"You didn't give me these arms, but you gave them a family to hold.
You didn't give me my body but you've truly shaped my soul. Your love has given me wings and how my spirit soars. Knowing that I always will be yours. Forever and for always I am yours."

Thursday, July 26, 2012

What? Hospital again??

Yes, stressful is the way to describe last week.  I guess I am recovered enough to finally post about it.

Jaeya and Meisyn spent the week at Shriner's Resort, er, Hospital for Children.  We are immensely blessed to be cared for by the kind and generous people of Shriner's.  My children adore them as do I.

Jaebird had her first IV pamidronate infusion.  We were kept overnight Thursday as it is not uncommon for children on their first dose to spike a fever.  Jaebird did great and on Friday late afternoon we were released.  By the time we finished Grandma Carol's penny auction and bbq Jae was wilting.  She didn't look so good.  By Saturday morning she started a fever.  Good thing we were prepared. No problem!

It was time to go to Grandpa Keith's 80th birthday bash and she had to stay at Grandma's.  She didn't feel up to the festivities.  We decided to drive home at 8 PM as Jaebird just wanted her own bed after a week away at the hospital.  We arrived home at 1 AM.  At 3:30 she started projectile vomiting.  Again at 5 AM.  I was holding her in my lap at about 10:30 AM and she started bobbing her head.  Stephen exclaimed, "Stef, she's seizing!"  Sure enough Jaebird fell into a full blown grand mal seizure.  We had Ammie's diastat handy and administered a dose.  On the way to the ER she started vomiting old blood.

Jaeya ended up being admitted to the hospital after having a CT scan and many more blood tests.

It is unknown what exactly caused her seizure but it was likely a reaction to the pamidronate.  When I told Jaeya today that we go back to Shriner's in 5 more days she whined and hid her arm behind her back.  NO MORE IV's!  Nope, I assured her.  This time she and Meisyn are going to be fitted for their new POWER CHAIRS.  Daytona better watch out.

Tuesday, July 10, 2012

Who knew we would be so lucky with Meisyn's care?

As we walk Meisyn's medical maze we see that while we did not know, did not have an inkling of what her medical issues would involve, there was direction in where Meisyn landed in a family.
We had more specialists to visit today.  We will also get to visit a pulmonologist.  Meisyn's muscles around her lungs aren't so spectacular.  She starts her training with an occupational therapist on Thursday.  She and Jaeya both had 4 vials of blood drawn for more tests than I can remember.  You can see from their pictures how brave they tried to be.  What warrior girls!

Meisyn also will have to have a muscle strength test done under sedation at Primary Children's Medical Center.  They will at the same time pull her 5 rotten teeth out.  With her lungs the way they are, sedation is more dangerous for her than for other children.
Collagen IV myopathies are not common...and yet....and yet....we have learned that one of the leading researchers and experts in this specific field....is...in....our...backyard.  I have pasted his bio below.  Dr. Butterfield is going to be a most important person in our journey.  "His current efforts are in characterization of genotype/phenotype relationships and molecular pathogenesis in collagen VI myopathies.  He has an interest in all types of neurogenetic and neuromuscular disorders with an emphasis on muscular dystrophies of childhood onset."
How did a child with rare collagen VI muscular dystrophy end up in UTAH with an expert in this field as her doctor????  One of those tender mercies that confirm our Meisyn is meant to be here.
Jaeya sees the geneticist, nutritionist, audiologist, and OI specialist again tomorrow.  Then she begins her first pamidronate IV treatment on Thursday.  Caden will be infused in one day but because Jaeya is so tiny she will take two days.  They prefer to do it over a three day period but as we live 4 hours from the hospital have shortened it to two.  She also has a referral to the endocronologist. 
Upon finishing day one of our four day medical treatment marathon, Jaeya declared, "Oh my goodness!  Too much doctor!  Jaeya no like so much doctor!"  It got even better when she finally understood that the 5 vials we brought home are for her stool specimens.  She wrinkled her face and said, "Really??  Really, really?  Why doctor want?  Doctor eat it????  Oh my goodness, oh my goodness.  That disussing!  (disgusting)"  She just cracks me up.  At the blood draw the nurse made a big deal of Meisyn being such a big girl and not crying.  Jaeya was her typical anxiety ridden self and worried it would be "oooochy".  When the nurse asked, "Are you going to be a big girl too?"  Jaeya promptly replied, "NO!  Jaeya no big.  Jaeya velly, velly small girl".  But she ended up doing awesome and didn't cry.  The worry always eats her up more than the reality.
So tomorrow we shall see what day 2 brings us.

