Hope Kids

We are finally part of an organization called Hope Kids.  Hope kids his for families who have children with life threatening or chronic illness.  We have heard about it for a while but I just never signed up, just lazy I guess.  They put together activities for the kids and their families that you can sign up for. Today was our first event which was a private showing of Toy Story 3. It was nice to be around other families who are going through similar things, who trek around the same equipment and don't have to explain to people what it is when they look at you weird. The fun part about the event was that Lauren is a Hope Kid now too so we were able to attend the event together. Since we have a wheelchair we were there early to ensure a wheelchair spot, so we weren't able to sit next to them but I was able to snap their pictures.  Riley really enjoyed the movie. He was laughing and talking, but mostly I think it's because everyone else was laughing and talking. He loves to be social with other kids and was way excited. I can't wait to sign up for more events.

Brady Turns 5

On Friday we went to Brady's house for his Birthday party. I can't believe that he is 5! Holy cow does time fly.  As always Kristin made an awesome cake. This year it was a dragon. As always, great job! I might have to attempt it for Riley's birthday. Riley had a good time hanging out with all the cousins. Nick had a great time helping Riley sing and play patty cake. My favorite comment of the evening was:

Papa Mark: Lauren, does Riley talk?

Lauren: No he just makes lots of noise.

I wanted to take pictures of Brady opening presents because he was so excited at everything he opened, but I ran out of memory on my card. His mom and dad gave him a big boy bike and his face was priceless. Happy Birthday Brady number 5! Kindergarten here you come!

The Cake: Awesome job Kristin!

 T

 The Birthday boy and the Fam

Playing patty cake with the cousins

 Baby Courtney being a big girl.

 Lauren and Me...she had to show off her scar and tell us all about it! She's so brave!

Frankie, Aaron, Nick, Grandma Dolores and Lauren

 My dad and Riley, he thinks Papa Mark is pretty funny

Two Years!

Today marks the 2 year date of when Riley received his diagnosis. I can't believe it has been two years. I will never forget that day when the Dr. called us and gave us that news. At 2 1/2 Riley has over come the odds and is still continuing to do well. He has been hospital free for one year now which is almost unheard of especially during flu season. Riley is an incredible example to me of what life is all about. I've mentioned this before but Riley has presented experiences in my life that I never would have been able to experience. The most incredible people have been introduced into my life that are such a support to me and my family. We owe Riley's health and strength to the amazing knowledge and dedication of his doctors, therapists and all the others who help take care of him. Riley is an incredible little person. He's got it all figured out! We love you Riley, keep growing strong tiny man!

Happy 80th

On June 3 my Grandma Dolores turned 80! Everyone joined in for cake and ice cream. It was a lot of fun to see all the fam. Most of whom I haven't seen in a really long time.  I love my Grandma so much. I have so many fun memories of her. She always has an incredible garden. She knows just about every plant imaginable just by looking at it. She can tell you where to plant it and how to take care of it. She is also an incredible cook. She makes the best cobbler in the entire world! We could always count on Grandma to come to everything and anything we were involved in growing up. She never missed a football game, a dance performance or a graduation. She is just such an incredible woman! I love you Grandma and wish you a very happy birthday!

Riley with Great Grandma

Brady and Lauren tasting the candles.

Riley's Fund

Our biggest challenge recently has been transporting Riley. It is becoming increasingly more difficult to take him places. We can not fit his stroller in our car and because he has to lay flat in the back seat I can hardly get him in and out because of his size. We are in great need of new transportation for him that he can ride in his stroller. We are happy to announce a website has been set up for Riley to help fund a van for him.
www.getrileysride.org
I have also placed a link to the site in the side bar. If you wish to donate there is a pay pal button on the website. If we could get 1000 people to donate $20 there would be enough for the van and the handicap accessaries. Tell everyone to come aboard and help GET RILEY'S RIDE!
This website was made possible by an old friend from High School, Jordan, who heard about Riley. Thanks for all your work.

