Always Happy?

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

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

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

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

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!

1st Day

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

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!

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

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

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

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

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!

This year Mandy and I decided not to take all the kids to the Knox County Fair at the same time. In part, because it’s too much of a handful to have all three there at the same time and in part because Mandy is not the biggest fan of going to the fair after years of making her getting season passes (though it was there where I told her I loved her for the first time). So, this year I decided to take Lucy one night and Simon another night all by myself (Ian will have to wait for another year or two).



Last night was Daddy’s night with Lucy. I asked if she wanted to go to the fair and she said, “Yes.” I then asked her if she wanted to see some horses and she said and even louder, “Yes.” On the way to the fair I asked if she wanted to go to the fair and she said, “No… horses.” I tried but couldn’t explain to her that the horses are at the fair.

So the first thing we did at the fair was go see the horses. She liked them a lot as long as we didn’t get too close. She’s not the biggest fan of petting animals, but she loves watching them. After that we went and watched the demolition derby, but both Lucy and I were bored after about two minutes. But then it was on to the fun stuff… the rides!

I got Lucy an armband so she could ride unlimited rides and all she said to me after we rode one was “more!” I was so proud of her as she rode some of them all by herself (after I buckled her in by myself very securely of course)! A few of the rides were way too big and fast for her so I was able to ride along with her, which was a treat. I thought for sure she would get scared on a few of the rides, but there was no fear in my little girl.

We finished off the night by sharing a piece of cheese pizza on a grassy hill overlooking the demolition derby as the sun set in the distance. It was a great night with my little girl!

Bee Stings

Simon and Kevin were supposed to have a little guy time at the Knox County Fair but a bee sting on the bottom of his right foot got in the way. Lucy has never been stung so this was a first for us. His foot swelled up but not too bad, and he limped around for the rest of the night. He was pretty bumbed about not going to the fair. Lucy took his turn and had her Daddy Date Night. Kev will probably take him later this week.

I'll try to encourage Kevin into write about their time at the fair.

Day 1

Today is our first attempt at getting Simon potty trained. He will be 2 1/2 on July 29th. I would rather wait. It can be such a pain taking kids to public restrooms but he is showing some signs of being ready. We don't have any big trips planned for this week and once August hits I have some things to do at work so this week is it. It's now or wait until I'm on Christmas break.

After the traditional breakfast of mini-wheat's. I rolled up the rug and keep the kids off the carpet. They changed into their clothes. Simon with just a shirt and his underwear. Then I loaded him up on juice and took him to the potty about every five minutes. We went through 3 pairs of underwear until he finally went on his potty. We jumped up and down, gave him some candy, and then he went on the floor.

I laid out a towel and said that I would turn on Cars if he went on the potty and would turn it off if he went on the floor again. That seemed to do the trick. He was even able to initiate going on his own. He went about 3 or 4 more times. This was all before lunch. He had about 3 cups of juice.

Hopefully success is on the horizon.

Sunscreen

We have searched and searched for sunblock for Lucy. Anytime we put sunblock near her face her eyes turn red, get puffy, and tear up. We have tried many different kinds. Even those that are "tear free" cause tears. She either had to suffer through the tears or we had to not protect her from the sun. We always felt so bad for her when we would go to the zoo or where ever and she was just all red and teary eyed.
Well we have finally found something that works- Neutrogena Pure and Free Baby. We are able to put it on her face and haven't had to worry about it irritating her eyes.
Just thought I would pass this along in case anyone else has a little one who seems to have really sensitive eyes.

Cute Pics

Wizard of Oz

On Sunday Lucy, Nana, Kelly, Halle, and me went to our local community theater to see the Wizard of Oz. It was amazing. So well done considering it was community theater. Even though the actors were great Lucy's enjoyment was even more fun to watch. She sat in full attention for the entire play. (3 hours) The people in front, behind, and beside us commented on how cute it was watching her enjoy the show. At intermission we almost had tears. She kept signing and saying more, more. We reassured her that it was just a break and that there would be more.

I wonder when she will be on stage? I think she was made to preform. We should get her in dance soon.

Lessons

As a mother you are always learning.
My daily lesson yesterday was that nasal aspirators are helpful when trying to get corn out of a little boy's nose.
I wonder what today will bring?

Summer Schedule

Our school district offers summer therapy. So Lucy has the opportunity to continue with one on one OT, PT, and speech. This may sound great but lugging three kids for 3 different half hour appointments in not easy.
Monday- We go to Joanne's (in Dublin- an hour to get there, she spends an hour with her, and then an hour back) The only plus about Mondays is that we often get to meet up with Aunt Jessica for shopping or lunch.
Tuesday- OT 11-11:30
Wednesday - PT 11:30-12
Thursday- Our Day Off!
Friday- Speech 9:30-10
The other day it took us a half hour to get in the car. We arrive and I get out the stroller to load up Ian and which ever kid isn't listening so well that day. (Usually Lucy) Then when we finally make it in the building. (for PT I have to unload the stroller because there are steps and they are just far enough apart that I can't just tip the stroller. Then I put them back in the stroller for the walk to the room.) While Lucy is working with her therapist I try to keep Simon entertained. My neighbor watched him once but her schedule doesn't always allow for that. Plus she has three of her own. (I miss Michaele a whole bunch!)
If I have Simon I can't be in the room for PT or OT. Today we had speech and it worked great with Simon in the room. When I'm not in the room Lucy spends the first 5-10 minutes crying.

