items in CdLS Awareness through Photos More in CdLS Awareness through Photos pool

Sunday, August 30, 2009

To my classmates...

A couple weeks ago I shared a letter I wrote on Joey's behalf to give to his teachers. We got a great response - everyone feels comfortable and they know the lines of communication are always open. I also purchased an inexpensive notebook which we use to communicate back and forth with Joey's teachers every day. This way they always know what time he will be picked up, what he's eating for lunch, etc. It is also a great way for the teachers to write about Joey's day so we know how he spends his time. It is a wonderful communication tool. Anyway, tomorrow Joey is the Star Student of the day. Each child in the kindergarten class gets a turn at Star Student. They are able to bring 2 or 3 things to class to show the other kids and they are able to tell them a little about their lives. I wrote a "kid friendly" version of his teacher letter that will be read for him. A copy will also be sent home with each child with a CdLS brochure attached so their parents can learn more about Joey too. This worked well in preschool last year so I'm hoping it will work well for kindergarten too. Educating others about CdLS helps win the battle against ignorance. Here is the letter Joey will be sharing:

Hi! My name is Joey. I am one of your classmates in Mrs. Emerson's class. In a lot of ways I am just like you. I am 5 years old. I have a mom and dad, two big brothers and two little sisters. My brother John is 16 and is in 10th grade. My brother Tommie is 13 and is in 8th grade. My sister Emma is 4 and my sister Abbie is 3. They go to preschool. I have 3 cats named Reggie, Blackie and Casey. I like to play with toys and go outside. I like building blocks and music. I really like to play my piano. My big brothers play lots of sports so I get to go to lots of footbal, basketball and baseball games. They are a lot of fun! But you might have noticed I am different in some ways too. I was born with Cornelia de Lange Syndrome. I am not sick, I am just taking a little longer to grow and learn some of the things that you already know how to do. I just learned how to walk by myself this summer. I get to go to a fun place called Wiggles and Giggles and a nice lady called a physical therapist is helping me to learn how to get better at my walking. I don't know how to talk much yet either, but another nice lady called a speech therapist is helping me to learn words too. So don't be upset if you talk to me and I don't answer you back, I am still learning how to say things. Sometimes you might see me in a blue chair when I come to school. Don't be afraid, it's just something I can ride in to help me get around better. If you have any questions about me, please ask Mrs. Emerson or Mrs. Weiser and they will help you find out what you want to know. I am happy to be your classmate. I know we will have lots of fun together!
In other news, now that school has started we are busier than ever. We have had a lot going on - the boys started back to school and the girls started preschool ( there were tears - only on my part though!). We got a new roof on our house and been to watch John play in his first varsity football game. Joey went to a pediatric ENT last week and doesn't have to have his tonsils out! Yay! When we had him at clinic in July, the doc noticed one of his tonsils was enlarged so we followed up with an ENT visit. There are no growths or abnormalities and his tonsils don't look diseased so that was good news. One is just larger than the other. Unless that starts to give him problems with eating or breathing, they can stay put for now.

I will update with pictures of all our happenings later this week. In the meantime, you can catch me on Facebook - that's where all the action seems to be and it is a wonderful way to connect with other CdLS families. If you haven't joined I encourage you to do so. It is an awesome source of communication and support. If you and your family feel alone in the daily battle of having a child with Cornlelia de Lange Syndrome, come on over - you will find lots of friends. Oh yeah, and I have a farm or two that keep me busy over there too!

Thursday, August 20, 2009

To my teachers....

Here is a letter I wrote on behalf of Joey to share with his teachers at school. It will help them learn more about Joey and all the things he can do. I have found that by sharing information about Joey and being open and honest about his condition works towards his benefit. The more the teachers know about Joey, the more they will be able to help him reach his goals. With each letter I attached a CdLS brochure to help promote awareness about this syndrome.

To My Teachers:

My name is Joey. I am 5 years old. In many ways I am a lot like most of the kids in your class. I have a mom and dad. I have 2 older brothers and 2 younger sisters. I have grandmas, grandpas, aunts, uncles and cousins. They all love me very much. I live in a house. I have my own room. I have 3 cats. I like to play. I like to go to school. I also like to learn. But I am also different from the other kids too. I was born with a rare condition that is called Cornelia de Lange Syndrome. I am not sick. I am a little bit smaller than other kids my age but I am healthy. Kids with CdLS have a lot of similarities. We share the same facial features and have many things in common. If you would like to learn more about CdLS, please visit www.CdLSusa.org.

Now that I am in kindergarten, I am busier than ever. In addition to going to school, I get to go to a fun place called Wiggles & Giggles 3 days a week for physical, occupational and speech therapy. They help me in a lot of ways. I also get to ride a horse called Buttermilk once a week. This helps me get stronger too. My big brothers play sports so I also get to go to a lot of baseball, football and basketball games. We are a busy family!

