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Monday, December 31, 2007
Just wanted to say to all HAPPY NEW YEAR!!!!
I really hope all of you have a healthy and prosperous New Year!!!!
I always get excited thinking about the year ahead.

What 2008 will bring the Bissol Family:
1. My Joey will turn 11 this year and begin middle school.
2. Olivia will turn 3 and hopefully be binky free and potty trained. She will also get to start at dance class.
3. Megan will turn 5 and will too hopefully be potty trained. She will perform in her 1st ever dance recital.
4. Me and Joe will celebrate 14 years together and 7 years of marriage.
5. We will welcome a nephew into the world in March
6. The girls will be getting big girl twin sleigh beds.
7. We will get to see all of our friends at the annual NDSC conference in Boston.
8. My parents will have been married for 24 years in June.

Tonight we will ring in the new year with our friends The Falkevitz Famimly, my sister and her boyfriend Will and our friends The DeJesus Family! I will take a ton of pictures to share. I hope to hear all of you banging your pots and pans!

Till next year!
Love,
Stephanie Bissol
Sunday, December 30, 2007
So I have been googling and researching the use of Ginko in children with Down Syndrome and I am liking what I am reading. Megan right now is not on any vitamin supplements. We did start with the Nutrivene in August but have since stopped when I lost my scooper in October. A poor excuse I know but I didn't want to guess on the scoop size. I have just re-ordered one so we will start it up again soon. I am just worried with her blood work being redone that it might mess with it.

I came across this website through the DSTNI yahoo group and it has made me more intrigued. It talks about the use of prozac and a protocol to use. Please check it out including the videos.
Changing Minds Fouondation

Any personal info anyone might have on this good or bad please let me know. Or if you want to share any more websites or research.
Thanks!
Saturday, December 29, 2007
THE PEOPLE DESERVE TO HEAR RON PAUL'S MESSAGE

December 28, 2007 10:39 pm EST

ARLINGTON, VIRGINIA – According to the New Hampshire State Republican Party and an Associated Press report, Republican presidential candidate and Texas Congressman Ron Paul will be excluded from an upcoming forum of Republican candidates to be broadcast by Fox News on January 6, 2008.

“Given Ron Paul’s support in New Hampshire and his recent historic fundraising success, it is outrageous that Dr. Paul would be excluded,” said Ron Paul 2008 campaign chairman Kent Snyder. “Dr. Paul has consistently polled higher in New Hampshire than some of the other candidates who have been invited.”

Snyder continued, “Paul supporters should know that we are continuing to make inquiries with Fox News as to why they have apparently excluded Dr. Paul from this event.”
Friday, December 28, 2007
Seems there is no need to worry quite yet according to the specialists. The hematologist and GI doc want the blood work redone before we see them.
Will update after we do the blood work again.
I do not want to turn my families blog into a political forum BUT this upcoming presidential campaign is weighing heavily on my mind.
1st off Judicial Watch just released its list of Washington’s “Ten Most Wanted Corrupt Politicians” for 2007...and who is on it do you ask...
4 of America's Choices for Presidential Candidacy

1. Senator Hillary Rodham Clinton (D-NY): In addition to her long and sordid ethics record, Senator Hillary Clinton took a lot of heat in 2007 – and rightly so – for blocking the release her official White House records. Many suspect these records contain a treasure trove of information related to her role in a number of serious Clinton-era scandals. Moreover, in March 2007, Judicial Watch filed an ethics complaint against Senator Clinton for filing false financial disclosure forms with the U.S. Senate (again). And Hillary’s top campaign contributor, Norman Hsu, was exposed as a felon and a fugitive from justice in 2007. Hsu pleaded guilt to one count of grand theft for defrauding investors as part of a multi-million dollar Ponzi scheme.

2.Former New York Mayor Rudy Giuliani (R-NY): Giuliani came under fire in late 2007 after it was discovered the former New York mayor’s office “billed obscure city agencies for tens of thousands of dollars in security expenses amassed during the time when he was beginning an extramarital relationship with future wife Judith Nathan in the Hamptons…” ABC News also reported that Giuliani provided Nathan with a police vehicle and a city driver at taxpayer expense. All of this news came on the heels of the federal indictment on corruption charges of Giuliani’s former Police Chief and business partner Bernard Kerik, who pleaded guilty in 2006 to accepting a $165,000 bribe in the form of renovations to his Bronx apartment from a construction company attempting to land city contracts.