Updates Galore

So I ran out of storage space on google so I couldn't post any more pictures and I finally forked out the $5 to buy more storage. So here are a bunch of updates. 

I'll start first with Riley standing. After months of battling with insurance we finally got it approved. In the end it was kind of a good thing that it wasn't approved at first because the original stander we order would have been too small by the time we got it so when it was denied we were able submit for a bigger one. At first he lasted about 15 minutes, and then 30 min and then on Tuesday he was in there for 45 min. while watching Seseme Street. That's the one thing we've learned about Riley and his therapies is that if you distract him with something he likes he doesn't notice he's actually working at something.







The next update is last Saturday we took Riley to the zoo. Riley was more interested in the people and kids around him than looking at the actual animals. I think the animal he was most interested in looking at were the giraffes only because they were right there with out any glass to peer through

We saw some animals that we've never been able to see before...we saw most of the big cats including the tiger.

We also got a chance to experience a rare siting of a peacock showing off it's feathers.  The zoo keeper said that they usually never just randomly show off their feathers.

Of course the best animals at the zoo are the babies. These babies were born last year and so I was expecting them to be bigger but they still looked so small

  Riley's favorite attraction at the zoo is the carousel.

We couldn't get a decent face out of Riley all day long so here are the many faces of Riley at the zoo.

  At the end of the day I think it was a successful zoo trip.

After the zoo trip we stopped up at PCMC to say hi to Lauren. She was kind of having a hard day that day but I think she was excited to see Riley. She is home now and doing well. She goes back next week to start her chemo therapy. She can have her treatment as an outpatient. It will be hard for her to have to keep going back, but I think it will be good because she won't be stuck in the hospital the whole time.

Well, I think that it is for the giant post. Hopefully I can keep up with the updates now that I have added more memory to my files.

Anniversary

Six years ago Marc and I were married in the Manti Temple. I couldn't have asked for a more perfect day or a more wonderful person to marry. The weather was beautiful, the flowers were beautiful and let's face it I had the most awesome wedding hair ever! (Thanks cousin Aimee!) Here's to many more anniversaries...I love you sweetie!

Lemons of Life

I just watched this little video about a woman who was in a plane crash and suffered from burns over 90% of her body.  Before the crash she was just a regular person. Married with kids and just doing the day to day activities of being a mom. She spoke about being comfortable in her skin again and how she needs to remember that she is still the same person even though she looks different from the outside. It isn't easy to adjust to new circumstances in life especially when you don't have any control over these circumstances. It's hard not to compare your life to others and ask why your life had to turn out so different. It's hard not to be angry and jealous of those who have a life that you feel you were suppose to have. Difficult times is when we need the Lord the most but it's also the time when you feel most abandoned by the Him. Unfortunately for me I found it easier to distance myself from the Lord and not include him in my life. When Riley was first diagnosed I felt abandoned and alone. I didn't want anything to do with the day to day of life, after all what was the point. I had worked so hard and tried to do the things I was suppose to do and this was my reward? I felt cheated out of my experience as a mother. I stopped going to church because I couldn't handle being around all the parents and their normal children. It took all I had to just get out of bed in the morning and would spend days in my pajamas. I gained 20 pounds on top of the 20 pounds I hadn't lost from pregnancy. I looked terrible, felt terrible and probably smelled terrible too! :) I would look in the mirror and was so mad at myself for letting life get to me this way. I really needed to snap out of it but I just didn't know how. I began to pray for strength to understand why I had been given this challenge and what I was suppose to learn from it but an answer never seemed to come. Not too long ago when I was having a particularly bad day my mom gave me some advice. She told me that bad things happen in life and you want everything to stop while you try to figure it out. But life doesn't stop, it continues to move on and you have to find a way to move on with it otherwise you'll wake up one day and life will have passed you by. This is the first advice that anyone had given me that really made sense. This is what I started to pray for, a way to move on. It has now been nearly two years since Riley was diagnosed and while I still struggle with a lot of things I finally feel that I have received an answer to many prayers and have begun to move on. Because of Riley I have made new and lasting friendships with the most amazing people that I otherwise never would have met. Because of Riley my eyes have been open to a whole new world that I never knew was out there.  Riley is such an example of courage, patience, faith, hope and the pure love of Christ. It is such a blessing to be his mother. 

