made myself Kraft Mac & Cheese for lunch yesterday (healthy huh?) and Joey was watching me with such curiosity that I figured, "what the heck, lets give it a try". So I took some and cut them up into small pieces and gave it a whirl. He has the idea down of chewing, but doesn't do it enough or strong enough to mash up his food. This morning I tried scrambled eggs but he decided he didn't like them. I even put ketsup on them hoping that would help. There has been other foods I've tried with him but he just isn't wanting anything but his canned baby food. Also, some new foods he just gags on. It's like he forgets to chew, he just wants to swallow his food the minute it hits his lips! His OT had me go out and buy those mesh things you can put food in for the baby to chomp on but he once again, throws a fit when I try to give it to him. Tonight I'm going to make something for dinner that I can put into the food processor and chop up for him to see if that works.

I guess I'm just frustrated but I know I need to keep working with him and he'll eventually take to other foods. I just needed to vent to my fellow moms :)

A call for photos of Mom's & their kids with Down syndrome

Barbara Curtis from Mommy Life is putting together a web album of mothers and their children with Down syndrome as her Mother's Day project for this year. If you would like to participate, go visit her blog for more details.

Wordless Wednesday

For more Wordless Wednesdays or to participate, go here.

Tuesday, March 27, 2007

Genetics visit last week

I went in last week for my first trimester risk assessment ultrasound and my prenatal lab work at Yale's genetic's department. I told them up front no other testing, no amnio or CVS. Anyways, the blood work came back fine with no elevation in my blood levels for Trisomy 21 or 18. My ultrasound showed that the baby has a thicker nucual thickening around its neck. Average is 3.0mm, my baby's is 3.1mm. When I was pregnant with Joey's his was almost double that that plus no nasal bone is what first made them suspect Down syndrome. His nucual thickening was severe enough to be classified as a Cystic Hygroma, but we were fortunate that it dissolved by the time he was born. This baby has a nasal bone. After ultrasound tech was finished, he went and got the doctor to take a look. Of course, the doctor saw that this baby's nucual thickening is a little abnormal. I was a little mad when he said, "I'm sorry", like he was sorry he was giving me bad news or something. I'm not worried what so ever, if this baby has Down syndrome too then God chose us to have another children with an extra chromosome, so what! I'd feel blessed to have another child with Down syndrome. Neither of us are T-21 carriers and the odd's of this child having T-21 is 1 in 45. The only reason for the odds being what they are is due to nucual thickening being what it was. Without the nucual thickening, the odd's were 1 in 100. I guess more than anything I'm mad at the doctor for saying "I'm sorry", because I'm NOT sorry, I'm happy! I'm 13 weeks pregnant and the baby is healthy. It has a nice strong heartbeat and has 2 arms and 2 legs. What more could a parent want?!

Celebrate a new holiday -- Disability Awareness Month

Here's a great article written by Jeff Huffman who happens to be Nash's Daddy and you can go visit his Mommy's blog at Mauzy's Musings.

Jeff Huffman column: Celebrate a new holiday -- Disability Awareness Month

Help, employ those with disabilities; making a friend easy as saying 'hi.'

Written by Jeff Huffman
March 23, 2007

When you think of March holidays, what do you think about? St. Patrick's Day? Spring break? Dr. Seuss' birthday? (It's true, Dr. Seuss' birthday is being celebrated this week at Goddard School, where our son attends after morning kindergarten at White River Elementary.) How about that Uranus was discovered on March 13, 1781? (OK, my wife Jan found that one.) But did you also know that March is Disability Awareness Month? And this celebration is one where you not only should mark your calendars, but you should also take action.

If someone had asked me about Disability Awareness Month six years ago I would've told them I'd never heard of it. Now that I am involved in disability awareness, both professionally and personally, I realize, it's about "abilities" not "disabilities."

Six years ago our journey commenced when our son Nash was born with Down syndrome. I sought out every bit of information I could and realized that what textbooks, brochures and Web sites left out were the personal connections -- the real people, the ones that experience disabilities daily themselves or through a family member. These experiences molded my perception. People who don't walk the walk and live the everyday life don't know, and it's up to those that do to let others know the needs, the wants, the possibilities, the desires.

