RYLIE

My TV appearance in NYC WITH THE WONDERFUL Kim Adams from Gifts From The Heart For Downs

2011-11-09T04:38:00.000-08:00

http://abclocal.go.com/wabc/video?id=8397648

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First day of 2nd grade.

2011-09-15T04:22:00.001-07:00

Billy Gardell

2011-06-20T09:32:00.000-07:00

Vinnie and I went to the Keswick the other night to see Billy Gardell from "Mike and Molly" He was absolutely hilarious! We had the best time and Obviously we got to meet him after the show. He is such a nice guy!

Wordless Wednesday

2011-06-01T11:49:00.005-07:00

Gifts from the Heart for Downs...You can help!

2011-05-23T13:43:00.000-07:00

I don't post much on this blog anymore, but I know I still have readers, so I'm here to ask you for a favor.

Actually the last time I posted I told you all about Rylie's amazing night meeting Miranda Cosgrove. Rylie, along with me, Vinnie and her sisters received a limo ride, dinner at the Cheescake Factory along with meeting Miranda and great seats to her concert. This was all because of Kimberley Adams from Gifts From the Heart For Downs! She worked hard to make Rylie's wish come true and she is constantly working hard so that other people with Down syndrome can have their wishes come true.

Back to that favor......Do you have $1.00 you can spare. That is all Kimberley is asking for. If everyone reading this gives just one dollar and ask everyone they know to give a dollar, she will be able to do even more wonderful things for people w/ Down syndrome who are requesting wishes.(and if you can give even more then a dollar that would be super:)

Please head on over to Kimberley's blog and you can donate right through her chip in button. THANKS!

Meeting iCarly video

2011-02-07T17:45:00.000-08:00

Rylie's wish comes true and so much more!

2011-02-07T17:07:00.000-08:00

Yesterday was Rylie's big day! Thank you so much to Sterling Limousine, Cheesecake Factory and especially Kimberly Adams from Gifts From the Heart for Downs.

At 3:45 We were surprised with a LIMO waiting outside our house. The limo then drove us over to the Cheescake Factory for an awesome dinner. This was another fabulous surprise. Vince knew all about the limo and special dinner, but along with Kimberly they were keeping it a secret!

After dinner we went to the Keswick Theatre to meet Miranda Cosgrove and see her awesome concert! I think a lot of people at the theatre thought we were Miranda Cosgrove when we pulled up in our fancy limo! SO MUCH FUN!!!!!!!!

Rylie was so excited! She loves "iCarly". Meeting her was really a dream come true.
Miranda was so sweet and so pretty in person. She signed some autographs for us too.
The concert was fantastic and we had such great seats.

I will be forever grateful to Gift from the Heart for Down's for making my little girls dream come true. It was also super sweet that Karlie and Cesalie got to join Rylie for all the fun.

Happy 8th Birthday Rylie!

2011-01-06T04:05:00.000-08:00

Wishes do come true!

2010-12-20T15:03:00.000-08:00

IN 5,4,3,2,1
I know, you see
Somehow the world will change for me and be so wonderful..........................
Do you know what show that's from?

iCarly on Nickelodeon!!! Rylie's favorite show! Rylie is pretty much obsessed with iCarly. She knows all of her songs and never ever misses an episode. She comes home from school each day and takes off her coat and shoes , as fast as she can so she can run to her room and turn on iCarly. Vince and I are amazed at how she watches the show and laughs at all the funny parts. It's great to see how she understands and gets it! We are also happy to see how she is watching an age appropriate show and not still watching shows like "Barney"! We love watching her dance and sing along with the show! She just loves the theme song! It never gets old for her and she belts it out as loud as she can.

When I found out a few weeks back that iCarly (Miranda Cosgrove) was on concert tour and going to be at the Keswick theatre, which is practically in walking distance to us I immediately thought how much Rylie would LOVE to go see her. I had remembered Sarah posting on her blog about a neat organization called Gifts from the Heart for Downs. They grant wishes to people with Down syndrome! Soooo I went on their website and sent an email explaining how much Rylie Loved Miranda Cosgrove and how she would love to go to her concert and possibly even meet her. Kim from Gifts from the Heart for Downs called me right away! She was so excited that I contacted her and right away she started making contacts so that Rylie's wish could come true!

Head on over Gifts From the Heart For Downs for the official announcement! We are forever grateful. Kim, I can't thank you enough for making Rylie''s wish come true.

Vote!

2010-12-09T15:56:00.001-08:00

Girl Scouts and Daisies

2010-10-19T15:14:00.000-07:00

Rylie joined Daisies. Today was her very first meeting. The meetings are after school right across from her classroom. I met her there and she was already sitting in the circle with her friends eating a snack. Two little girls from her class are in Daisies with her. These little girls looooove Rylie and make such a fuss over her. They love to help her and everyone wants to sit next to her. I was just there observing. The troop leader thought Rylie would be fine next time without me having to be there. So it's all good!

Karlie also had her first Girl Scout meeting today. She loves it and is so excited about all the activities they have lined up this year.

I'm just not thrilled about all the cookies we're going to have to sell. I'm not big into fundraisers. I guess I have to get into it though, because there seems to be a lot of them in Girl Scouts and Daisies.

I'm very impressed with the whole Girl Scout organization so far!

Happy Birthday Karlie

2010-09-10T10:57:00.001-07:00

12 Years ago today I became a Mom! I'm so thankful for my beautiful daughter, the sweetest girl ever born. Love You Karlie! Happy Birthday!

Some Updated Pictures of my Girls

2010-08-31T15:02:00.000-07:00

Bethenny Frankel

2010-08-31T14:53:00.000-07:00

One day this summer I stood in a line of 1600 people to meet Bethenny Frankel. I was about number 50 in line so it wasn't bad. I only waited about 2 hours. My guilty pleasure is watching the Real Housewives! Ha Ha!

Herr's Factory

2010-08-31T14:45:00.001-07:00

The Life of A Christian

2010-06-02T07:38:00.000-07:00

This was one of the songs played at my Dad's funeral service. It sums up the life of a Christian. Beautiful.

