Happy New Year.................................

I hope...

For the past ten years I have made the same resolution...to stop worrying and start trusting God more. I've come to realize this is not a resolution that can be solved in one, two or ten years. I think over the past ten years I have improved. I would not have improved if God hadn't give me so much practice. He has given me many opportunities to "Be anxious for nothing" and "Lean not on my own understanding".So I don't worry as much as I did 10 years ago. I have seen God's hand in my life so many times. I have seen his provision time and time again. How could I still be worrying ?

This week I will be going to Rylie's first transition meeting(Pre school to Kindergarten). I think this whole kindergarten thing is going to cause me to worry. I have dreaded this time ever since she was born.It's hard for me to say that this year I'm going to stop worrying, because I already know this will be a challenging year. I have been reaching out to other parents and learning of their successes and trials with their school age (Ds) children. I have been encourage. This is one of the many ways God has provided for me.

I hope this year will bring good health and good days to all. HAPPY 2008!

A conversation with Karlie about God and Down syndrome

If you have a child with Down syndrome then I'm pretty sure that at one time or another someone tried to encourage you with these words- Special parents get special children or special children get special parents. I remember after Rylie was born hearing this quite a bit. Vince and me were getting tired of it and we certainly weren't believing it. We actually turned it into an inside joke between us.

Last night I was having some deep conversation with Karlie. I asked her what she would do if someday she had a baby and the baby had Down syndrome. She said, Oh, I wouldn't care. I would want any baby that God gave me. Down syndrome is OK with me. (I wish I would have felt that way when Rylie was born). Next I started telling Karlie about when Rylie was born. I told her how I was so sad and how I kept praying to God that Rylie wouldn't have Down syndrome. Then I told her that now I know God didn't answer that prayer because he wanted her to have Down syndrome. He made her with Down syndrome because it is part of his plan. I might never know why this side of heaven,but I will trust God. Then Karlie said,"Mom, God trusted you". When he was deciding who would be Rylie's mom, he thought of you and trusted that you would be the best mom to take care of Rylie. In other words, she was trying to say special parents get special children. Now I believe it because Karlie says so!

BABY'S FIRST CHRISTMAS

MERRY CHRISTMAS

FROM:KARLIE
RYLIE
AND CESALIE

I'm Bored.....

I never thought I would be able to say those words again. I haven't been bored in so long! I think it was sometime way back before I was a mom.

Today there is a family Christmas party and Vince took Rylie and Karlie. I had to stay home with Cesalie because she is not feeling well.She started w/a stomach bug on Sunday and by Wednesday she had an ear infection. Today she has a bad cough. She has had a bad week.I feel bad for her. I have called the pediatrician more this week then in the whole nine years I've been a mom. This has been the craziest,busiest,most exhausting week ever. Rylie, Karlie and myself were sick also.

So, now Cesalie is napping and I am sitting here BY MYSELF for the first time in so long. I don't even have any Christmas stuff to do right now. Well I do, but I don't want to. I better enjoy this while it last! It could be years before I say I'm bored again!

If you have been reading my blog

Do you like this new look better or the old one? I wanted to get a banner made for the top. Anyone know anyone????

THE KARLIE TREE

It seems like everyone of our ornaments either has Karlie's name on it,says baby's 1st Christmas 1998 or was made by Karlie.Poor Rylie and Cesalie. There is one photo frame picture ornament with Rylie's picture, but it's a picture of her and Karlie. And I have nothing for Cesalie yet. So we named our tree the Karlie tree.

Chromosome Shmomosome

Santa

Last night we went to see Santa at the mall. On the way there we got a flat tire so we had to go back home and get in the other car. Every single time my girls go somewhere to get a picture it rains. This time it rains and we get a flat. We had to move the car seats and everything.

Rylie's hair looks good in this picture, don't it. Don't forget she cuts hair now.Seriously, I just pull her sides up now and it looks cute. She did a good job.Santa didn't even notice.

Rylie was really in to Santa this year. She was having so much fun waiting in line watching the other kids get their pictures taken.she kept shouting Hi THANTA, Hi THanta! When it was her turn she ran up and gave him a big hug.

We tried to tell Karlie, that this Santa was the real deal,no impostor, no santa's helper, but this guy gave himself away when he told Rylie that she was a very good girl this year.

Cesalie didn't cry at all. All the other babies were crying. Which was good because it made the line move fast. lol

This is a picture of a picture so it's not that great. Merry Christmas!

