My WalkAide Journey Continues...

posted Mar 11, 2015, 10:40 AM by Aarons Ohtahara

Oh the places I am going! I gave Mama my list of where I wanted to go now that I am trialing a walk aide for a couple weeks. I think they are pretty reasonable although Mama thought moon walking(on the moon) might be difficult. The rest is pretty easy and tomorrow we start with my favorite lake! The trail is so nice and we walk to a park that I'm also going to try walking on the bridge. Those are first on the list.

While I was getting the walk aide from the Physical Therapist and testing what settings it should be on I had fun helping by pressing the button. My foot moves! Not a lot but just enough for me to see it and feel it. Mama and the Physical Therapist were saying something about bio feedback; I don't know what that means but I do think it is cool to see my foot move. At first I only took a step or two, just enough to reach the wall or table to hang onto. Mama knew I was nervous so she held out her hand for me. Mama knows I can do it but it was nice to hold her hand just in case I trip. It didn't take me too long to start walking around by myself though. I even started walking up stairs and down a ramp before the appointment was over!

Wearing the walk aide is much different than my AFO. It is around my calf and is a bit heavier but I'm getting used to that too. Maybe soon it will take the place of my AFO if it is helping me.

Lake and Trail  - Day 1

Oh boy was I nervous! I was getting so upset because the walk aide was bothering me a little. I'm just not quite used to it. It seemed okay while I was inside and walking on the more solid surface but at the park with the grass, bridge, and the gravel it was not as easy. I do love the park though and it took my mind off of it a little bit. I was able to walk across the bridge with help. Mama and Papa  think the initial setting was too high because I just kept messing with it and getting upset. I tried not to cry but I was frustrated! It was harder than I thought. Mama told me that we all just needed to practice with the walk aide, me using it and Mama and Papa putting it on and making sure the setting is okay for me. I need to let them know ( in my own way) if it is bothering me - I usually do a good job with that!

Lake and Trail  -  Day 2

Day two was much easier! The weather has been awesome here. I have taken advantage of the great weather by being outside every day. We went back to the lake for a bike ride and then did some more walking with the walk aide. I had so much fun!! By the end of my day I was walking around and even did a little jumping and fast walking. The lower setting is much better! Thanks Mama and Papa!!

Walk Aide, Oh the Places I Plan on Going!

posted Feb 15, 2015, 8:19 PM by Aarons Ohtahara

Mama and Papa decided to let me try some new "kicks" last week. I was a little unsure as I like my new shoes but Mama explained we would be going to another Physical Therapist to see how I react to a walk aide. A walk aide is a device that sends an electrical signal to the nerves, in my case in my leg, that stimulates movement. I'm hoping it will help me improve my walking and it can take the place of one of my braces! How cool is that!? Mama and Papa have talked to several people about this, from those that use one to my physiatrist. All think it would be good for me to try, so I say let's do it!

I will admit I was a bit nervous at first, but it doesn't hurt at all - believe me, I got to push the button A LOT and I was even giggling. My foot moves when I push this button without my help! For a little boy that likes cause and effect (that's me) this was awesome!

I even got to walk with it on, this was the nervous part as I'm used to having my braces not a walk aide with me. I walked around but I held hands with the physical therapists just in case, it turns out I did not need their help at all! Mama was so proud of me and how I did. Everyone could see the reaction was really good and with practice and me getting used to it, this might help me with my walking even more! I love walking and moving around so this is a big deal for me. I'm already planning some walks when we trial this at home- oh the places I'll go!

I am going to start an at home trial soon. I will let you all know how I do.


Remember the little things (like walking - which is also a very big thing)
Love, Aaron

Some Days are for Staying Home

posted Jan 7, 2015, 1:55 PM by Aarons Ohtahara

Today is one of those days. Mama says they cancelled school because it is so cold out. That is probably a good thing since I may or may not be the one who takes my gloves off immediately. My hands would be really cold in below zero temps! Don't worry though, I have come up with some things that will keep me (and Conor and Mama) busy all day. So if you are stuck inside on this cold, wintery, blustery day try some of my tricks to have fun. I've been trying them out all day!