Dad

2010-05-27T08:37:00.000-07:00

My precious Dad passed away on Monday. There are no words to describe the pain my family and I feel and there are not enough words to describe the love we had for him.
My dad had such a big presence everywhere he went. He loved people. He would talk to anyone no matter where he went. He could instantly become a friend with a complete stranger. My two brothers and I were so close to him. We know how much he loved us for he always showed it. My mom and him were a beautiful couple. They had so many wonderful years together. They had so much in common. They loved the same foods, the shore, antiques, flowers etc. My parents showed me what true love is and how to endure life's difficulties together. It is because of my dad's faith that I know the Lord today. And I know the Lord will help us through this difficult time. My dad is now in the presence of Jesus, home in heaven and we know he is at peace.

Please keep us in your prayers, my mom especially.

Well, Wadda Ya Know!

2010-05-16T17:41:00.000-07:00

Rylie had her orbital ultrasound on Thursday and now I'm more confused then ever. The ultrasound revealed that there is no fluid causing the swelling on her optic nerves. This is called Drusen or false papilldema. True Papilldema is what we've been dealing with all this time. In other words her optic nerves just have a swollen appearance because she was just born this way. It explains why the medicine has never worked to decrease the swelling. She was put through hell to be diagnosed with Pseudotumor and all along it was Drusen.

But it's still a little tricky and confusing. Why wasn't this ever detected by the ophthalmologist all these years? Well because Drusen becomes more visible to an ophthamologist as a child gets older. Maybe the medicine worked and that is why the ultrasound revealed no fluid. Doctor said that's possible, but not likely, because the optic nerves still appear swollen. Why when she had a spinal tap did it reveal a high opening pressure? Well that high number may just be Rylie's normal(because of Down syndrome). Not really convinced about that one. Drusen can still cause vision problems, but it's rare. Unlike Psuedotumor which is very vision threatening.

Rylie was taken off the medicine and will go back to the doctor in 3 months. I'm just going to pray we go back to normal now and nothing else develops. Her vision has been fine throughout this whole ordeal.

Listen Down syndrome Moms, If your ophthamologist ever looks into your kids eyes and sees swelling of the optic nerves, make sure the very first test ordered is an orbital ultrasound! Because the ophthalmologist said Drusen is very comman with kids who have Down syndrome.

I'm still confused about everything! The good news is I think I finally learned how to spell ophthalmologist. Ha!

ALSO, PLEASE CONTINUE TO PRAY FOR MY DAD. HE NEEDS MAJOR PRAYER. HE'S WAXING AND WANING. HE WILL PROBABLY NEED A FEEDING TUBE. WE NEED A MIRACLE. GOD CAN DO MIRACLES AND HE HEARS OUR PRAYERS!

Some Updates and a Prayer Request

2010-05-10T17:35:00.000-07:00

Rylie had her 4th ear tube surgery today. It went very well. We were there by 7:00 am and out by 8:00 am. Wow, that's quicker then a doctors appointment! She just bounced right up and has been running around playing all day.

On Thursday we see the Neuro-ophthalmologist again. Before that appointment she will be getting an ultrasound on her eyes. She's doing really good and not showing any symptoms of the Pseudotumor, but hopefully we'll know more on Thursday.

Two weeks ago she already had an appointment scheduled with the original ophthalmologist, so I took Rylie just because I was anxious to see if the medicine worked. There was still swelling on the optic nerves, but her vision seemed fine. If on Thursday there is still swelling, they're going to have to try a new medicine or something else. Thank God she is doing so well, or I would be going out of my mind waiting for medicine to work.

Now, I have a prayer request. My dad had a pacemaker put in about three weeks ago. The recovery has been anything but smooth. There is so much going on with him. I wouldn't even know where to begin right now trying to explain it all. Some days are better then others and today was a better one. Please pray for him! He needs healing from his head to his toes. Thank you.

2010-04-26T13:44:00.000-07:00

Michelle from Big Blueberry Eyes came up with a wonderful way to honor Carly George's life and show the George family that her Down syndrome community will never forget sweet Carly. Please go visit here to find out more info and how you can help.

You can also visit here to grab this button.

Thank you George family for sharing your sweet girl with us. We will never forget Carly and you will be in our prayers constantly.

Update

2010-04-14T18:21:00.000-07:00

Rylie is under the care of a great doctor now. She still has the swelling...it could still take weeks for the medicine to work and another test will be run. She's doing good, but it's just a waiting game as long as she is not having symptoms....more later, I'm too tired to think straight.

UPDATE

2010-04-09T17:26:00.000-07:00

I took Rylie to the Neurologist yesterday. She looked into her eyes and said that there is still pressure there, because it looked blurry. The Neurologist doesn't have the equipment to really look into the eyes like the Opthamologist does. She only used one of those lights that the pediatrician uses, so she couldn't really tell much. She recommended seeing a Neuro-opthamologist and I told her we already have an appointment scheduled with one for next week. She said great and she knows the doctor we have an appointment with. She said he is the best! So next week we'll see him. The Neurologist increased her medication dosage. Maybe by next week all the swelling will be gone. That's what I'm praying for anyway. Rylie is doing great. She is perfect on the outside, I just don't know what's going on inside. I stopped researching Pseudotumor Cerebri online because it was freaking me out. Since she is not in any pain and still isn't showing any symptoms, I'm happy with that and looking forward to seeing the Neuro-opthamologist next week.

Wishing Everyone a Blessed Easter!

2010-04-04T19:38:00.000-07:00

2010-03-25T18:16:00.000-07:00

I called the neurologist yesterday and was able to have a good talk with another neurologist in her department. She said it was Ok that the medicine hasn't worked yet after two weeks. She said to give it at least four weeks. That made me feel a little bit better. I'm keeping her appointments with the neurologist and the ophtamologist she has now, but in the mean time I called CHOP and was able to get an appointment with an actual Neuro-Opthamologist. I'm looking for a second opinion for treatment. I looked up this Neuro-Opthamologist online and found out that he is an international EXPERT on Psuedotumor Cerebri. I'm 99% sure after we see him we will switch to him permanently. What more could you ask for then an international expert.Plus it would be nice to only have to deal with one doctor.

