Where Do I Begin?

Those aren't the words you necessarily want to hear from a doctor. Those are the exact words we heard from Lucy's opthamologist on Tuesday. We went to a regular check up expecting to hear what we always hear. "Every thing is fine and we'll see you in 6 months." Instead, he rolled around in his chair and said, "Where do I begin?" He told me three things. 1- There are no complications from her JRA. 2- She has a astigmatism and needs glasses 3- Her nerves are elevated and her blood vessels are enlarged and scattered. He continued to explain that a blood clot could be causing this. That's when the tears started. He wanted her to go to Children's the next day so that he could do an ultrasound on her eye to measure the fluid. If the fluid was normal then it wouldn't be such an emergency but if it was increase then she would need to get a MRI right away and possibly a spinal tap.
It was a difficult night. We were both so worried.
On Wednesday we headed to Children's. Lucy actually cheered when we told her we were going back to the eye doctor. As we sat in the waiting room the doctor was the one who came to get us. In all the appointments I've been to I don't think that has ever happened. He takes us back and the ultrasound goes much smoother than I thought it would. Once it was over and the doctor made all his notes (which felt like forever). He rolled around and said the words we wanted to hear. Her fluid levels are normal so maybe this is just the way her eyes are... "my concerns are greatly reduced." Those where his words on Wednesday. Insert sigh of relief. He took pictures of her eye and then we headed over to get glasses. He is still sending us for an MRI to make sure things are ok. She is going to look super cute in her new specs. I'll post pictures.

Ian is 2

Well, I like to do this on the kids actual birthday but better late than never. So sorry my 3rd child.

It feels so long ago that he was that tiny baby. When he would just curl up in a ball and fit on my chest. I can't believe he is two. I just told Kevin the other day that he really isn't "Baby Ian" any more. He is talking so much and loves to play like his big brother and sister. He still loves to climb but does a pretty good job at getting himself down. He has finally learned the entire pattern for a knock- knock joke. He started with just "Knock, knock" and has progressed to all the parts. The punch line is always, "On head" thanks to Simon.

He loves animals. He got a bucket of farm animal for his birthday and could have cared less about opening another present. He is a pretty good eater not real adventurous but he does well. He still loves to cuddle. One of his favorite games is for himself or others to pretend to sleep and then wake up at a cock-a-doodle-doo. He loves to books. He is the cutest pouter! I smile every time. He puts his head down, crosses his arms, and makes this little "humph" sound (thanks to Lucy). It the cutest thing I've ever seen.

Sometimes, I wouldn't mind if they could stay just the way they are forever. There is so much good at each stage. It's hard to soak it up before it's gone.

November

My goal is to post at least once a week. (Kevin made the Oct daily goal) Working full time has been making it more difficult to keep this up dated. Once the kids get to bed and everything is clean I have no patience for our slow computer. I hate that I haven't been keeping up. It's taken a day when we are all home sick to finally take the time.

Here's some pics from our fall.

Trick or Treat with a fire fighter, a monkey, and a princess.

Leaves

Pumpkins

French Fry Face

Last night at dinner Lucy said, "Look Mommy a face." She had created this french fry face. Too cute!

DSACO Calendar

At the Buddy Walk we got to see the new DSACO calendar and were super excited about the fact that one of the pictures we submitted was selected for the month of November. There is a new layout to the calendar this year and we love it! Thanks for all your hard work Gayle! If anyone wants one let us know.

Free Books

Last year Lucy's preschool sent home a flier informing us about Dolly Parton's Imagination Library. If we signed up the kids they would receive a free book every month until they turned 5. Lucy didn't quite make the cut off but Simon and Ian did. Every month we get two books in the mail. So far they have been big hits. Tonight I asked Lucy what her favorite book was and she said, "Wild Little Horse" It's one of the ones we got in the mail. Simon's favorite is "The Little Engine That Could." I can't wait to see what we get in the mail this month.