3. Governor Mike Huckabee (R-AR): Governor Huckabee enjoyed a meteoric rise in the polls in December 2007, which prompted a more thorough review of his ethics record. According to The Associated Press: “[Huckabee’s] career has also been colored by 14 ethics complaints and a volley of questions about his integrity, ranging from his management of campaign cash to his use of a nonprofit organization to subsidize his income to his destruction of state computer files on his way out of the governor’s office.” And what was Governor Huckabee’s response to these ethics allegations? Rather than cooperating with investigators, Huckabee sued the state ethics commission twice and attempted to shut the ethics process down.

4. Senator Barack Obama (D-IL): A “Dishonorable Mention” last year, Senator Obama moves onto the “ten most wanted” list in 2007. In 2006, it was discovered that Obama was involved in a suspicious real estate deal with an indicted political fundraiser, Antoin “Tony” Rezko. In 2007, more reports surfaced of deeper and suspicious business and political connections It was reported that just two months after he joined the Senate, Obama purchased $50,000 worth of stock in speculative companies whose major investors were his biggest campaign contributors. One of the companies was a biotech concern that benefited from legislation Obama pushed just two weeks after the senator purchased $5,000 of the company’s shares. Obama was also nabbed conducting campaign business in his Senate office, a violation of federal law.

Our government is corrupt and speaking the truth about it only seems to get you a label of "nut case"...why is this?
Washington is owned by the Corporate Media and all the candidates we have to choose from are in there pockets....The ONLY real choice to be "FREE" is to vote Ron Paul. We all need to vote in these Primaries...we can make a difference. Ron Paul has raised more money in 1 day than any other candidate in history and NONE of it was from corporate America....just people fed up with the BS of bureaucracy like me.
Wednesday, December 19, 2007
WORDLESS WEDNESDAY
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no real updates yet. I talked to the ped today and he was still trying to get the doctors on the phone. I called and left a message with the head of the Trisomy 21 program at CHOP. I think a few people on here see her (Dr. Mary Pipan) to see if she could give my ped a little guidance.

My ped had messages in with a hemotologist, a GI and a cardiologist. Hopefully we will hear something today.

I am trying not to worry until there is something to worry about but you all know how hard that is when you are a mom. Megan is fine and seems healthy as a horse so that is reassuring...she ate her morning sausage as usual LOL
Monday, December 17, 2007
This morning I got a call from our Ped w/ Megan's blood work results.
Seems her hemoglobin is high and she is producing too many red blood cells. The ped then said that we need to go see a Cardiologist because he thinks she may have a murmur although he has never heard one....HUH? This ever happen to anyone else? What does this all mean. He said her heart is compensating for something and that is why she is producing so many red blood cells. Any info you could give me would be great.

Also, her Celiac test came back elevated for the antibody so now we have to go to a GI doc. Anyone with experience in this area please let me know.

Megan is very healthy. She has never had heart surgery and no problems were ever indicated to us until today. She also has given me no indication of a Celiac problem. Although her bowels are not regular but was told this is common in DS.

The doc is calling me back before Thursday to let me know what the other doctors say....he said he was going to call them and see what they thought and try to get us in for an emergency appointment.
Friday, December 14, 2007
I had to take a picture of my door for all to see how wonderful it is to have your house adorned with real life angels. This is my favorite part of Christmas when I get to open up these beautiful Christmas Cards. Today I got a total of 12 Christmas Cards in the mail and it put the biggest smile on my face.