So we will see her current Neurologist on April 8th, The EXPERT Neuro-Opthamologist on April 14th and the current Opthamologist on April 27th.

I hate all of this waiting, but there is nothing else to do but wait and see if the medicine works.

2010-03-23T16:52:00.000-07:00

There is a certain kind of pain a mother feels when they're told there is something wrong with their child or that their child is sick. It's a hurt that goes right to the heart and causes worry..extreme worry. It's not the kind of worry you have when your short on money or waiting for a call back for a job, etc. It's a worry and a hurt that goes right to the heart and causes your eyes to well up with tears every time you think. I'm afraid this is how I feel right now. We went to the opthamologist tonight and the swelling on Rylie's optic nerves hasn't gone down at all. The doctor said it looks the same as when she saw it two weeks ago. Maybe it will take a little longer for the medicine to work, or maybe they'll up her dose, or maybe we'll need a new treatment plan. The Opthamologist recommended seeing the Neurologist as soon as next week.

The thing is....Rylie is not in any pain. The problem is that she has Psuedotumor Cerebri and it can cause vision loss. Right now her vision seems to be just fine, but I don't know what effect this could eventually have on her.

All I can do is trust God and work with the doctors to get this resolved. I don't like this feeling. I feel like I'm back seven years ago and getting a Down syndrome diagnosis. I'll have to use that experience from seven years ago to remind myself everything will be fine.

HAPPY WORLD DOWN SYNDROME DAY

2010-03-21T08:59:00.000-07:00

2010-03-19T16:18:00.000-07:00

Yesterday Rylie had her MRI. This morning I called the neurologist for the results because I knew she had them according to radiology. I was getting anxious waiting for her call back, so I asked radiology to fax the results over to her pediatrician because I knew her pediatrician would get right back to me. And she did. She told me everything with her brain looked normal, but they saw fluid in her sinuses and noted that it might possibly be mastioditis. HUH? The ped told me I need to take her over to the ENT. Well Rylie was already at school and my car was in the shop, so I casually told the pediatrician I would take Rylie to the ENT next week, not realizing this could be something serious. The pediatrician told me...NO, I'm not asking you to get her over to the ENT now I'm telling you, then she told me to take a taxi if I had to. She said she might need IV antibiotics. So right away I went into panic mode! The pediatricians office made arrangements for me to see the ENT at 2:00 and that gave me some time to make arrangements. My friend Kim picked up Rylie from school and my mom was able to come up and watch Cesalie. Speaking of Cesalie, while I was in panic mode and making all these phone calls she went into Karlie's room, found a black Sharpie marker and decided to draw all over herself. She drew all over herself and because she loves cats so much, she decided to become one and drew whiskers on her face. Yeah, just what I needed.

After I finally calmed down and was waiting for my mom to come up, I went on line and googled Mastoiditis...and realized there was no way Rylie had this. Her hearing has been fine and her ears looked wonderful to me, she had no fever and has been doing great. So, after I read that I really started to calm down and wonder why the pediatrician was making such a big deal.

Meanwhile I was getting ready to get out the door and the Neurologist calls and says, Rylie's MRI was normal. I told her what the pediatrician told me about the Mastoiditis and she said anytime you do an MRI they will see some fluid in the sinuses, and she wasn't worry about it, but still go see the ENT in case.

So, we go to the ENT and the ENT said that the pediatrician overreacted. Rylie was fine. She just had a little bit of fluid in her ears and her tubes were now out. She got a hearing test and did pretty good, but we need to schedule her for ear tube surgery again.

Ok now back to the MRI. Because everything else with her brain has been ruled out that officially means she has Psuedotumor. They're not 100% percent why children get Psuedotumor, but they said it's common with Down syndrome. She is taking Diamox to deal with the Psuedotumor and the swelling on her optic nerves. Hopefully the medicine is working. We will find out when we see the Opthalmologist on Tuesday.

Besides the fact that Rylie had severe pain from her spinal tap last week, she has been fine. No nausea, vomiting or any other symptoms Psuedotumor can cause.

The pediatrician had me scared today. But thank God there was no mastioditis! I realize her ped had to take all precautions, but I think she should have consulted with an ENT and the neurologist before scaring me to death.

Update

2010-03-12T05:44:00.000-08:00

Rylie was sent to CHOP last night because she was in pain, and her pediatrician wanted them to do an MRI on her back.

While waiting in the ER her pain subsided quite a bit(ANSWERED PRAYER!!!!). The doctors checked her out and didn't feel that her pain warranted an MRI. They gave her some pain medication and sent her home. Apparently this pain in her back is normal for having had a spinal tap. It should resolve completely in a couple days.

So for now she will have an MRI for her eyes next week, and we'll go from there.

2010-03-11T19:12:00.001-08:00

Rylie is doing good right now. Prayers have been answered. Thanks everyone. I'll update when I know more.

update

2010-03-11T16:20:00.000-08:00

Doctor said Rylie's back was swollen and the pain was radiating to her front. She'
s on her way to CHOP for an MRI on her back. I would appreciate prayers.

Some stuff going on with Rylie

2010-03-11T12:07:00.000-08:00

On Tuesday Vince took Rylie to her annual eye exam. She sees the eye doctor each year for her Optic Nerve Hypoplasia and astigmatism. Right away the doctor notice that her optic nerves were swollen. That is very serious and she was sent right to the emergency room.

When we arrived at St. Chris's she had blood work which was normal and a catscan which was also normal. They wanted to send us to CHOP, but CHOP wanted St. Chris's to finish up with all of the neurological test before they sent her.

They gave her a spinal tap( that was a horrific experience for Rylie) Her levels were elevated. They then admitted her to St Chris's with an MRI ordered for the next day.