Cesalie Update

I took
Cesalie this past week to the ENT to see what he thought about her Tongue Tie. He sad it was so mild. He does not recommend doing anything to fix it. He thinks as she gets older it will stretch itself.He said he doesn't think it will ever cause any problems and just to leave it alone. This is also what the pediatrician told me. I will trust the two professional opinions and leave it at that.

Cesalie is almost six months now. Where does the time go? I am excited about her first Christmas. She will be meeting Santa tomorrow for the first time. I wonder what she will think of him.

She has officially said her first word-DA,DA,DA! Also on Friday night Great Grandmom Helen taught her how to clap her hands.

She loves to roll all over the house and can sit up for a few seconds without support.Also she likes CONSTANT attention. Honestly, no sooner did I type that last sentence and she started to cry for me, Gotta Go!

Get to know more about Rylie

I started this blog to raise awareness for Down Syndrome, hopefully to maybe encourage a new parent or someone who received a prenatal diagnosis, but I feel like all I have done so far is shown all of Rylie's bad behaviors. So now I am going to share all of the great things I love about Rylie................................

Rylie loves her family-she will always greet you with a big Hello and a Hug. She will always ask you -How was school today?-even though you didn't go to school.

Rylie loves babies...She is very gentle with her baby sister and will pat her back and tell her it's ok when she cries. If this doesn't work she will make sure I'm aware of the crying so I will act FAST...Rylie doesn't like to hear her baby sister cry.

Rylie is a great sleeper. She has been sleeping straight thru the night since the day we brought her home from the hospital.She still takes a 2 or 3 hour nap for me on the days she doesn't go to school.

Rylie is very girly-She loves to play dress up. She changes her shoes at least five times a day. She also would change her clothes all day if I let her. She loves to push her baby doll around in the stroller while carrying a shopping bag.

She loves Curious George! She watches her George movie at least once a day. I think she may be learning some of her tricks from him.-Ok I'm not suppose to be talking a bout bad behavior....

Rylie has a good vocabulary. She will repeat almost any words you teach her. She can talk in two or three word sentences. Some of the words she can say will amaze you.

Her favorite outdoor activities include soccer, riding her tricycle, the sliding board and swinging in the swing.

She loves her big sister Karlie and will try and imitate her every move. She tries to boss Karlie around sometimes, but Karlie puts her back in her place.

Rylie loves the school bus. Her bus driver and aide always comment on what a pleasure she is. She is extremely well behaved on the bus. She has a little friend on the bus and they hold hands to and from school.

Rylie is great at dressing herself and putting on her shoes. She knows how to get herself a snack. She knows how to work the computer, T.V. and DVD player. She only has to be told once to clean up her room. She can buckle or unbuckle anything!

Rylie loves to sing and dance. She loves to act silly. She can make you laugh so hard your stomach will hurt.

Rylie really enjoys life and I really enjoy her. I love her so much.

Don't call me if you need a haircut-Call Rylie!

Rylie got a beautiful haircut yesterday. I cut it a little bit above her shoulders. Well she must of enjoyed getting her hair cut so much yesterday that today she decided to get it cut again. She was nice enough not to bother me though. She just went ahead and and cut it herself. Oh it looks so nice, but it's a shame it's not 1987 because she gave herself a mullet. Yeah she totally chopped of the sides of her hair. The sides now come to the top of her ears and the back remained in tact from when I cut it.

What happen was she went in the bathroom to go potty, while I was feeding Cesalie. After going potty, instead of wiping and washing she decided to go climbing and cutting. She must of climbed up on the toilet and reached the scissors that were up on the shelf.

I really don't know whether to laugh or cry. I would probably just laugh if it wasn't for the fact that her school called yesterday, and asked for permission to have Rylie's picture taken next week for their fundraiser brochure. Unless I figure out how to fix it I guess she lost that modeling job.

Consider helping an orphan with Down Syndrome

If you are planning on giving to charity this Christmas season, please consider Reece's Rainbow. Your donation will help with cost for a family who wants to adopt a child with Down syndrome.Click on the picture above to learn more.

Yeah right

Cash Advance Loans

Click on this to see what level of education is needed to read your blog-he he-I don't think this is true in my case.

Busy weekend

Karlie and me went to see the movie Enchanted this weekend. It was sooooo good! I'm glad Karlie is at the age where we can enjoy the same movies. I might start taking her more often-just to get out of the house-he he! Actually if we went to the movies more often I might go broke. It was $22.00 just for two medium popcorns and drinks. If I bought that in the supermarket I could have gotten 10 bags of popcorn and 10 two liters of soda. It's crazy. Plus it cost $14.00 just to see the movie.