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This post is also going to serve another purpose. My friend Melissa over at Banana Migraine is doing a Holiday Traditions Festival so bloggers can show off their Christmas decorations. So below please enjoy my sad Christmas tree (we bought it at the end of last year and didn't see it on display but we only paid $15 for it at Lowes) and my Manger (we do not put baby Jesus there until late Christmas Eve, my Mantel w/ every Christmas w/ Santa pictures and my new wreath Megan made me at school. Decorating the mantel is my favorite every year. I love hanging the stockings and remembering each Christmas by looking at how my kids have grown from Christmas past.
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And this is our outside decorations
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Thursday, December 13, 2007
So Monday Joe took Megan to get her blood work done since he had to go get his for his Colonoscopy. He said the people there were nasty. They were yelling at him to hold Megan down and just not doing a good job. They gave up and said oh well hope we got enough.
Well no they didn't. I got a call today saying I need to take her back in tomorrow.
The lady was very nice but this sucks for Megan and is holding up the results.
I will let you all know how it turns out tomorrow.
Wednesday, December 12, 2007
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So today at dance class it was parent visitation day. All the parents got to go into class and video and take pictures. Megan was SO BAD! Not her usual self. She was all over the place, licking the mirrors, pushing kids around, walking up to people's cameras and sticking her tongue out and putting her fingers in her ears (we call it the nanny nanny boo boo face) and not doing any of the dance moves. I was crying inside wishing for the bad behavior to stop. I had to walk out of the room to try and get her to cooperate.
After class, the aide took the kids out to the waiting room and the teacher spoke to the parents. She said:
"is there any questions regarding the class or the recital coming up in May? No....ok, well today as you can see was not our usual class. Megan was pushing and disruptive but I promise you all she has never been like this before, she usually is very good, I think having all the parents in made her a little excitable. All your kids have bad days now and then and today was obviously Megan's"
I was so very thankful that she said something. I know she loves Megan.
I don't want the other parents to think this is how she usually is....I always get such good reports from the teacher after class and today has just made me sick to my stomach. I just keep thinking that all the parents are probably saying things about Megan and it is killing me.
What got into her today?
It seems whenever the routine gets changed a little she acts up?
I have never been so embarrassed I just kept putting my face in my hands....and I kept giving her dirty looks to stop (sometimes that helps).
Too be honest I think it is me. I am the only person she acts up with...I am at a loss and so very upset. It just made me picture how the recital is going to be.
Sunday, December 9, 2007
Yesterday was a great day! We got to meet our local down syndrome group for our annual Christmas party. The girls had a blast and looked beautiful in their dresses. They had a band playing Christmas music and then Santa came in and had all the kids sit on his lap. Can you believe I got all 3 kids to sit with Santa with no tears? I was in shock...but it happened. When Santa 1st walked in Megan ran screaming to me as fast as lightening so I am not really sure why she changed her mind. Maybe it was the present he was giving all the kids. Anyway, it was a blast and I wanted to say a BIG THANK YOU to Mariah and Diana for doing a wonderful job of putting it all together!
I was gonna get the walk-in kitchen for the girls but I didn't want it sitting in the middle of the playroom taking up a bunch of room. I wanted something to push up against the wall, so after seeing very small kitchens I didn't like too much I ordered this:
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I am so excited for them to see it and play! Christmas is not to far away!
15 days and counting!!!!

What BIG gift did you buy for your little ones?
Wednesday, December 5, 2007
1st can you say a prayer for my husbands mom. Her nursing home is closing after the holidays and so we have been looking for another home for her. We thought we found one but they just called to tell us that our mothers health is deteriorating quickly and she will need extra nursing care so they cannot except her. She is only 59 years old but has had a history of mental health issues which lead to her health issues today (diabetes, stroke, high blood pressure, morbid obesity). It is very hard to find a place for her since she does not have much money left.
My MIL is fed up with life and is giving up. I know I pray for that little bit of herself inside that cannot come out and enjoy life, her family and herself. I know it is praying for a miracle but her life has just been so sad.

2nd, my Pop Pop. He is old and his health is deteriorating as well. He has been in pain for some time now and it has prevented him from traveling from FL to PA. I hugged him in August and almost knew it was the last time. Please pray for him to not have pain and to get through this so I and my children have more time with him.

3rd for all the kids in the world who are suffering may it be here in the US or abroad in those institutions. It is not fair and it breaks my heart to read about it and see it. Kate at Ramblings of an Interrupted Mom is having to watch her son Jake go through this now. Please pray that Jake goes in peace and with out pain.

Too much right now before Christmas. Prayers are so important.
Monday, December 3, 2007
David-Thank you for your email.
I hate to even have to respond to this but all we know as parents regarding this situation is that our kids did not get even playing time on the Front Court (regardless of deeper rooted issues). I would hate for this point to be overlooked with the excitement of reinstating Brian as coach and have everything that coach Rushing fought for to be ignored.
I can pretty much answer for all that we are ECSTATIC to have Brian back, but at what expense?
Is the schedule being changed? I did offer to help sit down and figure out the logistics of it all but have not gotten a response. As far as we know all 5/6 coaches agreed to make court time even.
Here is an email we just got regarding the situation. I am not sure how to feel.
I am glad we have him back but not sure at what expense? Do we have a right to question WHY the board reacted the way they did?


Parents,

Brian R will continue to be the coach for your son’s 5th and 6th grade basketball team.

On Saturday you may have observed the fall-out of an issue deeper rooted than the number of games played on a particular basketball court, which would be typically handled by the coach and the division commissioner.

The unfortunate part of the incident was that the kids and you were involved at all at any level of involvement. I think it is safe to say that both PRBL and Brian apologize for having played out their differences in front of you and your children. I also think it is also safe to say that neither PRBL nor Brian will again permit this to occur.

We all remain committed to making sure your kids have the best possible experience during the basketball season with PRBL and its coaches.

Please let me know if you have any questions or comments.