Eat a good breakfast. This will help you get ready for your busy day at home, if it is past breakfast and you didn't eat a good breakfast then try lunch. I try not to miss a meal, I love food!

1. Play with trains. Maybe you have a lot of trains in the playroom like we do, so set up the tracks and be the best conductor ever! Mama is planning to read a book my friend made for me called The Train With No Name. It is so good. I never get tired of reading a good book- well in my case, having it read to me. Still good though.

2. Make sure you have a fire going if it gets extra cold, but Mama says to be careful so don't sit too close, the cover can get warm too.

3. Play a game, my personal favorites are Pop the Pig and Candy Land. They are so much fun! We have a version of Candy Land that I can spin for my turn to see what color I get, that is so much easier for me. Mama helps me with my colors but I can spin it all by myself. I am also getting better at rolling the dice for Pop the Pig.

4. Draw pictures or paint. Mama is thinking about getting the paints out today, wow is she brave! I might suggest my paint apron for this activity, just in case.

5. Build a fort. Yes, I will be creating a fort today. Blankets and pillows, chairs and toys will turn into a cave today. I think I will bring my bear with me and hope Mama reads my other favorite book, We Are Going On a Bear Hunt.

6. Call a friend, or two. I love to video call so I'm going to do my best to say hello to a few friends today.

7. Play Ring Around the Rosie. This is so fun! My favorite part is the we all fall down part. I can't help but laugh every time.

8. Play some music. I'm going to play some music on my sensory wall, but I also love my handheld musical instruments.

If this doesn't fill the day up, we may just settle in and watch a movie, preferably one with lots of music. Enjoy your day and stay warm!

Remember the little things (like staying home on a cold day and building a cave out of tables and chairs)
Love, Aaron

Christmas: Sensory Style

posted Dec 27, 2014, 10:47 PM by Aarons Ohtahara   [ updated Dec 31, 2014, 4:25 PM ]

Christmas is FUN! I get to do so much during Christmas break; see my family, be a shepherd, visit Santa, see reindeer (do they really know how to fly!?), and a lot more! Before I talk about my awesome present I received that is really really cool and interactive, I will tell you about being a shepherd.

I made a pretty good shepherd, it turns out that when Jesus was born some shepherds were told by a host of heavenly angels and they went to see Jesus! This seems pretty good to me, so when Mama told me I was going to be a shepherd again this year in the church program, I was so excited! My friends and I at church got to dress up, I even left my head scarf on (well, half the time). We were supposed to watch our sheep and be surprised when the angel appeared to us- well we are only 4, so you might imagine how this actually went.... 

The first performance there were a lot of cameras, so my friends thought it only appropriate to say "cheese" once all the parents started taking pictures, who knew my friends and I were so photogenic? What good is a performance with sheep without any sound effects? My friends may or may not have started making sheep sounds (baa baa baa) after the cameras were put down. Needless to say I was very entertained- I added my own rendition to the performance, don't worry. When the angel appeared and surprised us, like any good shepherd that is supposed to be startled, I squealed, only this was from delight because it was so cool to see the angel jump out and the light focus on him. The angel told us all about the birth of Jesus, so of course we wanted to go see him (que the shepherds getting up and moving around, carrying our sheep around - need I remind you we are 4). Being a shepherd is so cool! Mama had to remind me during practice that shepherds are supposed to watch over our sheep not knock over our sheep, so I was very careful with my sheep to make sure he was good.

