Happy B-Day Simon!

On January 29th 2007 Simon was born. This past Saturday he turned 4 years old. My heart is so full as I sit here and think of all the ways we love him. These days he loves to play with trains and airplanes. His imagination play is really expanding. This morning I quietly listened as he talked back and forth for his train. He is such a cuddlier. I soak it up as much as I can because I know those days are numbered. He says about 30 too cute phases a day and I think to myself "I got to write that down." I never do. I need to! Right now his favorite show is Dino Dan. He loves chicken nuggets and ketchup. His favorite color is white, "because that's the color of milk." If I could freeze him at this age I would be very tempted.

Here are some pics from our celebrations:

Cake: Another one from Pink Cupcake... It was pretty awesome!

A new airplane. Imaginex- His favorite.

Lunch at McDonalds with the Parrys.

Sick

Lucy got sick again last night. Before this winter hit we had been very lucky in the health department. She hasn't had any ear infections or strep, and she would maybe get throw up sick once a year. So far this winter she has had 2 sinus infections, a skin infection cause by the sinus infection, and has been throw up sick 3 times. Then the MRI scare on top of that. Thankfully she is a good patient. I cover the living room in blankets and towels so that clean up is easy in case I don't get to her in time. Her timing for throwing up is very predictable. Last night I was able to listen in her monitor from my room and get to her room in time so that she made it to the trash can. That lead to a much easier clean up and since I didn't have to change sheets and clothes she went right back to sleep. (unfortunately I didn't sleep all that well)
I don't know why she is getting sick so often. The meds she takes for her JRA are immune suppressants and they haven't made that much of a difference before but I'm beginning to wonder if for some reason they are causing her immune system to be extra weak. We are almost to a point where we can stop the meds but she's not quite ready. I wish we could just stop.
I'm feeling more worried for her and really wondering why she is getting sick so often.

MRI

Last Thursday we made the trip to Children's for Lucy's MRI. So many emotions and nerves go into taking your child into the hospital, handing them over to a doctor, letting them put your child to sleep and you walking away. Considering all of that, we had a very calming experience. The staff and doctors were amazing.
Once we got in the back she changed and then headed to the toy room to pick out a toy. She chose a Snow White puzzle. She didn't want to sit on the bed so we turned on Disney to help. She was really curious about how the sound come out of the hand held speaker.


After doing the puzzle a couple times they came back to get things rolling. Everything went smoothly. When she woke up she was a little weak but returned to normal within an hour or two. We never got a direct answer about when we would hear the results so Kevin called Children's on Monday and a someone let him know exactly what we wanted to hear. Everything was normal. Big sigh of relief! So it looks like that's just the way her eyes are.



We were so proud of her though everything. She was such a good patient and a very cute one!

Glasses

And here they are... She's pretty stinkin cute! They have taken some getting used to. They've been hidden, chewed on, thrown in a parking lot and bent. We've only had them for 2 weeks! Thank goodness they are flexible and durable. If they last a year it will be miraculous. We think they make her look older.

Chirstmas Pictures

Preschool Christmas Program: Take note- first and probably last time Lucy isn't the shortest in her class. It helps that it's a 3-5 class.

This was the face she made while playing the drum. She means business!

Christmas Teaser

We left the camera at Nana's house so the only picture I have is what my sister posted on FB. We had a wonderful and relaxing holiday. I'll write more once I can add photos.

Photos in Lucy's new glasses coming soon!

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.