Usually I am very happy. Some things that make me unhappy might be that my braces have gotten uncomfortable on my feet. Will you take them off for awhile so my feet can stretch? Or I might be hungry. I can eat crackers, cookies and other snacks myself. Could you help me with my lunch? I also might be tired. Sometimes when I get tired I get frustrated and mad. Will you take a few minutes to play with me or sing me a song? This always helps me feel better.

Even though I have a disability, I am able to learn a lot of things. I just need a little extra time and help. I may not be able to speak but I can communicate in other ways. I know how to use PECS and I am in the process of learning how to use my new Dynavox. Sometimes I will tell you what I want or need by taking your hand and showing you. I like to figure out how things work and the easiest way to do things. My mom says I am very good at this. I like building things, playing with blocks, music and playing with my classmates. I also like light switches. I like walking with my walker and I am able to take some steps on my own. I always like to go to school and I have the ability to learn new things. I know other kids with CdLS that can talk, read and write - it just took them a little longer to do these things. I know I can learn to do these things too. All I need is your help. Thank you. I am happy to be in your class!

Joey Riedmiller

Tuesday, August 18, 2009

Dear Joey

Dear Joey,
Today I had to let you go. Just a little. You see, today you started kindergarten. You are such a big boy! When I asked you if you were ready to go to school today, you smiled and laughed and clapped your hands. I know in your own way, you were trying to tell me "Come on Mom - it's not so bad! I love school!" Thank you for that. To tell you the truth, this whole kindergarten thing is pretty tough on your old mom. I'm trying to be brave like you taught me but I am missing you so much right now my heart hurts. I know you are okay but I can't help worrying about you and wondering what you are doing right now. I am also crying a lot - I promise to stop before I pick you up from school today! I am so proud of you and all the amazing things you have accomplished in the last 5 years. It seems just like yesterday you were the tiny baby we brought home to love and take care of. Now you are off to kindergarten and I can't turn back the clock no matter how much I want to. I want to thank you for all I've learned from you and for making our lives so amazing. Thank you for picking me as your mom. Even though I am not with you at school, I want you to know my spirit and my heart are right there beside you the whole way. I know you will do a great job. I love you Joey.

Kisses & (((((Hugs))))

Thursday, August 6, 2009

25 random things about Joey...Part 2

I was originally tagged for this challenge and posted it on Facebook. If you are not a part of our CdLS family facebook network, I encourage you to do so. It is a great way to connect with families. I have completely enjoyed learning new things about the other CdLS kiddos this week and wanted to post Joey's list on our blog too in case some of you are not on facebook. Some of the similiarities between Joey and his CdLS brothers and sisters is remarkable. Thank you to everyone for sharing their information and their pictures. Their smiles just make my day!

So here goes, a new random 25 .... you now the drill - if I tagged you, its because I am interested in getting to know you and your child better. If you decide to post your own 25, please tag me.

1. Joey loves light switches. If he sees a light switch, you can bet he will turn it on. (And off, and on, and off...you get the idea!) If he can't reach it, he will find a way to get to it! :o)

2. Joey has a very sweet disposition. Most of the time he is content and happy with the exception of an occasional melt down.

3. Joey turned 5 in April. He is 3rd in the line of 5 children. He has two older brothers ages 16 and 13. He also has two younger sisters, ages 4 and 3.

4. Fortunately, Joey is healthy. Despite a sinus infection here and there, he has never had any serious health issues except for reflux. He had a fundoplication in January 2008 which did wonders for him.

5. Joey weighed 7 lbs., 1 oz. when he was born which is pretty good size for a child born with CdLS. We had no previous indication anything was wrong with him until the day after his birth. He now weighs 30 lbs.

6. Joey is in his third season of equine therapy. He rides a horse once a week from May thru October. He really enjoys it!

7. Joey has physical therapy twice a week, occupational therapy twice a week and also speech therapy twice a week. He has been going to the same therapy facility since he was 8 months old. The girls are wonderful with him! He always looks forward to going.

8. Joey will start kindergarten in a couple weeks. He had one year of preschool/playschool when he was 3 and one year of preschool when he was four. I am nervous for him to start kindergarten but I know he will be in good hands.

9. Joey doesn't have any hearing or vision problems. His hands and feet are small but proportionate with the rest of his body.

10. Joey likes to figure things out. He is always trying to find the easiest way to get something done. When we put new batteries in one of his toys, he always likes to use the screwdriver and he knows exactly what to do with it.

11. Joey loves music. I have lost track of how many keyboards he has. Of course not all them them have new batteries at the same time. I should own stock in Duracell!