The next day we were told the MRI machine was broken. They wanted to transfer her to CHOP for an MRI, but CHOP was too backed up.

In the mean time she was seen by a neurologist.

All the doctors seem to agree that she has Pseudotumor Cerebri. They put her on medicine to treat it for the time being and discharged her. She is scheduled for an MRI next week at Abington hospital. The whole not being able to get an MRI thing was an ordeal!!! I called Abington myself to see if they did pediatric MRI's.

Today she is refusing to walk and seems to be pain. I'm worried that this might be from the spinal tap. She keeps saying her belly hurts(like it's sore or something). She seems fine otherwise. She is eating alittle and drinking and playing on the couch, she screams though when I make her get up to walk. I called the pediatrician and they said to bring her in. Vince is taking her over there right now as I write this. I'm also wondering if she might have a UTI, because she hasn't gone potty all day. Maybe that is why she is in pain???

I'll update later.

Crayola Factory

2010-02-23T07:11:00.000-08:00

This past weekend we went to the Crayola Factory in Easton PA. The kids had a great time! Here are a few pics!

Father/Daughter Dance

2010-02-22T07:04:00.001-08:00

Family Guy, Palin, the R word etc...............

2010-02-18T17:42:00.000-08:00

I am offended when someone assumes my daughter can't succeed in life. I am offended when I hear someone aborted their baby because of Down syndrome. I am offended when someone thinks my daughter would be better off in Special Ed instead of a regular classroom. I am offended when someone states that it is immoral to give birth knowingly to a baby with Down syndrome. These are the things that offend me.

If someone went up to Rylie and called her a retard. I would be offended. I would probably knock that person out. LOL! And yes, I cringe when I hear the word. But, It's not a battle I choose to fight every time I hear it used on television or in the movies. I'm not going to fight to ban the word retard the way I'll fight for inclusion and educating people not to have an abortion. If given a chance I might educate someone who is truly ignorant about the word. But it's just not a passion of mine to end the word.

I'm really surprised how many people where so offended by the Family Guy episode. A girl with Down syndrome on the show said her mother was the former Governor of Alaska. That was funny and that mother of hers raised her to be an intelligent and feisty woman. I actually like Sarah Palin. She's not the official spokesperson for Down syndrome. Yes, she is one of the most well known parents of a child with Down syndrome, but she is also so new to this... still. When Rylie was first born I didn't know anything about Down syndrome. I had know clue how to advocate. Do you know how many doctors, therapist and people in general said things that hurt me back then? I didn't have any witty sarcastic remarks to throw back at them. If you don't agree with Sarah Palin's political views, that's fine, but people should not get so caught up on her every word when it comes to Down syndrome. I thought the whole Emanuel/ Limbaugh thing was odd. Yeah, she blew it, but I have to give her some lead way. When Rylie was first born I was very conflicted and I'm sure I contradicted myself more then once.

My Opinion on the Family Guy episode

2010-02-16T09:40:00.000-08:00

I'm not a fan of the show at all BUT, I thought it was great! They portrayed a person with Down syndrome in a regular high school setting, getting dressed up nicely and going on a date. Then they made it clear at the end of the show that people with Down syndrome aren't all the same. What more could you ask for?

And the part about her mom being the former governor of Alaska....no big deal.

You can watch the episode here.

What did you think?

Snow 2010

2010-02-15T11:57:00.000-08:00

November 1996

2010-02-10T10:53:00.000-08:00

We are snowed in today with nothing to do, so we're looking through our wedding and honeymoon pictures and scanning them in the computer. Aaaaah, to be young and skinny again!

I'm Not going to Feel Guilty Anymore.

2010-02-09T18:30:00.000-08:00

I always felt guilty when I think about Rylie's birth story. I wish I would have known the joy she would bring. I wish the days after her birth weren't fill with grief and I wish I would have accepted that she had Down syndrome instantly, but I didn't. I cried....for a long time and I prayed that the doctors were wrong. But when I read this beautiful birth story and the hundreds of comments that were left, I realized how many mothers out there felt just like me when finding out their baby had Down syndrome. It is not wrong that I grieved the loss of the baby I was expecting. What matters is that I did accept her along with my family and friends. What matters is we love her. What matters is she brings joy to everyone who meets her. What matters is now I realize how blessed I am that Rylie is my daughter who has Down syndrome.

Happy 7th Birthday Rylie!

2010-01-06T16:33:00.000-08:00

Wow, how did seven years go by so quickly? Rylie is so excited about turning seven today. She has been talking about it for days! She was even more excited to share some Munchkins with her class for a birthday treat!

Happy Birthday Rylie! I love you so much and I'm so proud of all your accomplishments. Your enthusiasm for life is contagious and you bring joy to everyone who knows you. I just love watching you grow. Your a big girl now...enjoy your 7Th year!

Are You Ready for Santa?

2009-12-24T07:57:00.000-08:00

He doesn't care
If you're rich or poor
He loves you just the same

Santa knows
That we're God's children
That makes everything right

Fill your hearts
With Christmas cheer
'Cause Santa Claus
Comes tonight

Play dates

2009-12-18T12:05:00.000-08:00

I'm excited! A classmate invited Rylie over her house to play after school today! This is the second friend who called for a play date with Rylie. It's funny because I had to ask the mom(and the last mom) if she knew Rylie has Down syndrome.(Yes, she knew) Ha Ha, but what if I showed up w/ Rylie and the mom was like HUH??? I'm thankful these parents encourage their kids to invite Rylie over. In fact it's awesome. If I never had Rylie , would I have invited a child with special needs to come over to play with Karlie? Probably not. Just being honest. Ok, I'll let you know how it goes. Rylie is so excited!!!!

Edited to add: The playdate went well! Soon as we got there they ran off to play. Rylie was so excited and of course when it was time to go she gave me a hard time. I had to bribe her w/ Dunkin Donuts coffee to get her to leave without a fight. She was invited back... so that's good:)

Christmas card outtakes.

2009-12-16T17:07:00.000-08:00

NOT SURE WHERE CESALIE LEARNED TO MAKE THIS SILLY FACE.

