The Test Results are Back...

After a really long time we finally got the test results back from the $8,000 SMARD test. It was NEGATIVE! Blake Evan Smith Does not have SMARD.

We then did a $4,000 test to see if Blake had SMA. The results showed Blake did NOT have SMA.

We are awaiting results for TRPV4 Gene (transient receptor potential cation channel, subfamily V) a $2,000 test. If that test comes back negative we are in the process of getting pre approved for a $10,000 genome test. The genome tests all the genome genes in the body. This test would also include testing Becky and Chad. They will then compare which gene is defective and why.

The Neurologist is very confident that what Blake has is a Neuromuscular disease. Which we have known for a couple of years. There are hundreds of Neuromuscular Diseases. What is a Neuromuscular disease?

According to the University of Pittsburgh Department of Neurology.

A neuromuscular disease is a disorder that affects the peripheral nervous system. The peripheral nervous system includes muscles, the nerve-muscle (neuromuscular) junction, peripheral nerves in the limbs, and the motor-nerve cells in the spinal cord. Other spinal cord or brain diseases are not considered “neuromuscular” diseases.

Patients with neuromuscular diseases can have weakness, loss of muscle bulk, muscle twitching, cramping, numbness, tingling, and a host of other symptoms. Problems with the nerve-muscle junction can also cause droopy eyelids, double vision, and weakness that worsen with activity. Some neuromuscular disorders can also cause difficulty with swallowing and sometimes with breathing.

We had a trach-vent clinic Aug 15th at Primary Children's Hospital in SLC Utah. We were able to make an appointment with Dr. Kathryn Swoboda a Neurologist at The University of Utah- Primary Children Hospital. We have never met DR.Swoboda, the Neurologist we have been seeing is Ai Sakonju. However, these two doctors work together. So we were super excited to meet Dr. Swoboda. Our appointment time was 2:30pm. Becky being the awesome mother she is was early to the appointment and we were taken back 15 minutes early. From the moment Dr. Swoboda met Blake, she was elated. She had read up on Blake and was so excited to be working with such a unique case.

Back in April Dr. Sakonju ran a EMG test which is where we got the SMARD diagnosis because Blake scored so low. Well, Dr.Swoboda ran another EMG and got the exact same results as Dr.Sakonju did back in April. Dr. Swoboda's excitement was contagious she was calling in all kinds of doctors and nurses even student nurses to come and look at Blake. They took pictures and videos of Blake walking. Blake loved all the extra attention and was strutting his stuff. He was such a flirt.

There were a couple significant observations Dr.Swoboda noticed.

***First, when a normal person looks up they move their head to look up.

Blake does NOT

***Second, Blake Cannot or will not stick his tongue out. He moves it a little but that has some significant meaning in the nuro world.

Dr. Swoboda is scheduled out 3 months but she wanted Blake to come back tomorrow and have another test done. So we came back on Thurs Aug 16th and had another test done. We can't remember the name of the test. But they started an IV then they put some meds in the IV. Apparently when they put the meds in the IV there is suppose to be a profound response. Blake did not have a significant response like they were expecting. This ruled out another thing in the long list of possible neuromuscular diseases.

They are looking at sending us to a Mayo Clinic in Rochester, Minnesota. To Meet a Neurology team there. They will continue to figure out how we can best help Blake. And maybe just maybe get a Diagnosis.

Right now we are awaiting the approval for our genetic testing. Then, we have to wait the standard 6-8 weeks waiting period. We are definitely anticipating the results of this test.

We are excited it's not SMARD! We are relieved it's not SMA!

We are sad we do not have a Diagnosis. AGAIN!!

Blake's New Kayserbetten bed

We absolutely love love love Blake's Kayserbetten bed.  For over 30 years Kayserbetten has been providing beds to special needs children both in the hospital and in many homes.  We were so excited to learn about these beds.  We talked with our insurance company to order our bed well it turns out that Kayserbetten is not a preferred provider.  So they referred us to WS&S equipment who did not carry any Kayserbetten beds. Sad :-( They wanted to set us up with a regular hospital bed.  We were talking with our Doctor, Dr. Sampson-Fang, and she told us that Blake medically needed the Kayserbetten bed and no other bed would work. Dr. Sampson-Fang did all the required paper work for WS&S Medical equipment to order this  awesome bed.   It was delivered by a semi truck it took 4 adult males to haul in all the boxes and about 5 hours to assemble this bed.  To learn more and order your own Kayserbetten bed go Here.

