Now that the holidays are almost over, it's time to review the goals from the beginning of this year.
1. Carry a regular umbrella, with or without crutches. Never attempted. She really didn't seem to want to--she loves her umbrella hat, and as one commenter noted, it is difficult bordering on unsafe at times.
2. Elena will go up and down steps (that have a banister or handrail) with only one hand holding it, one hand free, without supervision, regularly alternating right and left feet, at a good pace. CHECK. Elena can do this. She does this occasionally...but we have not been diligent in encouraging her to do it on a regular basis. I traded independence (stairs without supervision--she can crawl or walk up, and walk or slide down on her rear) for intense supervision on this one. My Christmas present from Elena was that she would walk up and down for me, with me waiting at the bottom of the steps. We agreed on a "belated" Christmas gift, b/c every time I mentioned it, she didn't feel like practicing (and when Christmas rolled around, she was mortified she wasn't ready).
3. Elena will take a group swim class and/or swim without floatation devices in the neighborhood pool. I did not get around to lessons this year! I'm still upset with myself about this one.
4. Elena will get in the bath, wash herself and her hair, get out of the bathtub, dry herself off with a towel, and put on her own pajamas. This was attempted, but the hair washing was not entirely successful. BUT she was able to get in and out of the large bathtub (last year it was only the smaller one), wash herself (hair had issues), get out, dry herself, and put on her pjs. I'm giving this one a CHECK.
5. Elena will play mini golf, with one or both hands, either with or without crutches. Never attempted. We planned on mini golf at the beach, but it rained.
6. Elena will make her own breakfast. Never attempted. But she has really helped with cooking this year, including washing, peeling, and cutting (!). She can also set the table and put food/groceries away.
7. Elena will dress herself in time for school. CHECK. She doesn't do it every day, but she has on occasion.
8. Elena will spend the night at a friend's house with NO meltdown. CHECK!
9. Elena will point and flex her feet on demand. CHECK. Her point is not good, but it is better than it's ever been. She has to close her eyes and concentrate, it doesn't come naturally.
10. Elena will do some of her own stretches herself before bed, instead of us moving her body to do all her stretches. (Laughts) Admittedly, this is a pipe dream. She does do two stretches on her own (butterfly, glute stretch) and is expected to hold "stretching" poses (frog pose, half-kneels, full stand, bridge).
Crazy goals for E?
*1. E will twirl. No, but she can turn around in 2-3 steps.
*2. E will walk a dog, without falling while holding the leash. CHECK!
*3. E will bike up a hill. She did bike up a surface that was not entirely flat. For you and me, it was pretty flat, but she really did have to work at it. Half-check.
*4. E will ride a wave in on a float. She did with me! Call it a CHECK.
*5. E will catch and throw a frisbee. Not attempted.
And goals for me:
1. Find a way to relax. Half-check. The fact that my husband has graduated from business school makes this easier in general.
2. Stay up after the kids go to bed. CHECK. The fact that E goes to bed well now makes this possible.
3. Get E on the bike more often. Myself, too--I have mine on a trainer in the garage ready to go. Half-check. I did, for a while...and then I ended up prepping for birthdays, parties, Brownies, etc.
4. Do some rides/runs/multisports races around town. Some of them our whole family can do together. CHECK!
5. Find an artistic outlet. Does making a bunch of cars for Viv's birthday count?
Next up: 2013 Goals
Saturday, December 29, 2012
Sunday, December 23, 2012
Ice Skating
Yesterday we celebrated the holiday season with some ice skating with friends!
We were so excited! Jason and I figured that it would be a lot like the time we took the girls last year--a lot of hand-holding, and two parents with sore backs. We knew they would have buckets for kids at this rink. Viv had never tried one, but Elena had. It was terribly unsuccessful, b/c she was on her toes so much in her skates while leaning on a bucket that the skate's toe picks kept her from going anywhere. Still, the kids had fun.
So we had high hopes this year. They started to fade a bit when Elena got on the ice and had a terrible time with her footing--sliding everywhere (of course! it's ice!) while her peers managed to stay upright (at least part of the time). Elena had a very hard time being upright, no matter how many hands/arms/torso we held (it was a little better with one adult holding one hand on each side). She started to get a little frustrated.
I put her on the buckets and pushed her around for a while. In the beginning, every child was just focused on staying upright they couldn't notice what was going on around them. Elena relaxed when she noticed she wasn't the only one having a difficult time skating. I also had her see how other kids were using the buckets--their feet further away from the bucket, with their legs pretty straight and them bending at the waist to lean on the buckets. E was ready to try again.
And again and again and again.
Bonus Vivian: Viv tries to help her classmate T after he falls. Precious!!!