Also this weekend Vince and I celebrated our 11th wedding anniversary. I can't believe I'm only 32 years old and I've been married for 11 years. It has been a great 11 years, sorta ,kinda -wellllllllllll, no I'm kidding. We have been through a lot, but we are definatley happier and more in love today then we were 11 years ago!

Today is Vince's 35th Birthday-Happy Birthday!!!!!!!!!!!!Sorry you have to go to work today.

Pictures

Well, I finally got brave enough to take all three girls to get their pictures done professionally. This was not fun at all!!! First of all, you would never know by the picture, but I actually curled Karlie and Rylies hair with the curling iron. It was raining out that day, so that made their hair flop by the time we got there. Next when we got to the portrait studio, there were still two people in front of us. We had to wait about 30 minutes. Not fun! Rylie was not very cooperative. She was too busy worrying about Cesalie, and making sure Cesalie said Cheeeeesse!lol. Poor Karlie. she just sat there like a statue, smiling and praying it would be over soon.The lady taking the pictures was very patient and was good at her job(a rare find-for me anyway)so we did manage to get some really good pictures, but I can't show them. I am saving them for Christmas cards.

Still learning -now searching

For some reason if I see another parent out somewhere with their child who has Down syndrome I have a hard time approaching them. Okay-I don't approach them at all. I have been approached a few times in the 5 years I've had Rylie. I don't know what is wrong with me or what I am so afraid of. Just because Rylie has Down syndrome does not make me an expert. I feel I might say the wrong thing. I remember one time when Rylie was only 1 month old I was in a clothing store when a little girl around 7 years old with Down syndrome came running over to Rylie's stroller just to say Hi and see the baby. Her mother came after her and said, "I'm sorry-she just loves babies". I just smiled- walked away and then pretended to shop, "discreetly" watching her daughters every move. If I would have just introduced myself to this mom, I could have maybe made a friend who probably lived locally and I could have learned so much more about her daughter. I have been thinking about this lately because now It is my daughter who runs over to the babies in the strollers. I know a lot of moms now through the internet, but I don't know anyone in my area who has a child with Down syndrome. Where are all the children with Down syndrome? Hmmm.... The closest Down syndrome support group is in Lansdale PA which is about one hour away. I did try a special needs support group, but my child was the only one with Down syndrome. Anyway- all the sudden after almost five years I have such a strong desire to connect with other parents.

Yesterday Vince, me and the girls were in the car headed for the mall. For some reason, I said a quick prayer in my head-Dear Lord, maybe I'll meet a parent with a child who has Down syndrome today. That's about all I prayed. Then when we got to the mall I prayed the same short and simple prayer. I don't know why -I guess like I said- I now have this desire to meet other parents in my situation.

Our first stop at the mall was the food court, Vince and Karlie went to get pizza while me, Rylie and Cesalie stayed at the table. Rylie and me were counting our fingers when I noticed a man right next to us was smiling at us. He was sitting with his son . They both said hello! The next thing I know his son came over and introduced himself. This boys name was Adam, and he cleary had some type of speech problem. Then the father came over and told me that Adam was fifteen years old and autistic. We made some more small talk. When Vince came back to the table he started talking with Adam. They were talking about sports and all sorts of things. It's funny- I'm the one who is always reading, searching, and looking for anything about Ds or disabilities-But Vince was the one who just freely talked with this boy as he would anybody and I'm the one who still felt alittle bit awkward.

Rylie's IEP

We had Rylie's IEP meeting this week. This was not a year of great progress unfortunatly. She will now be going to pre school one extra day per week and her therapy time will be increased a little. Of course this didn't come without "pushing" on our part. This is the first time Vince has gone to an IEP meeting. He is the advocate in our family when it comes to Rylie's education. The reason she hasn't made much progress this year is because of her behavior.She is having trouble focusing. She doesn't want to sit still long enough to learn something new. She is getting a behavior plan for school. We are also getting her a behavior specialist for home.She is so smart and so capable of learning. She is just so stubborn w/ a short attention span.I am hopeful all this behavioral therapy will really help her and us. Rylie is also going to be getting evaluated for kindergarten. We have our first transition meeting in January. We have the option to keep her in pre school an extra year. We are still undecided. I think we will let them do the whole evaluation before we make a decision.I have always dreaded this time. I just want her to stay little!

We have a new Cousin

LUCAS MATTHEW WIEST

Born on 11/7/07

8lbs 5oz 20.5 inches


Congratulations Vicki and Scott- Your son is gorgeous!!!

We can't wait to meet him in person!

