The Odd Life....

We took our children to see The Odd Life of Timothy Green.  I did not understand before we went how much this would be OUR story.  Our children too are "something unexpected, our little miracles".  We got a great laugh out of Timothy asking the other children, "So you all came from your mother's bellies?  How was that?"  There was plenty to make us smile.

There was much to make us brave.  You see, Timothy has legs that are different.  At first his parents felt that different was something to be ashamed of and to hide.  Thankfully, he teaches all around him that different is just, well,  different.  By the middle of the movie Jaeya was begging for us to buy it.  She fully grasped the message that our bodies don't make us who we are and what we can give.  Jaeya's body is very different.

We clearly saw Ammon like qualities in little Timothy as he raised his hands in the air to breathe in the middle of a soccer game.  While it was "definitely not normal" it was still a very good thing.

But as is true life, there was so much to make us cry.  Sitting next to Meisyn and holding her hand, I gasped as little Timonthy's leaves started to change.  His literal autumn was coming.  Just as I have been dreading ours.  I quickly guessed what was to happen and it brought such sorrow to my heart anticipating the end.  Meisyn would pat my hand assurring me that it would be okay.  As we saw where Timothy gifted all his leaves I wondered where Meisyn would gift hers?  Ammon?  While those leaves couldn't be pasted back onto the trees from which they fell, they could be touched and treasured as the timeless influence of brave Timothy.

http://disney.go.com/the-odd-life-of-timothy-green/

Shaolan Turns 11...

Forever our sweet Shaolan.  She came to us in a round about way.  We weren't looking for her but she made sure we knew that she was ours.  Never a day goes by that we don't count our blessings that she is an Ellison.  She is growing up so quickly.  We love you Lan Lan.  You have come from an incredibly shy toddler to a confident and crazy funny tweener.  If we hadn't witnessed the transformation we would have never believed it.

Falling....

Typically autumn has been my favorite time of year.  The visual change in the living preparing for winter slumber, the crispness of the air cooling my cheeks, the coming of early dark, all give me comfort and make me want to burrow in and create of place of coziness.

Not this year.  As each leaf changes its color, in the garden of serenity I have planted and nurtured through the late frosts of spring and the blazing desert heat,  I am filled with panic. I have an overwhelming desire to collect each leaf and blossom that falls  and return it to its perch.   I am not ready for winter.  In place of the joy and feeling of abundance I usually feel this time of year, I feel dread.  I am not ready for winter.  Even with the knowledge that...spring WILL come...the cycle of life will continue...joy will return.  I am not ready for winter.

Why??  Why this overwhelming meloncholy?  Perhaps it is a symbol of my tremendous struggle with Meisyn's condition.  I am not ready for her body's winter.  I am not ready for her earthly slumber, for the coldness of her cheeks, for the darkness of the huge hole that will nearly collapse my heart.

I am not ready for the princess crowns that will be exchanged for angel wings.

 

Its so much for me to carry.  I thought I had worked through all this conflict as I traveled the grieving process for Ammon's path.  But, I clearly see I am not ready for his quirky, love filled soul to leave me either.  I am not ready for the storms that must preceed my rainbows.  I am not ready for winter.

The other day huge rain clouds gathered and the thunder roared and shook the house.  Meisyn shrieked out with anxiety.  Ammon quickly comforted, "Otay Meisyn. Wainbow comin'".  Where is my faith that the rainbows ARE coming?  All I can feel is the foreboding of the devastating storm.

I follow another mother's blog who travels the same broken road that I am on.  I will borrow from a post she shared this week. I am trying to get to this point but I am having such a struggle.

"Why would I want to allow the enemy to steal joy from today through my fears of tomorrow? God will already be there when and IF I arrive! If I carry tomorrow's burden of pain today, will it make the burden lighter tomorrow? Obviously not! But Christ will be there tomorrow to help me carry it! So, for today.... I will choose JOY instead! "

Stefani

SHE WAS HERE

I feel sad. Yesterday I was talking to a woman who just lost her beloved 20 year old niece. The child was never able to walk or talk. She had epilepsy too. A respiratory illness took this child. As you can imagine with what Ammie and Meisyn face this really haunts me.

Speaking with aunt she shared how much joy this child has brought into their lives and that while they should be glad that she is no longer suffering, they will miss her so very, very much. Today is the funeral.

While I was out this morning running errands I overhead a group of women I didn't know who were talking about this.

Woman 1: Oh such a blessing really. What a pitiful life for this child.
 Woman 2: Yes a blessing. Such a burden for her family.

If I could actually talk about Ammon and Meisyn without sobbing I would have shared what a bright star this child was in the lives of those who knew her. What a gift she gave to all those who shared her life. To this new angel and her family I give my honor and share my sorrow. This child mattered. This life changed the world in such a blessed way. SHE WAS HERE.

http://www.youtube.com/watch?v=i41qWJ6QjPI

Iron County Fair time

While the fair is just TOO EXPENSIVE for a large family to do everything they want, we did get to play and have a fun time.  Then it was off to Auntie Kim-michelle and Uncle Scott's house for the Labor Day BBQ.

 

 

 

 

Meisyn Medical Status

We had our big evaluations with the neuromuscular specialist.

Meisyn was her usual delightful self. It was just Mama and Meisyn and we had alot of fun. We still have many things we want to do. I had a chuckle at my concerns over the darling dimple in Meisyn's left cheek. No worries. She is just getting FAT! She has gained another 2 pounds in the past 7 weeks. This explains the fatigue too. She is not used to having to drag all this weight around and it tuckers her out sometimes. She tips the scales at a whopping 33 lbs now. WAHOO. The specialists would like to see her at the 10% level on the growth chart. We will have a long way to go to get there.

Severe. I have learned through the years that hearing this from a doctor is never good. Meisyn still has many tests to pin down exactly what is going on with her but she has too many unique things happening that suggest she might have a nerve disease AND the muscular disease. We won't know for a while yet but it doesn't really matter as both end the same way. They are both on the same road but we aren't sure what exit we will be getting off. I asked if it is possible that Meisyn has just a nerve disease. It is possible though unlikely and the end result is the same....and whatever it turns out she has, she is a severe case already.

 

There will be overall deterioraton and weakness with Meisyn's body. The flu or a respiratory illness is
going to be her nemeis by overwhelming her respiratory system. She is considered medically fragile and if she goes more than 12 hours without food or drink she needs to be admitted to the hospital and be administered amino acids directly into her muscles. The pulmonologist will be seen next and she wll get nightly oxygen set up for nighttime.

The specialist would like us to consider again the surgery for her scoliosis as that bending spine will continue to limit her lung capacity. Shriners prefers to keep her comfortable and not do the surgery, let her enjoy the time that she has. I don't know yet what we will do.

We will make every day count. We have more princess dresses to buy. Today she told me she needed a crown. But of course! She told me on the ride home that she loves America because she can wear dresses and have long hair. The simple dreams fulfilled of pure hearted little girl.

So Behind...so very, very behind

How about we catch up in pictures.  You can guess what is going on!

Then wheelchair fitting....scheduled for pickup Nov 12, 2012

School starts...Taisha leaves the nest and we MISS HER!

Gotta get ready for flu season

 

Amd Aaron breaks his wrist.  Goodbye football season after one game....

 

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.

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

Neurology HomeFaculty & StaffRussell Butterfield, MD, PhD

Instructor, Departments of Neurology and Pediatrics

Education

• 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)
Biography
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.

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.