21 Things About Riley

Each year during the 31 for 21 Challenge I have put together a list of 21 Things about Riley.  Here is the Link to 2008  2009 2010  and 2011.  I enjoyed going back through them and remembering what Riley was up to each Fall.  He has changed and grown so much each year.  I hope you enjoy this years list.  Add your own Riley fact in the comments. 

1.  Riley's favorite person in the world is still his big brother Rex.  They are great friends and Rex will forever be his greatest teacher.

2.  Riley loves to jump on the trampoline.  Everyday when he comes home from school he asks Rex to take him out to bounce. 

3.   Riley loves to eat.  He loves loves loves cottage cheese, chicken, string cheese and has a new love of broccoli.

4.  Riley loves kindergarten.  He is learning so much each day.  It has been a transition but he is settling in to a nice routine.

5.  Riley had his tonsils out in April and I'm hoping it means many less trips to see our pediatrician this winter.

6.  Riley knows the names of almost every student in his school in all grades.  The 4th Graders are his favorites.  Rex is a 4th grader and so those kids have known Riley for a long time.  It is his own personal fan club. 

7.  Riley has weird thing with names.  He asks everyone "What your name" and he does want to know everyone's names.  Those that he already knows he turns this into a game.  "What your name" and then when you answer he says "no you Bob" or "No you Boo Boo"   The list of made up names go on and on. 

8.  It is not uncommon for him to say "Good Night Sweetie Bob" or "Peace Out Sucker" when he tells me goodnight.

9.  Riley smiles with his whole body.  He can make anyone smile!

10.  Riley loves the Lion King and can sing pretty much all the songs. 

11.  Riley has never met someone that isn't his friend.  He seems to seek out those that need a hug. 

12.  Riley still loves Elmo and his friend Big Bird. 

13.  Riley loves routines.  He is a great helper when you teach him a simple routine like where to put his coat and shoes. 

14.  Riley loves his teacher Mrs Theilman.  He gives her a run for her money everyday but I think he has won her heart. 

15.  Riley has a huge group of girls he loves to play with.  Rex's friends all seem to have little sisters and they are so good to Riley. 

16.  Playing with all of these Princesses may be why he decided to dress up like a Prince for Halloween.

17.   Riley loves books.  He is learning sight words and starting to read.  So exciting!

18.  Riley loves to play soccer.  Each Spring he plays Top Soccer and loves his buddy Kasey.

18.  Riley has killer dance moves.  He loves to dance to most anything. 

19.  Riley has a hard time writing but he can write his own name...  maybe sometime soon he will do it consistently for his teacher. 

20.  Riley talks constantly about going to see the Buffalo at Yellowstone.  It isn't uncommon for him to pack his backpack and head out.  We have to be careful to shut the extra tall latch on the door so he doesn't head out on his own adventure. 

21.  Riley is a funny funny boy.  We wasted a ton of stress worrying about him having Down syndrome.  He perfectly completed our little family  

Happy 31 for 21.  Hope you have enjoyed reading along. 

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Reading Homework

We sat down Sunday evening to read Riley's book that came home for homework.  Riley first read it to  me and then to his brother.  I asked if I could take a picture of him reading it to Rex and he was in the mood to agree.  We took a video and then he wanted me to video him reading it all by himself and then he wanted to read it to Rex again. 

I think I'm going to video a lot of reading if it makes him this cooperative.  Riley loves to watch it after we take it and watches them over and over.  Might as well use it to our advantage.  I have to say I've watched it a few times myself and I'm loving it. 

 

Squishy Pumpkin Guts

Better late than never.  We didn't manage to squeeze in a trip to the pumpkin patch as a family this year but Safeway came to our rescue this afternoon when we finally got around to picking our pumpkins.  Rex pawed through what was left at the store and finally found 2 that would stand up on their own and we drug them home.  The boys have always had mixed feelings about the gooey squishy part of carving pumpkins but they both dove right in today.  Riley was intrigued enough to taste it too...  he spooned it in and then just chowed down on a chunk we had cut off.  YUCK!  The boy is nasty. 

 

More Alike Than Different

Earlier this week when I talked with Rex about Down syndrome he told me he thought people with Down syndrome looked a like.  We talked about this quite a bit that evening.  We talked about the physcial charateristics that people associate with Down sydnrome.  I didn't think he realized how much he and Riley actually looked alike as well.  So I dug up some pictures for him.  These two really are more alike than they are different. 