NOT SURE WHY WE THOUGHT PUTTING THE CAT IN THE PICTURE WOULD BE A GOOD IDEA.

CESALIE BEING SILLY AGAIN. SHE HAS SUCH A FUNNY PERSONALITLY....SHE'S NOT SHY ANYMORE!

HERE IS THE ONE GOOD SHOT WE USED FOR THE CARD!

I Say Merry Christmas

2009-12-05T18:56:00.000-08:00

It's Christmas time! We celebrate the birth of Jesus. So, say Merry Christmas, not Happy Holidays and write CHRISTmas not X-mas. I saw this graphic on Sallie's blog and wanted to post it here too!
Post it on your blog if you say Merry Christmas!

Rylie can read, write and add!

2009-12-03T17:11:00.000-08:00

Today Rylie brought a little book home from school. Her aide attached a note to it saying that Rylie can read all the pages. So I handed the book to her and right away she started reading it. It had sentences such as WE SEE THE TRUCK GO.
I was impressed, but thought maybe she just memorized the book(which I know is still good)So I pulled out her homework paper and asked her to read the words on it. And she read them all, words like CAN, THE, WE, MY, IT, etc.

Yesterday her homework had 6+1= on it. When I asked her what six plus one equaled she told me SEVEN right away.

Last week she was doing her homework where she had to practice writing upper case and lower case I's. On the top of the homework page there was a picture of a pig. I walked away from the table for a minute and when I came back she had written the word PIG.

She is doing so good in kindergarten this year. She has made so much progress since last year. I'm glad we made the decision of sending her to kindergarten for a second year. Now I feel like she will be ready for first grade.

Reece's Rainbow

2009-11-16T10:54:00.001-08:00

Over in Eastern Europe children born with Down syndrome are deemed worthless and immediately put in an orphanage after birth. In the orphanage they are taken good care of, but once these children reach the age of 4 or 5 years old they are sent to a mental institution and sadly many of them die there from lack of medical care. Actually in the mental institution they lack any kind of care. Thankfully there are many families in the United States such as The Garcia's who are currently in the process of Bringing Home Kellsey and The Zoromski's who are just starting the adoption process through Reece's Rainbow. Reece's Rainbow has many of families willing to save these children, but adoption is a huge expense! By donating to Reece's Rainbow you can help families with the cost of adoption. Please take some time and visit Reece's Rainbow and take a look at the waiting children. Also take some time to watch the video below.

Make an on-line slide show at www.OneTrueMedia.com

Happy Down syndrome Awareness Month

2009-10-02T17:02:00.000-07:00

I know I've been really slacking on the blog, but I did want to acknowledge that October is National Down syndrome Awareness month. Hope to be back to blogging more regularly soon. In the mean time I'll leave you with some pictures of my girl.

October is Down syndrome Awareness Month

2009-10-01T06:43:00.001-07:00

Happy 11th Birthday Karlie!

2009-09-10T08:49:00.000-07:00

She would just love it if you visited her blog to wish her a Happy Birthday

What's New With Rylie?

2009-07-30T18:26:00.000-07:00

We have been teaching Rylie how to drive this summer. She's doing a hell of a job, I tell ya!

OK, anyway......

Rylie finished her last day of ESY (extended school year) today. She's not going to be happy. Seriously, you won't ever find a kid who loves school as much as her! That's why I didn't feel bad sending her. So she'll have about five weeks off and then back to kindergarten. She'll have the same teacher as last year and hopefully the same one on one aide. She had a great bunch of classmates last year. They were so accepting of Rylie, and were such a big help to her. Even though they will all go ahead of her, I think it's great that she'll always have a group of kids in the next grade to "look after" her.

Other then that , there is not much to report. She's happy, healthy and she's just enjoying being a kid, and driving her sisters a little crazy. LOL!

Special Exposure Wednesday~Dr. Rylie

2009-07-29T00:00:00.000-07:00

Gifts 2

2009-07-24T16:26:00.000-07:00

It's almost here! Gifts 2 is expected to be available this September. You can pre order your copy of Gifts 2 by clicking here.

I can't wait to read all of the stories that were submitted. I mentioned before that my mom wrote a story about Rylie that will be featured in the book. This is so exciting!

Cesalie's Minor Surgery

2009-07-21T16:49:00.000-07:00

Cesalie had minor surgery today to have her Tongue Tie corrected. She did great! She was only in surgery for less then five minutes. She was back to herself right away. She doesn't seem to be in any pain at all now. We haven't had to give her any tylenol.

When she was an infant, Dr. ENT thought her tongue tie was mild, but now at two years old it didn't seem so mild. She's a very picky eater and she is always spitting her food out of her mouth. We were wondering if maybe the tongue tie had something to do with it and the doctor said possibly. It didn't seem to be effecting her speech, but it's hard to tell if a two year old is talking funny. YKWIM???? Anyway we decided to get the surgery and it worked out good.

Rylie and Karlie Outside the White House

2009-07-06T17:22:00.000-07:00

Happy 2nd Birthday Cesalie

2009-06-21T00:00:00.000-07:00

My Dear Cessie.

Wow, it has been two wonderful and EXHAUSTING years. You make me laugh and cry everyday! I laugh because your so darn cute. Your vocabulary has exploded this past year and you say the funniest things. When I sing to you, you cover your ears and tell me to STOP IT! I laugh when you you sing RAIN RAIN, GO AWAY(because it's been raining for 2 weeks now). By the way, I'm sorry your birthday party was cancelled, because of the rain, but we will have it next week. I laugh when you yell at your sisters and think your the boss. I laugh when you sing the whole theme song to Phineus and Ferb. I think it's so funny how you are not interested in shows like Barney or Sesame Street, but your favorite shows are Sponge Bob and Phineas and Ferb. Your favorite movie is Cars, which is why you are have a Cars themed birthday party!