So I'm thinking I'm not doing this another week! We'll go to Joanne's on Mondays. The OT let me borrow a scooter board to work on hand and arm strength, I got some 4 piece puzzles, and some silly putty and beads. In PT she's working on jumping, throwing, catching, and those sort or things. I'm thinking that while the boys nap I can have school with Lucy. We can work on our cards from Joanne, and them do some PT and OT activities. Right now she's working on a puzzle. She's gotten three out of the four pieces so far. (by herself)
I think we can still make it to speech since it works for all of us to be in there. Plus communication is so key. The down side of summer speech is that she is working with a different person. Knowing that she was going to be working with Lucy the therapist did stop by and see her in her classroom during preschool.
Within about 5 minutes of today's apt. the therapist looked at me and said she had no idea Lucy talked this much and that she's way beyond what she thought. She had to scrap what she planned for that day. She mentioned that she is pretty quiet in class. Sometimes I wonder if her teachers under estimate her abilities because she's quiet in a group of kids. Most of the time I under estimate her abilities.
As I wrote this she finished 2 puzzles and is now sitting at a table practicing making circles. We better do Ms. Joanne's homework before the boys wake up.

1,2,3,4

On June 12th Lucy turned 4. I've been wanting to post something about her birthday. We were traveling on her actual birthday so we didn't really celebrate until last week. We also decided to just celebrate as a family. No big party this year.

Before I started writing this post I looked back to the previous birthday posts. It's amazing how much she has change but what was even more stricking was that in every picture you can just see that spunky personality. She is so much fun.

We are so lucky to have her in our family. She has taught us so much! We are looking forward to growing with her.

Happy Birthday Lucy!

Bedtime

We have had some new twists to bed time. Thankfully they've been good. (I send lucky vibes to you Jennifer.)

Lucy has stopped napping so she is dog tired at 7. So her bed time has jumped from 8 to 7. I have cut out Ian's evening nap so he is going to bed around 7:30 instead of 8:30. Simon hits the hay (I wonder where that expression came from?) around 8. It's actually pretty smooth.

I'm usually the one that lays Simon down. We go up in his room and grab his blanket and we sit in the glider. I used to just hold him for a minute or two but a couple of weeks ago he started asking for a story. I started by giving a summary of his day, then we progressed to stories about things I know he loves, this week I've introduced The Three Bears and The Three Little Pigs. I leave out any violence against the pigs and the wolf.

Tonight after our story I was just holding him and being so thankful. Having two toddlers isn't easy but there are some awesome parts about this stage of life. As I held him I knew that these nights won't last forever. Sooner than I want he will grow out of my lap and my stories.

Perfect Morning

Even though it started a little early we've had a great morning. They all woke up happy. I made pancakes for breakfast. Ian went down easily for his morning nap. I got a shower while Simon and Lucy watched Super Why! and Ian slept. Ian was still asleep so we went outside and I got out the sand table for the first time this summer. Lucy and Simon played without major incident while I laid on the hammock and read. I was able to read 3 whole chapters before Ian woke up. He woke up cooing and not crying. Then we came inside just in time to catch Sesame Street while I made a pizza for lunch. I just love Sesame Street. I just love being at home. I wonder if I would appreciate mornings like this if I didn't have to work 9 months out of the year. I'd like to think I would.
The pizza is done and we'll keep our fingers crossed that the afternoon goes as smooth as the morning.

Vacation

On Lucy's birthday we left for Siesta Key in Florida. We were pretty nervous about an 18 hour car trip with our three little ones but thanks to portable DVD players and restaurants with playlands it wasn't as bad as I had imagined.

We haven't been able to write about it on the blog because it was a surprise to Nana that we were going. We went with Nana, Papa, Aunt Jessica, Uncle Dave, and Julian.

Since our kids are fair skinned we had limited beach and pool time. Most days we stared pretty early. We would go to the pool and then when Ian went down for a morning nap one of us would take Simon and Lucy to the beach for some sand time under the umbrella. We tried to have them in by 11:15.

I loved many parts of our time at the beach. Playing in the sand, watching Simon swimming with his life jacket, sitting around the table and eating together. I was so nice just to be away.

One funny story is that Simon got attached to these little toypeedos. He has a blanket and loves to sleep with it but doesn't carry it around or anything. He's not necessarily attached to any toys but he fell in love with these pool toys. They were Julian's. He wanted to take them to dinner and sleep with them. He carried them everywhere. When we were taking our family pictures he insisted on holding them. My mom finally got him to put them down.