 Rex Thomas        8-22-02

Riley William      11-30-06



Riley 9 months



Rex 2years



Riley 2 years



Champions

Today was the end of the year championship for Rex's flag football team.  It was COLD and wet but it didn't actually rain during the games.  The boys have had a great season and have so much fun playing together.  Such a great group of boys he goes to school with!  Rex's team wasn't huge to start the season but with one kiddo out with an injury and a few others with family commitments they didn't have any substitutes.  It was a busy day for a team that had to win three games to win the Championship. 

Between games they cuddled up and drank hot cocoa to stay warm.  Gramma even loaned Rex her gloves.  He really liked the bows! 

It was a tiring morning but the kids play great and pulled off the Championship.  They are officially the

Catholic Grade School Flag Football Champions!

And for those of you keeping track football is officially over and wrestling starts this week. 

 

Hand Prints

These little hands are one of  the most adorable and most frustrating part of Riley.  I love those itty bitty fat little fingers.  I love the way I can always pick his hand prints out of classroom art because of of the way his finger tips are a little crooked after having his fingers separated.  This is one of my favorite pictures of the boys where you can still see his sticky fingers.   Rex was hysterical telling people about how Riley's fingers were stuck together but its was OK because Dr Bruce was going to fix it.  Dr Bruce is the boys pediatrician and Rex was pretty sure he was just going to take a knife and slice them apart.  Little did any of us know what a big deal that surgery was really going to be.  Over a week in a cast/sling to make sure the skin grafts had time to work their magic and so many stitches his little fingers looked like caterpillars.  It is the one time in Riley's life when I didn't want him to touch me.  Just thinking about the feeling of those nasty little furry fingers still gives me the chills.  As you can the Dr at the Shriner's did an amazing job and his fingers have healed great.  He has full range of motion and other than the funny finger tips and a little scaring its pretty unnoticeable. 

These itty bitty little hands also cause Riley a lot of extra work.  It is so hard to make those little fingers do what he wants.  His hands are weak and therefore simple activities like coloring are hard.  If coloring is a challenge you can imagine what hand writing is like.  This will be one of the most challenging parts of school for Riley.  He works hard with his OT each week and is certainly making progress but its simply hard work.  This is one area where Down syndrome has stacked the deck and not in Riley's favor. His physical anatomy  is small, his muscles are weak and then you top it off with issues with motor planning and he has a lot to over come.  Good thing he is a stubborn little thing and he'll make it work.  Even better he was born in a day and age where the iPad and other tools are available and he'll have every advantage that technology has to offer to make things a little easier. 

In Hurricane Riley's Words

Riley wanted to tell you about his day. He is all about hs friends but I think he squeezed in a little work during school too. Two good days in a row!

 

Rex's Thoughts

Each year during October I check in with Rex and have him answer a few questions about his brother.  Its fun to see what he has to say and is a nice subtle way to take him pulse on the topic.  We've never made a big deal of talking about it but it is obviously part of our lives.  Justin and I made a conscience decision not to sit Rex down and talk to him about Down syndrome when we learned Riley's diagnosis prenatally.  We didn't want Rex to have one minute of worry or doubt about his brother.  We knew that the best thing we could do for Riley was to have a brother that treated him like a baby brother.  Rex is Riley's biggest fan and greatest teacher. 


So here are Rex's thoughts.  I love how the mind of a 10 year old boy works. 


What is Down syndrome?

It makes people take longer to learn something. And people with Down syndrome kinda look a like. 

How do Riley and Ella look alike?The way their faces are round.  Their fingers are both pretty small. 

What do you think about having a brother with Down syndrome?
I think its fun to have a brother with Down syndrome because you get to wrestle with them.  And they are really funny and fun to play with. 

So Riley is fun to play with because he has Down syndrome?
Ya, like when we bounce on the trampoline.  He can't jump as high as other kids so I can bounce him really high. 

What is the best thing about having Riley for a brother?
The best thing about having Riley for a brother is getting to teach him new things. Like when I get to wrestle with him to help make him stronger.    I get to hang out and watch TV with him and he lets me pick the show most of the time. 

