"My swim shoes are too small, Daddy.  I don't want to wear them today." "Look, I can lie down all by myself!" "I don't know if I really want a 'Happy Meal' toy." "Mommy, can you play Taylor Swift?" A few of the quotes by Ella.  She's growing...she's beginning to lose the "baby-face" and take on the beauty she inherited from her mother.  Her eyes are beginning to tell the story of her life and her smile is reflecting the joy she feels through the love that surrounds her.  Her sense of humor is shyly poking its funny little head from under the the veil that hid it as she delights in "big-kid" humor with Ava and Henry. Along with her mental growth she brings a physical growth as well.  She is becoming heavier while at the same time she continues to lose any ability she once had to "help" as we carry her.  We've adjusted several positioning techniques in order to accommodate for ch...

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...