I share these thoughts mainly for Brock and Kristin. I want them to know that they are not alone during this experience. I also encourage them to not lose site of their faith in Jesus Christ as I did it only makes the journey harder.

Cancer

Tragedy struck our family again on Tuesday when my darling niece, Lauren, was diagnosed with cancer.  We've been noticing that she has kind of a poochy belly and it has appeared to be getting bigger the last few weeks. Kristin, her mom, took her into the doctor on Tuesday because she thought she felt some sort of mass in her stomach and after an xray they told them to go straight to Primary Childrens.  After a CT scan and an Ultrasound it was determined that she had a large tumor in her kidney, 12cm x 9cm!  Wednesday afternoon they took her into surgery to remove the kidney and the tumor.  They also placed a line in her chest for her to start her chemo therapy through.  She will be in the hospital until the biopsy comes back to determine what kind of cancer it is which will determine what kind of chemo she will go on.  Thus far her prognosis is looking good and we hope and pray that it stays that way. Keep her and my brother's family in your prayers.

Clinic

Yesterday Riley went to his 3 month clinic check up with Dr. Swoboda.  He is doing remarkably well for his age.  They are so excited about his numbers on his neuron mapping test.  They expect his numbers to be declining especially since he is over 2, but he actually increased from last time. YAY RILEY! She is setting him up to get an Echo of his heart and a halter monitor test as well.  He's not showing signs of any heart problems but there have been recent reports of Type I kids who are relatively healthy suddenly die.  Some of the research labs have been reporting similar results with some of their mouse models.  Come to find out that the mice that are dying are showing signs of Cardiomyopathy, a weakening of heart muscles.  Dr. Swoboda told us that she's actually never seen it, but since research is showing signs she wants to just make sure.  The only thing she is concerned about is his weight. Her exact words were "This is an emergency to get his weight down!" At his visit in December he jumped from the 50% for weight up to the 90%.  This visit he is now just above the 90%. He is quite long though he's in the 80%.  At least his height is keeping up with his weight but she's nervous that he's going to get into trouble with his breathing from being so big.  There are a few movements that have decreased in him which is most likely related to his size since his neuron function is still good. She will be going over his diet with the dietician and they will let us know what they want to do.  All in all it was a good visit and I'm just so happy with Riley's progress.  We look forward to his next visit in July.  

what a rip off!

We have been wanting to try to get Riley on Social Security ever since he was diagnosed. The cost of taking care of him is so outragious that we really needed some additional support. We have not been able to apply because our income is 'too high' to qualify so we didn't even bother filling out the paperwork because it's quite the project. With Marc currently not working I felt that it was time to try. Not that I want to abuse the system, but given our circumstances I felt that it was deserved. So I spent about 3 days filling out the paper work; finding addresses, phone numbers and exact dates of hospital admissions and diagnosis. I went through the phone interview and signed all the paperwork. The normal approval process usually takes 180 days but since Riley's condition is terminal they are able to pay benefits during the approval process, but they have to determine whether his diagnosis fits into one of the terminal catagories. What ever! It's been about a month and I haven't heard anything about our case when to my surprise a check arrives on Monday from the United States Treasury Department of Social Security. Excitedly I open the envelope when I was shocked to read the amount of $39! That's right folks with our income cut in half trying to provide for a family of three with a terminally ill child the government feels that $39 will be plenty to house, feed, clothe and provide medical care for Riley! Thanks a lot!