Today, individuals with intellectual and physical disabilities are open to a world of possibilities. That's partly due to the Individuals with Disabilities Education Act that has given children with disabilities the right to attend public school since 1975, along with the Americans with Disabilities Act which gives individuals with disabilities the legal right to pursue life, liberty and the pursuit of happiness, including employment.

So it might surprise you that 80 percent of individuals with disabilities are underemployed or unemployed. As a country, a state and a community we have to fix this final roadblock. How can we do this?

• Transportation is the No. 1 roadblock to employment, so continue to support Hamilton County's expansion of public transportation.

• Encourage everyone that your family does business with to hire individuals with disabilities -- 89 percent of Americans prefer to do business with organizations that employ people with disabilities, according to a Gallup Poll.

• Support school systems' efforts to accomplish great things for students with disabilities by supporting inclusion in classrooms and improving the transition process from school to work.

Those are just three easy ways that we can begin to celebrate Hamilton County's first "Annual Ability Awareness Month." The easiest way to start is do what I try to do everyday: When I meet a new friend who happens to have a disability I just smile and say, "Hi. . . . "

Jeff Huffman is president and chief executive officer of Janus Developmental Services.

Monday, March 26, 2007

We're home!

Wow, what a weekend!!! Let me start off by saying that we will NEVER fly using Southwest Airlines ever again! All 17 of us flew out of Islip Airport in Long Island on Thursdays and arrived in Chicago at Midway Airport. My sister in law, Eileen, and her husband's 2 suitcases, missing and NEVER arrived for the whole weekend. They had to go out and buy clothes for the wedding (which they were reimbursed for) and then yesterday, lets see.... finding out that one of Eileen's bags had been found in Florida, my other sister in law, Kerry's boyfriend's luggage not arriving with his flight, my brother in law, Christopher (THE GROOM'S) luggage not making it to their honeymoon destination and to top it off, they lost Joey's carseat!!! Keep in mind, on the way home, there was 3 different flights and on each flight, someone lost luggage. And I wouldn't have been so mad about our's, but come on, a car seat?! Thankfully, they had loaner carseats so we were able to go home and also thankfully, Joey's carseat was found by the time my in-laws flew in last night so they were able to bring his carseat home with them and Southwest Airlines is going to pay to have the loaner carseat FedEx'ed back to them.

Besides our mishaps with the airline, we all had a wonderful weekend! The wedding was wonderful, I love weddings!! And the reception was a blast! Joey got so much attention that he was so tired by the time we left. I took so many pictures, 213 to be exact! So I'll only post a few...

My two boys waiting for the wedding to start, aren't they handsome?!

The newly weds!!

Me and Joey (yes, I cut my hair off, 6 inches gone!!!)

Us girls!!

Joey with the newly weds!

"Mommy, I'm tired, can we go home now?"

Wednesday, March 21, 2007

World Down Syndrome Day!

As many of the other parents that have children with Down syndrome have posted, today is World Down Syndrome Day. March is the 3rd month of the year and today's date is the 21st and since Trisomy 21 is a 3rd 21st chromosome, today makes the perfect day to celebrate Down syndrome awareness!!!

Please take a minute today to try and educate someone new on some the misconceptions about Down syndrome. Heck, show them a picture of Joey... does he look like he's suffering or a burden? Heck no!!!! He's perfect!! Also, if you've not read my story about when we learned that Joey has Down syndrome, please read it.

Also, a great article on WDSD, Disability must be valued, written by Jenny Bockerstette.

Wordless Wednesday

For more Wordless Wednesdays, go here.

Tuesday, March 20, 2007

Crazy week!!!

So yesterday was my calm day of the week. Joey's EI teacher came for her visit and that was it for the day. Thursday we are flying to Chicago for my husband's brother's wedding. I'm very excited, I've never been to Chicago before so this is going to be something new!! Not to mention that I love weddings!! So the rest of this week goes as follows...