Signing

When Rylie was in early intervention (birth-three) we use to do a lot of sign language with her. Once she started pre school her speech really took off. I decided I don't want to do sign language, I just want her to talk. It seemed like she would learn how to say the actual word before she used the sign. Anyway, lately I am not to happy with her speech. I feel she should be saying more words. She is just not picking words up as fast as she used to. She has an appointment for a hearing test in a few weeks. I am a little bit concerned. She had ear tubes put in about two years ago and has always passed her hearing test since.

Well the other day I was at the computer and Rylie came up on to my lap. I showed her my blog. She kept saying eat ,eat ,eat. I said no, Rylie- you just ate! Then she pointed to the picture of herself at the top of the page (the header)-eat-eat-eat. I didn't even realize that in this picture she is doing the "eat" sign. Do you see it? Ha Ha- I think we are going to start signing with her again.

My Girls Part ll

Make video montages at www.OneTrueMedia.com

Cesalie Update

Well Cesalie had her 4 month check up today. She is 14 lbs 1oz and 25 inches. She is doing great!-However we have an issue. I noticed when she came home from the hospital after she was born that her little tongue had a funny shape. It is kinda heart shaped at the tip instead of round. But I really never thought about it again and even forgot to say anything to the pediatrician at her 2 week check up and 1 month check up. One day I was on line at an awesome baby website (TALKINGBABIES.COM) and reading what another mom wrote-She was saying that her baby has TONGUE TIE and she was taking her baby to the ENT to get her tongue clipped. She wanted to know if anybody elses baby had this procedure. After reading this I wanted to know just out of curiousity -what on earth is Tongue Tie????So of course I google it and find out right away that that the classic sign of Tongue Tie is a heart shaped tongue. Tongue Tie aka (ankyloglossia) is when frenulum (the cord that stretches from under the tongue to the floor of the mouth) is too short and it can restrict the mobility of the tongue. When I took Karlie the following week to the pediatrician for her check up I brought Cesalie with me and had the doctor look at her tongue. She told me yes, Cesalie does have a mild tongue tie. I wanted to know why I was never told this before and the doctor said because it's so mild and we don't see it being a problem. the only time the doctor would recommend having the tongue clipped is if there was a problem with feeding or if they are older and have a problem with speech. I have just started to give Cesalie some rice cereal on the spoon and she just spits it out of her mouth-so at her appt today I told the doctor. the doctor doesn't think it is because of the tongue tie. She thinks its because she is still little and just learning how to eat off of a spoon. She said if spoon feeding doesn't improve over the next few weeks to a month then we can talk about sending her to an ENT . Well I'm not going to wait- when I got home I made Cesalie an appointment with the ENT. I don't want her to have her tongue clipped if it's not necessary, but then again I don't want her to end up having a speech problem later on if we can just have the problem fixed now. The tongue clipping is a minor surgery that the ENT would do right in the office. They just clip the Frenulum. I guess I'll just wait and see what the ENT says.

DOES ANYBODY KNOW ANYTHING ABOUT THIS? IF YOU DO , CAN YOU OFFER ANY ADVICE?

The weird thing is that from what I have read Tongue Tie is hereditary. Neither my husband nor I have anybody in are families with this and also it is more comman in boys.

Mom

Why do I have a picture of my husband Vince here when the title of my post is Mom ????? Well because, that is what Rylie calls her Daddy. We don't know why she does it or how much longer this will continue. Now, she knows he's DADDY, but she just likes to call him mom. She'll say mom- he'll say, I'm daddy! It doesn't matter how many times we correct her, she just keeps calling him mom. When he pulls into the driveway she looks out the window and shouts," Daddy's home ,Daddy's home" -but when he walks through the door , she says Hi mom!! It's just so funny. By the way she calls me Mommy!

What was I thinking???????

I have been reading a lot of different blogs lately written by parents who have a child with Down syndrome. They are all so great and very encouraging to me. One comman thing I have noticed is that all of us parents have at one time or another received rude, hurtful, insensative, and ignorant comments in regards to our child having Down syndrome. I am not going to share any of the comments I have received by strangers, but I am going to be honest and tell you about the insane thoughts I had right after Rylie's birth. Some of these- I just thought and some of them I actually said out loud. Please forgive me as I knew nothing about Ds . This is why I forgive other people who have made insensative comments to me. Anyway-here goes...............

1. After the pediatrician told me that they thought Rylie had Down syndrome I immediatley thought I was going to have a child in a wheelchair. I really wasn't sure what Down syndrome was!

2. I wasn't sure if I should still give her the name Rylie (which I had picked out even before I knew I was pregnant)

3. I asked the pediatrician if the baby had Down syndrome because of the Benedryl I took one time during pregnancy(which my obgyn recommended for me). I had to be convinced by the doctor several times that it wasn't my fault. I still get bothered by the thought that people might think that Down syndrome is caused by something the parents did.

