Lucy Kay

From Enbrel to Ibuprofen

2012-02-20T15:14:00.002-05:00

We started Lucy's journey with JRA years ago and in January we turned an exciting corner. She had been on Enbrel and once we saw that it was working and she didn't have any symptoms the doctor started slowly decreasing her dosage. In December she had been free of symptoms for 6 months and was on a very small dose. Then last month she was taken off of all meds. CELEBRATION!
These last couple of weeks we have noticed that she was starting to limp a little and was complaining about her toes. We even got a call from school because they noticed that she was walking on her heals. The doctor suggested her taking 10ml of ibuprofen 3 times a day. I'm not too happy about it. I feel a little bit better after talking to the nurse today. We don't want her to be restricted or in pain and the side effects of ibuprofen are much less than the side effects of Enbrel.
To be honest JRA wasn't keeping me up at night. 75% of kids who are diagnosed grow out of it. I've just always felt that Lucy was going to be in that 75%. I'm starting to get a little nervous. She experiences most of her pain in her wrists and feet. If this pain continues it could really impact her progressing. I hate that the only thing we can do to help her is to put her on these serious medications. There's no surgery or anythings we can do to make it go away.
JRA is starting to keep me up at night.

Decisions, Decisions

2012-02-18T14:47:00.002-05:00

For Valentines Day my grandma and grandpa sent each of the kids $5 in a little card. The cash has been burning a hole in their pockets since the day it arrived. Last week while Simon and Lucy were at school I took Ian to spend his money. He knew exactly what he wanted. We went to the Cars section and I showed him the cars he didn't have. He saw what he wanted and picked it without a second thought.
Today I took Simon shopping with me so he could spend his money. It was a totally different experience. He wanted to start off in the Imaginext section. Not much there for $5.
Then it was on to Thomas. I lined up the trains that he didn't have and he looked but was more interested in asking how much the bigger items were. I think he was hoping I would cave and give him some more money. Then he wanted to go check out the Cars. We walked through the same process there. Pointed out the ones we didn't have but he kept eyeing the bigger items... Then he decided he wanted to go to the Lego sections. Same process. "How much is this?" "It's $20. You can choose from these." "How much is this?" and so on. I kept threatening to choose for him or to make him wait if he couldn't decide. We finally made our way back to the Cars aisle and he decided on a car he didn't have.
I can't be too hard on him though because unfortunately I'm more like Simon than Ian. Sorry to my Mom and all my friends who have ever been shopping with me.

I'm always surprised on how different my kids are. Simon takes on the world with a totally different view than Ian.

Valentine's Day

2012-02-15T15:13:00.001-05:00

There just something that I love about Valentine's Day. I think it goes back to my time as a classroom teacher. I loved the fact that everyone gave everyone a valentine, and families worked on boxes together. I love my kids with every fiber of my being and it's another day where I get to show them that I think they are special. And it doesn't come with all the baggage of Christmas: hype, materialism, and all the running around. It's a simple holiday and I love it!

This year I discovered that Walmart has photo vday cards. I got cards for Simon and Lucy for only $7.00. Lucy choose Tinkerbell and Simon choose Cars 2 (big surprise). Each card had a photo and a message. Easy. I know it would have been good to have them practice their name 20 some times but I went for the easy route since I didn't plan ahead as well. I did have them hand write all of their friend's names though. I decided to write each name in yellow marker and have them trace the letters. It worked pretty well.

That evening we had a little Valentines party with some friends. We had heart pizza and decorate your own cookies. It was perfect.

I was surprised on how easy it was to shape the pizza into a heart. I'm going to try some other shapes just for fun.

I can't wait until St. Patrick's Day!

100th Day of School

2012-02-08T15:52:00.004-05:00

Last week Lucy's kindergarten class celebrated their 100th day of school. Each child was supposed to make a shirt with 100 of something on it. We went with 100 wiggle eyes. We glued them on with fabric glue. To my surprise all 100 were still there when she got home. I think her favorite part about the shirt was how it sounds when she jumps up and down. I decided to put two pictures up. On with her in her new glasses and one where you could see our handy work.

Happy Birthday Simon!

2012-02-02T12:37:00.004-05:00

Of course I have a million excuses on why I haven't been posting. I guess Simon's birthday is a great motivation to get back in it.

Notice how many girls... we need more friends with boys

I can't really believe he is 5. 5 is so big. I'm so proud of Simon. He is such a great kid. He's loving and kind. He is the perfect middle child.

We had a great time celebrating his birthday. One bonus of living on a college campus is that we get to use the facilities during breaks. We were able to have his party in the game room. It's always hard to decide where to have winter birthday parties. We got out the bouncy house, I made some marshmallow shooters out of cups and balloons, and we had a homemade cake and snacks. Now that I'm staying home and we are on a tighter budget I've had to let go of our Pink Cupcake cakes. Thanks to Pintrest I found some great ideas.

All about Simon:

1. My pickiest eater

2. Still loves Thomas and Cars

3. Loves School

4. Hates to clean up and is hard to bribe

5. Loves tortillas with cheese, broccoli, nuggets, and ketchup

6. He's so excited that he is learning to read

7. Finds wonder in the world. (ie... "I can't believe it yesterday I was 4 and today I am 5.")

8. Currently his favorite show is Octonauts.... it changes often

9. Still on the early to bed and early to rise schedule

10. He is just all around awesome!

Wolf Run

2011-11-14T20:28:00.003-05:00

So many days it still seems like Kevin and I keep trading time with the kids. He comes home from work, I go tutor, I come home, he goes back, he goes to play soccer, I go for a walk. On Sunday I decided to break the pattern and we all went to Wolf Run for a great family hike. The kids played with big sticks, climbed over logs, and looked for crayfish. It was a great way to spend a Sunday. One of the best things about Mount Vernon is our parks.

Ian

2011-11-07T15:15:00.001-05:00

Three years!

(I started this yesterday and wanted to finish it but I fell asleep at 9:00. 9:00! This time change has been tiring.)