1. Take a shower while Joey naps
2. After Joey's nap, find a hair salon that has an opening so I can get my hair cut
3. Pick up my hubby's suit from the dry cleaners!
4. Joey's speech therapy at 3:15
5. Dig out suitcases and start packing
6. Attempt to shorten the legs on Joey's suit for the wedding

1. Joey's physical therapy at 12:30
2. Ultrasound at 2:30
3. Drop Joey off after the ultrasound at my in-laws and take the twins to get their fingernails painted and a pedicure for myself
4. Try to pack more
5. Buddy Walk committee meeting at 7:30

1. Wake up EARLY, finish up any last minute packing and be out of the house by 9am to go to the airport!!!! There will be 17 of us on one flight, so it's going to an interesting ride with all of Patrick's family!

Friday-Sunday we're in Chicago sooooo, if I'm not around much in the next week you know why. Don't worry, nothings wrong, I'm just going to be REALLY busy!! And the cool thing is, I'm going to be getting another sister in law!!! This weekend is going to be a blast Steph, try not to go crazy for the next 4 days!!

Saturday, March 17, 2007

Snowed In!

Well, yesterday morning I woke up feeling worse than the other days. My head was killing me and I could barely breathe. I called my doctor and got the last appointment available for the day. 12:45. I knew that we had a winter storm heading our way but thought I could get back and forth before it got too bad. WRONG! I left a little after 10am to drop Joey off at my in-laws and by the time I got there, the roads were AWFUL! I slid past my in-laws driveway, slid past their neighbors, got turned around in the next street and went to pull into their driveway. My van went sideways and I slid into the guardrail across from their driveway. Thank goodness I was only going about 2mph and did no damage to my van and didn't even wake Joey up from his nap. So I back up and pull into their driveway. Almost 20 minutes later I walk in the door. I kept sliding and getting stuck in the driveway (what a mess!!). No one was home at their house yet so no one heard me trying to get up the driveway which was good due to the fact I was in no mood to talk to anyone after that ordeal. There's one thing I've learned from that experience... new, better tires on my van by next winter!!!

So needless to say, I called and canceled my doctor's appointment. There was no way I would have made it to my doctor's office. Throughout the day, I started feeling worse and worse. Thankfully I had my mother in law and sister in laws to take care of Joey. The snow was falling my the inches which followed in the evening with sleet and a lovely layer of ice. My husband got off work at 2:30 and the usual 20 minute drive to his parents house took him almost 2 hours!! We decided to stay put to see if the weather was going to let up at all. By 9pm, still coming down hard. So we decided to stay the night. It iced all through the night and into the early morning.

This afternoon the sun is finally out and melting the ice down some. We'll hopefully leave here soon to go back to our house and feed my poor little fishies! What a way to spend our St. Patrick's Day, snowed in!!!

I'm feeling MUCH better today, actually about 75% better. I felt so sick yesterday, miserable, down right miserable. Thankfully much better now!!

Thursday, March 15, 2007

One Year Checkup

Joey and I just got back from his one year check up with his pediatrician. Things are looking great! He's 18 pounds, 3 ounces and is 28 inches tall! He also got 3 vaccinations which he wasn't too happy about getting. Dr. B was thrilled with how well Joey is doing.

Did I mention he's starting to stand?! He can't pull to stand yet, but if you stand him up next to the couch, he's holding himself up for about 30 seconds at a time. Joey's PT about had a heart attack today when she was working on his standing. He also wants to crawl so bad, but instead of pushing off with his knees, he tries to use his foot and falls back down. He'll get it soon enough!!

I've had a darn cold the past couple days and it's driving me crazy. Whenever I think it's getting better, I start feeling like crap again. It just stinks since I'm pregnant, I can't really take anything besides Tylenol and benadryl to feel better. I can't even take a nice, hot bath (lord, what I would pay right now to soak in a nice hot bath!)

Also, I forgot last week that I promised pictures of Joey in his new bath seat. He absolutely loves the thing! I think he'd stay in the bath for a hour if we'd let him!!

Wednesday, March 14, 2007

Thanks Heather!

Heather over at Flaugh's Flaws made me this for Joey's birthday and I couldn't get the darn thing to post on here without the picture turning into one of those lovely "x" screens. Anyways, here it is!!

For Better Or Worse

This was posted today on DownSyn and I just wanted to share it with everyone. I didn't know until today that the comic strip had a character with special needs. It's nice to know that the author is helping to promote awareness in the way she is.

Also, check out Shannon's character bio here.

If the comic print is too small, click on the actual comic for a larger version.

