Promise me you'll always remember: You're braver than you believe, stronger than you seem, and smarter than you think. Christopher Robin

Tuesday, May 29, 2012

A Benefit Dinner!

Greetings,

A benefit dinner for Chad, Becky and their family will be held on Friday, June 15 at White Pine High School. There will be a dinner, dueling pianos (Connie Muir and Adam Young), and an auction.

How can you help?
*Please mark your calendars now and attend the dinner!
*Please consider donating items to the auction. We are specifically looking for themed baskets, baked goods, services, homemade items or other tangible goods. Please let me know if you have items to donate - we are looking for items in all price ranges.

We would like to have the auction items donated by June 10 so we have time to organize them. I will gladly pick them up, or if you live out of town I will give you my mailing address.

Thank you in advance for your help!

Regards,
Amanda Hilton
hilton_amanda@hotmail.com
775.293.0117
Chad was talking to one of the inmates about a problem he had. 
They carry several O2 bottles in the back of the van.  While they drive the O2 bottles clank and move all over. 
So the inmate came up with a solution to Chad's problem.  He made this beautiful bag that will hold 4 O2 bottles.
 The inmate decited to use "White Alligator" becuase of it's strenghth.  It works AWESOME!  Thank You!!!

Blake and Aleah at Outback Steakhouse May 25th.  YUMMY!

Tuesday, May 8, 2012

It's so fluffy I'm going to die!

Aleah's Kindergarten class is doing a lesson on Chicks.
They gave each class a kit. The kit came with fish, worms, and bugs.
 It did not however come with "Chicks:. 
Naturally, Becky and Chad wanted to complete the lesson so they went and picked up "4" baby chicks.
They are going to keep the chicks for a couple weeks. Then  Uncle Aaron will be raising them.
 

It's just like Christmas here.  So much excitement.  Aleah, loves her fluffy yellow Chick.
And we love our Aleah.

They love to go outside and play together. 
Beautiful Aleah, she is growing up way too fast!

Blake loved to pet the new chicks.

Friday, May 4, 2012

Shields Orthotic Prosthetic Services

Our Cute Blake
At our appointment this morning, we were told Blake had "Planovalgus" this is a condition in which the longitudinal arch of the foot is flattened and turned outward. We are going to take castings of Blake’s Feet for his new Ankle Foot Orthosis (AFO) Braces.  The Practitioner that helped us today is named Jared, just like my Uncle.
The first step in Casting the new braces.
  The first thing Jared did was put a sock on Blake's foot. He then proceeded to make some marks on the socks; He marked Blake's Ankle, Ball of his foot, and his arch.
 *Blake thought the Doctor writing on his sock was really cool :-)*
The second step in Casting the new braces.
 Lots of wrapping.
Here is the final casting for the new braces. 
When Jared went to cut the casting off, Blake got really nervous. Jared let Blake touch the scissors which was all it took to make Blake feel better.  Blake then gave Jared the “thumbs up”. It is now okay for Jared to cut off the castings.
The castings will be ready in about 1-2 weeks. Because we live so far from Salt Lake City, we will come back for the fittings before or after the upcoming Nissen next month. We are so excited. Thank you Jared for helping us get our new AFO Braces. Our fun in Salt Lake City has ended; it's time for us to go home.
Blake sound a sleep.  Whew, what a fun adventure.
But before we leave we have to make a very special stop. Sister (Aleah) and her friends need us to pick up some Gold fish, and guppy fish. May the fish travel home safely!

Thursday, May 3, 2012

Father & Son Trip to Salt Lake City, Utah

Blake waiting to see
Dr Black(Surgeon) & Dr. Holms (Orthopedics)
The adventure started at 4:20am this morning.  Well technically last night.  Becky (My beautiful wife.) organized and packed everything for Blake.  Just getting all the equipment ready to travel is a huge process. Not to mention all the supplies: Blake's food, feeding bags, ferrall bags, drain sponges, etc.  At 4:20 this morning, the nurse held the flash light while Chad prepared the ventilator for travel.  You have to change out the wet circuit and unplug all the cords and put on the dry circuit. We loaded everything into the van, Ventilator, Humidification portable station, and the portable feeding pump oxygen,  and extra oxygen.  It's crazy how much stuff Blake needs for one over night trip. That's why we love our Toyota Sienna Mini Van. Blake enjoyed his breakfast on the way to the hospital via his GJ- Tube. (We will talk about this more a little later.)

We got to Salt Lake City around 9:30am and went straight to the hospital.  Why? Because it's Thursday, of course, and for anyone who has ever been to Primary Children's Hospital, you know that Thursday Mornings are "Blueberry Pancakes". Now, blueberry pancakes are super yummy, However, Primary Children's Hospital adds this yummy buttermilk syrup and it's to Die for. Can you say YUMMY???  We love Thursday Morning Breakfast!!!!
Here is the best Blue Berry Pancakes with Buttermilk syrup.  YUMMY!!!