Sometimes you make me cry when you won't sleep at night and you whine all day. I cry when I'm constantly picking up the food you throw all over the place and when I am constantly scrubbing the walls because you are obsessed with coloring on them along with the furniture. Ok, I don't really cry because of these things, but you definitely make me want to pull my hair out sometimes:) But you do melt my heart when I pick you up and you wrap your arms around me and squeeze me extra tight. When you tell me that you LOVE me, I get alittle bit emotional.

You are very shy and you still have stranger anxiety. Whenever you are babysat by someone you cry the entire time. You just love mommy and daddy so much that you don't want us to ever go anywhere without you. And that's OK...I'm glad we are on your good side.LOL!

I'm excited about what this year has in store for you. You are loved more then you'll ever know! I hope you have a great birthday and enjoy your presents. We got you a Princess Patio set that you can color on. Seriously....

Love,

Mommy

Wordless Wednesday

2009-06-10T18:01:00.000-07:00

Cesalie's Almost Two

2009-06-07T13:28:00.001-07:00

I decided to take some pictures of Cesalie outside in the yard today. I feel a little bit guilty that I never get her picture professionally taken. But to be honest I don't have the time or the patience anymore. I used to get Karlie and Rylie taken almost every month, and you know what? I don't even know where half of those pictures are anymore. Seems like I wasted a lot of money. So here's Cesalie. They came out better then I hoped. She will be two years old in a couple weeks. She doesn't have that baby look anymore. She's my little girl

Our New Kitten

2009-05-26T08:53:00.001-07:00

Yep, we got a new kitten and the girls are loving her! I thought she would kinda get on my nerves, but she's very good. Her name is Liberty(Libby for short).

Field Day 2009

2009-05-19T09:10:00.000-07:00

Last week Rylie had her first field day. This is a day where all the grades at school compete in different games out on the field. Rylie did great. She had no problem keeping up with all the kids.

Take A Break Cesalie...You Do Work Hard.

2009-05-13T12:20:00.000-07:00

A lot of Catching Up

2009-05-03T15:33:00.000-07:00

I've been crazy busy! My kids sure keep me on my toes. I haven't been blogging lately, because I can't think straight. Every time I sit down to blog, I hear crying or whining! I keep trying to remind myself that there is no selfishness in motherhood, but the kids are really pulling me in a million different directions. But, as the song goes..It Wont Be Like This For Long...and I need to cherish my children, after all these are the good old days, the days I will look back on and miss one day. The days I don't have to worry about what my teenager is up to, or how I'm going to come up with college tuition, or drivers licenses ,boyfriends etc.

Anyway...We had Rylie's IEP this week. EASY PEASY...It went so well! She will be doing kindergarten again next year. I'm very happy with the decision.

Cesalie will be two years old next month! She still has a lot of stranger anxiety. Actually it's not just strangers, it's anyone. She does good when she's around kids, but as for adults, she only wants to be around Vince or me. She still doesn't sleep great. She takes naps, but it takes forever for her to settle down at night and she still gets up in the middle of the night. She's tough!

Karlie is doing well. She did well in school this year, and she's glad the year is almost over. She is happiest when she is just playing with her friends. Besides cheerleading and violin, which she does during school hours, she hasn't done any sports or anything. I'm glad I don't have to drive her to practices or go to games and stuff. I just don't know how I would have the time. I don't know how some parents do it.

So, I just wanted to catch up a little. Hopefully I'll start blogging more soon and visiting more blogs. I'm on Facebook, if anyone wants to be friends. Look me up-Valerie Szarek-Volz.

So Sweet

2009-04-16T11:18:00.000-07:00

So Sweet

2009-04-12T07:00:00.000-07:00

Happy Easter

2009-04-11T18:37:00.001-07:00

Look How Big Cessie's Getting!

2009-04-08T17:42:00.001-07:00

OMG!!! Rylie has Down syndrome!

2009-04-06T18:08:00.000-07:00

You know that saying in the Down syndrome community, "One day you will see just your child , not the Down syndrome"? Well it's true...I felt that way pretty early on with Rylie. I don't usually dwell on the what ifs? I don't worry about her IQ or what her adult life will be like(usually). But every once in a while, out of nowhere it hits me...OMG I have a child with Down syndrome! And I get a little panicky. I can't really explain it. Anyone know what I'm talking about?

Please Touch Museum

2009-04-05T17:23:00.000-07:00

The Annual Father/Daughter Dance

2009-03-09T16:04:00.000-07:00

Again, the date on the pictures is wrong. These were taken on 2/20/09

The night before we left for Florida Vince, Karlie and Rylie attended the Sweetheart dance at their school. This was the fourth time for Vince and Karlie and the first time for Rylie. And yes, Rylie had a black and blue eye to match her black and blue dress. (she had a fall earlier in the week)

A day in the life of Rylie when she's sick

2009-03-07T11:36:00.000-08:00

She tries to play, takes out all her toys.......................

But she just doesn't have her usual energy, so she crashes in her toy box and sleeps there for hours.

Rylie and her Get Well Cards

2009-03-07T11:33:00.001-08:00

The T21 Traveling Afghan

2009-03-06T10:22:00.000-08:00

I'm sure by now most of you have heard of the Traveling Afghan. I'm a little late in the game , but I just signed up! If you haven't heard please visit here and read all about it! It's such a sweet idea!
c

Rylie's feeling much better!

2009-03-05T09:01:00.000-08:00

No fever, she's still a little tired and she is walking much better, almost back to normal!

So cute

2009-03-04T18:44:00.000-08:00

Rylie's teacher sent a folder home with Karlie full of classwork for Rylie. In the folder were a whole bunch of hand made Get Well cards for Rylie. OMG, Rylie loved them! She just sat there looking at them and giggling all night. All of the kids drew rainbows and chocalate chip cookies on the cards. So cute!!!! I forgot to get a picture, so I'll get one tomorrow and post it. Rylie seems to be doing better.

