Growth chart for Down Syndrome

Riley went to the doctor yesterday for a check up and vaccinations so she would be all ready for school. She now weighs 34lbs and is 39 1/4 inches tall. While she is the size of the average 2-3 year old, I found the growth chart for children with Down Syndrome and she is in the 50th percentile in weight and 75th percentile in height. It is very helpful to refer to the growth chart for children with DS. Just like any other area, it is harder to compare her to typical children so having this resource is invaluable. Here is the link for growth charts for girls and boys with DS from the NDSS. http://www.ndss.org/index.php?option=com_content&view=article&id=71&Itemid=91

Bruno Mars - Just the Way You Are (Cover by MattyBRaps ft. Tyler Ward)

I had to share this video, little boy rapper who loves his sister just the way she is. Nothing cuter or sweeter out there!

Wordless Wednesday(Summer Fun)

Hey friends out there in blogland, sorry I haven't posted in awhile. Summer has been pretty hectic. Riley will be starting Pre K at Elementary School next month so we've been preparing for that, my husbands band is back together and just played their first show last Sat...etc. We've been busy. I will try to get back in to the grove and post more often. My little model has been pictured in the Red River Moms(June and July issues and will be October's cover!) and the local paper(Bossier Voice) recently. She's such a cutie and loves seeing her pictures. Here are a few new ones of her, promise to write more soon.

Just like Daddy

I've known since I was a little girl that there is something special between fathers and daughters. I remember as child how much I idealized my father, even wanted to change my name to Jamie(my dad's name is James.) Tonight I saw the hero worship in my daughters eyes for my husband(and he wasn't even home. LOL)I must start by saying my husband is an excellent cook and he loves to be in the kitchen creating. He often mixes his own spice rubs and seasonings. This evening while he was at band practice I came out of the bathroom to find this scene: Riley had pulled her vanity stool out of her playroom and into the kitchen, used it to climb onto the counter, opened the cabinet and got down a Tupperware bowl. Then proceeded to mix in said Tupperware bowl, an entire bottle of garlic powder, half a bottle of gumbo file', sea salt, and cavandar's all purpose Greek seasoning. When I walked in I said Riley what are you doing? Are you being daddy? She said proudly, "I cookin". I was laughing so hard and thought it was so cute, it was hard to fuss,so instead I captured the moment with these pictures.

Wordless Wednesday(Ballerina)

Dancing queen.

Here is the cutest thing ever, my prima ballerina in her first recital.

Wordless Wednesday(Riley's artwork)

Sorry I haven't posted in awhile, we've been busy. Here are pictures from a weekend getaway we took. Enjoy. Promise I will blog more soon. Alena

A free photo slideshow by Smilebox

Future Superstar!

Check out my future superstar, jamming out Just like Daddy!

IEP

Thursday, I had Riley's annual IEP meeting. For those of you not familiar, IEP is Individual Education Plan. In this meeting, myself and all three of the therapist that see Riley, as well as her daycare teacher got together,to discuss progress and set goals for the upcoming school year. In her last IEP(May of last year) each therapist(speech, APE, and Academic) set a goal and listed 3-4 objectives. I am so proud to say that she met all 3 goals and accomplished 8 out of 10 objectives. We set goals for the upcoming year to continue to push Riley to be all that she can and help her achieve success in the classroom setting. One test, given by her teacher therapist asked many questions and measured the developmental age based on what the child can answer/perform. In several categories,I was amazed to see that Riley tested at over 5 years old. (She's only 4 1/2!!!) I'm so proud of her and we will continue to read to her, practice what she's working on in school, etc. to ensure she continues on the path to excellence. Every moment can be a learning opportunity. Parents, whether your kids have special needs or not, take the time to invest in their future. They are the world's greatest asset. Try turning off the radio, or dvd player in the car and point out things you see or review what they are learning at school. Driving to and from school is some of my favorite time with Riley, It's a constant reminder that having DS doesn't limit her on what she can learn and achieve.

Wordless Wednesday(Easter pictures)

Needing Mommy!

Is there an age where you stop needing your Mommy? I know as children grow, they become more independent. But even now when I'm grown with a child of my own there are times when I still want my Mom. Anytime I'm sad or sick I still wish My mom was closer. Right now my poor sweet baby is sick and all she wants is ME. She doesn't want anything more than to sit and be held by Momma, even letting me rock her in the old rocking chair. This rarely happens as active as this 4 1/2 year old is I hardly ever get to sit and hold her and rocking her gosh, almost never. So even though I am taking good care of her and giving her medicine and wishing she gets well soon, I'm taking advantage of this time where my girl just needs her mommy!