Russell Butterfield, MD, PhD

Instructor, Departments of Neurology and Pediatrics

  • BS (Microbiology), Brigham Young University
  • MD (Medicine), University of Illinois
  • PhD (Genetics), University of Illinois
  • Residency-Pediatrics; University of Utah, School of Medicine
  • Residency-Child Neurology; University of Utah, School of Medicine
Clinical Interests
Pediatric neurology, neuromuscular disorders, neurogenetics, metabolic and mitochondrial disorders
Research Interests
Genetic aspects of disorders of muscle including myopathies and muscular dystrophies, with particular interest in collagen VI myopathies (Ullrich congenital muscular dystrophy and Bethlem myopathy)
Dr. Russell Butterfield is an Instructor in the Departments of Pediatrics and Neurology at the University Of Utah School Of Medicine. After receiving his B.S. in Microbiology from Brigham Young University, he joined the Medical Scholars Program at the University of Illinois at Urbana-Champaign. He completed his PhD training in mammalian genetics, studying genetic aspects of organ-specific autoimmunity. After completion of medical school he moved west to the University of Utah, School of Medicine where he completed training in Pediatrics and Child Neurology.

Dr. Butterfield is a Muscular Dystrophy Association Fellow under the Clinical Research Training Grant, supporting his study of neuromuscular disorders. His current efforts are in characterization of genotype/phenotype relationships and molecular pathogenesis in collagen VI myopathies. He has an interest in all types of neurogenetic and neuromuscular disorders with an emphasis on muscular dystrophies of childhood onset.

Thursday, July 5, 2012

Citizens Red, White and Blue

"Dear Fellow American:

   You now share in a great experiment: a nation dedicated to the ideal that all of us are created equal, a nation with profound respect for individual rights.  the United States is a land of unparalleled natural beauty, vast opportunity, and freedom.  It is home to people who have been drawn to our shores from all over the world and who share a common love for life and liberty.

   Please join me in devoting your hopes, your prayers, your energies, and your labor to our common good and to the future of this wonderful country.  Together we must strive to safeguard the freedoms we hold so dear, not only for ourselves but for future generations."

Our newest American Ellisons celebrated their first Independence Day with stars, stripes, and sparkles.  No sparklers, too dry and fire danger is too high.  So the sparkles and glitter took their place.  Jaeya and Meisyn still aren't quite sure what it all means but they will.  May God continue to shed his grace on America, land that we LOVE and HONOR.

Tuesday, July 3, 2012


He has a birthday shout hooray!
We're gonna sing to you today!
One day older and wiser too
Happy Birthday, to YOU!

Caden reached his long awaited 12th birthday on July 2.  Why does 12 seem so much older than 11?  He joins our 7 children between 12-19 years old who, along with their friends and the "littler siblings", keep our home filled and pantry empty.   What fun we have at our house.

We are so proud of our Caden.  He is kind, compassionate, FUN, devoted, curious, and baby Liyah's very favorite playmate.  We are thanking our lucky stars that he found his way into our family. 

Caden doesn't like cake so this year we improvised and made an ice cream  pyramid with ice cream sandwiches.    The kids helped roll them in sprinkles and topped them with candles.  Handed them out and had nothing to clean up.  SWEEEEEEET!