Rylie's sick

2009-03-04T12:01:00.000-08:00

On the ride home from Florida, Rylie and Cesalie developed a stomach virus. They both kept getting sick! Needless to say, it was a horrible ride home for everyone, but we made it home safe and sound. Cesalie got better pretty quickly after we got home. Rylie developed a fever that wouldn't break and yesterday she started walking funny(limping like Frankenstein). Vince took her over to the doctors last night and the doctor sent them to the emergency room. She suspected Rylie might of had an infection in her hip. Her x rays and bloodwork came back normal and they diagnosed her with PROBABLY having inflamation in the hip joint cause by a virus. They sent her home and said to follow up with her doctor today and keep giving her motrin along with plenty of rest.
Right now she is still limping, but her fever is gone. She is also eating a little bit and drinking plenty of fluids. The doctor said if she is still not walking right by tomorrow to bring her in and they might have to do some more testing. She slept almost all day so far, but right now at this very moment she is awake and singing.

2009-03-01T16:34:00.000-08:00

Here are some more pictures....

Last day

2009-02-27T18:40:00.000-08:00

Karlie and Cesalie were sick today. Especially poor Karlie. We still ended up going to the Magic Kingdom for a few hours. We were going to go to the Animal Kingdom, but it would have been too much. We figured out how to navigate the Magic Kingdom quickly! The girls were little troopers for not feeling well. We have a long ride home tomorrow and hopefully they will sleep a lot. They really need their rest. I think Rylie's Okay. I can't tell if she is just tired or starting to feel bad now. We had a GREAT time, but I'm looking forward to going home and relaxing. Next time we go to Disney we have to go with more people. Vince and I could have really used some extra hands. I put the camera away, so when I get home I'll post a lot more pictures. Bye for now!

Epcot

2009-02-26T20:09:00.000-08:00

Here are some pictures from Epcot today. Rylie's back to being fearless today and we went on some pretty cool rides. Poor Karlie is not feeling well. We have been giving her motrin all day. She was a real trooper for not feeling well. I hope she is all better tomorrow! Tonight we had dinner with the princesses! Cesalie kept saying, "Hi Princess!Rylie thinks it's the neatest thing, getting autographs!

Magic Kingdom part 2

2009-02-26T19:40:00.000-08:00

We went back to the Magic Kingdom yesterday. I always thought of Rylie as fearless, but she has made it known the past couple of days that she doesn't like fast roller coasters or the dark. She started crying that she was scared when we went into the Monsters Inc comedy show. I never realized that a lot of the attractions at Disney are scary for little kids. Anyway today was fun. We had dinner at the Crystal Palace with Winnie the Pooh and friends. We are on the Disney dining plan, and it is soooo much food. I don't think were going to be able to use it all before we leave. They give you so much! Last night we went to Downtown Disney. The resort gave us, a free $200 gift card, so that comes in handy for when the kids start asking for things.

Hollywood Studios

2009-02-24T18:19:00.000-08:00

Today was a great day! We went to Hollywood Studios. All of Rylie and Cesalie's favorites were there! We were picked to be FIRST FAMILY at the Disney Playhouse Show. Basically that means we got to sit in the first row and we received a certificate. The show was so cute! We also ate lunch with Jo Jo's Circus and the Little Einsteins.

Disney World-The Magic Kingdom

2009-02-23T20:38:00.000-08:00

PLEAsE DON'T MIND THE DATE ON THESE PICTURES. THEY WERE TAKEN TODAY 2/23/09. IT SET WRONG WHEN WHEN WE CHANGED THE CAMERA BATTERIES.

OMG! Disney World so far has been a mix of pure JOY and pure aggravation! It's very exhausting. This first day has been a lot of getting to know our resort and figuring out our schedule. That's what's aggravating and exhausting, but Disney World is just incredible and the kids are having a blast. The rides are really cool! We were able to get Rylie a disability pass and shoot to the front of all the lines....Down syndrome ROCKS!!!! HA HA! Honestly, she wouldn't be able to stand long in those lines. She has now mastered the FLOP and DROP(DS mom's ...you know what I'm talking about!

Tomorrow were off to Hollywood Studios. Looks like an awesome place!

We are here SAFE AND SOUND

2009-02-22T18:44:00.000-08:00

We are now at the Nickelodeon hotel! The ride here really wasn't too bad. Except who would of thought Cesalie could cry through the entire state of South Carolina! We stopped in Georgia and slept last night. Tomorrow we are off to Disney World for the rest of the week!

This hotel is really cool. The pool is heated to 85 degrees and the water slides are really cool! At 4:45 today they dumped a huge bucket of green slime on the kids. Karlie thought that was pretty cool!f="

I think once we get to Disney I might be to busy to blog, so if you don't hear from me, don't worry MOM! LOL!

Check out this Hotel

2009-02-20T09:38:00.000-08:00

We are almost ready for Disney. Before we get to our Disney resort we are going to stop here for one night. I swear we are the coolest parents ever! LOL!

Rylie's Classroom.

2009-02-12T15:37:00.000-08:00

Today I had a meeting at Rylie's school to add ESY services to her IEP. It basically means she will be getting extended services during the summer. After the meeting, I went up to her classroom. They were in the middle of snack time. She spotted me right away and ran up to me!"MOOOOOOMMMMMYYYYY!!!!!! She was so excited to walk me around her classroom and introduce me to all of her friends. She told me each kids name! Next the teacher started a lesson in their workbooks , so I sat down to observe. The teacher asked, What sound does the letter D make?" Rylie raised her hand and answered" Deh, deh, deh!" She's awesome. I was so proud. Her being in the regular classroom was the best decision we ever made. She is doing so good. She even has her very first class birthday party this weekend. I can't wait to go and watch her interact with all her classmates.

WE ARE GOING TO DISNEY WORLD!!!!

2009-02-08T18:03:00.000-08:00

We just got done planning our trip and we are leaving very soon! I can't even explain to you how excited Karlie is! Rylie doesn't quite get it yet, but we'll keep talking it up to her. Cesalie loves, loves, loves Tigger and Pooh, so she's gonna love it. Actually Rylie and Cesalie love all things Disney. We always have the Disney Channel on around here. We are so excited...more details to come!

