My Letter to Santa

It's that time of the year....Santa will be coming soon so I thought I better get busy writing him my letter. Since I started kindergarten I've gotten good at drawing cirles around the pictures so Mom made me a page that I could write my own letter to Santa Claus. Mom says he needs all the help he can get! Hopefully Santa won't count it against me but I felt I had to confess I've been a "bad" girl. Mom didn't agree but I really felt if there was any chance Santa had thought this, I better say it....better error on the safe side than Santa think I was lying! Mom says he can see me all the time...even when Mom and Dad aren't looking! So...just in case I am on your shopping list also...here is my letter to Santa. Mom and Dad said he will be at the mall soon so guess I will take my letter to him there intead of taking a chance on snail mail.

Speech Therapy Session

Anne is one of my Speech Therapists. She helps me learn to use my Dynavox. This video is part of one of our session together. Anne usually doesn't use food in our sessions but I happened to have some raisins with me because I was coming from kindergarten. Sometimes I can be a bit stubborn as you will see in the video...especially after I just finished three hours of kindergarten. It can be a bit hard to concentrate for such a long time. One thing that Anne does really well is she encourages me to learn and pushes me but at the same time she does an awesome job at following my lead. She is alot of fun!

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I Gotta Go POTTY!

Big steps forward in becoming an independent young girl! More and more I've been telling people when I have to go potty. Already today I've told Mom FOUR times! I use my sign language to tell people. Mom was video taping me today when I was waiting and waiting and waiting for my friend Shantell to come play. I waited so long I had to use the potty!

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Roller Skating

So just under a couple of years ago, I tried out roller skating while at a friend's birthday party and I refused to even stand up on those silly shoes...walking is challenge enough without adding wheels into the mix! Well, today another friend had her birthday party there...and this time I DID IT! I started off a little slow...just walking around the rink with my walker...no roller skates. Even did a little limbo competition! Since Mom couldn't come out to the rink with me, (she won't wear those shoes with wheels on them either)I had to figure out the limbo all by myself and I did it! Mom said I had to go get in line...I did it! I had to wait my turn in line...I did it! I had to go underneath the limbo stick...I did it! I knew exactly what to do just by watching the other kids! And not only did I do it once...since I made it under the limbo stick, I went back to the end of the line and did it again..ALL BY MYSELF!

After pondering the roller skates...I gave them a try! It was a challenge but I worked on it for over 30 minutes! Not quite ready for the Olympic team yet, but with this amount of skill increase in only two tries...I would say the Olympics may not be just a pipe dream!

Using My Trackball Mouse

Recently I had an assistive technology evaluation at school. It was partly to see what would work best so I can access the computer to learn and to show everyone all of the things I know. Because of my motor planning issues (at least that's what the grown-ups say) it is important that I can use the easiest way possible to access the computer. The way I see it, is that I know what I want to do but alot of times to get my entire body to cooperate at the same time is hard. That means, it takes ALOT of effort to do something simple that other kids can do in just a few seconds. I really shouldn't have to work that hard to learn and to give an answer. During the evaluation I was very intrigued by the keyboard because I'm used to the kind of keyboard on my Dynavox. So I took the opportunity to see what it felt like to run my hands all over the keyboard. I guess that wasn't the time to explore because the evaluation team decided that I didn't know that I could make the computer work all by myself. But...the truth is....I already do! And so...here's proof! This is me using my trackball mouse. I can move the mouse to where it needs to go and push the button to run the program. Mom keeps close tabs on the right mouse button...she says that one is just for grown-ups! It still takes alot of work to do something very simple like choosing a spot on the screen. I'm still hoping to get a touchscreen because then I could concentrate more on my brain skills rather than having to think so hard about what my whole body is doing.

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My Six Year Old Portraits

Finally got Mom to take me in for my six year old portraits. I really prefer to not have my picture taken so I made the photographer work for his money! Mom let me pick out one of my outfits...the pink one with my pink shiny shoes was my choice!

Nature Center

A few weeks ago Mom, Bob and I went out to the Nature Center. It was the perfect place to ride my trike and for Bob to get some exercise. They have the coolest play structure. My leg has been feeling a little bit better since I started a pain medication called mobic so I had a chance to really do some climbing!

Walking the Plank!