Everyone LOVED skating--she got to enjoy time with her friends, neighbors, classmates--as did Vivian, who is apparently a natural on skates. It was a great time, with wonderful people, to celebrate the season, and we're so happy we got the chance to enjoy skating with friends.
We were so excited! Jason and I figured that it would be a lot like the time we took the girls last year--a lot of hand-holding, and two parents with sore backs. We knew they would have buckets for kids at this rink. Viv had never tried one, but Elena had. It was terribly unsuccessful, b/c she was on her toes so much in her skates while leaning on a bucket that the skate's toe picks kept her from going anywhere. Still, the kids had fun.
So we had high hopes this year. They started to fade a bit when Elena got on the ice and had a terrible time with her footing--sliding everywhere (of course! it's ice!) while her peers managed to stay upright (at least part of the time). Elena had a very hard time being upright, no matter how many hands/arms/torso we held (it was a little better with one adult holding one hand on each side). She started to get a little frustrated.
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| The Wall was tough |
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| Try Again |
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| Ride and Observe |
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| Viv is enjoying herself |
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| Dad Lets Go |
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| YES YOU CAN |
Bonus Vivian: Viv tries to help her classmate T after he falls. Precious!!!
Monday, December 17, 2012
Jingle Bell Run
This fall Elena wanted to run a race. There were a few, but it never ended up happening--one of us got sick, or stayed up too late, or the weather was lousy. Well, I found the perfect race!
The Jingle Bell Run is an annual fundraiser for the Arthritis Foundation, and they are held all over the country. There was one 30 minutes away, and the course couldn't have been more perfect.
There is a 5K run and a 1-mile walk option. We decided to do the mile as a family. I knew E could make the distance, and I also knew it would be a challenge. The course was very flat, but with difficulties E could manage--gravel, a little ditch here and there, and grass. I also thought that we could finish at the same time as some of the runners--which would give Elena the experience of "not being last", which is always nice if you can get it.
I always put names on the outside of the kids' clothing--that way they can hear their names being cheered as they run!
Elena started to tire after 1/2 mile. Tire, meaning more walking, some sloppy footing (no falls), and stopping. We brought water, and I was prepared for her to sit on my knee and take a rest. But she never did.
E finished the mile on pace; she typically walks 1/4 mile in 7-8 minutes when walking briskly or doing some running. We were at the back of the pack when the running clock started; my timer said we finished in 30 minutes. Pretty Solid! Great job girls!
The girls were really proud of themselves, and had some snacks, and were congratulated by costumed race participants. Then we headed home for hot chocolate and chilling out.
The Jingle Bell Run is an annual fundraiser for the Arthritis Foundation, and they are held all over the country. There was one 30 minutes away, and the course couldn't have been more perfect.
There is a 5K run and a 1-mile walk option. We decided to do the mile as a family. I knew E could make the distance, and I also knew it would be a challenge. The course was very flat, but with difficulties E could manage--gravel, a little ditch here and there, and grass. I also thought that we could finish at the same time as some of the runners--which would give Elena the experience of "not being last", which is always nice if you can get it.
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| Dressed and ready to go! |
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| Warming Up |
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| Making our way around the Polo Field (~1/3 into the mile) |
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| Just past 1/2 mile mark |
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| Approaching the finish! Home stretch on the pavement! (Polo grounds in the rear of pic) |
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| Viv's almost there! |
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| E at the finishing chute! |
E finished the mile on pace; she typically walks 1/4 mile in 7-8 minutes when walking briskly or doing some running. We were at the back of the pack when the running clock started; my timer said we finished in 30 minutes. Pretty Solid! Great job girls!
The girls were really proud of themselves, and had some snacks, and were congratulated by costumed race participants. Then we headed home for hot chocolate and chilling out.
School Field Trip
Just a quick recap, b/c I have a few things to write about tonight; E had a school field trip last week. Field trips always take a lot of planning (and a bunch of worrying on my part). Wondering how well/long E will get around, will she eat well (she needs to be sitting comfortably to use her hands well), can she keep up, etc.
E's school team (including myself) have been preparing for this trip for months. Wondering what kind of bus she would ride was one of them (there is a possibility of not using a SpEd bus if we could get a 5-pt harness for E's seat). I have no problem with the SpEd bus--and, as far as I know, neither do any of the other kids. I guess second graders could use the bus as a subject for teasing, but as far as I know, that really doesn't happen to Elena. What I do worry about is the use of school resources--I want the school to take transportation that works for the group, not just an extra bus b/c of my child. To date, this has never been an issue--but I'm always looking for options to keep costs down for the school if I can help it.