I can't believe how fast he has changed in just 3 years. We couldn't be happier with Ian. He has given me the gift of working on my parenting skills. I'm hoping the 3s are easier than the 2s.
He is so stinking adorable that he has to be a little rotten for it all to balance out.

Here's a few thing about Ian:

1. He loves to play with toy animals. He got a safari set for his bday and he played with it all day yesterday and that's that first thing he went for this morning.

2. He has a cutest pout you have ever seen!

3. His favorite foods are probably pepperoni and fruit.

4. He loves little babies. I watch a 4 month old 2 days a week and Ian is such a good helper.

5. He wants to be independent. Doesn't want me in the bathroom with him, doesn't want to hold hands in a parking lot, wants to do it himself. Not an easy personality trait when you are 2 but I know that I will be thankful for it later.

Ian- I love you so much and I'm so blessed to be your mommy. Happy Birthday!

Where Did October Go?

2011-11-03T10:44:00.004-04:00

I thought I would be so much better at this once I started staying at home. Nana gave the kids Cars 2 last night and I gave in and let them watch it this morning. That usually means I read a bit but I only have one chapter left on the book that I've been reading and it's really good and I just don't want it to end... and I haven't decided what to read next. So here I am. There have been so many bloggable moments that I will want to remember that I have let slip by. Here are a few I've held on to.

Lucy-

She is doing so well in Kindergarten! Her teacher pulled me aside one day while I was there volunteering and told me about how all the kids don't really believe that is 6 because she is so small. Then she shared how one day while at reading group the teacher was introducing color words to the kids and Lucy was the only one who knew them. She said the kids' eyes got huge and they looked shocked. Thank you Miss Joanne!

So far I have only heard good reports except that she sometimes has trouble with transitions: lining up on the playground and leaving play center. She is doing better though. We have conferences next week so I'm sure we will get a better picture of how she is doing.

Simon-

He is doing really well in preschool. This year he is at a new preschool and they do a lot more writing. Its been fun to see him spelling and writing his numbers. He still asks so so many questions. He is curious about how the world works. He also loves to say, "that's odd."
He loves living here on campus and loves the students.

Ian-

We started potty training Ian when he was almost 2 1/2. He has learned the quickest and is dry most mornings, but has had more accidents than Simon and Lucy combined. This event from potty training describes his personality in a nutshell.
So for Simon I had a couple pairs of plain white undies that he would have to wear if he had an accident. It worked like a charm. When Ian kept having accidents I remembered the underwear trick and pulled them back out. I explained to him the process and for the next couple of days what underwear did his choose to wear to start of the day.... the white ones.
He has had to stay on the motivators (gummy worms) much longer than the other two. He knows exactly what he is doing.

Buddy Walk 2011

2011-09-26T16:04:00.002-04:00

We couldn't have asked for a better day for the Buddy Walk this year. This was our wonderful team. It means so much to us that our family and friends, old and new, come out and surround us. Every year as I look out at the sea of tail gaters and I'm always touched by the people who gather to celebrate people with down syndrome. I still tear up as we round the corners of the walk and hear the high school cheerleaders cheering for Lucy.

Thank you to all that came out and to those who supported us with a donation!

Dr. Spencer

2011-09-07T20:38:00.002-04:00

Today Lucy had an apt. with her rheumatologist and minus the fact that we were there for 2 hours because we she was seen twice, once by a resident for practice, I'm assuming, and then again by Dr. Spencer. It was another encouraging visit. He asked if we wanted to totally take her off her meds. I was a little nervous because he has said so many times that we want to make sure she is clear because once we take her off it could come back and come back stronger. He is pretty sure it's gone but she still pulls back a little when he pushes her left wrist. So we decided to cut the meds in half and give it 3 more months. It will be so good for her to finally get off these meds.
He is such a good doctor. He listens and I feel like we work together to do what's best for Lucy. I know that it's a busy office but I always feel like he gives us the time we need.

Simon's First Day

2011-08-31T13:17:00.002-04:00

Today is Simon's first day of preschool. He is at a new preschool this year and it's right outside our front door. It will be nice to walk instead of driving across town. Simon was really excited. The only one that cried was Ian. He wanted to stay and see the gold fish. Hopefully I can prove myself as fun as gold fish.

I took Simon to get his haircut before school and he sat and told the the lady that was cutting his hair about how he was going to a new preschool and about how he will miss all his friends and his most favorite teacher, Miss Laura.

I will miss them too!

Books

2011-08-27T19:21:00.002-04:00

I have read 17 books this summer. I'm a fast reader and I read in stolen moments, while I'm drying my hair or waiting for water to boil. I've also been reading book candy. I have read the entire Stephanie Plum series by Janet Evanovich. They were funny and required no thinking. A perfect way to get lost. Once I finished Smokin' Seventeen. I went back to my list of books I want to read. Poisonwood Bible was near the top and in at the library so it was next.

As I've cracked its pages I find my brain waking up and stretching itself around the beautiful language and craft.

You know those weekends when you go to your grandma's house and eat all the junk that you don't keep in your house and it taste so good to just eat candy. Then you go home knowing you need to return to fish, brown rice, and broccoli. At first you might be resistant but then you realize how much better good choices make you feel. Nourishment.

That has been my reading journey this summer. I have read 17 books worth of candy and really enjoyed it ..... but once I started getting lost in the craft of Barbara Kingsolver I realized how much I missed the nourishment that comes from a well written book.

Will I read 18? You better believe it!

First Day of School

2011-08-24T20:51:00.003-04:00

No tears for Lucy or myself. She was so excited and as soon as I dropped her off she got right down to playing. When I picked her up at the end of the day she was able to tell me some names of the kids she played with and the title of the book her teacher read to her.

My mom and a friend called me to check up on me after I dropped her off. My lack of tears surprised me too. I think it was because I handed her over to friends. I have worked at that school for 11 years and most of the teachers there have watched her grow. I know that I am putting her into good hands.

