Ella Sabine Casten Born : June 10, 2010 Diagnosed with SMA Type 2 :  August 12, 2011 Illinois Walk-and-Roll :  June 10, 2012 We were looking ahead to Ella's 2nd birthday and wondering what we could do to celebrate her time thus far with us.  In the midst of it all we found ourselves thinking about how fortunate we are to have Ella in our lives.  She's a tender, bright soul who fills everyone she meets with joy and hope. Families of SMA (FSMA) is sponsoring an "Illinois Walk-and-Roll" fundraiser for the advancement of treatment and cure research for SMA.  This event is taking place on June 10, 2012...Ella's 2nd birthday. "Perfect!" we thought.  What better way to celebrate the life of Ella than to attend the event alongside the lives of all of the kids and families affected by SMA.  What better way to bring people together, raising awareness, raising funds, and raising the possibility of finding treatments and a cure for this disease? ...

We have our newly modified car!! We picked it up from Mobility Works yesterday (Friday) and we are so excited!  I wish I could put into words how happy I feel about being able to take Ella out and about in her power chair.  She will have SO much more independence in this chair and she will be able to explore in ways that she never has before! Of course, this brings on a whole new set of responsibilities...we will have to be with Ella every "step" of the way, making sure she doesn't run into people, go off curbs, knock things over, etc.  Since she's already able to maneuver independently while on our walks, I'm sure it won't take her very long to learn how to get around when we're at other other places. We are so incredibly grateful for all of the generous support that we received to be able to purchase and modify this car!  We NEVER would have been able to do it without you!!!  Every time we get Ella in and out of this car with her power chair, we w...

So here it comes.  This time, however, it arrives with 311 lbs. behind it and a fight in her that speaks of her late Aunt Jules. Ella is sporting her will and independence.  She's testing her parents.  She's being a "stinker". It's wonderful. She deliberately disobeyed me while on our walk today.  She had veered off the sidewalk in her power wheelchair and I told her to get back on the sidewalk (please).  She stopped the machine.  I could see her tiny shoulders slump down as she settled herself into the minuscule chair that sits on the enormous machine.  She was settling in for a fight with Daddy.   I waited.  So did she. So did Henry.  Neighborhood kids and a few adults were delighted to watch the spectacle of an almost 45-year old man and his almost 2-year old daughter begin the dance all parents know and "love".  The dance that pits will against will.  The one that causes blood pressures to rise. ...

Today was Ella's first day back in the pool for aqua therapy since having her g-tube placed.  She had to wait a few weeks before being submerged in the water. Last week we ordered a WaterWay Babies neck ring to assist her while in the pool.  I had seen some other SMA children using them with great success! Well, success we had!  Ella LOVED it!!   She was able to float/swim completely on her own and she had both hands free to play :)   This neck ring has so many benefits...it helps keep her spine straight, it allows her to have independent movement in the water, it allows her to be upright, etc.  We had to put little ankle weights on her so that her feet wouldn't float to the surface, haha :) I just love seeing her this happy...

Wrapped up in her blanket, she is safe and sound.  The world cannot touch her as she lays here, I've found. Her eyes look into yours, they trust and take hold. Wrapped up in her blanket, protected from cold. Wrapped up in her blanket, held closely to me. I give her the motion, a world she can see. Her body lay limp, as I carry her through life. Wrapped up in her blanket, my heart feels the knife. Wrapped up in her blanket, my youngest will stay. Touched so deeply, so strongly, by Type 2 SMA. Her bright light shines, beyond the measure of our own. Wrapped up in her blanket, our Ella is known.   

Music is very powerful.  I've always enjoyed listening to it. I am moved by a variety of genres of music.  It all depends on my mood, the circumstances, etc. Since Ella's diagnosis, I started taking walks.  We've always gone for walks as a family during the spring, summer and fall months (weather permitting), but late last fall, I started taking some walks by myself (but with our dog, Sasa, of course!). What started as just a little "break" turned into therapy.  My walks were getting longer and longer (up to about 5 miles) and became an almost daily ritual (although lately I haven't been able to go as frequently).  I always go at the same time of day (right after dinner) and while I'm gone for the hour or so, Michael bathes all three kids and gets them ready for bed.  I come home just in time to give them each a kiss goodnight. The walking has been so good for so many reasons.  It's exercise (great for Sasa, too!).  I get that little...

As of late, I've had the pleasure of telling people that Ella has been doing pretty well.  I relay to them that the regression path she was on so vigorously seems to have slowed down.  Ever since her new diet was implemented we have indeed seen a plateauing effect.  Ella has been able to use her arms a bit more, keep her head stable, reduce her excessive sweating, and generally seems to have good energy levels.  She has even stood up with the assistance of her AFO's, leg braces, and the loving hands of mommy and daddy beneath her bum. SMA invades the entire body in one way or another as we are unceasingly finding out.  Over the past week Ella has choked on small pieces of food that she has had no problem with in the past.  In fact, her eating of solid foods, albeit in very minuscule amounts, has never caused her any problems... ...until now.  Now she has choked and from that vomited two times in the past week.  There i...

Having three kids under the age of 5 results in an absurd amount of play in the house...in fact, if they are not sleeping or crying, they're playing (even when they're eating they are playing).   The play that happens in our house takes on many forms.  There is the kitchen table play; coloring, play-doh, little pretend people and their little pretend house with their little pretend "things", puzzles, and reading.  Ella spends many hours a day at this table with this play...she enjoys it and loves it when others join her. Then there is the family room and basement play.  Cars and trucks, dolls and stuffed animals.  Tickling and rough-housing, jumping and dancing.  Ella will find herself participating in the more calm type of play in these areas yet enjoys watching the more active adventures. Then there is the entire first floor play.  Our house is designed so that one can make a complete circle going from the family room, through the kitchen, i...