David K
Sunday, December 2, 2007
Megan had her 4 year check up on Friday. She got 3 shots while she was there. Her MMR, Flu and chicken pox vaccine. She was such a champ. I think she gave the tears for a lollipop.
Now get this...my girl has grown 2 inches this past year. I am not sure if I was watching the same girl grow cause I was worried she wasn't doing it.
She is now 35 inches tall and 34 lbs....WOW HUH?
She is getting sooo big. And she has been doing really well lately with keeping her glasses on.
We go this week to get the blood work done. She will have her thyroid checked, her blood cell count done and also get the Celiac test. Will update once again when I get those results.
Saturday, December 1, 2007

So you will not believe this crap. My son Joey is in a basketball league through our school district. We got the BEST coach. I came home after our 1st practice to tell Joe how motivating and awesome he was. I felt like he really cared about the boys learning the game. He gave them each a binder with all their plays in it so that they could study them. WOW Right?

Well, he sent out an email regarding our game schedule. There are 2 courts that 5th/6th play on..."The Front Court" and "The Back Court"...seems that the court time was not dispersed evenly. Check this out:


FrontBackTotal
Team 1549
Team 2549
Team 3459
Team 4909
Team 5549
Team 6549
Team 7639
Team 8639
Team 9549
Team 10549
Team 11459
Team 12549
Team 13459
Team 14279
Team 15549
Team 16459
Team 17729
Team 18459

Our team is Team 14....meaning we get 2 games on the front court. The front court is the good court. It has bleachers, a bench for the team, a score board and the back court has no space for the team to sit or the parents and is very uncomfortable and it is hard to bring the little kids. So you want to have your games on the Front Court. Check out Team 4. They have every single game on the Front court. They will not ever have to suffer through the pain of the back court....hmmmmm how did this happen?

Must have been an oversight...most the other teams are evenly dispersed between both gyms.

Well Joey's coach sent an email to the board of the league questioning this. (Team #4's coach is on the board) The response to Joey's coach was "please hand in your resignation"....WHAT....they can't be serious.

Joey's coach told us at practice what was going on and we were all shocked. The coach told us he had no plans of resigning or any reason to do so. So we thought it was the end.

NOPE! Today the cops were at the gym to keep our coach out! It was insane. A parent got a citation for calling the Team 4 coach the A-word and our coach was officially banned. So a double whammy to Team 14, no justice here but our team will not stop until this wrong is righted even if we have to strike the league.

Any ideas?

Friday, November 30, 2007
Today I just ordered the Creative Zen MP3 player for my BIL.
List Price- $249
Saved- $150
Price- $99.99

link to MP3 player
PLUS I saved $10 by checking out with google.
So A GREAT deal!
Thursday, November 29, 2007
It has only been about a month since I started reading over at The Zoromski Chronicles. They have a beautiful family and a little peanut with Down Syndrome....so how could I resist checking them out now and again. Well I am writing this here so you can all follow the link to read about there oldest daughter Karly. Today the family found out Karly has a rare ovarian cancer called small cell ovarian carcinoma. They have a tough road ahead of them and they need all the prayers they can get. Michelle, the mom is such a strong brave person dealing with a lot right now. Not to mention Karly had a seizure this morning and has been in the hospital. Please pray and also leave Michelle a message telling her you are praying. There is something about worldwide pray that helps soothe the soul and give you a feeling of comfort.
Thank you.
Wednesday, November 28, 2007
I am trying to teach our last name to the girls so that when someone asks "what is your last name" they respond correctly. It is definitely a work in progress. I have a fear of Megan wondering away and never coming back. She literally would not care. I know that sounds terrible but it is the truth. It scares me to death. She would go up the scariest guy in a room and hold his hand and cuddle on his shoulder (I would like to think I am special but I am not). So here is a video of the 2nd day....I will update in a few weeks to see if we made any progress.

For now enjoy how they ignore me:
View this montage created at One True Media
My Montage 11/28/07
Saturday, November 24, 2007
So I was in line at Toys R Us by 2:30 am....I was about 12th in line when I got there but as time passed it turned to more like 20th as people were holding spots.
My friends Jamie and Jen were with me and we plotted our route. I went to video games and got them all. Jamie went one way and Jen the other. After I checked out at videos I met them in the check out line where in total it took us 25 minutes to get in and out. We packed our car and headed to JCPenney since Target didn't open until 6am.
After JCPenney we went to the Disney Store since we were in the mall, I got a ton there for the girls. They had a GREAT sale. After that we headed to Target where it was a mad house. Lines wrapped around the entire store, it was crazy. I shopped while Jen and Jamie waited in line. Target seems to have a great strategy. They seemed to have a ton of stuff on sale but I only found 1 of them. I probably paid full price for most of the stuff I got. We headed back to the Mall to Sears where Jamie was able to finish up. Then we hit Linens-N-Things....I got a few things and was able to save 20% on all my items. You would think we would be done but from there we had a 20% off coupon for IHop so we went to breakfast and talked about how much money we all spent. The food tasted so good after being in the cold all morning long and seeing the sun rise after not seeing it in a whole year.
After breakfast we went to BJ's but they did not have any sales so the parking lot was empty. This is where we all lost a lot of steam and all could have laid down in the bedding isle and taken a nap. We split from there. I went to Kohl's on my way home while Jamie and Jen went to 2 Famous Footwear Stores and Walmart.
So I totaled a full 10 hour day of Black Friday Shopping. I spent $585 dollars and saved $230. It is just 1 crazy day but me and my girls have a blast...we see it as a sport. But believe me I will be watching ad's and bringing things back it I spent too much and they have a better sale later. Don't mess with the BFW's (black Friday Whores...inside joke)
I am almost all done now so it was worth it. I hope everyone else who went out was successful too.
Tuesday, November 20, 2007
Do any of you have a recipe you use every year for Thanksgiving. If so please share.
Here is my favorite. I promise they are terrific.