Climbing the Slide!

Practice...Practice...Practice

Whew...so much as happened since I last posted in July. I'll have to catch you up later. Can you believe it...I'm in kindergarten. Mom made one of the extra rooms in our house into my Learning Room! It is my own little school room at home and I love it! It gives me a great place to practice all of the things I am learning in school. And some day...Mom says I'll have to do homework! YUCK! But for now...here are a couple of videos of me practicing. One is of me learning to spell my name and the other one is me working on my very first site word...."the!" So check out THE videos and see what you think. Listen close during the second video about "the." You can hear me saying a pretty clear version of "the." And then...when Mom shows me the word "Bob"....I point to it first and say "Bob" Can you believe I'm learning to read! I'll post pictures of my learning room later on.

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Good-bye Megan!

Today was my last session with Megan, my physical therapist. Bad for me but great for her because she got a new job in Gunnison, CO where she will be able to be with her family all of the time instead of ahving commute to Pueblo. Dad and Mom will always remember Megan as the PT who was working with me when I started to walk by myself! And speaking of walking...things are not going well this summer in that category. My leg has really been hurting and so now if I don't have my walker I mostly do the bear crawl around the house or move really slowing while holding on to furniture. Some days are better than others which is good. A few days ago I started a new pain medication which doesn't seem to be helping much. If it doesn't work, the next plan is to do a steroid burst to see if that helps out. I'm also going to have my labs redone because there were a number of things that were slightly elevated but not enough to give the doctors specific information.

Shooting Stars!

Even though it rained alot on the 4th of July, I still got to watch the fireworks at the Riverwalk. The next week at preschool alot of my friends were drawing shooting stars at the creative arts table. My teachers were all so excited when I drew a shooting star all on my own! I just watched my friends and decided...hey...I can do that to and so I did! What's really cool is that I have great teachers who recognize the things I do in my own way. Thanks so much for sharing this with Mom and Dad!

A Weekend With Bernie the Bear!

Bernie the Bear is a special friend to my preschool classmates and me. Every weekend he gets to come home with one of us. We write in his journal about all the things he got to do with us while at our house. On Monday morning the teachers read it to the class so we learn more about each other and what Bernie did.


Last weekend Bernie got to come home with me! Of course I had to make sure he got to share my favorite weekend breakfast of McDonalds pancakes! He even went shopping at the outlet malls with Dad, Mom and me! And the best part of the weekend..he went to Ethan's birthday party with me!

Bob and Me!

Bob is getting soooo big! He now weighs 70 pounds...just like me! He has been taking the summer off from his puppy classes. I can't wait until he gets the okay to go everywhere with me!

One day Bob went with Dad, Mom and me to the intermural fields at the university to play around. It was fun to be in a place where both Bob and I could really go fast!

We love being together but Dad and Mom have to keep a close eye out because we always want to be right next to one another but we are both still learning our own strength when it comes to being together.

Catching Up!

Whew...summer is FLYING by! Mostly because I've been keeping busy playing and having fun. Just to catch up, it started with our annual Memorial Day camping in South Dakota.

It was great seeing Grandma and Grandpa, aunts and uncles and all of my cousins. It always makes me wish even more that I lived closer to everyone so I don't have to wait so long to see them. I loved riding in the lady bug train that Uncle Charlie and Aunt Kathie brought. Even tried my hand at SD fishing. I like throwing out my pole (sometimes I take that very literal and Mom gets to go wading in the water). I haven't quite got it figured out that it takes more than two or three turns of the reel to bring the fish to shore. When it does final get there...usually on someone else's pole, I am the first to want to touch it. Aunt Michelle helped me brush up on my bean bag toss skills. I'm hoping when I get bigger I can join the Annual Bean Bag Tournament that is always a part of the weekend. Let's see...what else have I been up to?

Swimming at various places around Colorado. Mom and I went to Walsenburg to the water park. I love the water but only when it isn't unexpectedly splashing in my face...that trait I inherited from my Grandma Parke! I'm getting better at keeping my mouth closed in the swimming pool instead of trying to drink all the water...only problem is it makes me look like I'm the meanest swimmer in the water!

I'm hoping to get in alot more swimming, maybe a night of camping, maybe a trip to Grandma and Grandpa's house to ride the boat and tons of other things before kindergarten starts on August 24! Maybe I'll see you around!