Now onto my big present. The big reveal was Christmas Day! It is a sensory wall, complete with interactive koi pond. I can touch the picture on the wall and make the water ripple, the fish move and swim away, and I can feed the fish! This is so good for me! I jumped up and down I was so excited! I love cause and effect, so pushing a button to get my toy to move or other reaction is really exciting for me, this wall means I can interact with it- visually stimulating too! I am so excited to use the other applications and when I do, I will tell you all about my reactions. They tend to involve jumping up and down and yelling depending on how excited I am! I am sharing a photo of me with my present.

Remember the little things (like a sensory wall on Christmas Day or time with family)
love, Aaron

UPDATE: Mama added a video in the files of me playing my drums- I love my wall, even my communication therapists wants to come and see it! Mama has invited her over so I get to show my new toy, I'm so excited! Here is another photo too! The good thing about this new interactive program is my brother and I can play together- we rock!


#WorldOSday, World Ohtahara Syndrome Awareness Day

posted Dec 25, 2014, 10:40 PM by Aarons Ohtahara

November 15th was World Ohtahara Syndrome Awareness Day! This is a BIG deal- it was the first one ever and I got to help!!

I am so excited to share a great day with my friends- all so deserving of more awareness and love! Ohtahara Syndrome has so many causes and so many of them are unknown, but none the less, my friends and I have a day where our families can reach out and share more awareness about OS to many others. This year was such a success in my book- Mama says the two event pages that were created for our big day reached well over 2,000 people! Now I can not count that high (I'm only 4) but I still think that is a lot of people, it sounds like it! That was just the event pages...

so many of my friends and their families took photos of themselves wearing purple and shared the save the date card that Mama personalized with their names. I even had my own that said Aaron. There were a lot of messages of hope that Mama read to me. I think November 15th is a good day, thank you to all that supported World Ohtahara Syndrome Awareness Day and for spreading awareness- it is a BIG deal!!

I also received a big envelope in the mail- it was half my size! I got to open it and guess what?! Our Governor of Nebraska signed a proclamation that Nebraska would recognize November 15th as World Ohtahara Syndrome Awareness Day, I am so happy to know my state will recognize this day. I think next year we need to get more states, that would be so cool to fill the U.S. map (hey, why not the world, after all it is World OS Awareness Day!!) with purple for each state, country, etc. that recognizes November 15th.



Remember the little things,
love Aaron

On the move...

posted Oct 21, 2014, 10:53 PM by Aarons Ohtahara   [ updated Oct 21, 2014, 10:55 PM ]

I may only be a little guy, but guess what?! I can drive! Yes, Mama and Papa surprised my brother and I with a car and we got to drive it all around! Does this mean they don't have to buy a car when we are teenagers? Hmmmm...

Mama will tell you that I love moving, from stroller rides and trains, to now electric cars. My brother had to help me steer the first time behind the wheel, but Mama has video proof I did it myself the second day of my driving lessons. I will also note that we have only broken a small play bench since we started driving.  Mama says this is much better than the fence! I have a photo of me driving and Conor helping me.  I can push the pedal down all by myself- which is awesome because it is my right leg/foot I use so this helps me be more aware of my right side; do you think Mama realized that when her and Papa bought it? She's good, very good!

Speaking of my right side, I have even impressed myself lately by using my right arm and hand. I like to give "high-fives" with my right hand now and last week I reached up and pushed the door button to open the door with my right hand- the door opened too! I was so excited, the next best thing is the elevator buttons; however, the bell is the button that I can reach the easiest so Mama says maybe not the elevator buttons just yet.  This may or may not be because I pushed the alarm button and Mama had to go back and forth with the voice on the speaker explaining we were okay it was an accident; but like I said, it may or may not have happened that way.

My brother and I were invited to our first class mate birthday party over the weekend.  This is a big deal for me, I love birthday parties. I know they have to invite everyone, but I'm sure glad I was included! I had so much fun, I even hit the pinata all by myself! Mama and Papa were so proud of my brother and myself for how good we were. I only got upset once when I could not slide down the slide but instead had to take a group photo.   I guess that was alright, but I did really want to slide! Luckily, I was able to go back to the slide after the picture- in which I'm crying in, because it was not my plan to stop going down the slide, at all.