And he is really funny and makes up random things.  People with Down syndrome have way more imagination than other kids. 

What is the worst part about having a brother with Down syndrome?

That's a toughie.  He doesn't listen very well.  And he kicks me a lot. 

What would you do if someone made fun of Riley for having Down syndrome?

I would tell them to stop making fun of my brother.  If they were making fun of him because it was hard for him to learn things I would tell them that Riley's brain just takes a little longer to learn things than ours do. 
How would it make you feel?

It would make me mad because he is my brother.  I'd tell them to stop. 

What would you tell a friend that was worried about having a brother with Down syndrome?

I would tell them not to worry because its so much fun to have a brother  with Down syndrome.  Its fun to help him learn knew things.  It makes me happy to be able to help my little brother. 


What is like to have Riley at your school this year?

Its fun because I get to see my brother every day at school.  And its also annoying because people always talk about him and it gets really old. 

What do they say about him?
They say that he is cute and that he's fun to do work with.  (The 4th grade class buddies up with the kindergarten class)  They tell me stories of what he does in class. 

Do you get tired of hearing how cute he is?
Yes, I just tell them to try living with him for six years.   

What do you think about hanging out with friends like Hunter and Micah who have a brother or sister with Down syndrome?
Its cool because they are the only people that know how annoying and funny our brothers/sisters can be.

Do you and Hunter talk about Riley and Ella?
No we don't.  But we don't have to he just gets its and thats cool. 

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Inspiration

I think Riley stays up late thinking up ways he can keep things entertaining at school.  I'm starting to get a little gun shy when I pick him up from school.  I never know quite what he will have come up with during the day to keep his teacher on her toes.  Today's report was not surprising since he left the house in a mood.  He didn't line up from recess and hid in the ferns during music class.  The weird one was when the little boy in his class stopped me to tell me that Riley glued his vest.  I didn't really understand what he was talking about until I picked up the vest and it was indeed covered with Elmer's glue.  Even the teacher was a bit baffled how it happened and wasn't so sure he was being naughty but really how does one end up with their vest in a puddle of glue with out being naughty. 

When I sat down to write this evening I was in search of some inspiration.  I actually typed it into my Google search bar  "Inspirational Quotes on Patience"  and then when I wasn't satisfied with the results I added  "while raising children" . 

I found a few I liked. 

Children are unpredictable.  You never know what inconsistency they're going to catch you in next. ~ Franklin P Jones

Boys, n:  a noise with dirt on it. ~Not Your Average Dictionary

If there were no schools to take the children away from home part of the time, the insane asylums would be filled with mothers.  ~ Edgar W Howe



In my stroll around the Internet I found this video that I enjoyed.   I found my inspiration for the day. 



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Everyone Needs A Happy Place

Rex has found his happy place.  He has always been a sports kid but I think football has topped the list.  It doesn't matter flag or tackle or just playing with his buddies at the park this boy loves to play football.  Our Saturday mornings have been filled with flag football through his school.  He has been loving his experience with his tackle team but nothing compares playing ball with his best buddies.  Rex is a kid that thrives in situations that are familiar.  He is very confident with his buddies from school and he has an absolute blast playing ball on Saturday mornings.  To sweeten the deal he doesn't have to worry about weight limits and what position he can play like he does in tackle so this last weekend he was able to play quarterback and run the ball.  He was in heaven!  Its fun to watch him and his buddies have a great time and win games.  They have one last weekend and are hoping to win the championship. 

No Worries for the Rest of Your Days

I've wasted a lot of stress and worry over this little man. He still has a few things to teach us!

 

Bye Sweetie

Breakfast conversation with Rex and Riley:

Rex:  Riley I'm going to give you a noogie.
Riley:  No Noogie... Call me Riley. 

Riley with his occupational therapist Robin:

Robin:  Hi Riley
Riley:  No WIGGLE WIGGLE
Robin:  Ye we need to move your fingers to write
Riley:  Bye Sweetie
Robin:  Have you been writing your name for Mrs Theilman or are you being a stinker?
Riley:  I be a Stinker
Robin:  Since you are being a stinker you need to write your name two more times on the back of your paper.
Riley:  Oh Darn!