AS Walk-A-Thon

A huge thank you to everyone on the Peanut's Peeps team. Thank you to those who walked, those who gave and to those who had me in their thoughts. The day started a little rainy in Pueblo but by the time we were in Denver and the walk started it was another gorgeous Colorado day. I had a little extra challenge this year throughout the walk...a flat tire on my trike, but even that didn't stop me! A special shout out to Debie who hasn't missed a walk-a-thon since I was born! And another special shout out to Aunt Michelle, Uncle Mike, Max and Mason for walking in honor of me at the Omaha walk. Dad, Mom and I are so blessed to have such supportive people in our lives as we travel this journey. Words cannot say how much it means to us. And so...we are "another step closer" to a cure! Or from my perspective..."we are another flat tire rotation closer to a cure!"

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Are These Seizures?

It was a year ago that I began having small seizures more frequently and so I started on regular medication. Learning to tell what is a seizure and what isn't is still kind of hard for Dad, Mom and me so Mom took these videos to help find out if it is seizures or not. The first one is more of weird eye movements I was making after going for a trike ride. Sorry for the rough look but I had a nosebleed coming home from school today, the scar on my nose is from a fall after a seizure at school a couple of weeks ago and then during the trike ride tonight I got my foot caught underneath the trike and it HURT so I was crying before this video was taken. Also, on review of the video we've decided...next time possible seizure happening I need to remove the sucker from my mouth!

The second video is when I was falling asleep on the couch with Mom. I've started to do this type of thing more often as I fall asleep. My head always kind of jerks to the left like I'm trying to look over my shoulder. Usually it is a little more of a jerking motion that goes farther to the side. In this video, it is at the beginning video that we are wondering if I had a seizure. Then if you watch really close when I have my hands over my face, you can see my left eye through my mittens and it looks like it is way up in my head. And because I know you are wondering...what's with the ladybug socks on my hands...it keeps me from pulling my hair out as I fall asleep. Don't laugh...it really works and I like them!

Valued Strengths

That's the name of Mom's store she "opened" at Zazzle. With all of the meetings we've been having with the school district lately, it really has her thinking about all of the strengths that come with Angelman Syndrome. So...in celebration, she has created apparel that reflects many of these strengths. Check out her store at http://www.zazzle.com/EmmaKristineE
of the proceeds are going to the Angelman Syndrome Foundation.

Make It Go Away!

My leg continues to bother me. I can go good for about 15 feet, then it starts to hurt so I stop, "shake it out" and go again. I guess it is one way to make sure I stop and smell the roses along the way...but does it have to feel like I'm always stepping in the rose bush??? Joe, my orthopedic physical therapist, measured my knee and it was bigger than the other one! I so hope the MRI on June 3rd gives us a for sure answer so I can have a pain free summer like alot of last summer was. I was hoping to play on a t-ball team this summer but with my leg hurting like this...I'm destined for the bleachers!

I'm Getting Ready for Kindergarten!

Everyone has been very busy making sure things are ready for me to start kindergarten. All of the therapists, teachers and other people have come to watch how great I do at preschool so they will know I'm going to be a star in the kindergarten class. Mom and Dad have been going to alot of meetings. IEP is what they call it...I think it stands for Incredible Emma Planning meetings! This week I got to go to the kindergarten class. The kids were really nice...they loved my talker! Check out Oreo...he is the class hamster! Mom took lots of pictures so I can look at them over the summer and remember how fun my kindergarten class visit was. After my visit, I showed my new therapists and teachers all the things I know. The thing I did best.....I was ME! Yep...Incredible, Awesome, Amazing and Silly Me! I think I won them all over cause they kept saying..."Boy we are going to have fun next year!" When it was time to leave I really didn't want to go. Can't wait to start kindergarten!

Preschool Graduation

First Bob graduates...now it is my turn! To celebrate my preschool graduation, my classmates and I sang Take Me Out to the Ballgame. Then we all got certificates and medals. And best of all...we made ice cream sundaes with sprinkles! These are my teachers. They are alot of fun and watch me really closely.

Introducing Valerie...One of My Speech Therapists!

