Petition For SMA research

There is a family in the California that has started a petition to sponsor legislation through to Congress that will allocate federal resources to non-profit and research organizations focused on finding a treatment and/or cure for SMA. By signing this petition and urging Congress to support this legislation, you can change the lives of thousands of children and give them the future they so deserve. Please take a few moments and sign the petition and please tell everybody to do the same. Thanks.

http://www.petitiontocuresma.com/

Ernie

The last time that we went down to Primarys we got Karson this little Ernie for being so brave. He is so tough! He has had IV's galore, a spinal tap, countless blood work, constant suckin of flem out of his throat via his nose, the bi-pap machine, the cough assist machine, the pulse-ox, not to mention feeding tubes that have been pulled out and have needed to be replaced (which is a process, let me tell you--you can't just shove it down there. It needs to be replaced by a Radioligist-- which means a trip to Primarys--even it is it at 1:00 a.m.-----Mary) :) Soooo, needless to say he is amazing and he deserves an Ernie doll and much more.

Our little man is our hero! We love him to pieces!

Just so you know, the stuff on his forehead and cheek is called duaderm-

it prevents skin breakdown and promotes healing from his bi-pap machine.

Past few weeks

I'm not going to lie, it is hard to see our little man like this, but we are glad that there are machines that make him feel better.

Haddie and Kars

Karson's 5 star accommodations

I love this picture! Karson was absolutely fascinated with the mobile on his crib, he wouldn't even look at me and Jody when it was on. He is sooo cute!

Many of you know that a few weeks ago we had a scare with our little buddy. Jody didn't like the way that he was breathing, so we hooked him up to his pulse/ox and his oxygen levels where really low and his heart rate was off the charts. After talking to the on call neuro doctor we decided that we needed to take him to Primary's. Earlier in the day we had suspected that he had aspirated while eating his bottle. Anyway, @ 4:00 a.m. we got to the E.R. and he had a temperature of 102.4. After a slew of tests, including a spinal tap, they were quite certain that he had aspiration pneumonia. He was a sick little guy and he had to stay five days in the hospital. As a result of the aspiration he now has to eat via a NJ tube which sends his food directly to his intestine. He is attached to a pump 20 hrs a day for a continuous feed and he will longer be able to eat through his bottle. He will have this until he is fitted with G-tube this will come out of his tummy and go into his stomach. Until then, let me tell you that it is quite a process moving Karson from one room to another, let alone going somewhere in the car.

We have been very impressed with everybody at primarys'. They are all so nice and so helpful. Although we wish that he didn't have to stay at the hospital, a lot of good came from the visit. First, he got used to wearing his bi-pap because he pretty much had to wear it for 5 days straight which is a huge relief for Jody and I, and secondly we learned how to use his cough-assist machine much more effectively. We were very glad to bring him home again.

The kids

Aunt Sharee & kids

This is my sister Sharee

Grandma and Grandpa Riggs

This is Darren's mom & dad with the kids. We were thankful they were able to come out from Baton Rouge ,Louisiana. Hadley was fascinated with Grandpa and Karson was fascinated with Grandma.

Karson's Bi-pap

When Karson was diagnosed with SMA ,the doctor told us there were going to need certain machines to prolong his life and this one of them. It's called a Bi-pap and I hate it but I'm glad we have it because when he's to tired to take a breath it takes it for him. The problem with it is he has to be asleep to put it on and then most of the time he wakes up 15 minutes later and freaks out from the air blowing in his face. When Hadley first saw this she was scared but Grandma Riggs helped her name it his froggy face.

Our Angels

Our dear sweet friend Jessica took these pictures for us on Karson's blessing day. Thanks Jess. We love you guys.

Blessing Day

Karson - on his blessing day.

In the all of the chaos of last week we neglected to post about Karson's blessing day. It was a beautiful day!! We had a wonderful time with all that were able to attend.

Amazing

My mom and dad (Val and Marie) were able to come this past week to be with us and we were so glad that they were able to come out. Because of their incredibly busy schedules they had to leave late Friday night so that my dad could be back for Stake Conference. Elder Christofferson, the newest memeber of the 12, was their visiting authority. Mom and Dad were able to spend time with him in meetings, lunches, etc. Anyway dad called yesterday and said that Elder Christofferson wanted to know all about Karson and our family and he said that this Thursday, when the First Presidencey and the Quorum of the twelve meet in the temple for thier weekly meeting that they would discuss us and that they would pray specifically for us. We can not believe what a great blessing this is. We feel so honored and blessed by this. We know that our Heavenly Father is watching out for us, especially Karson. We can not believe all of the poeple that have extended their love and support, we are eternally grateful and we love you all so much.