Mall Ratz

Yesterday I took my 10 year old niece to the mall to just hang out for a while.  She picked out a bright green t-shirt with a sparkly penguin on it. Despite my efforts to persuade her into something much more calm she insisted on her choice.  I asked her what she wanted to do next and with out hesitation wanted to go to Claire's. We spent half hour trying on head bands and glitter bracelets. I found myself saying things like "when I was your age this was totally cool!" It was fun to see her excitement over plastic bracelets and ridiculous ear rings.  And yes, I thought all that stuff was so cool! I would save up babysitting money to go spend hours at the mall with friends buying that same bright green t-shirts and those same ridiculous ear rings to match. I would fret over which best friends necklace to buy and who I was going to give the other half to. It was fun to be 10 years old again...well for a half hour at least.

Pain in the Neck

I'm up in the night because my head really hurts from our car accident last night. Yes, that's right we were in an accident.  We were on our way to my mom's to drop Marc and Riley off on my way to work for a NCAA finals boys night out but we never made it. We were stopped at a light at Bangeter when a BMW SUV going about 60 mph hit a Ford F150 who then hit us. Riley was histarical in the back seat and because of his condition the paramedics took him to Primary Children's just to be safe. He looked pretty shaken up but calmed down by the time we got to the hospital.  They took an x-ray of his neck and that looked fine and since he was talking and smiling at the doctor she figured his head must be ok too. With the adrenaline running and being nervous for Riley Marc and I just felt minor aches but now we are really feeling it and probably should go get checked out too just to be safe. I'm shocked that the driver of the BMW walked away with no injuries because the whole front end of his car was totaled. We were lucky that the truck was behind us to kind of cushion the blow otherwise things could have been much worse. They are going to have to replace pretty much the whole back end of our car including the hatch. This means we are going to be driving a rental for a while. When it's all said and done I'm just glad that no one was seriously hurt.

A little bit of this and That

I've been kind of slacking off as far as postings go.  here's a wrap up of what's been going on.  Marc and his sister Heather took Riley and Garrett to the Sportsman's Expo last weekend.  They had a fishing pond where you could catch a trout.  Riley caught the biggest one! But of course when they were pulling it out of the water it flipped off the line.  Riley also got new glasses.  We were having some fitting issues with his other ones and they were really tight against his face.  His new ones are so adorable.  So here are a few pics of the latest happenings.

                                             The Sportsman's Expo                  

                                          

                                           Riley with his old glasses

                                            The New Glasses

                                        
                                          My mom found this Gumby for Riley, it is now his new
                                         favorite toy!

Becah vs. Walmart

For my birthday this year Marc gave me a camera.  I've been needing a new camera for a while and I've been researching them for quite some time.  I wanted something that had good picture quality along with good video quality.  So I decided to get this particular Kodak camera. I've been very happy with my current Kodak camera so I thought I couldn't go wrong.  It had good reviews and it takes HD video which I was excited about.  So I get the camera and it's terrible.  I went through 3 batteries and all the pictures had weird coloring or they were blurry.  The only thing good about the camera was that it did take killer video!  So after a few weeks of trying to figure it out I decided to just return it for a different one.  As luck would have it I couldn't find the receipt.  I figured, it's Walmart they are usually pretty good about it.  So I take it up to the customer service desk and I told them it was a birthday gift and I don't have a receipt.  They scan the barcode to find out when it was purchased.  There return policy is 30 days and it had been 31 days!  The bitchy lady told me that I couldn't return it but I could try calling Kodak because the camera did have a year warranty.  Well, I called Kodak and they wouldn't take it back because it was a 2008 model so technically the year warranty was expired! What a joke!  After a few choice words were said I decided to call the corporate office of Walmart.  My efforts paid off because they called the store I purchased it at and made them return it for me!  HAHAHA I beat Walmart!  So now I have a new and improved camera and so far it works great.  I'll post some new pictures soon.

