I wish I could say Ella is sitting in her diaper only because it's so hot and we are trying to keep her cool. Not the case. She's like this because she has just finished throwing up her latest feed...again. Lindsay and I just looked at each other as Ella let her feed go after an hour of it being finished.  A look of defeat washed over our faces. Ella has not been holding down her feeds very well for quite some time now (weeks).  It follows no rhyme or reason.  Usually once a day (maybe two) out of the four feeds.  We are in contact with several people regarding this matter.  The puzzle is complex and frustrating. The look of defeat on our faces came from the knowledge that we know every bit of nutrition Ella takes in is vital to her...more so than the average person.  Her system is already so compromised by SMA that any loss is significant. I suppose I could go on and on about this one, but really--the look on her face in the picture above ...

We are very excited to announce the re-opening of our store.  We closed several months ago due to the fact that our youngest daughter, who has been diagnosed with Spinal Muscular Atrophy (SMA) Type 2 developed RSV and pneumonia.  She was admitted to the hospital for a week and returned home with many medical machines to help keep her healthy.  We have been spending our time since her hospital release learning how to best use these machines as well as developing a new daily routine for our family.   Ella Sabine Casten Born:  June 10, 2010 Diagnosed with Spinal Muscular Atrophy (SMA) Type 2:  August 12, 2011 As of late, we have also taken a good close look at what we wanted to do with Mama Bracelets.  We love our business.  We decided to keep going with it and renewed our LLC for another year.  We also looked at what our customers were purchasing since we opened and adjusted our product line accordingly.   ...

Ella Sabine Casten Born:  June 10, 2010 Diagnosed with Spinal Muscular Atrophy (SMA) Type 2:  August 12, 2011 Dear Colleagues, My  11 th year teaching in District 205 winds down and I find myself thinking about the many people, seen and unseen, that have reached out to my family in one way or another over the past nine months. My name is Michael Casten.   I teach 4 th Grade at Lincoln School.  My daughter, Ella, was diagnosed with Spinal Muscular Atrophy (SMA) Type 2,  just days before our students started this past school year.  Prior to walking into Lincoln only a handful of people knew of Ella’s condition.  Word spread quickly as people began wondering what they might do in order to show their concern and care. SMA is a progressive, degenerative, terminal disease that has a prevalence rate of every 1 in 6000 live births being affected.  One in 40 people are carriers of the recessive gene responsible for this devast...

She knows how it feels.  To put weight on her feet.  She knows how it feels.  To be vertical.  She knows how it feels.  To let her trunk muscles stretch.  If only for a few seconds. If only for a few seconds  she can experience what you and I feel everyday without us even thinking about it. If only for a few seconds  she can look at the world from a different perspective; a standing perspective. If only for a few seconds  she can gather pride in herself doing what everyone else does. If only for a few seconds . The beautiful thing about photographs is that they capture a few seconds and keep them forever.  They allow us to relish in a moment that hardly existed.  Photographs bring the time needed to look deeply at what is before us, soaking in each aspect of the event; finding fresh nuances not previously noticed. When I saw the picture above I thought she had been standing for longer than she really was.  I loo...

The more things change the more they change. I wish I could use the more common form of that saying; the one we all know and use, "The more things change, the more they stay the same.", but it simply doesn't apply here. The past four nights have been filled with endless thoughts of what we are now facing in terms of Ella and SMA.  The past four nights have found us awake several times each night caring for her, even while taking shifts.  The past four nights have brought to us the reality of what it means for a loved one to have a degenerative, progressive, terminal disease. Our multi-disciplinary clinic brought with it a host of changes.  These changes are necessary.  The nature of the disease is causing our little girl to require more intense interventions.  Of course, this means that whatever "routine" we had going up until that point changes.   The way we feed her is changing.  The manner in which we have been bathing her has changed....