Hmmm....

2009-02-03T14:23:00.001-08:00

I read that this was suppose to be a Super Bowl commercial, but it was rejected by NBC for being offensive. Wow...I don't even know what to say. I think a lot of the commercials they showed were offensive, and not anything you would want your kids to see. But this is a Pro-Life ad and it's considered offensive??

Not too addicted

2009-01-27T17:30:00.000-08:00

65%

I think a year ago it would have been much higher. I just haven't been into blogging lately. I'm gonna at least try to get a post up each week. I have been hanging out at Facebook a lot lately. At first I thought it was stupid and invasive, but now I'm getting addicted. It's so much fun catching up with friends from grade school and high school. Although it's not so much fun when pictures of me show up from grade school and high school! Nah, it don't bother me...It's hysterical actually.

2009-01-20T17:21:00.000-08:00

Karlie has another post up.

Simply click, read and sign

2009-01-20T15:41:00.000-08:00

I'm writing to let you know about a terrible piece of legislation called "The Freedom of Choice Act" (FOCA).

FOCA would establish the right to abortion as a fundamental right (like the right to free speech) and wipe away every restriction on abortion nationwide.

It will eradicate state and federal abortion laws that the majority of Americans support and prevent states from enacting similar protective measures in the future.

Please read the expert analysis by Americans United for Life (AUL) and sign the Fight FOCA petition at:
http://www.FightFOCA.com

Thank you!

Go visit Karlie's blog

2009-01-19T16:06:00.000-08:00

Karlie has a new post up! Click here or else....lol!
She really, really , really likes comments!

Snow

2009-01-19T12:19:00.000-08:00

The girls finally get a day of snow! Of course it comes on a day when they already had off from school for MLK day!

Happy Birthday Rylie

2009-01-06T14:40:00.000-08:00

I can't believe she's six years old already! WOW!

Just checking in to say hi and Happy New Year!

2009-01-01T17:54:00.000-08:00

I hope everyone had a nice Christmas. Things have been so busy around here. I haven't been blogging much because I'm too busy hanging out with my old high school friends on Facebook. I'm kidding. I haven't been blogging much because there is not much to say.

I did want to mention that I had Rylie's first report card conference a few weeks back. Her teacher is awesome! I couldn't be more please with how her kindergarten experience is going. I worried for nothing, but that's OK, I worry for no reason often. She has made so much progress since the beginning of the school year.

The girls enjoyed Christmas! They got so much from Santa and everyone else in our family. They are a little too spoiled. Cesalie and Rylie keep fighting over toys and they are driving me crazy. Karlie got a lot of American Girl doll stuff and she is really enjoying it all.

I'm glad 2008 is over and I'm looking forward to a new year. Rylie will be turning 6 years old on January 6th. I can't believe it!

HAPPY NEW YEAR!

Cesalie's Ride

2008-12-10T17:51:00.000-08:00

Wow, a Barbie Car....

I have an idea.....

It might be a tight fit, but I can do it.........

Vroom Vroom, ok, it's a little bit of a tight fit. Hey Santa, maybe you can bring me one of those Barbie cars for kids my size!

Christmas card

2008-12-10T08:59:00.000-08:00

Karlie's school picture

2008-12-09T18:02:00.000-08:00

Karlie always takes such a great picture!

Rylie's school picture

2008-12-09T17:59:00.000-08:00

I love this picture. I love how she looks so serious.

SANTA

2008-12-03T18:31:00.001-08:00

Happy belated Thanksgiving

2008-12-01T09:39:00.000-08:00

I'm sorry I never got around to wishing everyone a Happy Thanksgiving. I spent Thanksgiving upstairs in my room, sick in bed, while Vince cooked for his family.I heard they had a good dinner. I did recover by the next day though. Anyway, I wanted to share these pictures of Rylie. She came home from school with this pilgram hat, bonnet, whatever....I'm not sure if she made it or what, but she really likes wearing it and I crack up everytime she puts it on.

2008-11-30T07:45:00.000-08:00

When I'm editing a blog post and hit the enter button by mistake my post automatically publishes. It drives me nuts! I'm not ready to publish but there it goes, right to the google reader. People who have me on google reader must think I'm nuts.

A Miracle

2008-11-30T04:11:00.000-08:00

Shopping with my kids is torture. Most of the time I don't do it. I wait until Vince gets home to do any real shopping. Rylie has always hated sitting in a stroller or shopping cart. She screams to get out. She wants to get up and walk, but the problem is she also wants to run away! Cesalie is the same way. I have never been able to just put a kid in the stroller and stroll the mall or a favorite store. I must admit, I get extremely jealous when I see other babies/kids sitting in their strollers eating Cheerios or relaxing with their sippy cups, while my kid is throwing Cheerios and sippy cups along with screaming they want OUT!

Yesterday we all went to the mall. Rylie was being Rylie and refused to sit in a stroller. Cesalie screamed and cried alot! They were both pretty bad. But at least there was me, Vince and Karlie to deal with them.

Since Rylie and Cesalie were being so bad we decided to REWARD them with a visit to Santa! That was fun! More on that later w/ some pictures. Yes, I teach my kids that if they misbehave, then they can go see Santa and give him a list of presents they WANT.(Actually, maybe Santa was punishment for Cesalie because she screamed her head off when she saw him.)

After Santa, back to shopping AND THEN A MIRACLE OCCURRED- I sat on a bench with Karlie and Rylie, while Cesalie was in her stroller and Vince ran into a store. Cesalie was actually just sitting there being quiet. I was talking w/ Karlie and Rylie, when I glanced over at Cesalie and saw this............................

YOU ARE ABOUT TO WITNESS A MIRACLE-READY?????....................................

A child of mine asleep in a stroller???? You don't understand- it has never happened-ever! You just don't know how excited I was. In my ten years of being a mom, I have never had a kid fall asleep in a stroller while I shopped. So, there you have it-my Christmas miracle.

Wordless Wednesday

2008-11-26T17:23:00.003-08:00