Mama wants me to share this story for her.  One of my friends at school talked to her today. He told her that I am his friend (as you may guess, Mama says she could have cried right then) and that he helps me when I fall or need help up. Mama is so happy to know that the other kids play with me at school. She worries (don't tell her I said that).

We have a big day/month coming up in November! I can hardly wait! My friends and I will have a day recognized just for us. World Ohtahara Syndrome Awareness Day is November 15th! #WorldOSday We are recognizing this day and so happy to have it coming up soon.  November is also Epilepsy Awareness Month!

Remember the little things
Love, Aaron


Apple Orchard

posted Sep 14, 2014, 8:18 PM by Aarons Ohtahara

What a fun day!  I spent all day with my family at the apple orchard. Mama says we have been coming here since Conor and I were born, our first fall we were at the orchard picking apples and Mama started her tradition of taking pictures in the orchard.  I wonder how long she will try to do this?

We start our day with a lunch at a nice place full of all sorts of good stuff!  I picked out olives, salmon, a piece of bread, chicken, eggs, and sausage- but I threw that on the floor.  I tried to tell Mama about the five second rule, but she would have none of it.  It could be because I throw a lot of food on the floor, I forget that I have to put it on the table or my plate.  During lunch Mama helped me with my sign language.  I have "more" down pretty good and sometimes I even interchange it for "yes".  We have been working on eat for quite awhile, well guess what??!!  Mama thinks today is the first day I consistently gave her the sign for eat when I wanted food rather than just showing her the "more" sign! Mama is so proud of me, I am pretty proud of myself. This sign language is getting easier for me, what word should I work on next?! 

After lunch it was off to the apple orchard for us; we picked a lot of apples this year.  A LOT!  I was so tired of picking apples when we were finished that I had to sit in the stroller, but I do love the ride, especially when Papa runs down the hill!  We also took a wagon ride all around the orchard so we got to see a lot of cool stuff this year.  Mama found the oldest apples on the orchard (heirloom apples).  They were from 1598!! I don't know when that was, but Mama tells me it was from a long time ago, I don't think Papa was even born yet! I can say that I got to try the oldest apple on the orchard, they were the farthest away but Mama was determined to find the oldest strain.  That was so fun! 
We also got to play in a nature classroom, this is such a great place!  Mama really wants one in our backyard, especially the hammocks!  There is a water feature that you can float branches down the waterfall, then lots of music to play, sticks to play with, tree stumps to climb, blocks, and a lot more. Conor and I played music for the whole orchard it was so loud! I loved it!! 

On the way home, I took a nap! I walked a lot today which is good for me and I got a lot of fresh air, also good!  I forgot to mention my climb to the top of a 50ft tree house! Now that was cool!  You could see over the tops of the trees! Today was so fun, I am always happy to be with my family and being outside is one of my favorite things.  Mama has tried hard to share a lot with Conor and myself, thanks Mama and Papa! 

Remember the little things,
love Aaron


More Adventures...

posted Sep 1, 2014, 10:29 PM by Aarons Ohtahara

Happy Labor Day to everyone!  I had my first day off from school and it was so much fun!  I am so happy to spend time with my family anytime, but especially if it is extra time when my brother and I are out of school and Mama and Papa don't have to work.  I even saw two of my school buddies on our little adventures over the weekend.  :) 

Saturday we started the day off right with a Teenage Mutant Ninja Turtle Birthday party for my cousin.  He is older than me but still cool.  He has overcome some battles like me; not Ohtahara Syndrome, but Cancer.  Mama tells me about visiting my cousin in the hospital when he was little and helping him draw pictures on the windows with window paint.  I of course wonder why this was not done when I was in the hospital!  Next time I'm bringing markers, then I can write messages and draw pictures for all the people driving to see.  Maybe it will brighten their day. The party was a lot of fun, we played outside, ate pizza (TMNT love pizza from what Mama tells me) - that must make me a ninja- I love pizza too. My cousin got a really cool shirt for his birthday that says "Cancer messed with the wrong kid"  I like this shirt, maybe I can have one that says Epilepsy or Ohtahara Syndrome.  I know a lot of my friends would love the shirt too. Maybe I need to talk to Mama about this.