4. I actually said to a nurse "she is so beautiful-will she stay beautiful? -Duh-that was dumb. Rylie is gorgeous. I honestly do think children and adults with Down syndrome are beautiful. But of course I think Rylie is the most beautiful.

5. When people brought me gifts up to the hospital ie...adorable outfits...I thought- will she be able to wear regular clothes? I am laughing right now remembering this one.

6. I thought Karlie (Rylie's big sister) was going to be mad at me and she was only 4 yrs old at the time. I am still laughing!

7. I went down the list of characteristics and convinced myself that Rylie didn't have any of them and that her bloodwork was going to come back negative for Down syndrome and then all the doctors would have to apologize to me.



There are more -but, these are some I'm choosing to share. Some of them make me laugh and some of them make me think- what on earth was wrong with me? So like I said before...this is why I'm so forgiving when strangers make ignorant comments to me. I am glad that I am now very educated when it comes to Down syndrome-but I am still learning.

My little pumpkin

He was thinking of me

Rylie being born with Down syndrome was a shock to me. I had no idea, no gut feelings while pregnant, NOTHING. Pretty soon I will be posting about my birth story and the following days after she was born. My faith in God is what got me through those days -It is God who gets me through all my days.Many bible verses comfort me when I try to make sense of Down syndrome and other disabilities. Here is one of my favorites:





John 9:1-3 AND as Jesus passed by, he saw a man which was blind from birth. 2 And his disciples asked him, saying, Masrer, who did sin, this man, or his parents, that he was born blind?3 Jesus answered Neither hath this man sinned, nor his parents: but that the works of God should be manifest in him.



Blindness, Down syndrome. any disability -It is awesome to know that Jesus was thinking of us parents and our children 2000+ years ago.

On her best -worst behavior

Rylie is a great kid. She is so funny and always keeps us laughing. She is very independent. She has a great imagination-She is just cute as can be----However she does not fall in to that stereotypical always happy, so friendly- so sweet Ds catagory.Rylie has some behavior problems. She won't hold your hand, You can't tell her no just once, She cries when she doesn't get her way, she is always into something-She will never just sit still,.So anyway we are in the process of getting her a behavioral specialist.The behavior specialist came to the house this morning for an evaluation . I am proud to say Rylie demonstrated all these bad behaviors for her perfectly. Needless to say her services should be starting very soon.

This will leave you wanting more

Make photo slide shows at www.OneTrueMedia.com

Karlies post

Tonight Karlie told me she would like to write something on my blog about being a big sister. I told her to write it down on paper then I would type it onto my blog

So here it goes straight from Karlies heart......
Hi I'm Karlie. It is nice having two sisters but sometimes it is hard.
I feel fine that Rylie has Down syndrome. It is hard . Rylie can be bad sometimes, but I still love her. Cesalie is cute but sometimes she cries too much and I can't stand it. But no matter how much things happen between us I still love my little sisters.

Down syndrome Awareness Month

Rylie is almost 5 years old and I just now found out that October is Ds awareness month. Of course having a child with Ds makes you aware of Ds all the time. When she was born I knew absolutely nothing, and I do mean nothing about it. What I am aware of now is that babies born w/ Ds are the same as any baby. They eat, cry, sleep and are just as cute as any baby. I regret I didn't spend those first few days rejoicing in having a new baby the way I did with my other kids-I was too busy being scared to death and feeling sorry for myself. Plus it didn't help that their were some medical issues to deal with. Family and friends were very helpful during this time-Everyone congratulated us and offered so much help. I will always be grateful that nobody acted as though Rylie being born with Ds was a bad thing. I had to be reminded that she was still my daughter and nobody would treat her differently, and nobody ever has. Children with Down syndrome will reach all their milestones ( it may take alittle bit longer), they will laugh, cry, feel joy, love, hope, be silly, get mad, be sad, just like any child. -Oh and they will misbehave-Rylie reached that milestone right on time.LOL!!

New To This

Hi my name is Valerie. I am a mother and wife. I have a wonderful husband and 3 Beautiful daughters. Karlie is 9, Rylie is 4 and Cesalie is a newbie (4 monthes old). Rylie has Down syndrome. She is doing very well. When she was born 4 1/2 years ago there were no blogs like this for me to read other peoples stories. All I ever found on the internet was a bunch of scary medical stuff. I hope my stories will inspire other parents who have children with Down syndrome or parents who just got a diagnosis. Please stay tune and Welcome to my blog.