Cranberry Nut Bread...yumm yumm delicious!!!

Makes 2 loaves or tons of muffins

Sift 4 cups of flour
1 teaspoon of salt
3 teaspoons of baking powder
1 teaspoon of baking soda
2 cups of sugar

In a large bowl beat 2 eggs
1 cup of orange juice
4 tablespoons of hot water
4 tablespoons of butter
and add dry ingredients above to bowl
Add 2 cups of cranberries (cut in half or use food processor)
optional: rind from an orange or lemon
nuts...I use walnuts crushed
pour into greased loaf pans
or you can make into muffins...I use my stone wear

Bake @ 325 for 70 minutes

Shh! My grandmom would kill me if she knew I shared this!
Monday, November 19, 2007
Megan's birthday party was this past weekend and our friends over at Life with Bubba and Chicky came to share in the fun.
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We had 2 parties for my special peanut. The first was at the NAC. It was a caterpillar obstacle course party with all her little friends.
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Then we had family and friends back at our house for an amazing feast that my mom and dad took care of. We had roast pork, manacotti, ceasar salad, meatballs, pasta w/ broccoli....and it was soooooo GOOOOOOOD! Thanks Mom! (she reads here now and again). Then we also had a magician come because Megan loves magic...although it did not keep her attention...the magician lost the crowd part way through but ended strong with his live rabbit.
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I so wish I had my daughter Olivia's reaction on video because it was priceless and would probably have won AFV's funniest video's. She stood there screaming and pointing at the rabbit while shaking and then covering her mouth...not a reaction most 2 year olds have but one who loves rabbit's ohhhhh yesssss! It was an amazing weekend and now we have a pile of presents to find space for. My Megan is loved by so many. Thank you all who came and celebrated. We love you all!
Here are the pictures of her birthday cakes:
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Thursday, November 15, 2007
Megan seems to have a ghost! It shows up in pictures in different forms. I know this sounds unreal and bizarre but it is true. I know Leah will believe me!
Here are links to pictures. I don't want to shrink the picture so you can see the full image. It is a terrible picture but over Megan's right shoulder is a shadow of something, a treasure chest or something? Not sure what it is but it is not a structure in that room. I do have other pictures that I will share later. I just wanted to post these to get an opinion from others out there.
Picture 1

Here it is again in a close up
Picture 2


EDITED TO ADD:
ok, here are some from the beach. It seems in theses pictures that everything is clear except around Megan's head.
Picture 3

Picture 4

Picture 5

Picture 6
We got her 1st school pictures back yesterday. Although Megan is cute no matter what...I am not so sure I like the picture. Her hair wasn't fixed (the back was all curly) and I paid extra for air brushing cause she had a scratch on her nose but it is still there. UGH!
What do you guys think? It is a picture of a picture so there was a glare...not the clearest.