Sunday was so fun, I experienced two brand new adventures in one day!  We went to the zoo, of course I have been there before, but I got to touch a sting ray and then I rode a camel, yes a camel! I even saw two baby camels and I tried to say hi to them but they just wandered around.  I kept a big smile on my face the whole ride, which was a rather short ride, but still good!  I kind of wanted to ride around the zoo but I guess that is not allowed.  After the camel, sting rays, and the train, we went on a bear hunt. We caught three!  We have the book "Going on a Bear Hunt" and believe me I love this book.  Mama does the signs for me and makes all the funny noises; she is very animated for me and my brother.  We stomped around the bear area at the zoo and caught a polar bear first. Who knew we could make books come to life!?  I had so much fun, I love our family adventures, Mama and Papa come up with some good ones.

Monday was our extra day together.  We started off at the safari park and spent some time walking and looking for animals.  I got to pet a goat, pretend to drive a tractor, wear antlers, see a bald eagle, do my own version of rock climbing with goats, and I walked up a big hill all by myself!  I was so glad to see the wolves after all that work walking up the hill, that was tough! 

I hope everyone has a great week, for me it is back to school, therapy, and I start speech again!  Mama has been trying so hard for me to use my words; don't worry Mama, I will talk one day!  So far I have tried to say "up" - not exactly but I'm trying.  It may seem like an easy word, but it is hard! 



Remember the little things
Love, Aaron 

Camping, Bike Riding, and PreSchool... Oh my!

posted Aug 23, 2014, 9:56 PM by Aarons Ohtahara

Mama says I should update you all on how I am doing, so here it goes!  So good!! 
Preschool

I started preschool (second year) a couple weeks ago and of course I love it.  I have a much bigger class this year, Mama is not sure if that will work well for me, but I look at it like more friends to play with during the day!  My favorite part of the day is music, snack, and playing outside.  It has been so hot out though, something called humidity I'm told is making me very hot and sweaty when we play outside.  Mama makes sure we have plenty of water though. She calls it hydrating and now even Conor will say he needs to be hydrated.. that is so silly! I love my brother, he is always coming up with witty ways  to say something.  He likes to explain things to other people simply as "some people do, some people don't" Makes sense to me! 

I did get in a bit of trouble at preschool already... I would like to proclaim my innocence here first.... now for the story; Sitting in music class I participated so well and loved the music - even tried to sing along a bit and dance.  Well.... I guess once the music stops you are not supposed to continue on ( I may or may not have yelled a bit or more).  Don't worry about me though, I'm loving school and music class- my voice will be heard whether it be in a restaurant, during music class, when Mama, Papa, Conor, and my dog are trying to sleep at 3am, or who knows where else... my voice will be heard!  I have so much to announce to the world, sometimes I just can't help myself and get so happy and excited that I scream it on the rooftop (or my bed or music class). 

Camping

I love camping, it is so much fun.. Mama thinks I'm a mountain man at heart, now if I can figure out how to build that cabin - or pitch a tent, I would be set ( hey I'm only four!)  I think it is the great outdoors that I love so much.  Fresh air seems to work well with me; I love walking around and having fun with my friends.  We did a minimal amount of walking/hiking this camping trip- Papa said humidity (there is that word again) was 98%, so I think that is a lot since I can't count yet.  We did get to see one overlook site which was beautiful and although it was only one night, I had a great time.  We explored a small town nearby and found out that they have a farmhouse organization that is geared toward helping special needs kids.. like me!  We were greeted by a very nice young man who handed Mama information about the farmhouse and it was so cool.  Mama says she is always happy to know there are organizations out there helping others ( I wonder why... just kidding!)  We are going to visit this place again in the fall when they have their festival because it is such a good cause.  I am personally excited to share that I participated in my first corn on the cob eating contest while we were visiting!  It was so much fun, Mama was so thrilled and in true fashion took lots of photos!  I didn't win; I was up against 10 year olds!!  I did my best and I loved the cowbell that we got to ring while we were eating.  So, cross that off the list- participate in corn on the cob contest - check!  I should practice for next year, just in case!