Avacados

After rice cereal, avacados were all of their first foods. I looked back in our phots and found a picture of each of them enjoying them for the first time. The top is Ian, then Simon, and then Lucy. It's so fun to look at pictures of them when they were about the same age. They are all around 6 1/2 to 7 months in these pictures. Ian's hair really doesn't look that red in real life.

I usually try to make most of the kids' baby food. WIth Lucy I was pretty successful. With Simon I was mostly successful and with Ian we'll see. Making his avacados was quite and adventure. Lucy and Simon where running around and I was wearing Ian in a sling because he would cry if I laid him down. All I have is a Magic Bullet. It takes awhile to make a large batch. I think that if I had some thing bigger it would be easier. It's just hard to spend the money on a food processor when I'm pretty sure Ian will be our last.

Preschool Graduation

This video is from Lucy's preschool graduation today. She actually has at least one more year of preschool left, but it was fun to celebrate the year she has had anyway. She has grown in so many ways this past year. At the begining of the year we weren't sure if she would ever run or jump due to her arthritis, but after watching this video you'll know we don't have that concern anymore!

This next video is of her getting her diploma and then coming to say "hi" to everybody.

IEP

Lucy's IEP meeting is tomorrow. I'm excited and neverous. It will be great to have all the people that meet with her all in one room. I wish Joanne could be there too. I didn't think about having her come until today. Oh well, there's always next year.
We noticed that her current IEP her goals weren't very specific and I don't think they were very helpful to the teachers. This time I gave the teacher some of our ideas for what her goals could be. After hearing about Jennifer's trip to Cinci. I wrote some behavior goals. I wrote a couple of learning goals and then I went to the ODE web site and looked up the preschool standards that gave me some good ideas about what other things I would like to see her accomplish this next year. They sure do expect a lot out of preschoolers. We'll see which ones end up on her IEP. I hope it goes well!

Field Trip

On Tuesday the whole family got to go with Lucy and her preschool class to Rolling Ridge Ranch in Holmes County. It was amazing. The kids were able to get up close and personal with the animals. There is a petting zoo and then you get to take a horse drawn wagon ride through their property. The ride is about an hour and they give you buckets of feed. Once they open the gate animals come rushing to the wagon. Deer like animals, moose, cows with huge horns, ostrich, donkeys, and many others. Lucy wasn't a fan. She sat on our lap and enjoyed the ride. Simon found the courage to feed the animals. It was pretty wild!

Brent and Michaele

On Monday we said good-bye to our friends, partners, and babysitters. Brent and Michaele left West Side to go and spend a year in Swaziland. We already miss them. Simon has already been asking where they are.
Simon- "Where's Kale?"
Me-"Kale is in Africa."
Simom- "Kale in Africa?"
They have a blog but I'm not sure what the address is. I'll put it in my blog list once I find it.

Cereal and Update

Ian turned 6 months on May 7. So he got his first taste of solids. I was shocked at how well he took to it and by how much he loved it. He has was born at a great time. We will be able to make a lot of his baby food fresh and local. I'm looking forward to hitting the farmer's market! I'm sure the pictures will get messier as we move towards more colorful foods.

Updates- We are all doing well. Ian is starting to sit up and creep across the floor. He loves to smile and just loves Simon and Lucy. Simon is a great big brother. He kisses him, hugs him, he lays on him, puts laundry baskets over him and has given him his first bruise. Lucy is much gentler. She loves babies and gets right down on their level and talks with them in a sweet high tone. Babies tend to love her too. This morning she climbed in bed while I was nursing Ian and Ian just stopped and stared at her with the biggest smile.
I'm amazed at how fast Simon's vocabulary has grown. Every week he has more and more words and is forming more and more sentences. He loves to run and jump and play. He could spend all day outside.
Lucy is doing great too! Preschool is winding down and her IEP meeting is coming up soon. We are going to take a much more active role in helping to develope her goals. I'm acutally looking forward to getting a good plan together for her and her teachers.

Last night Simon and Lucy were chasing each other in the yard. First Lucy was chasing Simon but Simon kept passing her and they were going back and forth on who was chasing who. He is so much faster. Sometimes I feel bad for her that Simon keeps passing her. He's faster, he talks more- the only thing she has is that she's a neater eater and potty trained. I'm just thakful that right now neither one of them seems to mind. They love each other.

The effects of spring

We were just about ready to go and get his hair cut again, but I just can't do it. His curls are so cute! This is probably as curly as it gets. If he were a teenager I think the girls would love his hair. I hope curly wild hair is still in style when he gets older. If so, he's got it made.

Miss May

A special feeling of pride swells up in my heart today. This morning as many people across Ohio turned the page of their DSACO calendar to the month of May they experienced the same joy that I get every morning. Looking at beautiful Lucy! I've been waiting for May 1st since Janurary 1st.

I'm just so proud of her!