Buddy Walk

2011-08-20T08:31:00.004-04:00

With everything that has be going on we are a little behind on getting our team together for this years Buddy Walk.

When: Sunday, September 18 10:00 am

Where: Crew Stadium

What: The Buddy Walk is a fundraiser for the Down Syndrome Association of Central Ohio and the National Down Syndrome Society. These organizations provide information, education, and support for those with down syndrome and their families. They provide community for individuals and their families.

Why:

Who: YOU!

How: You can support us two different ways. You can make a donation to our team or if you would like to join us at the walk you can join our team.

Donation: Go to http://www.columbusbuddywalk.org/ select donate then donate to a team and our team name is: We Love Lucy.

To Join our team on the day of the walk: Go to http://www.columbusbuddywalk.org/, select registration, select resister, you will go though 4 steps on the 3rd step you will be asked if you want to join a team. Join our team: We Love Lucy.

The registration fee for the walk is $21 per person of which $10 is tax-deductible. Your registration fee includes an official 2011 commemorative Columbus Buddy Walk T-shirt. You should resister by September 4 so that you will be guaranteed your shirt size.

Joining our team will also get you in to our exclusive tail gate party that will include food, games, and a meet and greet with Lucy. =)

If we raise $1,500 by August 28th we will get our team name on the back of our shirts. We are cutting it close this year. Don't wait, sign up now!

Rhythm

2011-08-17T14:52:00.003-04:00

I like a plan or schedule to follow. I like when my days have a rhythm. The move disrupted my summer flow. We are now back into a lovely rhythm. 3 days a week I begin with a run then after breakfast the TV goes off and we head for a walk around campus. Depending on how well everyone is listening we can often go stroller free! After lunch I try to do some "school work" with Lucy and Simon. Lucy is working on reading and Simon is tuning up his fine motor skills and I try to distract Ian so they can focus. Then we spend the rest of the afternoon playing in the shade of two large trees in the court yard. The kids ride their bikes and play in the pebbles. To add some variety we take tips to Twin Oak or to the Children's Garden. I'm loving our days together. I could stay in the pattern for awhile.

Then I looked at the calendar.

In one week.....one week... Lucy starts Kindergarten. I've been so excited for her. She's been in preschool for 3 years and I know she's ready. She is just such an important part of my day and now she'll be gone from this great thing we've got going. I haven't cried about her going until this moment. Our routines will feel off without her.

I'm trusting Mrs. Thrift to create a new rhythm for her. One where she will grow and flourish more than she would here. Books and art and music and play dough and a group of kids, all different, growing and learning together. It's hard to be sad for too long. I'm so hopeful about what this year holds for her. I hold on to that when I feel sad for us left behind.

We will create a new rhythm. One that includes quiet afternoons with just Ian and I.

July

2011-08-10T16:21:00.002-04:00

Update continued...

Final update:

Thankfully July brought some answers. A job came open at MVNU. Kevin applied, interviewed and the job was offered. So instead of moving to Oklahoma or Florida we got to move down the road. We thought about putting our house up for sell but it didn't look good. We found some great renters and have moved on campus to Oakwood Hall. This also has give me the opportunity to resign from teaching and stay at home for these last few years. In some ways the decision was easy and in other ways it was a sacrifice. I truly love teaching and love the job I had.

We've had the normal July celebrations... fireworks, picnics, playing at the park, and trips to the zoo.

Now that we are moved and settled I hope to return to keeping up with the blog.

Today the first group of students are moving back on campus. Soccer players. We've answered questions, handed out bed pegs, and welcomed fresh faces. I'm so excited for each of them.

More to come...

June

2011-08-10T15:44:00.004-04:00

Update continued...

June brought more waiting on the job front... we'll let you know in about 2 weeks turned into 8 weeks.

Lucy graduated from preschool for the 3rd time. Simon has his first preschool graduation. We also learned that Miss Laura will not be returning to their classroom. We have been very blessed to have her has Lucy and Simon's teacher.

We also celebrated Lucy's 6th birthday. Where has time gone. She's 6 can you believe it?

May

2011-08-10T15:34:00.004-04:00

Update continued...

May was when things really began to get moving. Kevin began to feel some direction about his next career step and started applying for Resident Director positions at colleges. He interviewed in Oklahoma and Florida. The waiting game began.

Lucy had her first dance recital. She was so excited she should barely contain herself. She did so well and is a performer at heart. She couldn't wait to get on stage and didn't want to leave when her performance was done.

"Lucy, smile pretty!"

April

2011-08-10T15:16:00.003-04:00

Update continued...

April brought the IEP season and Kindergarten registration. Thankfully we made it though successfully. With only a few rookie mistakes. Lucy will be attending Kindergarten at Twin Oak... her home school. She will be there all day. In our district there is half day K. So for the morning she will have full inclusion and then will receive therapies and some special instruction in the afternoon. We feel so lucky to have her at Twin Oak.

Here are some pics from K registration: She was very impressive!

Such a big school for our little peanut!

Showing off to her OTs and teacher.

March

2011-08-10T14:53:00.003-04:00

It's hard to decide where I should start since its been so long. These last months have been at times overwhelming and our patience was tested. We have finally settled so it's time to share on what's been going on and where we have landed.

At the end of March we found this last minute deal and headed to North Myrtle Beach for Spring Break. We usually vacation at the beach in the summer but we were able to enjoy it more since we didn't have to worry about crowds and sunscreen.

3.21

2011-03-21T20:19:00.003-04:00

Today is World Down Syndrome Day. A good day for me to pick up and finally blog. I'm so ashamed that it has been so long.

I wish we could've celebrated in some significant way but I didn't realize that today was the 21st until I had to fill out this form. To celebrate in a small way we let Lucy choose where we had dinner and invited our neighbors to celebrate with us. Here we are at Lucy's choice Pizza Hut.

So much has been going on it's impossible to capture it here. Today I'm just thankful that I have a reason to celebrate and I'm extra thankful for those that celebrate with us.

Happy B-Day Simon!