I have alot of people helping me to learn and grow. One of my favorites is Ms Valerie. I see her every other week. She is helping me to learn to say sounds and words and to make my mouth stronger so I can stop drooling so much. Valerie always thinks of new things to do to keep me working...she is always very silly! This week she made me into a bean bag sandwhich because I was wanting alot of sensory input lately.

Congratulations Bob!

Yeah Bob! He passed his first puppy obidience class! Two more to go before he gets his Canine Good Citizenship Award. He is doing great going to work with Mom. The patients always ask where he is at when he doesn't come.

Boxer? Hockey Player? Skateboarder?

At this moment I could pass for any of these sports enthusiasts! Along with my missing tooth from yesterday, got myself a scraped up nose today. Right in the middle of dancing to Ghost Busters at preschool it hit me....one of those stupid seizuress! Face plant to the sidewalk was next as a reult of the seizure. My teachers did a great job taking care of me and gave me a popsicle which always helps. Dr. Simmerville checked me out...no broken nose!

Tooth Fairy to Visit Again!

Did it again! Lost a tooth! This time while eating garlic bread! While at the dinner table Mom heard me trying to crunch something while eating. Sounded like a rock had made its way into the garlic bread I helped Mom make! "Spit it out!" Mom said so I did! And there it was...one little white tooth!

Gone To Florida In My Mind!

Woke up to snow this morning but even that didn't stop my enthusiasm for my new swimming suit! I'm getting ready for my trip to Orlando in July. Mom, Aunt Michelle, Mason and I are going to the Angelman Syndrome Conference. In the meantime, I helped Mom cook while trying out my new swimsuit 'cause once I got it on...there was no taking it off!

Positive Thoughts Needed This Way...

Me and Bob have had some roller coaster days this week. Mom and Dad played a horrible April Fools on Bob and scheduled him to be neutered yesterday. He was so sad all day afterwards. Finally tonight he is getting back to himself. I left early from school to help Mom pick him up from the vet yesterday...it was a little stressful for Mom because the reason I left school early was that I had three seizures. So with me in the back seat and Bob in the front seat we drove home. Almost made it without incident but then Bob got sick in the car! Poor Bob...Poor Mom! Then after we got Bob settled at home Mom and I left for my doctor's appointment with Dr. Simmerville, my new pediatrician. We had the appointment to talk about the pain in my leg. It is back again and is not going away. Dr. Simmerville noticed that my knee was swollen and agrees that with Angelman Syndrome there are some things you have to live with but having a leg that hurts isn't one of those things. I totally second that opinion! So, he is really working hard to help us find out an explanation and treatment that gets rid of it forever. So today I got alot of lab work done and got more x-rays. I hate x-rays...lab draws aren't so bad...go figure! I am also going to have another MRI to hopefully learn something. He is also going to talk to my neurologist to see if we should be doing anything different for my seizures. The last couple of weeks my left hand stops working sometimes so that is also a little concerning to everyone...especially me! I also started working with another physical therapist today who specializes in orthopedic issues. He is my first ever guy therapist and so I'm thinking that is pretty cool! He has given me some fun excercises to work into my dance routine and the bonus is some of them include a balloon! So...alot going on right now but I'm still smiling and still hopeful this summer will be an awesome, pain free summer! Please say some prayers that it all works out. One last thing...thanks Grandma for talking to Mom yesterday. I could tell she felt alot better after talking to you!

The Power of the Potty Sign!

I have not only discovered I can use the potty sign to let people know I need to use the potty but have also discovered this simple little gesture of wiggling my fist a little in the air does SOOOO much more! If I don't feel like staying in bed...just give the sign and TADA...I'm getting helped out of bed. If I feel like taking a break from therapy...just give the sign and therapy ends...at least for a little bit! If one of my friends goes to the potty and I'm feeling a bit lonely...just give the sign and soon there I am...side by side with my friend! If I feel like playing in the water...just give the sign and I am in the middle of all kinds of water choices! The power can also be yours if you choose to use it!

If You Don't Like The Weather.....

just wait a little bit! That's what they say in Colorado (and alot of other places). But it did hold true during the past 24 hours at our house. Thursday morning I just needed a light jacket to play outside. Thursday afternoon it was such a blizzard that school closed early! Then Friday morning it was still snowing so I got the first snow day of my life! Dad, Mom and I hung out at home. Then by Friday afternoon it was warm enough the snow was melting and so Bob and I played outside! What a roller coaster report for the weather man!