Mr. Chatter Box

Notice at times when he gets excited and talking at the same time, he gets a red line down his forehead?? He's too cute sometimes!!!

Happy Birthday Joey!!!

Happy Birthday to my sweet boy. I love you and can't believe you're already One Year Old! This past year has gone by so fast, before I know it you're going to be talking, walking and just being a big boy!

Tuesday, March 13, 2007

Joey's Birth Story

The FlipFlop Mamma has inspired me to share Joey's birth story with everyone since she shared both of her's last week. And since I went into the hospital one year ago today, I'm posting this today!

Joseph Patrick
March 14, 2006
1:09 PM
5 lbs 8 oz, 20 inches long

Well, I'm actually going to start out 4 days before he was born...

Friday, March 10 started out like any other day for the first couple hours, then I started having contractions. Since they were 7 minutes apart and it was Friday afternoon I figured I better go get checked out since it was Friday. I drove myself to the doctor since my hubby was still at work. Of course I was only 1cm dilated and my cervix was only 50% thinned. Sent home... barely slept that night.

Saturday, March 11, I was still having contractions about 7 minutes apart but they weren't as strong but I was starting to feel very uncomfortable. That afternoon we took our dog Chewie to his new home since he was too wild and hyper to have around a new baby. This broke my heart. I cried that whole night. Chewie had been my best friend since I moved to Connecticut and one of a few friends I actually had. Again, barely any sleep.

Sunday, March 12 was my baby shower over at my in-laws house. I was feeling even more uncomfortable than the day before. I just wanted to get the shower over with so I could go home and lay down. During the shower, I lost my "plug". Slept a little, but not enough...

Monday, March 13 it seemed like my contractions had almost gone away and I got a HUGE surge of energy. I washed all of the baby clothes we received at the shower. I put away all of the gifts. Rearranged Joey's dresser, cleaned the house, I can't even tell you what all I did that day. Around 5pm I was cooking dinner and BOOM, contractions!! About 6 minutes apart this time but the pain was much worse. Since they still weren't exactly 6 minutes apart each time, still irregular, I knew not to call my doctor. Instead, I got in the bath tub and labored in there as long as I could. By then, it was about 10 pm and I couldn't handle it any longer.

Off to the hospital, we get to Yale and the doctor on call checks me out. Still 1cm and only 50%!! I couldn't believe it, I lost it. I started bawling my eyes out telling the doctor how tired I was and how long I had been having contractions. He decided to admit me on bedrest for the night and to give me something to help me sleep.

Tuesday, March 14, about 7 am, I had barely slept at all that night and whatever he gave me to sleep did relax me enough to rest although the contractions were getting very strong and close together. The doctor came in and checked me again. 4cm!! They transferred me from the room I was in up to labor and delivery. Epidural here I come!! A couple house later, the doctor broke my water and by 10 am, I was ready to push.

I started pushing and pushing. My nurse, Indie was helping to coach me through the pushes, and was yelling at me to "focus on your rectum" (yeah, you heard me right, which my husband found very funny yet annoying)...after 3 hours of pushing, at 1:09pm we welcomed Joey into the world. I had given the hospital a copy of my birthing plan. I wanted everything to be as normal as possible. I didn't want people to treat my baby differently just because he had Down syndrome. I didn't want him to be taken away for evaluation & testing, I wanted to have my time with Joey like any normal birth. There was a pediatrician there who quickly checked his breathing and heartbeat so he was handed back to me. He was beautiful, so perfect. I didn't care about him having Down syndrome, I knew he was my child and that's all I cared about. He was safe in my arms.

But my story doesn't end there... about 1 hour after I gave birth to Joey and we were transferred to our room, I felt funny. I told the nurse I thought I was peeing. She told me impossible but I argued with her until she checked. I was hemorrhaging!! She yelled for help and after a couple minutes the bleeding was stopped, my stitches ripped out and I had no energy. The nurses checked my blood count and of course, I was low. They started pumping me full of fluids and gave me this nasty tasting pill to help my blood count raise back up. Luckily the pill worked because if it wouldn't have, I would have had to get a blood transfusion.

But you know what, after the days of labor, 3 hours of pushing and the hemorrhaging, it was all worth it. I love Joey and would go through it all again in a heart beat!! (I just hope this next labor isn't as long!!)