Riley at school when he sees me on the playground:

Riley melts to the ground and cries

Me:  Hi Riley  I missed you
Riley:  You go sit in car mom.  I go school!
Me:  Can I go to your class with you?
Riley:  No you go your car!
Me:  Were you good today?  Did you wear your bracelets?
Riley:  I no wear bracelets.  I don't like!
Me:  But Mrs Theilman said you had a a great day.  You were so good! 
Riley:  I know wear them


Conversations with Riley are  humorous to say the least.  He is a bossy sassy little boy.  I'm so thankful that he speaks clearly enough for us to understand his sass but some days I'd like the nice sweet child.  You know the one...  the stereotypical child with Down syndrome that is always smiling and happy. 

Riley is a very loving little boy but anyone that knows him knows that he runs the full spectrum of emotions.  For tonight's Down syndrome awareness lesson we busted a common myth.  People with Down syndrome are not always happy.  They experience all emotions just like the rest of us.  I like to think that Riley's loving personality is a reflection of all the love that he is shown but his family and the huge circle of friends he has. 

 

No sissies around here

I have found my self saying "being a mom is NOT for sissies" a lot this week. 

 My friend's baby girl has the stomach flu for the first time which unleashes a long conversation about puke and how it only get worse once they start eating real food.  Then comes the potty training stories and the moms with older kids have to add in stories of injuries and dating... the teenage years. 

We are more alike than we are different. This is a saying that we hear a lot when people speak of acceptance of people with Down syndrome. We like to point out all the things that our children with Down syndrome do and the emotions they experience and how they really are just like other children. Riley loves to play and run and laugh just like other boys his age. He also can be a totally stinker and be naughty and be mad or sad just like other kids.

I'm often reminded of how we are more a like than we are different when I have a chance to actually listen to other moms talk about their lives. It doesn't matter how many chromosomes your child has or if he can see or hear. It doesn't matter if you have a partner in crime to help you in the parenthood journey or if you walk that road alone.  Working moms, work at home mom or stay at home moms its all the same. We are busy busy ladies  trying to get it all done and keep a smile on our face and not dive into that bottle of wine before a respectable hour of the day. No matter your story being a mom is mentally, physically and emotionally challenging.

We all have those days when we rock the mom part. When we actually do have all the laundry done, school lunches packed the night before, have our child bathed and books read and children tucked safely in bed by 8pm so our angelic children have a great nights sleep and will rise to the level of genius the following day at school. Then the days where we run through the McDonald's drive through for dinner followed by a hour of yelling and fighting over homework followed by a brief kiss on the forehead and screaming children are safely tucked in bed by 10 so awake to early and be crabby and sleepy all day at school.


There are times when it feels that as moms we are too busy comparing our kids strengths or comparing who has the worst war stories to remember that we need to gain strength from each other and not compete with each other.  My friend Tami had a great post about how she feels when people ask her about her daughter and if she is high functioning.   It doesn't matter which side of the comparison you land on its never good.  Do you feel bad because your child is too healthy or doing too well at school and why should you have it so good when some one else has to try so much harder?  Do you feel bad because your child has to work 10 times as hard as another and still isn't as successful and then you feel guilty for thinking those thoughts because you really do love that little person that is succeeding and you want nothing but the best for them? 


I have the honor of calling some pretty amazing women my friends.  I wish they all had a blog I could share with you so you could celebrate them with me.  I do have a couple I'll share with you and they are worth stopping over to read and say hi. 
  Emily grew up down the road from me...  yes that was a dirt road.  She shares her story of being  mom to Eddie over at Family Connect.  It is a resource for parents of children with visual impairments.  Her post today touched my heart.  You can find her story by clicking this link.    Karen blogs at The Rocking Pony  I've found her story about her family and especially her son that is about Rex's age hysterical.  Her son Micah has Down syndrome and is non verbal.  He may not talk much but he is a character.    There are several of us blogging in the 31 for 21 Challenge and if you click on the button below it will take you to a list of all of them.    I need constant reminders that I need to live in the present and to put aside the mommy guilt regardless of the cause.  I continue to gain balance and strength  from own mom and my friends.   Some of these friends I've known since childhood and others I've only known online through their blog posts. I hope you find strength in the mothers that you share your journey with you.   Remember this journey isn't for sissies.  Put yourself out there and find those moms that help build you up. 