2011-02-01T17:27:00.006-05:00

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

2011-01-28T10:02:00.002-05:00

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

2011-01-26T20:16:00.004-05:00

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

2011-01-09T15:39:00.003-05:00

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

2011-01-09T15:07:00.006-05:00

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

2011-01-02T16:04:00.003-05:00

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?

2010-12-23T22:52:00.003-05:00

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

2010-12-01T13:34:00.006-05:00

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

2010-12-01T11:12:00.009-05:00

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

2010-10-16T15:57:00.003-04:00

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

DSACO Calendar

2010-10-13T20:43:00.002-04:00

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

2010-10-06T21:00:00.003-04:00

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

2010-10-05T19:59:00.002-04:00

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

2010-10-04T18:40:00.002-04:00

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!"

2010-10-03T18:39:00.004-04:00

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!

2010-10-02T21:00:00.000-04:00

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

2010-10-01T13:54:00.002-04:00

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

2010-09-19T13:19:00.002-04:00

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!

2010-09-04T14:11:00.002-04:00

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

2010-08-28T06:46:00.005-04:00

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

2010-08-08T15:47:00.003-04:00

Princess Lucy and Princess Halle at the Sweetpea Beauty Premier.

2010-08-08T15:47:00.002-04:00

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

2010-08-01T07:16:00.003-04:00

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

2010-07-28T08:13:00.002-04:00

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

2010-07-09T09:35:00.003-04:00

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

2010-07-01T13:51:00.003-04:00

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

2010-06-30T20:09:00.002-04:00

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

2010-06-30T19:53:00.004-04:00

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

2010-06-14T17:20:00.002-04:00

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

2010-06-06T15:09:00.003-04:00

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

2010-06-06T14:50:00.004-04:00

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

2010-05-29T08:14:00.005-04:00

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

2010-05-16T10:17:00.005-04:00

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?

2010-04-29T09:25:00.003-04:00

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

2010-04-21T20:53:00.002-04:00

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

2010-04-09T15:04:00.006-04:00

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

2010-03-26T08:00:00.003-04:00

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

2010-03-24T14:59:00.004-04:00

My Favorite Things By: Simon

Spring Has Sprung!

2010-03-11T19:09:00.003-05:00

What a relief it has been to be able to spend sometime outdoors these past couple of days. At the beginning of the week I was unsure if we would be able to get out because of the forecast of rain. Thankfully it has held off and we have been able to spend most afternoons outside.
It's amazing how much the kids have grown over winter. Lucy and Simon can now peddle the bike. Ian is a sturdy walker and no longer eating grass, rocks , or what ever else he finds out there. I can sit in a chair and just watch them play.
It's like our neighborhood has come out of hibernation. We chatted over the fence with our neighbors today while they were grilling out. I went into town for something and saw couples strolling hand and hand down the sidewalk.
I'm sure there's a chance that winter could cycle back around but I'm thankful for the break.

Monday we have a parent teacher conference. I'm looking forward to finalizing plans for next year. Right now I'm trying to record Lucy reading her sentences or a book to show to her teachers. I need to find some way to hide the camera. She's more interested in putting on show then reading.

Snow Day # 7

2010-02-26T09:20:00.003-05:00

Here we are in another snow day. I was happy with the 2 hour delay. Don't get me wrong I love being at home with my kids. Especially since I've had to work some full days this week. It's just that we are now 2 days into summer break. Boo hoo.

We have enjoyed these days though. We've made cookies, muffins, built tent after tent after tent. I'm trying to think about what special activity could be on today's agenda. I'm guess more baking and tent building.

In other news, Lucy has had some pretty big breakthroughs lately. For the past couple of months she has pretty much become an independent dresser. She can get everything on from undies to socks. She can even get boats on, if we don't make her wear her braces. She's pretty proud of herself.

She has been potty trained since 3. Most of the success has been because of our potty schedule. She rarely has any accidents. As long as we remember to take her on time. She has never had an accident at school. Her teachers tell us that she tells them when she needs to go. She just never tells us at home. For the past week or two she has started to let us know. She has always been telling us after the fact. She would say "Mommy, wet." Well now, she has been saying, "Mommy, wet" before she goes. We have been going praise crazy when she tells us ahead of time. We are keeping our fingers crossed that we are turning a corner!

Our Climber

2010-02-20T15:38:00.006-05:00

So I've been collecting these pictures for the past couple of weeks. I really wondered if I should even be taking them since this isn't the type of behavior I want to encourage. How could I resist? Ian is such a climber. He loves climbing on things and then standing on them. The Smith's were over for dinner on Tuesday and James said that he thinks Ian will diffently have a career where he climbs and then stands on things. He hates sitting. When he is in a high chair or even a shopping cart he always wants to get up on his knees. This has added to our parental work load!

Right now it's difficult to keep the kids entertained in one room for any extended period of time unless the TV is on. Simon and Lucy want to play games or puzzles but none of those things are possible if Ian is awake. Ian also won't stand for being gated in while others are free. My hope is in the fact this will pass quickly. I maybe be feeling more frustrated the third time around because I feel like I've been in this stage since 2006. Ian is our last, and thought there are many things I will miss about not having anymore babies around. This stage is not one of them.

2010-02-16T09:51:00.002-05:00

One of the benefits of having our kiddos so close together is that they can all fit in a lap at the same time. There's something so magical about holding all of them.

Labels

2010-02-02T11:52:00.002-05:00

The other day it was brought to my attention by Simon the power of labels and parents words. When Simon meets a new adult and we introduce him he often covers his head or hides behind a leg. Countless times we've said, "Oh, he's just a little shy." Harmless right?

We have this book titled "Children Are Like Wet Cement." I've never read it but the person who gave it to us passed on a little piece of wisdom. Children become what we impress upon them. I'm a firm believer in this and try saying things like.. "you are such a good eater... you are so kind to your brother.." and try to avoid comments like, "you are so stubborn."