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Monday, November 12, 2007
since being diagnosed back in July happened last night. So we pulled out the emergency inhaler....the Flovent! And my goodness, it worked miracles. For the first time since Megan started with her breathing problems we have always had to rush to the ER for a breathing treatment and steroid shot to clam her down....not last night! We did it on our own and she slept!
So for all those out there who deal with the breathing, croup, wheezing issues, it will get better once you get that diagnosis of Asthma because the Pulminologist will make sure you have a Flovent for emergencies. I really believe since we have been treating Megan everyday with the albuterol inhaler that that is the reason she hasn't presented until last night. 4 months and this is the 1st time, before that we dealt with the ER runs once or twice a month.
So although Megan is feeling under the weather she will not be going to the ER anytime soon.
Friday, November 9, 2007
Today is my 6th Wedding Anniversary and my 13th Year with my husband.
I could not be happier right now. My husband IS the best husband in the world and best father.
To think 13 years ago we both sat in Chemistry class not knowing where we would be today. YES, we met in Chemistry! How ironic!
We were both juniors in HS and I thought he was so cute and funny. We met at a party one night and we flirted but I am very shy and very hard to get to know...so Joe handed me this heart, it was a weight for the bottom of balloons....I kept that heart in my book bag and one day after school he followed me to my car and tried to flirt with me by saying "your cheeks are the color of the heart I gave you"...my jaw dropped and I was like excuse me..."he said pink, your cheeks are pink"...I said "um, the heart you gave me was green"....he said "no it wasn't" then I pulled it out of my book bag and his jaw dropped and I walked away! Who would have thought that I would marry and be in such LOVE with a man who insults me ;)
Joey loves that story and always asks us to tell him it and he always LAUGHS...I hope at least he will learn from the story and not make the same mistake.

I LOVE YOU JOE!!!!!
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Wednesday, November 7, 2007
She is 4 today. Enjoy the video.

View this montage created at One True Media
Happy Birthday Megan
I seem to call them now at least once or twice a year it seems. Does anyone remember my Verizon story?
Well today I had to call again. This is what happened...
Me and the girls were waiting for Megan's bus. The girls like to play in the car and so when the bus pulled in the drive way I hooked Olivia into her seat and closed her door. I put Megan on her bus and waved goodbye. I reached over the passenger seat and started the car....I shut the passenger door and walked around to the driver side to get in....LOCKED! My poor Olivia is strapped into her car seat and the doors are locked...YEAH, they must have locked the doors while playing with out me noticing. So I panic and call Joe on my cell phone....I ask him to try On Star and see if they can unlock it....ya know all those commercials about how great they are...NO, they can't do it unless you push the blue button...HUH! So I am coaxing Olivia out of her car seat and Joe starts driving the hour home from his work. So I dial 911 cause that is WAY TOO long and we were suppose to meet Victoria and Jamie for her birthday lunch. I call Jamie to tell her we will not be there and so she drives to my house to try and help.
Olivia was able to get her arms out but still could not reach the button, she even took her shoes off and threw them at the button to open the sliding door.
About 20 minutes in the police man or knight in shining armor as I now refer to him pulls in and rescues my girl from the car. Oh how happy she was....NOT REALLY, she was fine and was sucking her binky watching Caillou the whole time, I think me and Jamie coaxing her out of her seat were just an annoyance.LOL
Let's just say I am feeling pretty crappy right now for doing this.
Wednesday, October 31, 2007
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My wife asked me to write something for her blog so here it goes. She said I should write about my “feelings” and about our daughter Megan and/or Down Syndrome. I don’t know why she wants to know about my feelings. I think my feelings are not that interesting and most of the time I suppress my feelings so deep I don’t even know what I am feeling. For example, when my mom had her last stroke, when my aunt was diagnosed with breast cancer, when Megan went to get tested for some disorder, I always feel nothing. I have a tendency to “know” everything will be OK. I think I have some kind of internal defense mechanism that hides my worries, fears, etc. from surfacing, which works out good because my wife seems to be always worried about something.
My “feelings” about Megan are the same as they are for all my kids. I love my kids and my wife and I feel lucky everyday that I have the family I do. My “feelings” about Down Syndrome are more complicated. As Megan grows up I feel more and more that Down Syndrome is no more then something that Megan has just like she has blond hair and blue eyes. I expect Megan to show people that she can do things they don’t expect. I hate when people say she won’t get married or won’t go to college. I tell everyone she is going to be a famous astrophysicist who will win a Nobel Prize for discovering worm-holes that allow for trans-galactic travel. There are things I hate about DS, mostly the way it effects my wife. I hate that my wife spend so much time thinking about it. She is worried about people’s prejudices against Megan. She worries about heart problems that she never got. She worries about leukemia, autism, so many things I could never come up with them all.
So that’s how I feel. I am having a hard time surfacing my feelings and just as hard of a time articulating them. Bye, Bye.
For 4 years I have dove into the internet world of down syndrome and my DH has been silent....but tonight, the last night of 31 for 21 he is going to work on something to post....so come back late tonight for "A Letter from Daddy" and to see pictures of Halloween!
Tuesday, October 30, 2007
1.When Megan laughs she squints so small you can’t see the whites of her eyes. She scrunches her nose and her tongue sticks out. It is the cutest thing imaginable.

2.Megan has denim colored eyes and on a gloomy foggy day they are always what stand out most. She has the most beautiful eyes and very prominent brushfield spots.

3.Megan’s hair is so smooth and silky and beautiful, she has the hair I always wanted. During the winter months it turns shades of brown and in the summer months she looks like a beach bum blonde.