Some Days

Some days I almost forget that we walk a different road. Most days I defiantly feel "more alike than different. "

Then occasionally a day comes by, they sneak up on me, and I feel different.

Today was one of those days. Thankfully they don't last long!

Expectations

Every week I pile the kids in the van and drive to Columbus so that Lucy can go to her tutor, Ms. Joanne. Ms. Joanne spends her whole week tutoring kids with Down Syndrome and she is quite good at it. What I like about Ms. Joanne so much is that she expects a lot out of Lucy and she gets a lot out of Lucy. Lucy sits in a chair and does work with her for an hour straight without a break and she never complains. She works on reading, math, and other important skills for school. Lucy has accomplished so much we never would have known she was capable of doing if we didn't have Ms. Joanne saying she can do it and then helping her do it.

People with Down Syndrome can do so much... we just need to expect it out of them just like we would expect it out of anyone else.

Cheerleaders say, "Yeah Lucy!"

Wow! What a year at the Buddy Walk this year! It was cold. It was windy. It was rainy. But in so many ways it was the best year yet!

It is hard to describe what is so great about the Buddy Walk. I'm sure many people like different things best, but from this parents perspective it is so wonderful to see so many people celebrating my daughter. They understand how wonderful Lucy is and they see of what great worth and value she is. They see how much she has to offer our world and they want to include her in their lives. Thanks!

When we got home I asked Lucy what she liked best about the Buddy Walk. She said, "Cheerleaders say, 'Yeah Lucy!'" When we actually go on our "walk" around Crew Stadium three group of cheerleaders were stationed in different places cheering the teams on and making up cheers dedicated to each "Buddy." Whenever they cheered for Lucy she would just light up. So thanks to the Cheerleaders from New Albany, Gahanna, and the other High School I just can't remember right now.

Thank You!

As we get ready for the Buddy Walk tomorrow we are amazed by how much support we have received. We have over 40 people walking with us and we have raised over $1300. Thank you so much for all your support!!!

But we are so thankful for more than just the support we have received for the Buddy Walk. Every day, in so many ways people support Lucy and our family. So many people accept and include our daughter in their lives. They value her, love her, and help her become all that she can be. Thank you!!!

Lucy on TV

By the way October is Down Syndrom Awareness Month. So in honor of this we will try to blog every day throughout the month. Well, we are one for one so far!

Come out and join us this Sunday at the Buddy Walk at Crew Stadium! Hope to see you there!

Madi and Luke Day

This morning Simon and Lucy came to wake me up announcing that it was Madi and Luke day. We were so excited to spend the morning with Carey, Ben, Madi and Luke. We picked some apples and then had a picnic lunch at a playground. Our kids play well together so it's getting easier! At the playground I was able to sit on a bench and chat with Carey while the kids played!

We can't wait until we see you again!

Dance Lucy Dance!

Lucy has started dance class. I'm pretty jealous. I love dance but never had the chance to take classes when I was younger. Lucy is so excited that she could jump out of her tights. She's in an explorer class. It covers ballet and tap. We go on Friday afternoons and you should just see her jump when they call her class. She dashes away without a care that I'm not coming along. I wish I could watch her. I can't wait for the recital!

First Day Of Preschool

Thursday was Simon's very first day and Lucy's third first day. They are in the same class and so far so good.

Sweetpea Beauty Premier

Princess Lucy and Princess Halle at the Sweetpea Beauty Premier.

Ian's definition of striking it rich. A paci in the mouth one in each hand.

We only give him them at bed time so occasionally I'll see him go upstairs and search under his crib to find some. He'll walk around for quite some time holding them and trading them back and forth from mouth to hand.

Ian

Filling a bird bath with rocks.

Trying to climb on top.

Yesterday I caught him standing on top .... standing on top of the Cozy Coupe. I tried to get a picture but right now both of our cameras aren't working.

Isn't he just so cute!

Summary

It really is my goal to post once a week but since I've failed there I'll just give a little summary of what we've been doing.