News

The majority of you already know but for those of you that do not, we have recently recieved major and personally devistating news. Last monday, Jody took Hadley and Karson to our pediatrician to have them checked out. A few weeks prior Jody's dad noticed that Karson was not moving as much as he thought he should. We tried to dismiss it as him being to young and slightly premature. But our concerns were validated when our Pediatrician said she was very concerned that Karson was very "floppy" and that she recommned that we take him to the ER at Primary Childrens. While in the ER, we met with a neurologist that examed him and then said that Dr Sowboada, one of the top 8 neuro-muscular Doctors in the nation would be in to see him. She came in and in only a few moments diagnosed him with SMA (spinal muscular atrophy). To say our lives came crashing down around us would be a gross understatement. It was truly our darkest hour. Since that time we have been overwhelmed by the outpouring of love and kindness by our loved ones and especially our Heavenly Father. We absolutely could not have made it through this past week without you all and above all without the knowledge of the plan of salvation. We are still experiencing and will continue to have some very difficult times but we are resolved to make the rest of his young life the very best that it can be. We love him soooo much and we KNOW that he will FOREVER be a major part of our family.


We plan to continue to use this blog to give you all updates on Karson and the rest of the family.
If you want to learn more about SMA, the doctors gave us this website to visit www.fsma.org

Major Catch Up

Rare glimpse of Karson's eyes

The look on Roscoe's face says it all!

Little Jo jo!!

This is Karson's favorite naptime location.

Our lives have been majorly busy these past several weeks. Jody has had some late nights and is still in the process of getting used to 2 kids. I started school again a few weeks back and I have been working on several home improvements for the in-laws.

This is the Life

In the time that Karson has been home, this is how he spends the majority of his time. Man, it's rough being a newborn! He is such a good baby. He never cries! He just grunts and whines like his older sister (who is a bonified pro!) We just love him!

Check these out!

Thanks Jess for taking such cute pics of the kiddies. We love 'em!!!! You're the best!

Check them out at the link below.

http://lookthroughmylens.blogspot.com/2008/04/i-love-these-two.html

Week 2

These two pics were taken at 1:00 in the A.M. When Karson was in the womb he would always wake up around 1:00 in the morning ready to go and now that he is here is doesn't seem to be considering a new schedule yet!!

Catchin' some ZZzzz on Grandma!

Hadley --- The BIG 4

How can it be, our little baby Hadie is 4 years old?!? If you can not tell her birthday party had to be all about princesses.

The Princess Hadley, herself!

Aaaahhh....

Whewwww!

Felllow princesses, Tasia and Cazley, are willing to assist with the blow. It was a really fun party and we were sad that Mommy and Karson couldn't be there because they were still in the hospital.

Karson - The First Week

Hadley and Karson at the Hospital right before we brought him home Monday afternoon. She is a very proud BIG sister! Don't try to adjust your screens, Karson really is that Orange/Yellow. But he is looking better everyday.

Little Guy!!

Sleepin'

Lookin'

Suckin' ---

We are already head over heels!!!

HE'S HERE!!!!!!

Our Little Buddy has arrived! He could not wait until Tuesday, when Jody was to be induced. Last Night at 1:00 in the morning Jody started to have contractions and by 4:30 we were admitted into the Family Birth Center. Karson Michael Riggs, was born at 10:42 a.m. on 4/12/2008. He was 6 lbs. 14 oz and 20 inches long and a HANDSOME little devil if we do say so ourselves!!

Because he was born so early, his little lungs aren't quite yet developed so he spend most of the day in NICU connected to a bunch of monitors. We are so glad that we live in this day and age!!!

Hadley was soooo excited to get to hold her little brother for the first time. Priceless!!

Hadley was also VERY helpful in taking care of Mommy! She took good care her and dressed the part to a tee!!

The Day is Upon Us..

The day truly is upon us. Last Thursday Jody had her check up and the Doc said that she was already dialated to a 3 and the mucus plug (nasty) was all but gone. The doc also said that the he was measuring at about 7 lbs. and that if Jody were to go into labor at anytime from then on she would not stop it. (Four weeks early) As long as the baby is fine you will not hear Jody putting up a fight. She has been miserable for weeks now, as you can see above from the size of this kid. So anywho, we have been busy little beavers getting everything ready for Junior's arrival. SO, as per the request of my mother, I thought that it was now or never for a pregnant Jojo pic. Isn't she sooo cute???

Here is another pic of the belly

While we were taking the pics, Hadley (already naked for the tub) couldn't resist giving Mommy's belly a little squeeze. She loves to feel her little brother kick!! She is VERY excited for his arrival.

Our Hadie!!!

Our daughter is very animated! This is one of the infinite things that we love about her. She has such a bubbly, livly, creative personality. She loves to sing. She loves to bust a move at any given moment! She loves to pretend that she is a nurse, a mother, a waiter at Tony's Pizza, a princess, a grandma, an animal doctor (poor Roscoe!), etc. The list could go on and on. She also loves to pull faces at the camera (see above). We love her so much and are very excited that she is getting a baby brother in just a few short weeks.