The Number 5!

Riley just turned the big number 5! This year he got to go to school on his birthday which was pretty fun.  It was the last day of school so they had a pajama party. Riley will not be going back to school until the spring so at least he got to finish the year off with a bang! He shared a birthday treat, sang songs and got to wear this awesome birthday crown.

 Riley LOVES school and of course everyone LOVES Riley! Here's a few of his friends.
That night we had everyone over for cake and ice cream.  This was one of the first years that there wasn't a huge snow storm so everyone could actually come.

If you know anything about my family then you would know that this picture is truly a classic. Notice Nick right in the middle with the scowl on his face.  He truly is a product of my Brother Aaron who thought everything family related was stupid and didn't want to participate.  It comes back to you 10 fold Aaron...hahaha!

Turning five is pretty great! Thanks for coming and celebrating this HUGE mile stone for Riley

It's Birthday Time for You

Dear Riley,
Today you turned 5 years old! Time goes by way too fast. I look at you and still see my tiny little man that loved to be wrapped up tight with his binky in his mouth. You are a remarkable little guy and I admire so much in you.  You are smart and funny and super ornery when you are tired. You have the best facial expressions so even though you can't express your thoughts in words I can look at your face and know exactly what's going on.  I love you so much and I look forward to many more birthdays to come.

Men and Work

I've said it before but I'm going to say it again we live in the greatest ward ever! The day we moved in the Elder's Quorum President came over and was talking to Marc and he asked if there was anything that we needed. He looked over and saw Riley's wheelchair parked int he carport. He asked us how we get it in the house and we told him that we had a portable ramp that we can get out if we need to. He said to us "well, that won't do let me see what we can do about it" The next Sunday he came up to Marc and church and said that the Elder's Quorum was going to build Riley a ramp! There are a bunch of contractors in the ward and they are happy to pull the supplies together and get it done. We were speechless at the idea that they wanted to do this for him. They wanted to start it before the weather got bad so they started construction about a week before Halloween.  They did it mostly at night when everyone got off work.

After a few nights and a couple of Saturdays Riley was all set to wheel right up to the front door

Isn't it the most beautiful thing you've ever seen! They did a fantastic job! I am blown away by this act of service. Marc walked out and stood on it and cried. To the members of the Quail Ridge Ward, words can not express our gratitude for this wonderful gift. We are truly blessed to be amongst such great people. I know that our prayers were answered and that the Lord guided us to the home we were suppose to be in. Thank you a million times over!

Turkey Day

I honestly can't believe that it's closing in on the end of the year and it's the time of year to bake, cook and bake some more.  We had the great pleasure of hosting Thanksgiving dinner at our new house this year with the Ogden Family.  Even though life is tough and crazy I have so much to be thankful for, especially this last year.  I am thankful for amazingly smart and talented doctors, nurses, therapists that take such good care of Riley.  He's kind of had a rough year this year with his first intubated illness, two broken legs and top it off with surgery. I'm thankful for his strength and courage to endure so many of these challenges. I am thankful for our new house.  It's so nice to be able to move Riley around with out trudging up and down stairs.  Our new ward has gone above and beyond and have exercised enormous amounts of service for our family. I am thankful for my education and the ability to work and support my family. I am thankful for good friends, the kind that no matter how long it's been since we've seen each other we can just pick up and go on like it was only yesterday. I'm thankful for my family and all the love and support they give us. 
We had a wonderful dinner and delicious desserts. I'm sure the the highlight of everyone's evening was the fact that they could park in our driveway instead of 5 blocks away! Thank you to all that came.

Two peas in a pod!

Adam and Grandpa Spencer (he just turned 89!)

Mark and Aimee

Michele, Robert, Kyle, Marc and Riley

Kyle and Kelton...these two are nothing but trouble!

Riley was super excited to sit at the kid table

Kyle and Riley cruising around the yard

I had to add this picture because I told Marc that I could throw the football better than he could...I was right!

Happy Thanksgiving from our house to yours!