Just a cute video of Ella during bath time tonight...she started singing "Old MacDonald had a Farm" and had a little interruption at around 37 seconds of the video :)  You have to listen closely...

Today started out as one of "those" days... A day where ALL three kids were in bad moods and taking it out on each other.  I tried helping the situation by reminding the kids that today was Wednesday...the day of the week that Gramma comes to babysit.   But no, it didn't help.  It made it worse (I need to listen to Michael more when he tells me not to talk about exciting things too far in advance).  There is a certain little boy (I won't mention any names), who still doesn't quite get the concept of time.  So when he heard that Gramma was coming, he pretty much threw fits all morning because she wasn't here yet.  (Mom, I love you, but seriously...you have to stop being so nice to them all the time!  They love you WAY too much!) So needless to say, it was a rough morning.   But then we got to preschool to drop off Ava (after enduring a car ride of three screaming kids).  After giving Ava a kiss goodbye, I was stoppe...

Whenever Ella is in her wheelchair right before bedtime I always go to the foot of the stairs and have her wheel herself to me.  It's something we've done since she got her chair.  It started out as a way to give her purposeful movement. Now we just do it because we love to.  She eagerly pushes her 7 lb wheelchair toward me with that unmistakable smile streaking across her delicate face; her arms working hard to produce the desired outcome of making those wheels move toward her daddy.  When she arrives at the foot of the stairs she beams at me as we touch noses. Tonight, as I lifted her out of her chair I did the normal repositioning of my hands around her torso.  You see, as you pick up Ella nowadays, you have to be extra careful for a variety of reasons.  Her body is frail, uncontrolled, and awkwardly heavy.  She has her g-tube which we must always be cognizant.  As I reposition my hands I always make sure her head and neck are stable befo...

A year ago. A year ago Ella was 10 months old. It was the first time that we started thinking, "something isn't quite right". I can't believe it's been an entire year since then. I will never forget how I felt during those few months. I wasn't scared. To be honest, I wasn't even all that concerned. I just thought that there was a developmental delay. A delay that she would outgrow. So she couldn't crawl. And she couldn't stand. Or walk. And she was incredibly flexible. But every baby develops at their own rate, right? But still, something was just "off". I remember talking to her pediatrician about it. Ella was classified as having "hypotonia" (poor muscle tone). So we started some physical therapy to see if it would help. We all assumed it would. After about two months, not only was Ella not improving, but it seemed that she was getting worse. Her therapist was concerned ...

SMA is a progressive, degenerative, neuromuscular disease. Progressive. Degenerative. As our family rumbles through the life we now have, confronted daily with SMA alongside all the others issues life hurls at us, we are constantly reminded of the progression and degeneration that surrounds us. Ella's muscles are experiencing degeneration in a progressive way as they are losing function.   The progression we, as her parents, are experiencing is the onslaught of demands, responsibilities, & reminders of the disease that traps our daughter. Each demand, every responsibility, and the constant reminders seem to get progressively more in-depth.  Each one causes our experience to become more cemented in reality...our feet feel wedged in that cement, unable to move.   Where Ella experiences a degeneration in her muscle function, ours is a degeneration of the life we once had.  Each day we feel further and further away from our pre-SMA da...

Spinal Muscular Atrophy is a horrible disease.   It's hard to not focus on the life challenges and struggles that SMA causes.  The disease can be all consuming, occupying close to 100% of our time and energy (both physically and mentally). But what we sometimes forget to focus on, are all of the MANY things that Ella CAN do.  She is an incredibly bright, sensitive and caring little girl. So over the past couple days, Michael and I have been putting together a list.  A list of some of the things that Ella can do.  It's a good reminder for us (and others as well) that while she may be limited in some areas of her life, she excels in many others.   We could have gone on and on forever with our list, as there are SO many things and they were so very easy to come up with.   So for now (at almost 22 months old), here are a *few* things that Ella CAN do (in no particular order)... counts to 9...although she skips 7 and 8 :) recognizes and sa...

Helpless. Both Ella and I felt helpless. I had Ella sitting in a chair and she wanted to play with a plastic baby bottle.  It was given to her and everything around us went on as normal...except... She couldn't lift it to her mouth in order to pretend to be drinking from it.  She couldn't do it. Instead, she cried.  In frustration she let unleashed her cry.  We asked her to use her words and usually she is really good about stopping the crying and telling us what she wants.  Not this time.  Her cry didn't stop. I saw the baby bottle in her hands which were loosely wrapped around it...her elbows bent at a slightly greater than 90 degree angle...her head bowed down as she cried.  I came to her and asked her if she wanted her bottle.  In between sobs she said, "Yes.". I placed my fingers behind her bent elbows and produced a small amount of force against her arms.  This allows her to use what little strength she has to continue...

I'm struggling right now.   The reality of SMA has been fierce the past couple days.  I don't know why, but my mind can't seem to escape the true awfulness of this disease.   Maybe it's because she's growing.  The other day I was carrying her to the bathroom to brush her teeth and I was captured by the sight of the two of us together in the mirror.  She's no longer a little baby.  She'll be two years old in a little over two months.  She should be walking, running, jumping and climbing.  But no.  Instead, I'm carrying her, trying to cradle her in my arms like a newborn.  But she's not a baby.  And looking at ourselves in the mirror made me realize that when I hold her, it looks like something's wrong. Maybe I can't escape the reality because she continues to struggle.  So much. She just keeps regressing!  I thought her regression was supposed to plateau a long time ago and she CONTINUES to get worse!! And s...