Last night, Riley and I went to the funeral home for a visitation for a family friend who passed away due to cancer. As we walked in I saw a lady just gravitate towards my child. I am getting pretty bad about remembering names and faces and hoped I was not supposed to know her. She walked up and said. Your daughter is beautiful! My grandson is 19 months old and he has DS. The mom and grandbaby had just left(Bummer, I would have loved to meet them!) But I talked with the woman and her husband for quite a while. She asked about milestones, and when Riley reached them. I told her whenever I'm out and see a child who has Downs I just want to give em a big hug. They are so precious and I somehow feel like we are all connected. Like we're in an exclusive club and WE ARE THE LUCKY ONES!! I feel like we are all kindred spirits blessed with more love than we could have imagined. And though each story is different, they all share common threads. Through events like Buddy Walk, local DS groups, and even this blog, I have been blessed to meet so many wonderful families who are living each day to the fullest and loving every minute with their special children. I feel so blessed to be a part of this loving and supportive community! As we left, in typical Riley fashion, she hugged and waved and blew kisses to everyone. To her we are all the same, she doesn't see race, economic status, abilities, etc. She just sees a world of friends, and if we were all a little more like that, this world would be a better place.

WORLD DOWN SYNDROME DAY! 3/21

HAPPY WORLD DOWN SYNDROME DAY! Down Syndrome International (DSI) has officially earmarked 21 March as World Down Syndrome Day (WDSD). The date was chosen to signify the uniqueness of Down syndrome in the triplication (trisomy) of the 21st chromosome and is used synonymously with Down syndrome. The annual observance of WDSD aims to promote awareness and understanding of Down syndrome and related issues : and to mobilize support and recognition of the dignity, rights and well being of persons with Down syndrome.

I can't begin to count the many ways my life has been forever changed and enriched by Down Syndrome. Since 2005, when we were blessed with our precious little Riley, I have learned more, grown more, and loved more, than I ever thought possible. Everyday I am amazed by how much she makes me smile, laugh, and just how much I love her. Being Riley's mom has changed me in the greatest ways. And on today, World Down Syndrome Day, I celebrate the beautiful child Riley is and the wonderful person she will become.

Wordless Wednesday 2( Kika's bday shopping)

Wordless Wednesday( St. Patty's Day at School)

Hello Everyone,
Sorry I haven't blogged in a while. Things with a 4 year old get hectic. Since I haven't posted lately I thought I'd give an update on recent events.

School Days?
A few weeks ago, I was told by daycare that since she would be 5 before the deadline, Riley would start Kindergarten this August. When I tell you I was not prepared for this at all, I mean it hit me like a ton of bricks. I knew that she(and I)weren't ready for big school. I had planned on keeping her at her excellent daycare one more year, because she is testing at about a year delay, I felt this would give her some "catch up" time and lead to successful school days. After several hours of crying, and with the help of my wonderful Mom(THANK YOU SO MUCH!!)I was able to explain to the local school board, the special ed coordinator to be exact, our situation. Not only did I not feel like Riley was ready for school she is so small(she only wears 24months-2T and she'll be 5 this year). The woman explained that I did not have to enroll Riley in Kindergarten this year, that she could wait one more year to start and that because of her special needs, school district was not a determining factor because we can send her to the school we feel has the best programs for her. WHAT A RELIEF!! So in August, if she is to old for daycare, then we will be sending Riley to a preschool program at a local elementary school where Gerard's cousin is a Kindergarten teacher, then next year she will attend there and have a familiar teacher. That should help ease my anxieties about school. It is amazing how fast they grow. When Riley was born, I thought it would be forever before I was worried about school, but that day has come.

Ballerina? After 3 weeks of dance class, with no significant progress, I was facing a difficult decision. I did not want to give up on Riley, but with her not participating and spending the entire class running around, nor did I want to pay for her to run(something she can do at home for free). My mother-in-law went with us to dance and was pretty irritated that neither of the teachers engaged Riley or even tried to get her to join the group and participate. I asked for a withdrawal form and then something wonderful happened. Watching on the tv monitors(parents aren't allowed in class) I saw Riley joining the group. The head teacher decided to hold her hand and say Riley you will be my partner. The rest of the class she stood right by the teacher and participated. Even attempting the ballet positions, so I know she had been watching at least. During a bathroom break, I snuck in a told Riley how proud I was of her. The teacher said, "to be honest with you, I was scared to try to make her participate and stand by me because I didn't want to hurt her feelings, but now that I know that this is what she needs she'll be my partner. Riley really seemed to enjoy the rest of the class,I think she felt special standing up front with the teacher, and given the extra attention, she may turn out to be a prima ballerina after all.

Update

Hello Everyone,
Please continue to pray for Katy, Here is a blog by my cousin Al. He is updating as he can. Thanks for your support. Alena

www.katyupdate.wordpress.com

Please pray for Katy

This is my cousins wife, please pray for her and their entire family. This is a really hard time for them and they need all the prayers they can get. Thanks, Alena

 

Queen Riley

It has been a very memorable couple of days for Little Miss Riley. Yesterday there was a golf tournament to benefit her wonderful daycare. The daycare director asked if I would bring Riley to the Press event for some pictures. They local news interviewed me and Riley and we were TV stars last night. We recorded it and watched our 30 second clip several times. She was amazed to see herself on TV. As if being a "Television star" weren't enough, today is Fat Tuesday(MARDI GRAS, for those of you not familiar with Louisiana)and there was a parade at daycare. Riley was Queen of her class, she even had a court with Prince and Princess and a handsome little King. Here are some pictures from her reign as Queen.