Today is the LAST DAY to order an  "ELLAwareness for SMA" t-shirt. If you would like to purchase an "ELLAwareness for SMA" t-shirt, designed by the talented 'Gibson Design', to help raise awareness about SMA please know that we will be placing the one-time order on Monday, May 21, 2012. If you are attending the Walk-and -Roll Event with us on June 10, 2012 your t-shirt will be free!  We simply need to know the size(s) for each of your "walkers". If you are unable to attend the event and would like a t-shirt please e-mail us your size(s) and mailing address to:   ellawareness@gmail.com (Click here to open your e-mail program) Payment can be made via PayPal using the same e-mail address as the recipient: (ellawareness@gmail.com). With gratitude, The Casten Family

Yesterday we took Ella to her first multidisciplinary SMA clinic at Children's Memorial Hospital. We've done this type of clinic once before at Shriner's Hospital last fall. In a nutshell, Ella is seen by many (8-10) doctors, nurses, therapists and specialists all in one visit.  Her "team" is able to talk with one another while examining Ella.   It's a lot to take in (overwhelming would probably be a better word), but nice to see everyone at once and have the team members be able to bounce ideas off of each other. These were the outcomes of Ella's appointment: Ella is doing very well compared to how she was back in January when she first saw Dr. Kuntz (her neurologist).  It seems that her regression has plateaued (yay!!) and that she has even gained some strength back that she had lost (WOW!).  We owe this in large part to her new amino acid-based diet that she started a couple months ago.  The base of this diet is Vivonex Pediatric, but we wil...

We are very excited that we will be ordering "ELLAwareness for SMA" t-shirts for the upcoming FSMA Walk and Roll on June 10th!! Thanks to the incredible design talents of Gibson Design, we are proud to present the official "ELLAwareness" logo: The t-shirts will be available in adult (S-3XL), youth (XS-XL) and toddler (2T-4T) sizes as shown below (all shirts will be purple): Adult sizes, front view Adult sizes, back view Youth/Toddler sizes, front view (nothing will be on the back) However, due to the proximity of the event, we have to place the order by this upcoming Monday (May 21st)!   This means that anyone who would like a t-shirt has to let us know by THIS SUNDAY, MAY 20th !!!! Thanks to a VERY generous donation, everyone who attends the FSMA Walk and Roll for team "ELLAwareness for SMA" will receive a FREE t-shirt (but we still need to know your size before we can order)! We are happy to order shirts for anyone el...

UPDATE:  THE PHOTOGRAPHER CONTACTED US--YAY! Back in early winter, we received an incredibly generous gift from an anonymous donor.   A family photography session with a professional photographer.   We received a letter from this photographer explaining the details of the gift. Since this is not something we typically do (or have EVER done), we wanted to make sure to use this photography session at an ideal time.  We were thinking spring or summer. We put the photographer's note away, knowing we'd be taking it out again in the near future. Which brings us to now.  We have searched high and low for the note from the photographer, and we have been unable to relocate it.  We're thinking it got mixed up with medical documents/paperwork somewhere. This puts us in an awkward position.  Obviously the donor wishes to be anonymous, and we completely respect that.  At the same time, we absolutely want to use this incredible gift (as I'm sur...

Every year in May, I end up taking the kids to Brookfield Zoo.  And every year in May, I swear that I will never again take the kids to Brookfield Zoo in May. The month of May is BY FAR the busiest time of year for school field trips.  ESPECIALLY at the zoo.  It's always a mad sea of people, trying to navigate your way through while keeping an eye on the little ones. Well, we woke up this morning and Ella's aqua therapy had been cancelled.  I saw that the weather forecast was 82 and sunny.  It was the perfect combination for a morning at the zoo.  So I thought, "What the heck, it's not THAT bad when it's crowded.  Let's go!" Sigh. Once we got there, it literally took us 30 minutes to get from our car to the inside gates (and we parked right in front in a handicapped spot!). Before we left, I had to do a little planning to figure out the best way to walk around the zoo, on my own, with all three kids (one in a power wheelchair).  Ava and ...

We have had a very nice Mother's Day weekend. It started for me yesterday with an INCREDIBLE day at the spa (thank you, Ella's Angels!!!).  I had a day of rest and relaxation, which included a mani/pedi, swedish massage, and hair cut & style (with a delicious lunch in between)!  It was pure bliss to say the least.  I came home feeling utterly refreshed and rejuvenated.  It was just what I needed :) This morning we enjoyed the early church service and then went off to The Morton Arboretum for a picnic with my parents, sister and brother-in-law.  It was a beautiful day with beautiful company :) Later today, we took a nice walk as a family and when we came home we decided to continue to enjoy this beautiful weather out on our deck.  Ava and Henry were playing in the yard, while Ella, Michael and I were each sitting on our own chair on the deck (Ella was just about finished with her late afternoon tube-feed). After a few moments, Ella decided ...