Last weekend we had a garage sale. I spent the beginning of the week cleaning out closets, under beds and in the attic. We had a room full of things to sale. It was time to let go of all of the baby stuff. I was only planning on having the sale on Saturday but when I saw my mounds of stuff I decided to extend it to Friday. I didn't want to bring any of it home. I tried to price the clothes very cheap so people would buy a lot. They did. Many walked away with a garbage bag full. There were moments that my heart hurt as I saw a little outfit go. They were buying some sweet memories. I saved just a few of my favorites and rested in the fact that we would make more memories.

Yesterday we made a trip to Children's for a rheumatology check up. The doctor was very pleased to see that Lucy is still having no signs of the JRA since we have decreased her meds. We were able to bring her dosage down even more. A few months ago we started at .3 and we are down to .15. We continue to pray that the JRA will continue to stay away and that we can get her off these meds. Thank you Grandma for watching Simon and Ian during our appointment.

In the evening we attempted to attend the Buddy Walk kick off meeting. It was not very successful. The kids were not up for sitting and listening. I know at some point in time things will start to get easier. We aren't there yet. Right now everything we do is so much work. We should have known better.

Today we have no appointments or places to be. Hopefully it will stay that way.

Today's goal... Get Buddy Walk "stuff" rolling.

Summer Speech

We started summer speech this week. We decided that we could just do Joanne and speech this summer. Lucy is working with a different therapist than she does during the school year. This would make for a grand total of 7 different speech therapist she has had. Each has their "way" of working with her. Each brings their strengths and knowledge into her sessions. Two therapist ago I mention how I own the Talk Tools whistles and if she wants I could bring them in. She says she doesn't think that is what Lucy needs. (strengthening)

So we start with therapy this week and what does Lucy do on day one, a whistle. I tell the therapist that I have the whistles and she ask for them and says that's what they will be working on. Our homework, eating applesauce and pudding with a straw and to practice the whistle. (strengthening)
As I said... each brings their strengths and knowledge into her sessions.

All of this makes me realize, once again, how responsible I need to be for Lucy's education. You would think that as kids moved from one therapist to the next that the therapist would communicate. That hasn't happened for us. One writes the goal with our input but the next one interprets it differently than intended. It's our job to keep things connected for her. We are the constant.

Children's Garden

Simon getting his "tickets" for the train.

Another beautiful day calls for another outing. Today it was lunch at the Children's Garden here in Mount Vernon. It's such a beautiful place. The only difficult part was keeping track of all three of the kids. They all seemed to want to go in different directions. We made it work though. A successful outing!

Blueberries

I have been loving the weather this week. It makes we just want to go out and do some special activities. Yesterday I took the kids blueberry picking. There is this farm not far from our house where you can get blueberries for free. All you have to do is give them half of what you pick and then you get to keep the rest. You can also buy what you pick but I was all about the free!

I was surprised about how well they did. Lucy and Simon did well with picking only the ripe berries and Ian was a trooper just hangin' in the stroller.

Texas

Well, we are home from our family vacation. This year we spent a week with Kevin's sister and his parent at his sister's house in Justin, Texas. We had a great time. The kids has so much fun playing with their cousin. It was so nice to have help with entertainment! I was able to read two books while we were there.

We swam, went to a free movie, and the kids took their first trip to Chuckie Cheese. We were also able to spend a day with Kevin's grandparents.

One of my favorite moments was when Kevin and I took Simon to the Texas Motor Speedway. Simon hasn't seen any Nascar but is a big fan of Cars. He saw a car that was blue and insisted that it was King. He kept asking for McQueen.

B-Day Party

We had a great time at Lucy's 5th birthday party. We were able to have it at the school where I work. There's an amazing playground, tons of space to ride bikes, and a shelter house with picnic tables.

A lot of school friends and neighbors where able to come and celebrate with us. We are so lucky to be surrounded by so many wonderful families.

I wish I had some playing pictures. I know that my friend Amber took some so I'm hoping that she'll pass some along.