Bike Riding

Papa rode his bike for a week.  He rode 500 miles!!  He had such a good time, I'm so proud of him.  Mama packed us up in the car and drove to meet him at one of the stopping points for the ride across Iowa.  We got to camp!  The next day Papa and our friend got started very early and finished the ride; they even got to dip their tires in the river!  Mama had to fill us in on what happened when Papa arrived at the finish, we had been waiting for a very long time and I was kind of tired- so I fell asleep and then Papa showed up!  Mama got video so I could see him riding up to the river. 

I've been practicing on my tricycle and getting pretty good.  I can pedal now by myself!  It is a little hard for me, but I can do it! I'm looking forward to riding more when it is not so hot.  In the meantime, I love the bike trailer that Papa carries us in while he rides.  Train tracks and bridges are my favorite to go over, something about those bumps make me laugh so hard!  Our family rode 10 miles in a bike ride this month, there were a lot of people but we managed to stay together the whole ride.  I had a great time.

We recently had my post op appointments.  I am doing good- my doctors tell me they are so happy with how well I am doing.  While we were there we got to visit my friend Aaron. He just had surgery like mine so I was very happy to see him.  He is so cool!  He likes to fish too, we went fishing before his surgery and that was fun.  Mama told me he is doing very well and the best news is he is seizure free!  I am so happy for my friend and guess what?! He is a twin too!  I may get a new device that will help me walk; but we have to trial it first.  It is supposed to help with my foot.  I know Mama will have a picture if I get it.

Thank you for reading!  Please keep my friend Honey's family in your prayers. 
Remember the little things!
Love, Aaron

Our Boston Trip...

posted Jun 29, 2014, 9:03 PM by Aarons Ohtahara   [ updated Jun 29, 2014, 9:09 PM ]

The Ohtahara Syndrome Conference and Family Gathering (Mama that is a lot to say for a little guy) was a blast!  I had so much fun meeting my friends and their families.  Boston is a busy city and Mama tells me quite old too!  The history in that city was so cool, I even got to drive a boat.  Yep, I was captain of a DUCK for about two minutes, but I drove it like a true captain, trying to turn and of course honk the horn; who would not want to honk the horn??

The plane ride there was long.  It was a little hard for me and Conor to sit still and even sleep.  We were so excited, off on another adventure- who could sleep!  My sincere apologies to the gentleman sitting in front of me as he endured my joy of finding out the tray flips up and down- a lot.  He was very brave to sit in front of me, thank you for not yelling at me or giving me ugly looks- I tried my best.  Did you know you get snacks on planes?  Well I didn't and I loved them.  Such a nice surprise for me and even graham crackers!  I think the gentleman in front of me appreciated the snacks too, I was pretty quiet and busy eating; he looked grateful.  Such a nice man for giving me time to eat before I played again. :)  Mama actually brought ear plugs for those around us in the plane if they were needed ( I have no idea why this might be necessary).  Mama was so thankful she did not have to hand them out. 