It's Game Time

A few weeks ago Marc scored some free Jazz tickets from the Fanz store across from the chocolate store where he works. He was given 6 tickets so my Mom and Greg tagged a long.  This was Riley's first game and thanks to him we were able to sit closer than what are seats really were.  It was a lot of fun and the best part of the whole thing was just to watch Riley's face. He loved it.

GO JAZZ!

Happy Halloween

Ok so this is just about a month over do but I get sidetracked and then never post.  We played Halloween a little more chill this year because Riley had a tendon release surgery done about a week before so he was really sore and not in the mood for a lot of stuff.  Every year my mom does a Halloween dinner so all the kids can come in their costumes and eat lots of treats and watch a Halloween movie. I didn't want to spend another $30 on a costume this year so I gathered up all my creative sewing ability (which is pretty much none) and came up with this Peter Pan costume. I think it turned out pretty cute, expect that my brothers thought he was Robin Hood! Oh well...

Lauren as Ariel and Riley as Peter Pan

Cupcake Decorating

Riley got to dress up at school and walk, well ride, in the costume parade. I think it looks like he enjoyed it.

That night we went Trick or Treating. It was such nice weather so he didn't have to hide his costume under a big coat which is the usual get up for Utah Halloween.  Riley LOVES trick or treating.  He has to hold his bucket by himself! One of his favorite candies are sour patch kids but he didn't get any so he had to settle for licking a War Head. SOUR!

clinic

Today was SMA clinic day.  It seems to creep up on me and I don't realize that it's been 6 months and he needs to have a checkup.  It was kind of a whirlwind of information and my mind was scattered and so I didn't pay much attention to the emg testing that Riley was getting but his readings are again stable which is of course excellent news.  Dr. Swoboda came down to chat with me about some decisions we are facing with Riley.  It was nice to sit and talk with her because we don't see her in clinic any more.  She has such a love and passion for these kids and basks in their success no matter how tiny it may be.  Riley truly is in a class of his own.  Yes, he's considered a type 1 but he also fits some of the categories of type 2.  His emg readings are what they see in type 2 kids at his same age and they have consistently remained stable for quite some time.  Another area he excels at is being able to sit for long periods of time (supported of course). Because sits up a lot he's now facing effects of scoliosis.  If the scoliosis gets bad enough it can hinder lung function and also cause problems with over all mobility.  They are wanting him to have surgery to place expanding rods in his back to help prevent the side effects of the scoliosis.  This really is a big surgery and it's not just a one time deal every six months they go in and expand the rods.  As I was talking with Dr. Swoboda I expressed to her my concerns about his recovery and his ability to bounce back after such a huge procedure.  She was very understanding and gave some profound insight.  She said that in the long run it will be very beneficial for him.  It's hard to decided these things for him and hope that they are the best decisions and what they would want for themselves.  Now when he's 15 he may feel differently...my exact words where uhh 15? Honestly? You really think that he's going to be 15? She was so matter of fact and said Yes, I don't have any reason to doubt that he will live into adulthood.  He's very stable and clinically presents like a type 2 and those kids live well into adulthood.  I can't seem to wrap my head around this.  His whole life I feel like we are counting down days until he was 1, then 2 then 3 now 5 wondering how long his body can endure. Now to hear the word 'adulthood' is just so beyond my mind to comprehend.  This is the reason they are pushing for the spinal intervention to give him the best chance of reaching that age with the least amount of complications along the way.  I hate having to make these kind of decisions.  I envy those of you who's big decision of the day was what to pack your kid for lunch. I'm not sure I'm ready for this.