4.Megan asks for a drink by making a hard “k” sound and signing milk. She has also passed this on to her sister and she asks for a drink the same way. Good thing I am always around otherwise they would go thirsty because nobody would have a clue what they were doing or saying.

5.When Megan is tired she talks non-stop, I call her jabber jaws. She will tell you she wants fwench fwies and chitcken and wants to watch Dora and Caillou. She loves to cuddle while she does this.

6.Megan loves to read, when she is ready her butt will back right up and plop in your lap, we always say she needs a beeper on that thing…she will start by looking up at you and saying “ready”…she loves to turn the page and say the last word on every page. She always closes the book and says “the end”

7. Megan loves to be helpful, just the other night she swung a large glass of ice tea in Olivia’s face because she was thirsty…I said she loves being helpful yet is not very graceful and so the help is sometimes more work for me but I LOVE IT!

8. Megan absolutely loves watching her brother get on the bus every morning, if I let her she would so go with him and be ok….

9. Every day Megan gets off the bus she offers up her kisses and says “Bye Guys” to all her friends. Melts my heart daily.

10. When we are walking in to the house after getting off the bus Megan always says “where Olivia” and I tell her she is sleeping, she responds with a “no…no more sweeping” and I have to bribe her not to wake her sister. Offering Caillou usually helps me win this battle.

11. While watching TV Megan always stands at attention with her hands behind her back…in her pants. As much as I try and correct this behavior she continues to do it.

12. I put on Megan’s sure steps and shoes about 50 times a day. She will ALWAYS remove them as soon as you are not looking. She also has her sister helping her out every once and awhile as I usually catch them in the act while Megan is removing her right shoe, Olivia is always working on the left….however Olivia always seems to keep hers on.

13. Megan is a petite eater, she is very careful and takes her time. She will always be the last one done and will eat whatever you left on your plate. She does not discriminate when it comes to food. Some of her favorite foods are squash, cucumbers, broccoli, green beans and of course chicken and French fries.

14. Megan loves to talk on the phone and can have a conversation with anyone. We love to let her practice her answering abilities when a solicitor is calling.

15. Megan has the ability to make anyone fall in love with her. She has done this many of times and at Joey’s baseball games she always has a line of boys waiting for her attention.

16. Megan loves watching sports and all the people playing are Joey….so when we are watching the Eagles play Megan is always yelling “YAY Joey!”

17. Megan loves the bath, you are not aloud to wash her hair though, only she is aloud to do that, she will yell at you if you touch her while she is in her tub, she is in charge and will wash herself.

18. Megan is very stubborn, she wants things done her way and will do a strong arm cross and a yell if it is done any other way.

19. Megan is very good with direction, if you pull out of the driveway in a different direction then Nana and Pop Pop’s house she will scream her disapproval. If you do turn the right way you will get a loud “YAY” and clap but if you pass Nana and Pop Pop’s she will cry and you just might have to pull in so she can say hello…if your not in a hurry.

20. Megan loves music and loves to dance. She has a fantastic wiggle….it is infectious but cannot be imitated as she is one of a kind.

21. Megan loves with all her heart, she will hug and kiss those she loves and has a hard time saying goodbye, if you yell at her or correct her she will pout and her lip will go out and you will have to forgive her right away because you can never stay mad at her, just this morning I had to yell at her to stop taking off her clothes but in the same breathe I hugged her for mastering the task. She must be 1 confused little girl.
Monday, October 29, 2007
So Joey wants to be a refrigerator for Halloween! YAY!!!!! A project for the whole family! Did you know plumbers crack was required for this? If I could I would take a picture to share (LOL)....It is 9:30 pm on a Monday night and we are still working on it....I took a break to put the kids to bed...and to think we thought it was such a good idea to make a costume instead of buy one....I think our time cost us way more....but the outcome will be GREAT and I cannot wait to share it with you all on Wednesday.
In the meantime I am going to try and work on my 21 things about Megan before the month ends....I owe her that considering I did not keep up with blogging every day this month.
Sunday, October 28, 2007
If 31 for 21 was a job, I so would have been fired. I am such a disgrace. LOL
My post tonight is for all you mom's and dad's out there with a child with Down Syndrome. This post is not to stir up controversy or to start an argument with anyone. I just truly want to know your honest answer.

If there were a pill to take away the extra chromosome so that your child would no longer have down syndrome would you do it?