new blanket

Riley was sent this adorable blanket from Blankets For SMA.  These blankets are made by a girl who has SMA and she sends them out to SMA kids all over!  If you can't tell it has puppy dogs on the front and then the back has little dog bones on it.  It is super cute!  Thanks MJ for the awesome blanket.

first things first

this past week has been chaotic.  We started out the week with a baby blessing and then ended the week with another baby blessing.  In the middle of all that we picked up Riley's glasses.  They had to clip the back of the ears so they can put the loop backs on and after 2 trips to get them readjusted I think we finally have a good fit.  At first he kept trying to take them off but now they don't seem to bother him.  Maybe that's a good sign that they are actually helping him.    All I've gotta say is that he's pretty much the cutest boy in glasses EVER! 

Like I said earlier we had two baby blessings this past week.  Courtney was blessed on Feb. 7 and Makayla was blessed Feb. 14.  Both the girls looked so pretty in their white dresses.

                                                         Marc, Riley, Me and Courtney

 

Me and Courtney

(She's short and stocky just like her aunt becah!)

Marc and Makayla

Riley giving Makayla loves.

 

Four Eyes

For the past oh six months or so I've been noticing that Riley's left eye just doesn't move quite right. His left eye looks at you as if he had a glass eye, it freaks me out every time he does it.  At first I was the only one who noticed it because it only happened every once in a while.  Then it started becoming more frequent and more obvious.  There are only 4 pediatric Opthamologists in Utah 3 are at Moran Eye Center and the other has a private practice.  Dr. Swoboda sent a referal to Moran in November and I couldn't get in until February.  The private practice had an opening the first part of January so I took that appointment as well.  At the appointment in January he said that everything looked good with his eyes as far as he could tell.  The only thing he saw was astigmatism but it wasn't bad enough to have glasses.  I wasn't quite happy with what he had to say because I knew something was wrong with that eye.  So we went to the next doctor and they did the same tests and he saw the same things except Riley actually did the weird eye movement in the office during the tests.  His decision was that Riley needed to be in glasses to help with both the eye movement and his focus because of the astigmatism.  He told me that most kids with these problems don't come in until they are a lot older because their parents don't notice the eye movement and the kids aren't able to tell them they can't see very well.
So it's a good thing that I was being extra observant and determined to figure out what was going on.  If Riley was a regular kid I most likely wouldn't have noticed anything because I wouldn't be tuned in to every little thing he does or doesn't do. I'm always very aware of anything that isn't quite right with him because even the slightest change could become a huge problem.
Riley's new glasses should  be here with in the next week.  It will be interesting to see if it really does make a difference.  I'm curious to see if it will change the way he plays with his toys or looks at his books.  This whole time they've probably all been blurry.   His eyes will be open to a whole new world.

saying good bye

I would like to take a moment to make a tribute to a very special little boy named Hodges.  On February 2, 2010 at the age of 15 months he lost his battle with SMA.  I have never met this young man but he has a special place in my heart as do all the SMA children.  His mother is an inspiration to me because she has not gone through this once but twice.  This is her second child lost to the disease, her first when he was only 4 months old.  
Today my problems don't seem as significant.  The dishes in my sink don't matter.  The fact that I haven't combed my hair isn't important.  Let's set these things aside to think of what is important in life and what matters.

there's no place like home

We made the big move on Saturday.  Marc couldn't get the day off because he had to ask for Wednesday off to be with his brother (see previous post).  Thanks to the Elders Quorum and lots of family and friends we got the move done in just under 2 hours!  It helped that we were just moving down the street, but still that must be a record time.  We still have some odds and ends at the old place along with some cleaning to do but other than that we are officially in our new place.  Now I have the task of putting it all back together.  Even though our new place is the same floor plan it has still been a challenge to make things fit in just the right spot.  It only took 30 minutes of squabbling until we agreed upon the couch placement.  The biggest accomplishment thus far is that I organized the medicine cabinet.  It was out of control.  Instead of food storage I have drug storage.  You name it, I probably have it in there.  Ok, back on subject basically we are settling in and hopefully our lives will get back to normal here soon.  And hopefully this will be the last move for a while!  