Another Angel

Today our friend Tabitha will be saying her final goodbyes to her family and her life here on this Earth to be released from the crippling effects of SMA. I had forgotten that tabitha was actually the first kid we met with SMA. Riley had just been diagnosed and we were at his first clinical appointment doing his first PT eval. Tabitha happened to be in clinic that day too. Abby, the sma nurse,brought Monica, Tabitha's mom, up to meet us. Monica walked in holding Tabitha who was just a few months older than Riley. Monica, you were so bright and cheery, full if optimism an it gave me great comfort. Tabitha endured so much and possessed great courage and love. I wish that we could have gotten to know her and her family better especially since we only lived about 30 minutes away from each other. I have grown close to her through Monica's journaling of her every day battle with the disease. We will be weeping her passing in this life but she will be joyfully welcomed home by her sister Taleah who also passed away from SMA. Today is a day I hate this disease the most. To see it take lives so young, so tragically is too much for my mind to understand why. But we are unable to see the big picture and through the eternities. We can only rely on our faith and obedience to the gospel that we will too be reunited with the ones we love. Good bye for now Tabitha may your eternal life be filled with lots of running, playing, smiles and laughter.

Surgery

Riley has been struggling with contractures in his ankles. While its inevitable to happen given his muscular disease there are ways to help prevent it through stretching and ankle orthotic braces. Riley's feet got so bad that we have gone through three sets of braces because by the time we get them in the mail his feet are worse and the braces don't fit. The contractures are really benign and usually don't cause pain or discomfort but he hasn't been able to stand in his stander because he doesn't have the proper braces. He has also become very uncomfortable when you manipulate his feet to dress him, move him etc. the 'cure' for this is to go in and lengthen the tendons by cutting notches in them. I know sounds terrible but for someone who doesn't walk it really is just a minor surgery. He actually had it done when he was just shy of 2 years old so we were comfortable with the process. So we woke up bright and early and headed up to the hospital. To our surprise Riley's BFF Noah happened to be there too for a routine procedure of his own. These two must be true kindred spirits! Anyway, the surgery went very well and he was in and out if the OR in only 30 minutes which they originally planned an hour. So from time of surgery to discharge was only 2 1/2 hours a new record for us! Now he has one blue and one red cast for 4 weeks and then his feet will be good as new he really is a a tough kid and endures a lot and never complains. Then again being super cute and wooing the nurses does help.

Home Sweet Home

I have so much to catch up on but with out further a do I thought I would bring about the news of our new home! On September 22 we officially planted our residential feet in Riverton.  For the past 3 1/2 years we had been renting a town home in Draper.  We loved the area, especially the ward, but it was time for us to move on. The biggest reasons have to do with Riley.  The town home was two stories and all the bedrooms and the bathroom was upstairs.  It was becoming too difficult to carry Riley up and down the stairs.  Our options were limited on housing because 1: we needed a rambler with everything on the main level. 2: we wanted to stay in either Canyons or Jordan District and absolutely not Granite District. 3: No short sale because they are not worth the hassle.  So when we plug in our options there were like 10 homes to choose from in our price range.  Our first choice was to stay in the Sandy area so Riley could stay in the same school district.  With Riley's nursing care and special needs programs we are picky on which districts we want him in.  We checked out a few houses but they either needed a lot of work inside, outside or both.  So we decided to try our luck on the other side of the valley putting us in a new school district but still a top on our list.  We went and checked out a few and didn't get good vibes. And then our realetor sent us info on this beauty and about a month later we signed our lives away!

It has a big yard with lots of trees. The best part is the fire pit in the back yard. The previous owners built up this pretty impressive garden which we are reaping the benefits. There is also an apple tree, a plum tree and grapes...mmm. When we signed and got the keys my mom insisted that we paint before everything got moved in. I'm really glad we decided to do it.  I went bold and went with yellow.  I didn't want any browns/tans or greys. I wanted something bright so yellow it was. We ended up with way more paint then we thought so everything upstairs got painted yellow with the exception of our room and Riley's room.  Here's some before and afters...

kitchen

front room

hallway

Riley kicking back and watching some shows...he was a big help hehe

Riley's room before

AND AFTER

Riley's room. I love the shelves that they installed.

Kithchen

Goof ball! He really likes his new room

It's now been a couple weeks and while we are all moved in we are definitely not put together. It's hard when you have to work and get back to reality.  It will be a while but one room and one box at a time.  We are so excited to finally have our own place and to start a new chapter to our lives.