 

Fashion Bracelets

Guess who really loved wearing his bracelet today. If you guessed Rex you were right... well and Riley too.  Day one was a success!  Riley lined up for noon recess with Rex with no issue.  Rex said it went well except for he had to talk to a couple of Riley's classmates that were hitting each other in the "junk".  Rex says to me "there are just somethings that you shouldn't need to say mom".  So love that boy. 



Rex's and Riley's fashion bracelets



  Music was a little iffy but the teacher hasn't been briefed on the bracelet protocol. I figure it will take a few days to make its way to all of the teachers but by next week we should be pretty consistent with delivery.    Thankfully Riley waited until towards the end of music when his regular classroom teacher was there to pick the kids up before he decided to play behind the flowers up by the alter and tip over the incense. She was able to give him a consequence immediately and get him where he needed to be.  I'm sure there is a special punishment for sweet little Catholic boys that tip over the incense. 

 

Big Brother Rex

I had the big meeting with the principal today and we have a plan.  I knew it was going to be good when one of the first things that the principal said was "well everyone needs to be on the same page that Riley is treated the same as all our children". I sighed a big sigh of relief and knew it would all work out. I don't know if you all know this about me but I worry a lot and especially when it comes to Riley and school.


Riley's classroom teacher, the principal and I  brainstormed ways to keep Riley safe and help make him successful. I came with a list of ideas that I have collected from all of you and a template for a behavior/sticker reward chart.    We have a variety of things that we think will make it easier for Riley to make better choices.    We will be limiting the space on the playground he is allowed to go to just the bark area.  The bark area is where he typically stays anyway because it has the swings, slide and the tires he loves to hide in when its time to line up.  There is plenty of space to run off some energy and have a ton of fun with his friends with out the wide open space and the fence that leads to the dogs that get him in trouble.  We did agree that day was a freak accident and not a normal pattern of behavior so that was good. 

We are going to try a system where Riley has a special bracelet he gets to wear to recess, music and PE.  Really anywhere that he won't be with his normal classroom teacher.  If he isn't a good listener when it is time to line up or doesn't stay with the group in class he will have to hand over his bracelet to the teacher on duty.  I think he will hate to give it up so that will be motivating for him to keep it.  If he returns to class with his bracelet he will get to put a sticker on his chart to bring home to me at the end of the day.  I'm not positive that the sticker will be meaningful to him but it will allow the teacher and I to see patterns.  Does he consistently have rough days on certain days of the week or with certain combinations of activities?  If he has PE is he then too tired to listen at recess?  Who knows what we will learn but the geek in me wants to graph it.  We will be monitoring the three recesses and PE and Music class. 

Rex is also going to play a role in this grand plan.  He is going to leave his lunch 5 minutes early to join Riley on the playground at noon recess.  He will then help Riley line up and walk him to class and then he will go to his own recess.  Rex will also be able to take Riley's bracelet if he doesn't line up nicely.  We hope Rex will only have to do this for a few weeks while Riley gets this all figured out.  When Rex got home from football practice today Riley and I were busy making his new bracelet.  When he asked Riley was he was doing and I told him we were making a really awesome bracelet and joined right in and made one too. Thankfully Rex picked up what we were doing and started telling Riley how great his bracelet was and how he loved the colors.  This bracelet has to be a BIG deal to Riley.   Rex is going to wear his bracelet to school tomorrow so Riley knows how awesome his bracelet is.  Rex informed me that he doesn't care if he friends make fun of him.  I love this boy!  I truly don't think he friends will make fun of him.  Once he tells them its to help Riley I'm guessing they will all want a bracelet made of a string of Dollar Store beads.  Its all the rage!!!

There are a few other things that will be better communicated to all the teachers that work with Riley so they have some tools to pull out of their box if he gives them grief.  We also agreed that Justin and I need to be notified right away if there is a big issue.  Waiting several days  A friend of mine gave me a Social Story book for recces success that I'm going to add Riley's picture to and made a couple of changes to make it specific to Riley's school and we'll start reading that too. 

 Over all I think we have a good start.  It feels good to have a plan. For making it through that long post I have a Riley funny for you.

