Special Delivery

Don't adjust your screen...this is for reals! We are thrilled beyond words! Riley is going to be the best brother ever.  He thinks it's going to be a sister (I secretly think he's right). It's going to be quite the life adjustment but one that is well worth it.  Here's to Baby to Be 2014!

Kindergarten

5 years ago if you were to tell me that Riley would be stepping on the bus for his first day of Kindergarten I would have said you were crazy!  To our delight that day actually came and I was able to see my handsome man off to Kindergarten.  He picked out a new backpack and he was so proud of it! Got a handsome new haircut and stylin new clothes.  He was ready to hit the scene! All through out preschool he had a nurse accompany him but this year we decided since there are nurses in the school that we will trial with out one.  I will admit I'm a little nervous about this but I think it will be ok.  So, the first day I went with Riley to go over transfers and to do wheelchair teaching.  There are 7 kids in his class each with their own unique challenge.  There are 2 other kids in wheelchairs and a couple just learned how to walk.  From what I observed all the kids are non verbal.  Riley did great for about the first hour and a half and then it was complete melt down and not just Riley, half the class was either crying or trying to escape.  Big pat on the back for the teacher and all the aids they handle it with such ease and are calm and compassionate.  Today I think Riley did much better.  It will take some time but he'll learn the routine and will love it! I'm so excited for this new school and all the equipment and opportunities he will have there that was such a fight to get at the mainstream schools.  I'm excited to watch Riley learn and grow. 

So tall and proud!

waiting for the bus.  He loves riding the bus

Alright Mom, enough with the pictures!

Disney Vacay: SMA Conference

The main reason for our Disney trip was to attend the annual Families of SMA conference that was being held at the Disneyland Hotel.  We had never been to a conference and we thought since this year it was close enough to drive that we would sign up.  It was fun to see families that we only correspond with through social media networks.  The first night was the family meet and greet.  We hauled Riley's power chair all the way out there so he could cruise around with all the other kids.  It was so funny to see these little kids cruising and weaving in and out of everything.  It was good for Riley to see other kids just like him.

Riding in ready to meet all his new friends

At the meet and greet they had lots of fun games for all the kids to play and this incredible buffet of food.  Disney sure knows how to do it best! Every year they have a relay race where the SMA kids race the doctors and researchers. Riley got to race Dr. Swoboda and Riley smoked her!

Getting ready to race!

At the conference we were able to meet some fun new friends and people that we only correspond with via internet.  Here are some of the friends we met

Maggie and Riley

Riley and Gwendolyn

Veronica and Riley

Riley's best friend of all came to the conference as well. None other than MICKEY MOUSE!  The poor kid was so tired because we had done Diseny all day long before we went to the meet and greet so he was not giving us very good smiles.

The second night of the conference we were all escorted into the park to watch the fireworks.  I wish they would have been able to sit us a little closer because there were so many people standing in front of all of us that I don't think the kids could see very well.

The highlight of the whole conference though was when we went to the Tobii Eye Gaze vendor booth.  For the past few months Riley has been doing practice eye gaze with picture boards to train up for the vendor to come over and fit him for his very own.  The child has to demonstrate a certain level of understanding and ability with the system in order for insurance to pay for it that's why we've been practicing.  We went over to the booth and they put the computer in front of Riley and he instantly took to it.  The reps were very impressed and they have no doubt that he will do very well with it.  Now he was most interested in playing the games on there but hey he's 5.  The plan is to get the rep out to our house in August.  It will take a lot of practice but once he gets the hang of it, it will open up a whole new world for him. 

Disney Vacay: Beach Day

You can't go to the California coast and not go to the beach.  It was suppose to be a very sunny hot day but it ended up being kind of cloudy and chilly.  Riley has never seen or touched the ocean.  The water was quite chilly but he loved wiggling his toes in the sand.

And you can't go to the beach with out getting buried in the sand. All the kids just had to bury Marc.

After crashing in the waves we went and had a bonfire cook out with some delicious s'mores. What a great day for the beach.

Disney Vacay

We just got back after spending a week at the Magic Kingdom.  It was such a fun trip and we were sad to come home.  All though it is always nice to be back sleeping in our own beds.  The main reason that brought us to Disney was the annual Families of SMA conference that was being held at the Disneyland Hotel.  The conference was Thursday to Sunday so we thought we would go a few days earlier to enjoy some other sites of California.  My cousin Aimee graciously opened her home for us to stay which was very fun.  Riley enjoyed being with all her kids.  Our first day was spent packing the car and driving.  My grandma lives in St. George so we stopped their for the night and packed up and did the rest of the drive the next day. 

Riley was so excited about this trip.  He had been up all day since 6:00 and once we got to grandma's he passed out in the bed only to wake up for a moment to get his bipap on.  We were able to get some good ones the next morning after we were all rested.