My answer to my own question is emphatically NO. I would not...and that is the honest truth. I know this question in some ways is not fair because it just could never happen. There is just no way to "cure" down syndrome, no way to take away that extra genetic material in every cell. There are however advances in research by the DSRTF for cognitive enhancements that will be available in our lifetime (which I am not opposed to). But my answer is in response to the extra chromosome....the one that gives my daughter chubby little fingers, a sandal gap toe, slanted eyes, a button nose, brushfield spots in her eyes, her cute little way of saying fwen fwhys and chitken (french fries and chicken)...how could I ever give that up....Days go by and I do get frustrated with her abilities not being par but I love her anyway...I am no where near the best at anything and that is ok, I am happy with my life...and to be successful or to make an impact in life isn't about meeting milestones and IQ markers. We remember people for their accomplishments big and small and we haven't a clue when they walked or talked for the first time.
I would cure society before I ever touched a hair on my daughters head.
The only reason anyone would want to take the Down Syndrome away is because of how harsh society is to our children...so why not, if you have a choice, change everyone else first? I would....I would rather cure the ignorance and hateful attitudes of others. My child is happy with who she is and the down syndrome does not bother her.
I would never give her a magic pill that will never exist anyway.

I know, it is such silly question to ask but just curious who out there would actually cure their child. I know we all want what is best and in no way is your answer to this meaning you love your child any less.
Thursday, October 25, 2007
I am posting on something other than my kids I "kid" you not.

So did you hear about the cook book written by Jerry Seinfeld's wife? Supposedly there is a very close proximity in recipes of her book and another cook book, "The Sneaky Chef" by Missy Chase Lapine. There is buzz going on throughout the internet.....Here is a write up on Yahoo all about it.

So seems to me that the publisher knew the Seinfeld name would bring in big bucks and ignored the similarities...how could that be, that is just wrong and is not a coincidence to me!
Tuesday, October 23, 2007
So I wanted to ask others out there if this happened to them.
Before Megan was born I had a good career. I was motivated to do well and succeed.
I tried to learn as much as I could about the company I worked for, put in extra hours so someone would notice and was just an overachiever.
But ever since I had Megan I have seemed to lose my will-power and desire to succeed.
I noticed it at work that I would be browsing the internet and every thought would be on down syndrome and not my work.
I feel like down syndrome consumes my conversations.
When I am at home with the kids I still think about it.
I feel like my life has become so obsessed with the "down syndrome" that my mind cannot focus on other things? Does this make sense at all?
Is it possible that I try to convince myself so much that I am ok with the down syndrome that it makes me depressed?
I never thought I could be depressed but I feel like my symptoms might lead me to that.
Megan is going to be 4 in a few weeks. I just feel very overwhelmed by that....4 seems so old and I just feel like she is no where near being a 4 year old, she is small and non-verbal at times.....and her sister is already doing more than her.
Please tell me I am not the only person to feel like they have lost will power.
Sunday, October 21, 2007
So we were lucky enough to meet some friends at the pumpkin patch today and I think we got a lot of people starring in a good way, look at how cute our company was:

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Saturday, October 20, 2007
I am not sure what to blog about tonight. I am very sleepy after a long day.
Joey had baseball this morning basketball tonight, Joe had a beer festival and I had the girls.
While we were at my friends house Olivia was not paying attention and walked into the tail gate of a truck leaving a HUGE knot on her forehead. I contemplated taking her to the ER but she recovered relatively quickly with an ice pop. Olivia seems prone to accidents. I am pretty sure she took 15 years off my life today. She stayed awake till 8pm and acted normal.
Megan is so easy going. My friends daughter has a Barbie jeep and Megan took turns so nicely while Olivia would not give up her seat. Sometimes I could just kiss Megan all over her face when she acts that way...she truly makes my life easier.
The past 2 days I started x-mas shopping....it just seemed so close and I felt like I needed to get the kids things before the rush started.
So I got Joey the new Monopoly fast cash, brain age for DS, Pitching net and rubber pitching mound.
For the girls I got them these cute twin babies that play patty cake, I got them a cute table and chair set and my little ponies....
Getting that out of the way just makes me feel accomplished.
Now I need to budget and make a list....I do need to be more organized.

So that is the end of my "all over the place" rant. Shhhhhh, don't tell the kids what I bought....
Friday, October 19, 2007
Megan is learning about people in school.
So we decided to do a project this morning to bring her schoolwork home.
We put wrapping paper on her bedroom door, flipped through magazines and cut out pictures and then taped them to the wrapping paper.
Here is our finished project.
The pictures are of:
girl v. boy
lady v. man
family
kids v. grown-ups
baby v. babies

We find that she learns much better if we are doing at home what they are working on in school. And the other bonus is that Olivia has it all down too!

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Thursday, October 18, 2007
We took the kids to the pumpkin patch on Sunday and had a great time picking out pumpkins....my kids are getting so big...see our fun below:
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