Called To Serve

A quick shout out to Uncle Robbie who returned last week from his mission to Equador.  Marc was excited to have his baby brother home.  He has appeared to be a little over whelmed with returning to the real world as all returned missionaries are.  Don't worry Rob you get back into the grove before you know it.

Welcome Home!

We Won!

Thanks to the 57,000 people who voted to make SMA part of the top five winners in the Chase Community Campaign!  The top winner received a million dollar grant and then the next five runners up received $100,000 grants.  Thanks to all those who voted.

vote for riley

Riley is one of thousands of babies born each year with a life threatening disease called Spinal Muscle Atrophy.  Every day is a fight for his life.  He is dependent on machines to feed him and even cough for him.  He can not sit, stand, walk or even give a hug.  He endures all these everyday life challenges with a smile on his face and belly full of laughs.  Currently there is no cure or treatment for this disease but there is a glimmer of light down the tunnel.  There are new potential treatments arising into effect with in this year.  Unfortunately like everything else good in this world it comes with a hefty price tag.  It takes millions of dollars to create new treatments and that's where we need everyone's help.  The Gwendolyn Strong foundation has teamed up with Chase Community  Giving Campaign to fight for a cure.  Currently the foundation is number 7 in the running.  There are only three days left to vote so log on to your facebook page and tell your friends, your family and anyone else you meet to vote!  follow this link and click to enter the voting page.  scroll down to The Gwendolyn Strong Foundation and vote!  Here's to number one! http://www.facebook.com/ChaseCommunityGiving#/ChaseCommunityGiving?v=app_162065369655

The great adventure of moving has official begun with what seems to be endless amounts of packing!  I'm not sure where we accumulated so much stuff.  there's no other word for it...stuff...it is always there, it never goes away and no matter how much you try to get rid of it, there is always more stuff to take it's place.  one would think that after having moved 5 times in the past 6 years I would down size and become stuff free.  instead i just box it up and add it to the pile.  in fact i have never even fully unpacked from last years move.  so now i've got new boxes of stuff to add to the old boxes of stuff.  as of yesterday i do have one box and one bag full of stuff to take to the DI (utah's version of good will).  i just hope marc doesn't notice that a lot of his stuff is in that box!  i promise i will find my own stuff to put in that box too. 

stop the world i want to get off

have you ever felt emotionally detached from your body? you walk around doing the every day things but you look into the mirror and you can't believe that's really you staring back? you're body is there but your mind is off somewhere else. for me its usually when there is some sort of life changing event because it forces me to give up what i know and enter into unknown territory. i don't do well with change. let me rephrase that. i don't do well with change that isn't on my own terms. for the past couple of years my life has been changed with out my consent and it's really starting to take a toll on my emotional well being. for the past year we have been renting a cute townhome to which i have grown accustom to. despite the fact that it's not the greatest set up as far as wheelchair access it's been a great place to live. it's close to shopping, only 15 minutes from my work and i don't have to worry about watering the lawn or shoveling the driveway! we have had no intention of moving and were actually all set up to sign another lease at the end of the month when out of the blue the owners call us and tell us that at the last minute they've decided to put the home up for sale by next month. that information would have been handy two weeks ago when the topic of lease signing came up. all i can say for them is good luck trying to sale this place along side 7 other units for sale on the same street a few of which have been for sale since we moved in last year! i hate moving and to have to move at moments notice is even worse! so i am going to sign off now to venture into a world of boxes and packing tape.

a new me

don't press the back button it's still me...the one and only ogden blog...i've decided to go in a new direction and i started with a new name. i want to invite you all to come through the looking glass into a world that is different than your own. to get a taste of life with no artificial preservatives added...it's all the real stuff people!