See Ya Next Season!

Well...basketball is over for the year. I wished basketball season was a year round thing! I ask Mom all the time if we can go to the game by saying "baba" and making a dribbling motion with my hand. Mom helped me make a video of this year's basketball season! Here's to an awesome recruiting year and off season work out!

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Bowling...Another Sport I Can Do!

One of my best friends, Ella, turned 5 and had her birthday party at the bowling alley. Perfect chance for me to try out something new! The balls are a little heavy but it did prove to be alot of fun. And guess what...I bowled a 68! Mom and I thought that was great...Dad says I need to work on my game a little! Even better yet...my friend Makenzie got a STRIKE..how cool is that! Check out me in action! Ella's Dad and Nathan's Mom were helping me while Mom rolled the cameras!

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We Are In the Playoffs Baby!

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Whew...what a weekend! Daddy's team had two basketball games and made the play-offs. That means basketball season isn't over! YEAH!!! I LOVE going to basketball games! Ever since Dad was coaching when he and Mom were dating they have always looked at each other and gave one another a "heads up" just before tip off. This year I learned how to give Daddy a heads up also. Here's a video of it! In the beginning I am just enjoying the music. I give Dad the heads up just after I yell at him! Friday night was parent's night and since Imari's parents couldn't be there, Mom and I were his stand in. Imari gave me the flowers instead of Mom...pretty cool of him wasn't it! And on Saturday, Rocky from the Denver Nuggets was at the game doing some really cool tricks. I happened to catch him for a quick picture.

It's Outta Here!

One more tooth out! Not sure exactly when...just know on Friday night I was eating popcorn at the ballgame and when I got home....had one less tooth. Good thing new ones are coming in soon otherwise I may need to look into dentures! Even through all this tooth loss...still have one big beautiful smile...just minus some teeth!

Bob Is Getting BIG!

Bob is growing so big! I wonder if he is going to be taller than me someday! I still love being with him just as much as the very first day he came to live with me. We make quite the digging team...Bob loosens up the dirt and I scoop it into the bucket! We are getting better at learning to be with each other. I like to tease him by shaking my hand or foot by his face...then he likes to nip by hand or foot which then leads to both of us getting into trouble! I'm getting better at doing my Bob chores. Sometimes I like to mix the dog food and the water together...not a good idea since Bob doesn't like soggy dog food! If I had my way, Bob would have a chair at the table right beside me. Mom doesn't seem to like the idea so she is teaching Bob to lay on the floor when we are having dinner. Once again...one of us at a time...things go well...the two of us together...usually means trouble!

Jigsaw Puzzles...

... one of my favorite things to do these days. I think all my time practicing putting train tracks together is really paying off. I have grasped the concept of putting the puzzle pieces together like a train piece. Now I'm just working on being able to see parts of pictures that go together to make a whole picture. Some of my favorite puzzles are My First Puzzles by Ceaco Kids. http://www.ceaco.com/ceaco/index.php?category=10 Each set has four different puzzles, starting with just two pieces and going up to five pieces. I have the animals and the farm set. Now I'm waiting to get the vehicles set..which is another favorite thing of mine...cars! Mom added a video of me putting together one of my puzzles. You can check it out to the right under "Videos Of All I Can Do."

Just A Good Ole' Relaxing Weekend!

Daddy's team didn't have any games this weekend so we all just kicked back and relaxed. Dad, Mom and I went to the playground which was alot of fun. Can't wait til Bob gets all of his shots so he can start coming with us. It's not a weekend without some sort of sporting event so Dad and I went to the baseball game. My friend Makenzie was there so it was well worth the trip! Bob and I did spend some time relaxing together in the backyard. I always want Bob to swing with me so Mom put up my hammock so it would be easier for us to swing together!

My Dancing Debut as a Thunder Pup!

You should have been there! I went to the Thunder Pup Dance Camp and then performed at halftime of the men's and women's basketball games at Colorado State University-Pueblo. Tuesday afternoon for two hours the CSUP Dance Team called "The Pack" taught us a few dance steps and a dance routine to perform.