After our yummy breakfast we went to our first Dr appt for the day.  We checked in to see Dr. Black.  A little background, Dr. Black was the same Doctor that put in Blake's G- tube (feeding tube).  A G-tube stands for Gastrostomy Tube. It's a tube inserted through the abdomen that delivers nutrition directly to the stomach and is approximately 1/2 inch long. Blake had a G-Tube for approximately 6 months. We had to  transition from a G-tube to a GJ tube because Blake kept throwing up and couldn't tolerate any food in his stomach and he kept aspirating into his lungs causing "aspiration pneumonia". Not good.

So now Blake has a  GJ- Tube which stands for Gastrostomy-jejunostomy. The GJ-Tube has two separate routes. One route is delivered into the stomach. The other route is delivered into the small intestines (also known as the jejunum, hence the "J").Because the "J" part of the feeding tube is threaded into the jejunum, GJ-tubes are placed in the x-ray under fluoroscope (this is like a video x-ray machine). The "J" portion of the feeding tube that is inserted into the body is much longer because it has to be threaded through the stomach and then a bit further into the small intestines to prevent it from retracting back into the stomach. It's approximately 10-12 inch.  The nutrition (food) totally bypasses the stomach and directly enters the small intestines. That is why it takes so long for Blake to eat.  It's not just a quick 5 minutes.  It takes about 13-14 hours for Blake to eat. Typically Blake eats while he sleeps and he only eats once a day.

Whew, that was a lot of information. Back to our appointment with Dr. Black.  The reason we had an appointment with Dr. Black was because while we were in Cincinnati March 13 we saw Dr. Putnam, a Gastroenterologist, who performed a scope on Blake.  He found: bleeding, ulcers, gastric erosion in the stomach area, and lots of reflux.  He suggested that Blake get a Nissen Fundoplication, which will wrap the intestine around the esophagus to prevent future reflux/aspiration. AWESOME!!  Dr. Black will be performing the Nissen Fundoplication Wen. June 6th 2012. We are very excited about this procedure and for the opportunities it will open up for Blake.  There is a possibility that Blake will be able to go back to feeding with a G-Tube.  That is super exciting because Blake will no longer have to go to Salt Lake City to have the GJ- tube re positioned with the x-ray machine if it gets pulled out by accident or has other issues.   Instead, Becky and Chad will be able to change the G- tube.  Very exciting!  And the fact that Blake will feel better not having all of this Acid reflux, ulcers, erosions, etc.  This is Very Good NEWS!!!

We had a couple hours in between appointments so we checked into our Hotel.  Blake put on a light show.  He really enjoyed turning on/off the lamps.  It was so fun to watch him play.  We loved the light show. After we chilled a little bit we headed back to the hospital.

We checked into see our next doctor.  Dr.Holms is an orthopedic specialist. We are seeing him because Blake has a scary walk.  Right now Blake has a brace called "Dafos" this brace comes up to Blake's ankle.  Blake was seen by two doctors, one was a resident and then Dr. Holms. They did a couple x-rays. Blake has a beautiful spine.  Awesome!!!  He has beautiful hips. Awesome!!!  The problem is that Blake has "low muscle tone."  This means his skeletal structure is good, awesome, fantastic; however, he does not have the "Muscle Tone" needed for him to walk well.  So he will now be fitted for a new brace called Ankle Foot Orthosis (AFO). The AFO will come up around his calf.  Tomorrow, Blake will go to Shields Orthotic Prosthetic Services where they will take molds of his legs and feet.  In a couple weeks, they will have created new braces for Blake.  Very Cool!!!!  We are not sure how long he will have them or how long he will have to wear them, but for now, we are just so excited he will have some new braces and be able to continue to walk.  What a blessing!











Wednesday, May 2, 2012

Upcoming Father and Son Trip to SLC

Blake & Aleah Ready for Church. 
Aweee we love watching Aleah do her Gymnastics.

We are ready for Bed.


Aleah and Blake, best of friends. 
We love the nice sunny weather.
Aleah is the Pitcher today. 
Tomorrow Thursday May 3rd. Chad and Blake are going to SLC for more appointments. They will be seeing two doctors. Dr Stephanie Holms with Orthopedics (look at Blakes feet and legs, he has developed a funky and scary walk.) and Dr. Black with Surgery this is a consult for an up coming Nissen. They will also hopefully be meeting another SMARD family in Utah. Yeah so exciting. Will be updating with Pictures and information as it become available. Thanks for all your Prayers, love, and support.

SMARD research at The Jackson Laboratory

Blake telling you that He "Loves YOU"

This is one Handsome DUDE.
We found out some pretty exciting news. The Jackson Laboratory is researching SMARD. Dr. Cox & Dr Prabakaran launched a video all about SMARD research it's about 35 minute long. It's pretty interesting. Enjoy!
http://www.jax.org/video/index.php?vid=smard