The Littlest Chirstmas Tree

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.

More Christmas stories to come...

Ian's B-Day Party

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

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

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

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

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

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

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!

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?

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!