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This was my first ever live performance. I wonder if I could send this in for a potential spot on Dancing With the Stars!

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Now if you listen close to the first part of the video you'll hear some of the fan base I gathered after my first performance! No..just kidding...it was my friend Mary who plays basketball for CSU-Pueblo!

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Another Missing Tooth!

Well...now it is official...I don't have EITHER of my front teeth! On Saturday I was playing with my toys when Mom noticed a funny look on my face. She thought I had put something in my mouth I shouldn't have! So when she told me to take it out I threw it on the floor. It sounded like something really tiny and maybe dangerous so Mom went hunting! Much to her surprise it was my tooth!! I pulled it out all by myself! How's that for being a big girl! That makes 5 teeth I've lost! And a sixth one is ready to come out any day now!

"Bob"

Alot of people wonder why my dog's name is "Bob" so I thought I would share this! Because of my Angelman Syndrome, I have just a few words I can say with my mouth. I say "with my mouth" because there are TONS of things I can say with my sounds, my expressions, my hands and my talker. One of the names I can say is "Bob." Mom and Dad knew this because I have an Uncle Bob and I learned how to say his name pretty quickly. So...because "Bob" was a name I could say...that's how my dog came to be named "Bob." Now here is the really funny part! At the same time I was getting my dog Bob, my Uncle Bob got a new puppy for Christmas. So...he named his dog "Emmet" So Emma's dog is Bob and Bob's dog is Emmet! Family reunions should be a hoot! You can check out my video of me saying "Bob." You can also see how patient Bob is with me. We do have a few bumps in our relationship since he is still a puppy and I'm still new at having a puppy. I always want Bob to give me kisses but Bob usually wants to show me how sharp his little puppy teeth are! And just in case you are wondering...here is Uncle Bob and Emmet!

Maybe an Architect?

I have always loved building and putting things together. I think I get this from my Grandpa Parke! My latest building material is my big foam blocks. I love to make bridges and roads for my cars and trains. And now I like to see if Bob will come into my buildings. I like it when he walks up and knocks them down with his nose!

It's Gone....Yeah!!!

No more oxygen! No more stickers on my face! No more being tied to a tank! No more air blowing in my nose!

Bob is the Cutest!

Out of Commission for a Bit!

Sorry about not writing for a while but I was in the hospital for four days. The doctors still aren't really sure exactly what I had but the good news is...what they did helped me get better. It started with a bit of a runny nose for a couple of days followed by a couple of days of fever. When my fever got up to 105 Mom and Dad decided it was time to go the the Emergency Room. From there I was admitted to Kidsville which is the Pediatric Unit at Parkview Hospital. My room was the candyland room! My fever went down pretty fast but I just needed alot of oxygen to help me breathe. I got to come home on Thursday on some oxygen. Doctor says I'll need it for at least another week. The good news is though I can start back to preschool on Monday with my friends. They already know about oxygen since my friend Luis had some just like me.

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Bob and Me....Together Our First Day!

Bob and I had a great night. We decided to be sure to get a good nights rest so we could play together today. I stayed home from preschool and Mom stayed home from work. Bad news...I had to start the day with a dentist appointment...good news..no cavities...bad news..had to leave Bob for a short bit so that made me so sad I had to cry almost all the way to the dentist! I'm helping Bob get used to his new kennel by hanging out in it with him. Mom said I didn't have to go quite so far in making him feel comfortable but I figure he deserves it! Even sat in there with him while he took a nap...was careful not to disturb him cause Mom said it was Bob's "quiet time." Oh...and just in case you are wondering...Mom didn't put me in there and close the door...I did that all by myself!
We gave Bob his first bath at our house...can't say as he really loved it but I had fun with it! Then we all went to the vet. Mom said I was really the proud, attentive and suppportive "Mom" to Bob during the visit. He did awesome but I just wanted to be sure he stayed close to me and that everyone knew he was with me!
After that we played in the backyard. It was great having someone to swing with. Bob looked like he was watching a tennis game going back and forth! All in all, Bob is the best thing ever. I will be honest with you though...I do get a little jealous if Mom gives him to much attention and I am having a bit of a hard time letting Bob play with his toys cause I want whatever he has! And sometimes he wants what I have so I guess we are even!