Here's what the team decided:
They would take two buses, one large SpEd bus and one regular bus. E would bring her wheelchair. No one thought she would need it, but all of us thought if it was possible to bring along it would be better to have it just in case. I spoke to E about it, and she agreed, as long as it would be her choice if and when to use it. Elena would ride in her carseat (it's her regular bus seat). My big concern was the bus ride; we take off E's shoes and braces and give her foot support for long drives (over 30 minutes) b/c her feet lose sensation when dangling for that long in her braces. The school PT fashioned a foam cushion to support her feet, and it worked beautifully for her. Elena "jumped off the bus and was ready to go" once the class reached their destination, which was a 1-hr bus ride away.
My other concern was E staying with the group if they had a guide. We all agreed that she would get a few minutes head-start. Her teacher did this on only two occasions; the first one, the kids caught up to her--and the second one, they never did!
Elena was pretty tired that evening, but this has been the BEST field trip report to date. This gives both Elena and I confidence about keeping up with her peers, even in a new environment.
I can't thank the school team enough for making this such a huge success!
E's school team (including myself) have been preparing for this trip for months. Wondering what kind of bus she would ride was one of them (there is a possibility of not using a SpEd bus if we could get a 5-pt harness for E's seat). I have no problem with the SpEd bus--and, as far as I know, neither do any of the other kids. I guess second graders could use the bus as a subject for teasing, but as far as I know, that really doesn't happen to Elena. What I do worry about is the use of school resources--I want the school to take transportation that works for the group, not just an extra bus b/c of my child. To date, this has never been an issue--but I'm always looking for options to keep costs down for the school if I can help it.
Here's what the team decided:
They would take two buses, one large SpEd bus and one regular bus. E would bring her wheelchair. No one thought she would need it, but all of us thought if it was possible to bring along it would be better to have it just in case. I spoke to E about it, and she agreed, as long as it would be her choice if and when to use it. Elena would ride in her carseat (it's her regular bus seat). My big concern was the bus ride; we take off E's shoes and braces and give her foot support for long drives (over 30 minutes) b/c her feet lose sensation when dangling for that long in her braces. The school PT fashioned a foam cushion to support her feet, and it worked beautifully for her. Elena "jumped off the bus and was ready to go" once the class reached their destination, which was a 1-hr bus ride away.
My other concern was E staying with the group if they had a guide. We all agreed that she would get a few minutes head-start. Her teacher did this on only two occasions; the first one, the kids caught up to her--and the second one, they never did!
Elena was pretty tired that evening, but this has been the BEST field trip report to date. This gives both Elena and I confidence about keeping up with her peers, even in a new environment.
I can't thank the school team enough for making this such a huge success!
Monday, December 10, 2012
Neighborhood Trek
A few weeks ago (b/c it's taken me a while to get posts up) Elena had an idea--to go on a walk. If you know our neighborhood, it's hilly. Really hilly. But, it was a nice day, so--SURE-why not?
E's first choice was to walk to the store, a little less than a mile away. There is a very dangerous intersection, so we decided to try to make our walk up to that point (not crossing the street). Then I wondered if E could make it back...so I decided to leave the car at the intersection, so we would have options.
Our new plan: to walk to the car, go to the store (walking through the store if she had energy) and then come home.
NO PROBLEM.
E's first choice was to walk to the store, a little less than a mile away. There is a very dangerous intersection, so we decided to try to make our walk up to that point (not crossing the street). Then I wondered if E could make it back...so I decided to leave the car at the intersection, so we would have options.
Our new plan: to walk to the car, go to the store (walking through the store if she had energy) and then come home.
NO PROBLEM.
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| On our way |
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| Going strong |
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| Steady she goes |
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| Big hills (arrow was where we were) |
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| Slight slowing down; JUST A BIT |
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| Still smiling! |
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| One more hill to the car! |
E WAS AWESOME. She had a great pace, and only slowed down a little ONCE. She was motivated, looking good, and very proud of herself.
This is HUGE. This means that she has enough stamina to go to a friend's house in the neighborhood--almost anywhere in the neighborhood--under her own power. HUGE.
Sunday, December 2, 2012
Thanksgiving Recap
WOW I've been kind of horrible at putting my posts up on time, sorry!
We had a whirlwind Thanksgiving, mostly b/c Jason and I had to work on Wednesday. We packed the girls up and drove them to Grandma and Grandpa's house Wednesday evening. We had special plans for Thanksgiving Day...