This bed is ergonomically desingned.  Making is easy for Blake to operate.  One of our favorite features is the bed can be lowered 13" from the ground that is low enough so Blake can just climb into bed all by himself :-)  It can also be raised to a level that Chad can reach, remember Chad is over 6 feet tall, without straining his back.  Awesome!!!!

Blake has never slept better then he does in his new Kayserbetten bed.

Aleah and Blake going for a ride. We love our Kayserbetten Bed. 

Move to Las Vegas

Becky, along with her mother and friends pack and organize the whole house. When our Ward (Ely 3rd Ward of the Church of Jesus Christ of Latter Day Saints) Came to help load the truck they were very impressed with Becky's ability to pack and organize. It made loading the truck so much easier. Our Ely house is listed with Desert Mountain Realty, Inc Go here to see the listing. It's a really nice house. Put the word out if anyone is interested in a beautiful 3 bedroom house in Ely.

Here is our Nephew Dallan super Strong.  Thanks for all your help buddy. After the truck was loaded the Relief Society came and shampooed the carpets. They helped Becky repaint the entire house and get it ready to sale. 

Chad knows a guy that works at Access Securepak®.  Access Securepak® is a program designed to allow family members and friends to send packages to inmates.  Chad asked them to save some boxes for their upcoming move.  Chad said. "It was really nice because they had the same size boxes for all their stuff." Thank you Access Securepak®. 

Our new neighborhood. 

Our new beautiful 4 bedroom 2 1/2 bath house. 

Thanks again to all the Ely 3rd Ward, friends and family for all your help with our move. And thanks to Curtis Child and his family they helped us unload our stuff in Las Vegas. It was very helpful. In our new home each room has a vibrant color. So when the Child's were helping us unload the truck, we would ask them to put the box in the purple or blue room etc. Made unloading the truck and organizing the boxes easy.

Chad is super excited for his new job at the Prison.  He has already settled in quiet well.  Becky has interviewed with the school district and is awaiting fingerprints and her background check to come back before she signs her contract.  Life in Las Vegas is going really well.  We absolutely love our new house.


It was so sad to leave all of our friends and family in Ely, NV, but we are super exited for our next adventure here in Las Vegas, NV. We are especially excited for all the extra health benefits and opportunities for Blake.

Benefit Dinner

It's been a long time since we have updated our blog.  This will be the first of four new posts.  A lot has happened in the last two months.
  We are going to start off with the Benefit Dinner held June 15th for our Family.  The Event was held at the White Pine High School. Members of our community put together this amazing benefit dinner in just over one month.  There were countless donations and time that went into the planning and carrying out of this benefit dinner. People were very kind and extremely generous. Even businesses through out our town were extremely supportive. Garnet Mercantile ran a special if you purchased a ticket to the Smith's benefit dinner you would get a % off that days purchase. Everyone was so nice and so very helpful in putting out the word and helping to sell tickets.  The local news paper,"The Ely Times", interviewed the Smiths.  You can find the interview article Here. The local radio donated some air time to advertise for the benefit dinner.   They sold 500 tickets, and just under 400 people attend. AMAZING!!!!! We were blown away by the turn out. Our community did all of this for us even though they knew we would be moving to Las Vegas.  We are in awe of this wonderful community. The dinner they served that night included: ham & pineapple, green beans with bacon and almonds,baked potato's, and for dessert they served homemade cupcakes.  Yummy! Chad said, "It was all Fabulous."
That night they had two auctions; a kids auction, and an adult auction. The kids auction had bikes and toys of all kinds.  The adult auction had everything from furniture to vacations.  A local store donated a recliner, we had two vacations one to Montana, and one to Maui. We had some local artist that donated some art, and lots of wonderul handmade crafts. Connie Muir played the piano and Cathy Tuker was the DJ/Announcer. It was UN believable!
We are just so grateful we have been able to be apart of such a wonderful, kind, loving, and supportive community.
We felt so loved and appreciate all the support, time and effort that went into this amazing benefit dinner. Thank you all so much we are going to miss you!
Chad, Becky, Aleah and Blake Smith

Our awesome loving supportive Community.

Some of the items being auctioned that night.

Some Yummy Cupcakes