We were at a friend's house for a party and gathering to pray before dinner. Simon said, "I don't want to go in .. I'm shy." Wait.. how does he know he is shy? Because I've said it about him over and over. I never thought that our comment "Oh, he's a little shy" could end up making him feel like he can't do something. There is nothing wrong with being shy. I just don't want him to decide he is shy because he's heard us tell others.

I think we all have those comments or labels that have stuck with us through the years. Maybe from a parent or teacher. Most likely the adult didn't realize what effect it could have. In my job I think about that all of the time. What comments just come flying out of my mouth that a kid could possible remember forever. Scary!

Simon can still hide behind my leg or cover his head when he meets someone. I just don't need to give it a label.

Happy Birthday Simon!

2010-01-29T19:47:00.003-05:00

Three years ago today. I can't believe it. 3 years old.

I was so nervous towards the end of my pregnancy with Simon. He just didn't seem to be moving so much. We went into the doctor and he gave me one more ultra sound. Estimated weight - 10.3 lbs! No wonder he wasn't moving as much. The doctor asked if I wanted to schedule a C-section. I asked if I could at least try to go as planned. That was on a Friday and he wanted to induce labor on Monday. Monday we headed into the hospital. At that point we still didn't know if we were going to have a boy or girl. He came out a whopping 9 lbs 14 oz.

He as grown into an amazing little boy. I looked back to my post when he turned two and was surprised how much is still very true. He is so loving and kind, shy and tender hearted. He is also all boy. He loves to jump and run and throw. He loves cars, trains, puzzles and books. He is becoming quite the helper. The other day he said, "I love sweeping the floor." I considered getting it on video so that I could save it for a later date when I'm sure he will no longer love sweeping.

2010-01-28T16:48:00.002-05:00

We've had quite a week. Simon and Ian have been a strange kind of sick. Every once in a while they throw up and don't have much of an appetite but other than that they are acting perfectly fine. For example, Simon has thrown up at least once in the past 3 days. Monday was at McDonald's. I decided to be brave enough to take all three of them to McDonald's playland by myself. We were just starting to eat and it happened. I had to rely on the kindness of a stranger to help me clean up and gather them into the car. It was one of those days when you are like.. "They are being so good. I bet I can do this." Then it all seems to fall apart so quickly. The second time was at lunch yesterday (at our house). Then last night was while he was sleeping. I was afraid last night would be a long night but it was just once and he woke up wanting to eat. I'm keeping my fingers crossed that we make it through today.

Snow Much Fun!

2010-01-22T13:48:00.002-05:00

Once the fridged temps finalliy broke and before it melted away Simon and Lucy were able to enjoy the snow while Ian napped. One of Lucy's favorite snow activities is making snow angles. As you can see, she also loves snowmen.

Vanicream

2010-01-15T13:26:00.004-05:00

This is my second product endorsement. Lucy's cheeks are very sensitive. During winter she always used to have cheeks that looked red and chapped. We tried lots of different lotions and creams. Our pharmacist suggested Vanicream. It has worked wonders. It has helped to prevent chapped skin and if we didn't apply it before she she was out it works quickly at restoring. If we apply it twice a day it seems to do the job. She doesn't even fight it anymore. Which make me pretty sure it is providing relief.

Posting Marathon

2010-01-08T15:17:00.001-05:00

Well, my computer and blogger and finally friends again. I've finally been able to update. Enjoy!

Madi, Lucy and the Boo Boo

2010-01-08T15:04:00.003-05:00

Here were are in Chicago waiting in the train station to take a ride down town. Aren't these two so cute!! You can also see Lucy's over bandaged hand.

Today we went to our doctor to have him remove the stitches. It was worse than our ER experience. The ER doctor told us not to mess with it and the gauze had clotted to her finger. To say the removal was painful would be putting it lightly! Good news- the doctor said it looks like it will heal well and he thinks that most likely her nail will grow back.

Thanks Aunt Susan and Uncle Jose!

2010-01-08T14:50:00.003-05:00

Chirstmas Day!

2010-01-08T14:22:00.003-05:00

On Christmas we always try to spend most of the morning together at our home. This year we had a little bit of a shorter time than usual because we were able to travel to Dayton to surprise our good friends James and Kelly with a special gift. Then it was to Pataskala to spend the day with my parents and my sister's family.

Here's more unsuccessful attempts at a picture by the tree!

Christmas Celebrations

2010-01-08T14:21:00.001-05:00

I can’t believe the Christmas season is over. Most decorations are down and it’s back to work. We have really had such a wonderful season this year. Simon and Lucy were so excited about presents and traveling to visit family and friends. I’ll just do a little recap with pictures.

This was Christmas with Grandma Marcum. Simon got a Thomas set that he insisted on sleeping with and as you can see Lucy is loving her new doll.

On Christmas Eve we celebrated with Kevin’s parents. It was so nice to have some one travel to us! This was our attempt at getting a picture by the tree.

Later that evening I made an attempt at a new tradition. We made a birthday cake for Jesus, and took some time to reflect on why we celebrate.

No Pictures

2010-01-06T21:25:00.002-05:00

I have this post all set up and ready with our cute Christmas pictures but for some reason I can't get a picture to up load.

Anyway the newest news in our house is that Lucy had a little mishap on New Year's Eve and we found ourselves in an ER in Chicago.

We had gone to visit our good friends Ben, Carey, Madi, and Luke. We had had a great time. Our kids play so well together. Madi and Lucy would have tea parties and Simon even shared his Cars cars with Luke. We had a crazy lunch at the rain forrest cafe and rode the train into the city.

All four of them were in a bedroom and then we heard a painful cry. Lucy's finger got shut in the closet door. We weren't sure how bad it was and if we needed to go to the ER but the bleeding wasn't stopping so off we went.

After a long wait and x-rays we learned that it wasn't broken but that the nail had just come out of the nail bed and that the doctor would need to do some stitches and try and put the nail back.

Our job was to try and keep her calm. We sang and told stories. Unfortunately because her nail is so small the doc wasn't able to get it back in place. She said that most nails grow back but it's not a guarantee.