Exercise (PICTURES WILL BE UP AS SOON AS I PONY UP $$ to GOOGLE FOR MORE SPACE)
We took the kids to the Fantasy Playground. We've been here many times before, and we love to come back--not only b/c the playground is cool, but it's SO GREAT to see the progress both E and Viv have made as they've grown. Elena did the ENTIRE playground herself, except for a few very large steps (they are giant). Including this "burma bridge"--Jason was there to spot E, but he didn't touch her OR the ropes!
Then we came home to have a very special meal with E and Viv's soon-to-be new Aunt Melissa (my soon-to-be sister-in-law) and her family. It was wonderful, and the kids looked so cute in their outfits (I bet I don't even have a picture!). Even though our trip was short, it was a great family time. We ended up driving home Thanksgiving night...
Because the girls were invited to be a part of our local Thanksgiving Parade!
E and Viv (and I) rode on the Camp Holiday Trails float in the parade. It was COLD, but the kids were very excited to be on the float and do their job--do their best waves! We heard lots of voices yelling "HEY ELENA!!" in the crowd as we went by (and a few shout-outs for Vivian, too). They had a great time, and then we went home to warm up and begin our Christmas decorating--the first part being watching The Nutcracker (Baryshnikov version). WE LOVE IT!
We had a whirlwind Thanksgiving, mostly b/c Jason and I had to work on Wednesday. We packed the girls up and drove them to Grandma and Grandpa's house Wednesday evening. We had special plans for Thanksgiving Day...
Exercise (PICTURES WILL BE UP AS SOON AS I PONY UP $$ to GOOGLE FOR MORE SPACE)
We took the kids to the Fantasy Playground. We've been here many times before, and we love to come back--not only b/c the playground is cool, but it's SO GREAT to see the progress both E and Viv have made as they've grown. Elena did the ENTIRE playground herself, except for a few very large steps (they are giant). Including this "burma bridge"--Jason was there to spot E, but he didn't touch her OR the ropes!
Then we came home to have a very special meal with E and Viv's soon-to-be new Aunt Melissa (my soon-to-be sister-in-law) and her family. It was wonderful, and the kids looked so cute in their outfits (I bet I don't even have a picture!). Even though our trip was short, it was a great family time. We ended up driving home Thanksgiving night...
Because the girls were invited to be a part of our local Thanksgiving Parade!
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| it was cold |
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| lots of glare, sorry |
E and Viv (and I) rode on the Camp Holiday Trails float in the parade. It was COLD, but the kids were very excited to be on the float and do their job--do their best waves! We heard lots of voices yelling "HEY ELENA!!" in the crowd as we went by (and a few shout-outs for Vivian, too). They had a great time, and then we went home to warm up and begin our Christmas decorating--the first part being watching The Nutcracker (Baryshnikov version). WE LOVE IT!
Friday, November 23, 2012
Halloween recap (overdue)
Well, I lost track of time and then had a hard time locating my camera--but here it is!
Rather than influence the kids' costumes this year, I gave them "free choice". Vivian had a hard time deciding between Spider-Man and a Cheeseburger. Finally she chose Spider-man. As soon as Elena heard that, she decided to be Dr. Octopus (from the 1960s cartoons).
We had a busy Halloween day planned...we were going to a neighborhood party immediately when Jason and I got home from work. It was very cold, but we figured we'd be back home to layer clothing under costumes and then trick-or-treating.
Well...SURPRISE! We found out on arrival that the party was outside. Still, the kids had a great time running around, getting excited about candy, and seeing neighborhood friends. Then, E and Viv decided to go trick or treating with some friends--starting from the party (at the neighborhood clubhouse). This meant that I left Jason with the car and walked home, since I figured he would do a loop with the kids and then drive back.
SURPRISE AGAIN. I was stunned as Jason kept texting me--the kids were going strong, Elena was doing all the walking, and she had decided to trick-or-treat all the way home. THIS IS A HUGE DEAL. Our neighborhood is extremely hilly, and does not have streetlights or sidewalks. It was cold, the kids were not dressed very warmly, and I'm not even sure Jason had a flashlight (because our original plan was to come home first). Last year, Elena went to maybe 12 houses. It was very cold last year also, and we had agreed she could stay out as long as she was not expecting to get carried. This year, she doubled that, at least. She probably walked about a mile (counting to and from houses along the street), was cold, and ended the night up our hilly street, including going up our front steps, by herself. I was AMAZED! She was happy, very proud of herself, as she and Vivian rung our doorbell to surprise me with their last Trick-or-Treat of the night!
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| The Inspiration |
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| The Duo |
We had a busy Halloween day planned...we were going to a neighborhood party immediately when Jason and I got home from work. It was very cold, but we figured we'd be back home to layer clothing under costumes and then trick-or-treating.