12. Joey loves Legos. He likes to put them together, take them apart and make towers on his Lego table.

13. Joey likes to wear his shoes and braces. Usually the only way he will stand and walk is if he has his shoes on. He started walking on his own a few weeks ago (yay!!) but is still a little unsteady. He walks on his terms - just like everything else he likes to do.

14. His favorite song is The Ants Go Marching. If he is crabby or if there is something we want him to do, we sing this song and it works wonders!

15. Joey loves to be outside. This hasn't always been the case. He's come a long way!

16. Joey likes to have his head scratched. Right on the top towards his forehead. It helps calm him down if he is upset.

17. The only word Joey says is Mama. He can communicate his needs by emotions and gestures. If he wants something he will take our hand and pull it towards what he wants. He is very good with the Picture Exchange Communication System and recently started working with a DynaVox.

18. Joey is a little ladies man. Every woman or girl he meets falls in love with him. He has a lot of lady friends! :o)

19. Joey dislikes having his picture taken. Once in awhile we can get a good one of him but if we are trying to take a family picture or something he doesn't usually cooperate too well.

20. Joey is very strong. Stronger than you would think he would be because of his small size. And boy does he have quick hands! He is also the fastest knee walker you will ever see!

21. Joey has become very social. I think going to school really helped that. He used to want to be by himself all the time. Now he prefers to be where all the action is.

22. Joey is a great teacher. I have learned so much from him. Patience, understanding, trust, love...the list goes on and on. I am a much better person because he is in my life.

23. Joey is very observant. If something is different or has changed, you can bet he will notice it right away.

24. I am grateful for all of the wonderful people we have met because of Joey. He has enriched our lives so much it is unbelievable. I can't imagine my life any other way.

25. We are so happy to be a part of the CdLS family. I don't know what we would do without everyone's support. It makes each day better to know all of you are out there for us. :o)

Saturday, August 1, 2009

Catching up....

I didn't think I had much to blog about but when it gets down to it, there has been a lot going on around here. So time for some pictures and catching up. First of all, Joey's visit to the Children's Developmental Clinic went well. This is a clinic we go to at Children's Hospital in Omaha once a year and get to sit in a small room for 5 or 6 hours while different doctors and therapists come in and tell us what they think. I was smart enough this time around to take Shawn along for reinforcements so keeping Joey entertained wasn't entirely left up to me. All in all clinic went pretty well. They check his progress and make any recommendations they may have. I am happy to report that they were all very pleased with his progress (I knew they would be!). Everyone was delighted with his walking skills he has developed and he gained 4 pounds since he was there last. A couple of them do think his braces are a little short and recommended a different pair of shoes (possibly Sketchers) but all in all very happy with his walking. When the pediatrician examined him, he thought he noticed that one of his tonsils is enlarged. So this means we get to make an appointment with an ENT doc for follow up to see if anything needs to be done. And when we spoke with the geneticist, she finally convinced us to have blood drawn from Joey for CdLS testing. We will have this done in September when we go back for a GI appointment. Joey kept himself busy trying to escape out the door (as you will see from the pictures) and taking off down the hallway. He also discovered the chair makes a pretty good drum. I will keep you updated on any future appointments he has. The next one is August 12 with our family doctor for his physical for kindergarten.

Let's see...what else...Abbie got her hands on a pair of scissors the other day when no one was looking. I guess she was trying her luck at being a beautician and cut a big chunk of hair right off the front. This prompted two haircut appointments for the girls on Friday. Neither one of them had ever had a haircut before so this was a new experience. They did pretty well.

John turned 16 this past week too. Gosh - I can hardly believe it! We celebrated by spending about 3 hours at the DVM getting his driver's license. Everybody and their dog must have been there that day with license issues. It took forever! But it was worth it cause he passed on the first try. Way to go John! It's really hard for me to let him take off in a car all by himself. It just feels so weird! Some days I feel like I should still be 16 instead of a mom of a 16 year old! When did I become the grown up?

That's all I've got for now. I'm trying to get geared up for school which will start here in about 2 1/2 weeks. For the record, we will have 2 preschoolers, a kindergartener, an 8th grader and a sophomore. Hopefully everything will go smoothly. I will let the following pictures do the rest of my talking! Have a great week!

John on the Columbus Reds...Season record 21-7! Way to go guys!

Joey spent most of his time trying to escape out the door at clinic...

We would bring him back in and he would get the door open again and again...

Playing drums on the chair....very entertaining!

John by his hand me down car with his new floormats!!

Sweet sixteen! With his Oreo ice cream cake and 16 candles...

Getting some help blowing out the candles...

This is what prompted the haircut appointments...

Probably about 4 inches right off the top!

Abbie before haircut...

Abbie getting hair cut...

Abbie after haircut....

Emma before haircut...

Emma getting haircut....

Emma after haircut...

Aren't they adorable!!

Our Guestbook