Right off the plane we started our trip, no rest for us- Mama and Papa had a full day for us already planned.  Guess what?!  I got to see a zebra fish!  Now I pictured a much larger fish and thought how can they get a zebra fish in the hospital and how does it swim in a little pool?  I've seen zebras at our zoo- they are big so naturally I was curious.  It turns out zebra fish are small, probably the size of my finger.  I kept looking around the lab to make sure we were in the right one, just in case I was missing the zebras.  These zebra fish are pretty cool too and they are doing some amazing work too.  They are helping me and my friends and lots of other people too.  I'm so thankful for each one of them and every one that I saw I was sure to give them extra attention and say thank you.  The photo is of me taking a look at the zebra fish and making sure each one got a proper hello and thank you.  Mama, Papa, and Conor were really interested in the lab too, they asked a lot of questions and I think Mama was really excited to see what kind of possibilities these zebrafish could lead to with helping me and my friends.  Mama was so happy to meet the Boston team again, she was always talking to them on the phone or emailing them so I know she was so happy to see them in person and thank them for all their work in putting this conference together! Such a blessing to have them. 

I would like to take a moment and mention my friend Isabella here.  I am very sad to say that I never got to meet her as God had a plan to meet her first.  I'm so happy that she is with God now and playing with other children, doing all good things that children should be doing and seizure free, but it still made me sad.  Mama and I had an art project we wanted to help her with and I was to show her all the paint and help her pick her colors.  She is painting beautiful pictures now I know, but I miss her just the same.  We love you sweet Isabella.

Friday was the day of the conference!  Mama got us up all early, but luckily we had a good sleep and breakfast, breakfast is good.  Mama set up the conference tables with some chocolate candy, pens, and gave each family a welcome bag and program.  Noor is another friend of mine and I got to meet her first!  She is so cool, I have to say that she also reminds me of my good friend Haley.  Haley is kind of my sister- well I say she is anyway and Mama says that is okay.  Noor is the child ambassador for this year's conference!  She lives near Boston and she and her Mama helped plan the family day events for Saturday. Mama is so grateful to them for their help.  Since Noor is the child ambassador, she got to help with the welcome bags and she greeted a few of the families that arrived first.  I think she was an excellent welcome committee. thank you Noor!  The conference went so well.  I was so happy to be there.  I got to meet all my friends and also their siblings.  Conor was so happy to have other children there too, he loves to play and run around.  He had a best friend while he was there and although I wont name names, she was a girl!!  :)  I think I will be teasing him about that some more tomorrow.  She was so fun though and made me laugh too. Mama and Papa said there was lots of information throughout the day about Ohtahara Syndrome, care, research, and other rare epilepsy but I just remember watching my friends play and giggling along with them all.  There were nine of us total, so you can imagine we were a rowdy group, but so worth it! It is not often that I get to see nine of my friends at the same time! 

Saturday was the family day and it was FUN!  This is when I got to drive the DUCK.  Don't worry it is an old WWII land and water vehicle, not a real duck silly!  For about two minutes I was captain of my ship, trying to turn it around and honk the horn at all the other boats.  I had fun, my first drive went well; I think they may call me back for a second interview.  We also went to Castle Island.  This was so cool, I got to walk around, paint, and of course eat!  This is right on the water, so we had great views too.  Some people were playing on the beach but I just liked to walk along the boardwalk.  A lot of my friends had to leave after the day was over, that made me sad, but before that all the parents lined us up and we got pictures to remember our day together. 

                                            I was trying to get Jake's attention and tell him a funny joke

That wrapped up our conference, we were able to go out to dinner with my friend Savannah after we got some rest at the hotel and then we went swimming!  My family is grateful for the families that attended. We loved seeing them all so much and getting to know them even more.  Now Mama can show me pictures of my friends and I have met them in person.  The next day we met up with another friend!  I got to meet my friend that had surgery like me and even Ohtahara Syndrome too.  Her and I swapped some stories back and forth and then we convinced our parents to let us go to the park.  That was pretty fun.  I think she will be ready for the slide any day now.  I told her it took me a long time to walk, but I did it and she can too.  I know she can and will.

We had such a great trip, met so many friends, and the plane ride back, guess what!?  I took a nap! 

Remember the little things,
Love, Aaron



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