I'm a little worried about the nail. It's on her right hand and what if she wants to paint her nails when she gets older? I really hope it grows back.

She has a huge bandage on her hand right now. I'd post a picture but stinkin' blogger.

The Littlest Chirstmas Tree

2009-12-27T20:18:00.007-05:00

We've had a busy Christmas break. I came here to blog about our family celebrations but as I was looking through the pictures I noticed I hadn't mentioned Lucy's preschool program.

This year instead of just songs Lucy's class did a little play. One of the teachers read a little story while the class acted out the motions. Guess who was the lead role? Our Lucy. The title of the program was The Littlest Christmas Tree. So, I'm not sure she was cast because of her acting abilities or because she is by far the littlest in her class. Either way she did a great job!

After the program we all went back to the classroom for cookies, punch, and a visit from Santa. Both Simon and Lucy hopped right up on his lap. I was pretty surprised.

Ian's B-Day Party

2009-12-18T17:21:00.004-05:00

This post is about a month late. We celebrated Ian's b-day back in Nov but I haven't down loaded pictures since then. Yikes!

This was a before and after shot of him demolishing his cake. It was quite a sight. Most in attendance thought it was a great baby destroying cake event. I guess he only missed being perfect because the cake didn't end up on his head. I think he enjoyed playing in it more than tasting.

It was a great time and we were so thankful for the family and friends that made the trip. He is such a sweet little boy.

Christmas Tree, Oh Christmas Tree

2009-12-17T19:46:00.004-05:00

Well, there are so many new things to post. I've just taken the time to finally down load some pictures from our camera. Today's post is our tree cutting adventure.

Ever since we've been married we have gone to the Cameron Christmas Tree Farm and cut down our own tree. Once the kids came along, they've joined in on our tradition. This was the first year since they came along that we were stroller free! (Sarah was kind enough to watch Ian for us- it was a little too cold for my baby.) Simon and Lucy spent most of the time chasing each other around. It was great to just let them run.

Every year we think about getting a fir tree but they are about $45-$50 so once again we decided on a spruce. Kevin likes to get the tree as big as possible. Our choice this year is probably one of our smaller ones.

Right now it's in the corner of our living room. Simon and Lucy really got into decorating this year. They both helped. I left the ornaments off the bottom third because I knew Ian would get them. They have slowing migrated their way up the tree. The top half is beautifully decorated.

Now that my Christmas break has officially began I'll try and post some of the things I have miss. Ian's birthday party, hair cuts, and Lucy's preschool program.

Doris Kemp

2009-12-04T21:15:00.003-05:00

I met a beautiful woman tonight. She is 87 and has a son with DS. She gave an inspirational speech at a Christmas banquet I went to. Thanks to her and many other parents who fought the schools and those with the power so that our Lucy has so many more doors open for her. Thank you Doris Kemp! I pray that I'm brave enough to continue the fight.

Wondering

2009-12-03T15:15:00.002-05:00

Jennifer has been talking some about "the wonder pill" and things like that on her blog. If there was a pill I could give Lucy that would take away the side effect of DS would I? I would love to save her from the bumps in the road she will have as she grows. Especially as she get older(30s-40s-50s). In all honesty I probably would like to save myself from some of those same bumps too!

Then I think about how on most days I've been able to view our experience as a gift. I've connected with some wonderful people. My eyes have been opened to people who I may have never noticed before. It's really helped to shape my world view.

I've noticed that when given this option some parents would love for their kids to have an easier time but would hate to "change" who they are. That's what I'm wondering about. How much of Lucy's personality is connected to DS? Would she love to sing, dance, and perform just as much if she didn't? Would she not pick on Simon so much? Would she need less guidance when it comes to following my directions. ie "Lucy come back here."

I'm convinced that DS doesn't define who she is. I'm as sure as I can be, that with or without it she would love music, singing, picking on her brothers and ice cream. I'm sure that DS puts a spin on all of these and how they are expressed.

Would I? I don't know. That's a very complicated question.

Thanksgiving

2009-12-03T14:41:00.002-05:00

Our computer seems to be running slower and slower these days and I'm needing it to go faster and faster. Kevin also does a lot of work from home so when I'm ready to post the computer is often busy. I haven't been sticking to my atleast once a week rule.

Anyway-

For Thanksgiving we headed up to Cleveland to gather with Kevin's family. It was such a nice time. Susan, Jose, Austin, and Zach made the trip from Texas to be with us. We were so excited. Especially Ian- it was his first time meeting his aunt, uncle, and cousins. We had a great time and yummy food. We even got to visit the Cleveland Zoo on Thanksgiving day. It was free! I'm sure Grammy enjoyed the lack of distractions while she cooked.

Trick or Treat

2009-11-20T16:59:00.003-05:00

I know this is a little behind but I still wanted to share my cuties.

Ian= Lion Lucy= Ming Ming Duckling Simon=Rintoo Tiger

For those of you who don't have toddlers. Simon and Lucy were inspired by cartoon characters.

Glee

2009-11-11T22:02:00.005-05:00

After a day of chasing kids, working, and cleaning up the house I love to curl up on the couch and enjoy some brain candy-TV. One of my new favorites shows is Glee. It's quirky and great! There's a lot of good things about the show. It has a lot of diversity- kid in a wheel chair, diversity of races, a teen who is gay, and tonight two people with Down syndrome. When the beautiful young girl came on to the screen I felt so nervous. How would this be handled? I actually started to cry. I'm not sure why I cried.
Moments like this I wish I was better at expressing my thoughts with words. I just can't seem to figure out what to write. Anyway...
The show ended great. I was impressed.
Maybe I got emotional because it just brought forth things I've been thinking about lately. Maybe even some fears about the road our family will walk. I don't want to be on any other road. Let me make that perfectly clear. I don't want to be on any other road. But, I am on a different road.

Happy Birthday Ian!

2009-11-07T14:37:00.004-05:00

Every time one of the kid's birthdays roll around I'm taken back to the day they were born. Today Ian turned 1. A whole year has passed since...

