Back into the depths of sleep deprived nights we go... Since the diagnosis of SMA we've often heard "horror stories" regarding overnight nursing which was one reason we didn't pursue that option earlier.  However, the lack of sleep over the years has taken its toll...so recently we decided to explore the night nursing option.   We have gone 8 full years without a full night's sleep.  Ever since Ava was born in 2007 we have had a baby in the house keeping us up---and now SMA keeps us up.  Eight long, tired years. Through much paperwork and some red tape we finally received notice that Ella qualified for overnight nursing care.  Once it started we could hardly believe the difference we felt after just a few nights sleeping a full 8 hours...uninterrupted.  Wow! Then...the nurse began taking unauthorized nights off followed by a stretch of no-shows.  It was hard enough not having the nurse show up---but she didn't notify the agency or us abou...

      The mailbox brought a Christmas card to our house.  It came from another "SMA Family".  Much like our family there are three kids and the youngest has SMA.      I admired the beautiful pictures of the children, read the words written, and shared it with Lindsay.  Later I returned to the card and looked more closely at the pictures.  Beautiful photography captured the three children sitting on the ground; the two older ones on either side of the younger.  I noticed how the little one was nestled lovingly in-between the two.  To an unfamiliar eye one would never know that the baby of the family had a neuro-muscular disease which can compromise the ability to sit unassisted.  I knew though.      I knew and I was amazed at how the siblings were positioned to provide sitting-support for their younger sibling.  They all "leaned" on one another in a way that would depict that all three children had ...

When Ava was first born, Lindsay and I made the decision for Lindsay to be a stay-at-home mom.  Of course this meant we'd have to find a way to make ends meet with one salary rather than two. We were committed and took the plunge. Every night, for close to nine months, I would wake up at 3am, without fail--no alarm clock--just woke up.  I would find my way downstairs to the basement office.  I'd wake the computer and open up our budgeting program.  I would crunch numbers, create and delete categories, move budgeted money around, research ways to save a buck, etc.  Each night I got closer to creating a scenario that would allow us to operate comfortably on my one teacher's salary.   Once the budget was in place and proved its worth, I no longer had to wake up at 3am.  Of course, being a habit now I still occassionaly woke up at 3am...but over time that dissipated. Over the next few years we had two more children, Henry and Ella.  The nigh...

A heavy sigh sets in as I stare at this blank screen...soon to be filled with thoughts.  The past three months have brought much to our household.  Two major surgeries, two new jobs, a new volunteer position, and the start of a new school year. Ella's surgery was long; her recovery even longer.  We were diverted from our expectation of a 4-6 week recovery and instead found ourselves with a 12-week recovery...and it's not quite over.  During surgery her left femur broke, leaving a gap between the top portion of the femur and the bottom portion of the head of the femur.  This gap required extra time to fill in with new bone.  It also happened to be the side where hip socket reconstruction took place.  It's slow going yet she's getting better each day. Lindsay had foot surgery as an old gymnastics injury resurfaced requiring bone shaving, bone cutting, and plate insertion.  Her surgery went well although the pain she has been experiencing has...

Slowly but surely. Ella has been completely flat, 100% of the time, for the past 5 1/2 weeks.  Today she had another follow-up appointment with her orthopedic surgeon, Dr. Grayhack.  He said her bones still have a ways to go in terms of healing (probably another 6 weeks until almost fully healed), but we can start having her sit up very gradually over the next two weeks!  Yay!!! Michael and I have discussed when Ella should start kindergarten and we've decided that we are not going to have Ella start this Wednesday with the other kids.  Caring for Ella while she's transitioning to sitting is quite involved.  While the staff at Prairie Elementary are ready, willing and certainly capable of caring for Ella, we feel with her still being in diapers, having continuous  feeds (instead of quick bolus feeds throughout the day), and knowing that moving her is still precarious at best, we feel that at this point it's be...

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...

In the middle of May, we were so fortunate to have Ella's Make-A-Wish trip...a Disney Cruise (aboard the Disney Dream) to the Bahamas! It was a magical trip, to say the least, and we all had an incredible time!!!  Make-A-Wish took care of everything, literally everything , from transportation to the airport, to money for souvenirs.  We were treated like royalty the entire time we were there!  The cruise ship was like a palace on water, and luckily none of us had any issues of sea sickness :)  The food was amazing, as was the service.  We enjoyed time in the pools, on the beach, and we even got to swim with a dolphin! We are so grateful for the Make-A-Wish organization for providing us with the trip of a lifetime!!! But enough talk...pictures are worth a thousand words :) At the airport Ready to go! Henry at the controls The bus to take us to the port Inside the Disney Dream! Our stateroom Our stateroom Our pr...