Riley did very well on the drive.  He really likes sitting up and looking outside.  Oh and the DVD player a huge life saver! And here we go...

First Summer Splash

Today was the first Grandma swim day of the summer.  This winter has been so long and so dreadfully cold this day couldn't have come soon enough.  Riley was all smiles as soon as he hit the water.  My mom bought this baby floater but Lexi couldn't sit up quite right in it so we lounged Riley in it.  Why didn't we think of this sooner?  This is the only way to lounge at the pool

We also like to swim the old fashion way too

baby Clayton came too. Didn't want mom to miss out on the first swim so we worked on our tan instead

This is what you get when 6 kids under 7 hit the pool together.

We all spent way more time in the pool than we thought we did so we're now bright red from head to toe. But it's all worth it in the end. Great way to start the Summer.

May Mash Up

I need to back up a bit and mash together all the craziness of May.  I can't believe how fast it flew by.  We celebrated an anniversary, blew out some birthday candles, planted a garden, read lots of books and have already eaten our weight in smores (brought to you by our killer backyard fire pit).

And to top it all off we purchased this bad boy.  My brother, Aaron, has dubbed it the polygamist patrol!

It was very bitter sweet to turn in our Toyota because of all the incredible sacrifice and work that went into helping purchase it.  It has been a great vehicle but it was time to hand it over for something bigger that can fit all of Riley's chairs and equipment.  We are having tie downs placed in tomorrow just in time for our long drive to California.  I do miss the Toyota but this thing is actually pretty awesome and can fit a whole lot of stuff! Anyone need a ride? We can fit 12.

Preschool has Ended

Today was Riley's last day of pre-school.  I'm not going to deny that I'm a little choked up about it.  Such a big mile stone for him to be able to finish and move to the big school for Kindergarten this fall.  I am so proud of all the accomplishments he has made over the last few years.  School has been so good for him and he loves it.  He loves riding the bus and playing with his friends.  You can just see the joy and self confidence it has brought him.  Looking back at these pictures from his very FIRST day to his very LAST he has grown up so much.  Love you buddy!

Easter

Easter was full of colored eggs and lots and lots of candy.  Saturday afternoon Riley and I colored eggs before we headed down to a BBQ egg hunt at Grandma and Grandpa Ogden's house

I found the most eggs bwhahaha



Sunday morning the Easter bunny made a visit and left lots of fun treats and a handsome new outfit. This was the first Sunday that we have been to church together as a family since December.  Riley enjoyed getting back to Primary with all his friends.

seriously these two couldn't be more alike

After church we headed over to Grandma Jenny and Papa's house for a yummy dinner and more egg hunts.  Each year we take a big group picture.  It's fun to see all the kiddos grow up. It seems every year there is at least one new addition. This year Alexa and Clayton (maybe next year Clayton can join us)

This is Riley and baby Alexa.  He LOVES this baby girl. It's adorable to see him look so concerned when she cries and he tries to comfort her by patting her arm or hand.

Happy Easter...I can't believe how big  Riley is getting. He's almost as tall as me!

Surgery #5!



gearing up in pre-op

 Riley has been wearing glasses since he was two to try to correct his out turning left eye.  More scientific terms his Exotropia.  We've been seeing the eye Dr. every six months since then and then last May he cleared him for a year checkup but we didn't make it that long.  Back in December I started to notice that his eye was turning outward again and then it gradually became worse and worse to the point that it was turn out most of the time even with his glasses on.  We got into the Dr. in February and he told us it was time to surgically correct the eye before he started to lose vision.  He assured us it was a very simple procedure but the downside is that it's only 70% effective and if you have any underlying neurologic defect i.e. a neuromuscular disease then it drops the percentage to 50-60% and if it doesn't work then there are other procedures we can consider.  Well we decided to book the surgery.  As luck would have it Riley decides to get sick (reference previous post) a couple weeks before the surgery.  Thankfully he made a speedy recovery because I had already scheduled the time off work and his eye was so bad that I didn't want him to have to wait any longer.  The surgery went well but instead of one eye he had to correct both eyes.  He explained that if the good eye has compensated for the bad one for so long then the good eye muscles start to get too tight and cause problems so he had to fix the muscles in both eyes.  After he came and spoke with us when he was finished we sat and waited forever to go back to recovery.  Finally after another half hour Marc went back.  The Anesthesiologist said that he wouldn't wake up so he had to keep the breathing tube in longer until he woke up and then he woke up screaming so they gave him some Fentanyl to calm him down.  Well it worked a little too well and we waited another 2 hours in the PACU for him to wake up enough to take him home. 

Serioulsy the saddest picture.  I thought for sure he would end up with black eyes. What a trooper!

We are now three weeks out and will see the Dr. next week for a post op. We're crossing our fingers that the surgery will be effective and he won't need any more interventions other than glasses.