We have so many reason to celebrate her first 5 years of life.

Lucy is 5. A reflective post is coming.

Pool Pictures

I love a new toy.

One where I get to sit and watch them play.

For awhile it gives me a break from the countless games of hide-n-seek, red light, green light, and chase. This toy isn't new but while I wasn't looking Lucy climbed up on the water/sand table and posed with tongue sticking out.

Cake

We had a family birthday party for Lucy a little early because Nana, PawPaw, Aunt Jessica, Uncle Dave, and Julian are leaving for Florida. I just thought I would share the picture of her cake. I've started getting them from this local bakery. They cost a little more than wal-mart but are super delicious and I'm always impressed at the design. Each cake is unique. You just tell them a theme or colors and they create it. I can't wait to see the cake for Lucy's friend party.

IEP

On Monday the 24th we had Lucy's annual IEP meeting. Prior to the meeting we sent letters requesting that everyone would attend and that we would be able to have a chance to see the goals ahead of time. That worked out great. We were able to ask our questions and get things ironed out before the meeting.

As we were all standing in the hall waiting for them to clear off a table, and I looked around at all of the professionals who invest their time and knowledge in my daughter and felt very overwhelmed with feelings of gratitude, and maybe a little guilt.

Classroom teacher, Assistant Teacher, Aide, Physical Therapist, PT Assistant, Occupational Therapist, OT Assistant, Speech Therapist, and City School Representative.

The meeting went well. Every party just talked about what a cute little girl Lucy is and how much they have seen her grow this year.

Lucy came with us to the meeting and just sat in a chair and colored and put together puzzles. She would cover her eyes and act shy when she realized we were all talking about her. I felt so proud of her. She's a big girl!

Here's an example of how much she has grown this year. The first picture is a self-portrait from the beginning of the year and the second one is from the end. These were done on her own! That is her name on the bottom of the second one. (the shadow is from the camera- I decided not to mess with doing it again)

18 Months

This post is a little delayed. Ian turned 18 months on May 7th. I've been waiting to snap a cute picture and to actually have enough mental energy to write him a worthy post. I'm not sure if the second part will ever arrive so I better get on it.

He really is a great little baby. He's talking more and more. The word I hear him say most often, well other than Mommy, is stuck. Which sounds more like guck.

He loves to be rotten. Loves to be chased. He'll sneak something he knows he shouldn't have and then give you that little rotten smile and take off.

He is pretty much refusing to be fed from a spoon unless he is in control. This is an issue for me. I usually wait a while on the self-feeding with utensils because of the mess. The kids often have yogurt for lunch and he won't eat it unless he can feed himself. It starts off with a spoon but that ends up on the floor and the next thing you know his hand is in the bowl and he's painting with the yogurt. So for now I've stopped the yogurt.

He loves to be outside. You will often find him digging in the dirt and putting rocks, sticks, or what ever else he can find in his mouth. I probably say, "Ian, no mouth." 30 times a day.

He still likes to climb and stand on things: the kitchen table, Kevin's desk, the kid's picnic table. He's getting really good at getting down so I'm feeling a little more at ease.

He loves baths, sitting in a lap with a book, dogs, broccoli, cheese, pretzels

He has the sweetest laugh.

I don't ever want to forget these days. Especially since he is our last. I want to bottle up his laugh, smile, and the way he says guck and just keep it forever. I always think I'll remember but they change so fast and it becomes a blur.

Ian I love you. I'm so thankful for you! I hope and pray that we help you enjoy your place as the youngest in our family. My heart is so full!

Can She Read?

I took the day off work yesterday and went on a field trip with Lucy's preschool class. We went to the Knox County Airport. It's very small. No security checks necessary.

Like most preschool classrooms Lucy's has some morning routines she needs to complete. One of them to to move a clothes pin with her name from the home side of the chart to the school side.

Lucy is a jokester. She likes to do things just to be funny; for example, sitting on the potty with her pants on, stealing your seat when you get up and many others.