 As we were leaving today after school Riley is saying good bye to all his friends.  He waves and says good bye to Kaityln and then says Bye Recess to the other little girl with Kaityln.  When I said Riley thats Kaityln's friend he yells Bye Recess.  The only thing I can figure is he doesn't know her name but sees her at recess with Kaityln and so has named her Recess.  Or she didn't understand him when he constantly asks her name so he made up his own...



Riley and Rex October 2012



 

Did you see a Caveman?

Operation Make Riley Listen is in full force at the Kibbe house.  This issue has nothing to do with Riley's mild hearing loss and everything to do with being a sassy almost 6 year old.  Riley is having trouble lining up from recess and staying on task during school when he is away from his typical classroom teacher.  This makes recess, music and PE challenging. 

I've been reaching out to all my great resources for ideas.  I am continually reminded of just how blessed we are and how many people Riley has touched.  Riley has an army of people cheering for him, praying for our family and encouraging us all on a daily basis. 

I have received some great ideas and will meet with his school principal and teacher tomorrow to strategize on the best way to make him successful.  I am sure we'll get this figured out but I'm hoping it is before I have an entire head of gray hair.  Who know recess could be so stinking stressful???  Please please send me any other ideas that you have.  I figure that if I get enough suggestions one will have to be the magic solution.  Hey a mom has to dream right?

Operation Make Riley Listen makes for interesting dinner time conversation.  We have been talking and talking with Riley about how he needs to listen and make good choices at school.  We were talking through today's recess where he wouldn't line up and what the teacher did and how he should have lined up. Riley was answering and telling us what we wanted to hear.  Justin wasn't buying the story Riley was giving us so he asked Riley if he saw an elephant at school?  Riley -  Yup

So of course Rex had to get in on the action so he asked-

Did you eat a squirrel for lunch? 

Riley-  Ya

Did an alien land on the playground?

Riley-  Ya

Did you see a caveman?  No Caden. 

Good to know he does listen to some of our questions.  He actually did talk to Caden after school. 





Rex and Riley 2010



 

At My Own Pace

Down Syndrome Creed

Author unknown

 

My face may be different,

But my feelings the same.

I laugh and I cry,

And I take pride in my gains.

I was sent here among you,

To teach you to love.

As God in the heavens

Looks down from above.

To Him I am no different.

His love knows no bounds.

It's those here among you,

In cities and towns,

That judge me by standards

That man has imparted.

But this family I've chosen

Will help me get started.

For I'm one of the children,

So special and few,

That came here to learn

The same lessons as you.

That is acceptance,

It comes from the heart.

We all have the same purpose,

Though not from the start.

The Lord gave me life,

To live and embrace,

And I'll do it as you do

But at my own pace.

This is still one of my very favorite pieces on Down syndrome.  It  good reminder of what is important in this life.  Everyone that knows Riley is better for it.  We are very fortunate to be surrounded by so many amazing people that understand this little fact immediately and completely  Others are much slower to understand.  Part of me wants to point it out to them so they can sit back in amazement like the rest of us as we watch and learn from Riley.  The selfish part of me figures its their loss and I'd be happy to soak up all the love and excitement Riley has to share that others are too quick to over look. 

 

Special moms

One of the most important parts of parenting a child with special needs is moms night out. A night out with a few of my special moms is just what the dr ordered. It makes for a much happier much more relaxed mom.

One of the greatest gifts Riley's chromosome has brought us is amazing friendships !!!

Celebration!

Thankfully today we have a great celebration to distract me from the ugly list of "safety" issues that Riley has at school.  I'm not totally sure how we went from great reports to being in the principals office but that is where we are today.  Tonight we take a break from the drama of kindergarten to wish a very very special lady Happy Birthday. 

Great Gramma Elsie turns 94 today.  I never knew my great grand parents so I think that is very very cool that my boys will remember theirs.   We were able to visit her in May during our trip to Florida.  My boys love love love her...  and so do I. 

When we visited in May the boys were able to spend some time getting to know Great Gramma better.  Rex had to interview her for his 3rd grade homework.  It was great to hear some of her stories and for Rex to understand more about his family history.  Rex's favorite quote was when she told him that he shouldn't have to do homework on vacation!

Happy Happy Birthday Elsie!!!  Wish we were there to help you celebrate!







Riley, Great Gramma Elsie,Rex
May 2012





Hitching a ride to Rex's baseball game with Great Gramma
June 2010




Reading Books