Three more weeks. Three more weeks that Ella has to stay lying flat, 100% of the time, with her brace on most of the time. Why?? During surgery, when the bracket was being placed into the femur head (on the left side) the bone cracked.  The surgeon had to move the bracket to a different spot in the bone.  The break resulted in a space between the femur and head of the femur.  This space now needs to build bone.  Hence, we need for her to lie flat for a longer period of time. At the end of the surgery we were made aware of the cracked bone, and we weren't surprised by that news.  Simple fact...kids with SMA have more brittle bones for the mere reason that maximum bone density isn't achieved due to lack of gravity and pressure from not standing or walking.  Just another way they are more vulnerable than their same-aged peers.   And while were were not surprised by the cracked bone we were surprised that she must remain in the same po...

"My head grew heavy and my sight grew dim.  I had to stop for the night."  The  Eagles; "Hotel California" (1976)      We've researched why it is that pain seems to amplify itself overnight...there doesn't seem to be a definitive answer.  Some speak  of the fact that we tend to breathe inhale the carbon dioxide we expel while we exhale thereby increasing the size of cells in the body...which can affect pain receptor behaviors.  Others talk about the fact that one is alone, in the dark, while everything is still and quiet...the focus easily shifts to the pain which is the only stimuli.  Still others postulate that daily activity tires the body out, thereby making pain more pronounced during the night.  Theories abound.      Whatever the reason it is a reality in our world these days (or nights to be exact).  Ella's pain is exacerbated overnight. Of the 8 nights we've been home we have ...

Ways to help Ella & our family can be found at the end of this blog post. On the way to the hospital last Thursday morning, in the wee hour of 5:00 am, the three of us (Mommy, Daddy, & Ella) sang along with Taylor Swift's "Out of the Woods"...it has become a theme song for us this summer...especially the refrain, "Are we out of the woods (repeat 4x)...are we in the clear (repeat 4x)?" Thursday dragged on for an eternity, butterflies swarming in our bellies, gruesome thoughts circulating through our heads, anticipation of the unknown.  She came through like the champ she is...she did so very well. Thursday evening through Monday morning proved to be a roller coaster of physical, emotional, and spiritual ups-and-downs.  Bi-lateral hip surgery with (left-side) socket reconstruction is a major surgery for anyone let alone such a little girl.  The pain she experienced, as we could tell from her resonating screams, yelps, and cries, must have been h...

She was wheeled away to surgery in silence.  She didn't bat an eyelash as they took her away.  Mom and Dad, on the other hand, fought back the tears and tried to quell the butterflies in their stomachs. A texting and telephone system is in place at Lurie's so parents can get regular updates throughout the surgery.  Half-way through we got a call that she was doing well.  Blood loss at a minimum and the left leg completed.  Right leg about to get started. We sat with our Pastor and had oatmeal and coffee.  We talked.  We discussed.  We prayed.  Grandma and Grandpa joined us at lunchtime.  Another call was made from us to the operating room and they were just finishing up the left leg.  We had an hour to go before we were out of the woods...in the clear.  We took that hour to have lunch despite the butterflies dancing in our stomachs.  Good conversation ensued.   Next to the impressive dining area is one o...

Surgery is set for Thursday, July 9, 2015.  As this is written it is Sunday, July 5, 2015. We've worked out plans for Ava, Henry and Sasa.  We're still working on Doublestuff (the cat...that should be no problem, though). We've sat the kids down and explained the upcoming situation; making it as positive as we could. While the thought of a 7-hour surgery on Ella scares us immensely, we know we must rely on God and each other to walk through this time.  We also know that we rely on others a well.  Prayers, cards, visits, and encouragement have always been so abundant when times are hard.  This time, however, will be especially difficult simply because of pain, immobility, and uncertainty. While pride often hinders us in asking for help we know we must set it aside for now and simply ask. Whatever way feels best to you we are asking for some help.  Be it prayers, positive thoughts, a phone call or card, a visit at the hospital or our home, a pla...

One is just leaving elementary school; the other is just entering. One is a big sister; the other is a little sister. One fights to help find treatments or a cure for SMA; the other fights to survive the effects of SMA.  Yet they really don't know one another.  Until just recently. Two years ago a young girl entered my 4th grade classroom.  She was (and is) full of life, energy, and goodwill.  She has a strong personality...knowing what she wants, going forward with her plans, and lets nothing stand in her way.  She's determined, she's straight-forward, she's big-hearted. In many ways since I've known her she has supported Ella's fight against SMA.  She has had lemonade stands, made cards for Ella, and asked about her...genuinely wanting to know how she is faring.  Her name is Hannah. I received an email from her mother asking if it would be all right if Hannah did something for Ella.  Hannah's plan was to have her 11th birthday p...

One of the criteria for the diagnosis of SMA Type 2 is that the patient has reached the milestone of sitting unassisted.  Ella fits that criteria well.  In fact, almost her entire day is spent sitting, either independently or strapped in a wheelchair. One of the consequences of SMA is, of course, the atrophy and weakening of muscles.  When you combine muscle atrophy with non-weight bearing a host of problems can and do occur.  One of those problems has to do with the hips. The weak muscles cannot hold the hips in the proper place and over time they begin to dislocate. We've been keeping an eye on them alongside Ella's orthopedic surgeon for the past year now.   Historically speaking kids with SMA Type 2 wouldn't have had hip surgery for the simple reason that if there was no pain associated with the dislocation the call for surgery was unwarranted.  Doctors simply "kept an eye on them".   So what's changed?  Survival. Kids with Typ...