So there we are at the chart when another mother and her son come up. Lucy grabs a name, gets that rotten little smile on her face, and looks at me. "Lucy, is that your name?"
"No."
"What does that say?"
"Tommy."
"Find Lucy."
"Lucy is that your name?"
"No"
"Whose name is it?"
"Ryann."
"Find Lucy." At this point the mom looks at Lucy then back and me and has the biggest look of shock on her face! "Can she read?" I reply with, "She's working on it," and Lucy goes through the game with one more name before she finally decides to choose her own.
The look on the mother's face was priceless. I love moments like that. A moment went Lucy gets a chance to knock someones socks off. A chance to tear down some of the walls of stereotype that are built around people with special needs. It was a good moment.

Birthdays

Turning 5 seems to mark a turning point in birthdays. For us 1-4 has been a gathering of family and a few close friends. I’m not sure if this is how it is for everyone but 5 seems to be the start of the "friend" parties.

We have been to three parties for kids from Lucy’s preschool class. The families have been kind enough to invite everyone from their class. So far we’ve made a point to go to every party we have been invited to.

To be honest they are pretty difficult for me. The kids in Lucy’s class are very kind to her but at parties it’s pretty evident that she is an outsider. She needs a little more help when it comes to the games and sitting and watching the presents being opened. I’m always on guard wondering if she has gone upstairs and found her way into the parent’s bedroom. I’m totally cool with everything but when I see her being left behind it’s hard on me. I wish I didn’t care what others thought but I always wonder what other parents are thinking. Usually I can brush most of this off because Lucy hasn’t quite caught on yet. Recently I’ve seen a look on her face that is making me begin to wonder if she is starting to notice. Ouch!

Some parties are easier than others. This past weekend we went to a turning 5 party for a girl in Lucy’s class. It was great… no organized games, the kids could go upstairs or downstairs. They played, opened presents, ate cake (she’s a pro at this), and played outside. The little girl’s parents were great in the way they talked with Lucy and made room for her to be herself. She is always a big hit with adults.

Spring Break

Lucy and I were on spring break last week. I couldn't have asked for a better week of weather. It was so beautiful out. I thought I would just recap our special outings.


We headed to the Blue Jackets game thanks to DSACO and RJ Umberger. We had a great time. Ian got some one on one time at Nana and Papa's house. I think the popcorn was their favorite part.

We also took a trip to the zoo. The zoo gets more enjoyable every year. This year we are down to one stroller. We take the double stroller. Ian stays in most of the time. He gets a little freedom at the aquarium. We save the second seat for time out purposes. Lucy is still working on staying with us.

We played in the backyard and took walks on the gap trail. It was so nice to bust out the t-shirts and shorts. I thought Ian looked so cute in his shorts, short socks, and little tennis shoes. I kept trying to get a picture of him but he wouldn't stand still long enough.

It was a great week! I was so sad to see it go. I can't wait until summer!

Donuts....mmmmmm

We live in a small neighborhood and there is only one bus stop for the high school and middle school students. Every Friday our church brings donuts and hot chocolate to the bus stop. We are often in charge of getting the donuts.

Donuts are one of Lucy's favorites.

On Friday at around 1 am I heard Lucy and went into her room I laid in her bed and we fell back asleep. I crawled out around 3 am. Friday morning when the alarm went off at 5:45 I noticed a light coming through our bedroom door. I walked downstairs and saw the donuts on the dinning room table and noticed one box was missing. I thought to myself, "Oh no!" I found Lucy at the kitchen table. All of the lights were on. She had opened a package of donuts and gotten herself a cup of water... spilled that cup of water.... and gotten herself another cup of water. The icing was eaten off the top of one donut and another one was out and ready.

She apparently: opened her bedroom door, walked down stairs, (in the dark!), turned on the lights and helped herself to breakfast.

We even have a monitor in her room. She must have moved quietly. I wish I would've grabbed the camera.

Simon's Photography

My Favorite Things By: Simon