I'm not sure if it's that my ob is very cautious or what but as I got closer to my due date it seemed like I was getting a weekly stress test. They never really found anything but Ian's heart rate just wasn't beating in the pattern they wanted to see. I also had 7 ultrasounds with him. I'm not sure if they were concerned because of Lucy or because Simon was 9lbs 14 oz. It was a Thursday and I went to see the doctor in the morning. He sent me for a stress test and an ultrasound and they decided they would induce me that evening.

I eventually made my way back to the hospital. Kevin and the kids dropped me off at the door and I checked myself in at about 7pm. Kevin joined me when Grammy and Grandpa took over Simon and Lucy.

They started the process and I was fine until about 1am. From 1 am until he was born it was intense. The labor was harder and longer than it was with Simon. All three or my labor experiences are very similar. I had back labor with all three. Tail bone pressure, standing, and calm control during contractions is what got me through. I know when it's getting close because I puke. (Never once during pregnancy but always during labor) Soon after that it's the weirdest feeling in the world. Like your body is taking over and you have to push and you have to push now!

Ian was born at 6:22 am. He was 8lbs 14 oz and 21 1/4 inches.

He loves to smile, laugh, and to climb! He's more daring than Simon or Lucy ever was. Right now he's still Mommy's boy. I find myself letting him do more than I ever did with the other two, with three so close I'm thinking I don't really have a choice. He's a good eater and a decent sleeper. Naps wells- Goes to bed at a good time- Wakes up too early! We are working out the kinks of him and Simon sharing a room.

Ian we love you and are so blessed that you have come into our lives. Happy Birthday!

Always Happy?

2009-10-29T09:15:00.006-04:00

A few months back Lucy and I were at the grocery store together waiting in line. Because Lucy is so friendly and says “Hi” to just about everybody we struck up a conversation with the lady behind us. I’m pretty sure she realized Lucy had Down syndrome and said, “I bet she is always this happy.” Let me just say that line always make me giggle.

I think it was the next day that Lucy and Simon officially got in their first fight with arms swinging at each other, lots of screaming, both crying, and Daddy putting them both in timeout with more screaming and crying to follow. But of course there were sorry’s, hugs, and “I love you’s” to follow.

Lucy is quite the pleasant kid. She can make friends with just about anybody and gives the best hugs, but she isn’t always happy. I’m amazed by the myth out there that people with Down syndrome are locked into this state of perpetual happiness. People with Down syndrome are human and experience all the same emotions that every other human in this world experiences. They are, like the new Down syndrome slogan says, “More Alike than Different.”

But to make all of you happy right now, here are a few pictures of my kids being happy and loving each other:

Virus

2009-10-23T21:35:00.002-04:00

It seems that our computer may have caught some virus because we are having trouble up loading pictures from our camera. I have some great pictures of the kids playing in the leaves and of our day at the Pumpkin Show.
We have really been enjoying this season, and we are all pretty healthy. Simon has been coughing at night but not during the day. We got a note from Lucy's preschool that a child at the school has H1N1. I don't think they are in her class. Lucy and Kevin have gotten the flu shot but our county ran out before the rest of us could get them. We are still waiting for the H1N1 shot. The medicine that Lucy takes for her JRA is an immune suppressant so she is more likely to catch things. We just want to give her the shot as soon as we can.

Grandma Lucy and Children's

2009-09-29T21:05:00.004-04:00

I really am regretting not having my camera with me today. I wish I could have captured a picture of my grandma playing with my kids.

Today we took Lucy to Children's for a JRA appointment. In the past we have always taken Simon to Carey's but since they now live in Chicago that's out of the question. It's so much easier to handle 2 instead of 3. Thankfully my grandma (who my Lucy is named after) was free and Simon got to spend the afternoon with her. I just kept thinking how lucky my kids are to be able to have a relationship with their great grandma. She is an amazing woman.

Good news! Lucy is officially in clinical remission with treatment. In 6 months, if no symptoms come back, we will begin to wean her off her meds. It is a very slow process because there is a chance that if the JRA comes back that it could come back stronger and may not respond to the old treatment. We are keeping our fingers crossed that everything says good even through the cold weather.

We also got to see a friend today while we were at children's. We are so thankful for them and are looking forward to seeing Elli very soon!

Legend Hill Orchard

2009-09-22T14:36:00.003-04:00

This was Lucy's first field trip of the year. I was lucky enough to be able to switch my work schedule so I could go with them. Lucy's favorite part is usually the bus ride but for some reason she wanted to ride with me. Some days she's just fine and goes into school like it's no big deal and other days I have to leave her in tears. Thankfully there are more smilie days than teary days.

Buddy Walk 09

2009-09-18T20:17:00.002-04:00

We had a great time! We were so thankful that our friends and family were able to come and gather around us and Lucy. My parents and sister did so much to make this event run smooth. We just brought ourselves, the tent, and the banner. The banner was made by a friend. It was awesome. It's canvas so we should be able to use it year after year.
Thanks to everyone who made the trip!

2009-09-18T20:13:00.000-04:00

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2009-09-17T22:00:00.002-04:00

1st Day

2009-09-02T14:58:00.003-04:00

Preschool year 2. The first day was much smoother than day one last year. She went right to circle time and was very happy. When Kevin picked her up the teacher did mention that she got a little weepy around snack time and was asking for us, but overall good day! I was feeling so good. So proud of her being such a big girl.

Today was a different story. She wouldn't let me leave. HUGE tears and just wanted to be held. I snuck out during a song. I could hear her beginning to cry as I walked out the door. It felt horrible. Last year it took about a week. We are keeping our fingers crossed for tomorrow.

Madi and Luke

2009-08-31T17:00:00.002-04:00

Carey and I were freshman roommates at MVNC. We got married the same year. Lucy and Madi are 3 months a part. Luke and Simon are 5 months a part. We were so excited when the moved back to central OH from CA a little less than 3 years ago. Saturday we celebrated Luke's 3rd b-day and said goodbye again as they move to Chicago. We will miss you so much!