Well...SURPRISE! We found out on arrival that the party was outside. Still, the kids had a great time running around, getting excited about candy, and seeing neighborhood friends. Then, E and Viv decided to go trick or treating with some friends--starting from the party (at the neighborhood clubhouse). This meant that I left Jason with the car and walked home, since I figured he would do a loop with the kids and then drive back.
SURPRISE AGAIN. I was stunned as Jason kept texting me--the kids were going strong, Elena was doing all the walking, and she had decided to trick-or-treat all the way home. THIS IS A HUGE DEAL. Our neighborhood is extremely hilly, and does not have streetlights or sidewalks. It was cold, the kids were not dressed very warmly, and I'm not even sure Jason had a flashlight (because our original plan was to come home first). Last year, Elena went to maybe 12 houses. It was very cold last year also, and we had agreed she could stay out as long as she was not expecting to get carried. This year, she doubled that, at least. She probably walked about a mile (counting to and from houses along the street), was cold, and ended the night up our hilly street, including going up our front steps, by herself. I was AMAZED! She was happy, very proud of herself, as she and Vivian rung our doorbell to surprise me with their last Trick-or-Treat of the night!
Tuesday, November 20, 2012
Holiday Card Exchange 2012!
***Repost*** (If you've already responded, details will be coming the following week!)
If you're new to this blog, I
organize a card exchange every year for Elena (aiming for a late
December delivery)--she LOVES mail, and the exchange is a great way to
remind E there are other kids out there like her. Kids who wear
braces, or wear glasses, use crutches/wheelchair/other devices, who
have siblings, friends, go to school, etc. etc.--kids who might be
different.
The
typical card exchange involves a little letter telling E something
about yourself, or your child (they can write part/all of the letter,
or send a drawing or something) and a photo of you, your family, your
child, or favorite pet, etc. To get a letter in mail from this
exchange is a great experience--to know that someone out there--a
stranger--connects with you, values you and your story--it's simply
fantastic.
I
certainly hope that everyone who has taken part in the exchange
previously has enjoyed their letters--occasionally one is late, which
is why I'm starting this early--IF you are a overseas follower of The
Doodle, we'll need to get started on letters (I learned the hard way
they can take a while!).
If you are interested in a card exchange, please email me (cpmom2009 AT yahoo DOT com) with the following information:
Your name (and/or child's name), child's age, diagnosis, favorite thing(s), siblings, etc.
You address (in full, including country)
How long mail will take to arrive from Virginia, United States (if you know) (particularly important for overseas mail)
What holidays you celebrate, if any, near the end of this year
Primary language--If English is not your primary language DON'T WORRY, we'll try anyway!
I
will not share your email information OR addresses with anyone without
your permission. This exchange is between E and you. And, maybe E's
sister Vivian, b/c sometimes she likes to write letters too.
*NOTE:
This is NOT a gift exchange. Sometimes people send little things, which
is very nice--but never expected. We'd most appreciate a card, a
message (or a drawing/doodle/coloring if writing is difficult), and a
picture of your child. We typically send a card with a message (Elena
writes some or all of it) and a picture.
Saturday, November 10, 2012
My Very Busy Vivian
HAPPY FOURTH BIRTHDAY TO YOU, my little ball of entropy!
For your 4th birthday party, you chose the theme "Busytown" (Richard Scarry's Busytown). We invited your friends and classmates (you are in preschool now!!) and everyone had a great time with the vehicles Mommy made, and playing in our little busy "town". Thanks to Grandma and Grandpa for helping, and taking so many great pictures! (It was hard for me to choose just a few...)
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| Viv driving the Apple car |
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| Stop Apple! |
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| E's Lowly hat |
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| Viv fills up J's ride |
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| E in the convertible |
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| Z in the Pickle car |
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| E speeds down the road |
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| E in the convertible |
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| Z peering through the Apple car |
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| A and Viv find the leaf pile |
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| Happy Bday Girl |
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| A and J |
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| J drives the Banana car |
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| S working the local store |
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| E scooted all by herself |
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| Viv convertible |
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| Z liked to talk and drive |
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| Too young to drive |
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| E works the "gas pump" |
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| M liked the animal noses |
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| O bikes |
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| M in the Delivery Truck |
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| S drives the Tow Truck |
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| Z in the Race Car |
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| "Moms at the shop" |
The Busy Birthday in action!
Thanks to all our friends who came to celebrate Viv's birthday with us! We had such a great time!
We celebrated with a little cupcake on your actual birthday. Your birthday wish was that Mommy and Daddy would always be there to take care of you. OF COURSE. :)
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| Making her wish |
We love you to pieces,
Mommy, Daddy, and Elena
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