2009-08-30T10:28:00.005-04:00

Time is flying by these days. I'm back to work so I've gotten a little behind on the blog world. This past week we have been getting ready for Lucy to go back to preschool.
She had a doctor's apt. with Dr. Rick. He is an amazing pediatrician. He takes so much time to sit and talk with us to make sure we have all the info and direction we need. We are so lucky to have him close. He is so informed. It's probably because he has 2 children with DS himself. We called and cancelled our yearly at Children's and decided to just see him.
After the doctor's Lucy got shots and a blood draw. Glad that's over!
We also hit the dentist this week. Hopefully some time she will let them get a good look at her teeth. We sat in the chair and her mouth was sealed shut. She didn't want to play with their tools and wasn't up for any of their games. Some fun sunglasses and Kung Fu Panda helped and they at least got to look at her mouth from afar. They should treat her like a princess. She will make some dentist very rich!
Preschool starts Tuesday. I'm nervous about this year. Her teacher will be on maternity leave and we have some things that we want to update on her IEP. I'm not too nervous though. She loves it and is loved on. I'm also excited that our neighbor Ella gets to be in her class. I hope it helps to make Lucy seem more like a 4 year old to her. Kids Lucy's age never seem to treat her like she is a peer. I totally understand. She's tiny and can't quite communicate like they do. Sometimes it's hard to see girls I wish would want to play with her choose to play with Simon.
Good luck to everyone else out there starting school.

Brownies

2009-08-20T20:48:00.004-04:00

Lucy and I love making brownies together. This was when me made them for Ben and Sarah to celebrate the birth of their baby. She does such a good job at helping. She's starting to remember the ingredients and steps on her own. I think the eggs are her favorite part.

Big Girl

2009-08-08T13:21:00.003-04:00

We're always trying to encourage Lucy towards independence. We try to give her that nudge or sometimes push that she needs. One area that we just do too much for her is dressing. We are usually in too big of a hurry. She can put pants on and can get most shirts on- when I give her the chance. She can put shoes on as long as they are loose (which most are- skinny feet) or sandals. If she wears her tennis shoes I always put her socks on and the shoes. They are more difficult because of her braces and JRA.
The other day I threw her clothes in the room and started getting Simon dressed. When I turned back to get Lucy ready she had unfolded her socks and put them on all by herself! I was beaming with pride. She was too.

Buddy Walk 2009

2009-08-02T21:52:00.001-04:00

Friends and Family,

A little over four years ago our beautiful little girl, Lucy, was born. Soon after she was born we were told for the first time that she might have Down syndrome. Let’s just say that was a pretty tough first night! The hard thing about hearing that diagnosis is that you have so little information and tons of fear.

Four years later we have tons and tons of information and most of the fear has now been replaced with hope. Hope because we see this girl’s potential. Hope because we know how much love she has to give. Hope because she has blown away all the “experts” expectations. Hope because we know she is perfect just the way she is. Hope because we see the fingerprints of God all over her.

This past year she started preschool here in Mount Vernon. She thrived in her classroom! We wish you could have all been at her Christmas program where she performed so well. Watching her take a bow was just priceless! Her tutor has been making remarkable progress with her as well. She is in the beginning stages of reading some books and has started to learn to count to fifteen.

Her Juvenile Rheumatoid Arthritis is now in what they call clinical remission, which means while on her prescribed drugs they can no longer see any affects of her JRA. This fall they are going to start working on getting her off of all medication. You should see her run, jump, and dance in ways we only prayed we get to see a year ago!

Lucy loves that she has a new little brother, Ian. She loves talking to him and playing with him. She is a great big sister to both Ian and Simon. Though you should see the things she does to make Simon mad when she wants to!

Well, that’s an update on Lucy. For all those who have been of any support or have said any prayers for her we thank you from the bottom of our hearts! For more updates go to www.beautifullucy.blogspot.com

Below is the information about this year’s Buddy Walk that goes to support an organization that has been such a support to our family, The Down Syndrome Association of Central Ohio. If you want to walk with us or donate financially keep reading…

With much love,

Lucy, Simon, Ian, Mandy, and Kevin

Every year the in the fall the Down Syndrome Association of Central Ohio holds its annual Buddy Walk as it’s major fundraiser and celebration. And yes it is a celebration! In the words of one of Lucy’s walkers last year, “I pulled up to Crew Stadium and tears just came to my eyes.” When asked why she was crying she could only talk about what a beautiful sight it was to see over 3000 people gathered for the simple purpose of celebrating and supporting those with Down syndrome.

This year’s Buddy Walk will be held at Crew Stadium in Columbus Ohio on Sunday September 13th. Registration starts at 9 AM and the walk will start at 10 AM. There will be entertainment and activities and our team will have a tent where we can tailgate (i.e. sit around, talk, and eat.) One of the highlights is when we walk around the stadium as Lucy leads us.

If you want to join our team and walk with us all you need to do is register by September 13th. If you sign up by August 22nd you get a shirt with our team name on the back (that is if we get 24 walkers). If you just want a guaranteed shirt, without our team name on the back, the registration deadline is August 29th. If you aren’t worried about t-shirts or even walking and just want to donate some money to the cause you can do so any time before September 13th.

Individual Walker- $15 (includes 1 shirt)
Family - $25 (includes 2 shirts)
Extra shirts can be ordered for $10.

If you have any questions don’t hesitate to call us (740-392-3197) or email us (peterkevinson@yahoo.com) at any time.

Lucy’s team name is “We Love Lucy!”
Buddy Walk Website: www.columbusbuddywalk.org
Lucy’s Team Website: http://buddywalk.kintera.org/dsaco/welovelucy
(You can go through either of the above to register or donate)

Preschool Musical

2009-07-30T20:32:00.003-04:00

So I find this extremely funny. Probably because I have a preschooler and work with elementary age kids that carry around High School Musical book bags and wear their clothing. The over singing and comments at the end are my favorite!