Every parent knows it.  You have a newborn baby and suddenly sleep takes on a whole new meaning.   Babies wake up several times during the night for a variety of reasons; hunger, being wet, colic, figuring out the difference between night and day, etc..  As the parents we wake up with them, it's almost like a radar system...kind of neat how mother nature has built that into us. This waking throughout the night lasts for a few months.  Parents become increasingly exhausted because of it being coupled with the stressors of the daily waking life; work, house, family, etc.. It's often quite obvious when a person has a newborn in the house.  They just look tired from the lack of sleep.  They get through it though.  They struggle and find their way through those months until finally the baby begins sleeping through the night.  Slowly but surely the parents' sleep pattern returns to normal and things move along. For us we began this sleep d...

Dr. Brian Kaspar The news that Dr. Kaspar's SMA research has been granted FDA approval to move forward with human clinical trials spread rapidly through the SMA Community and naturally found itself among the general public through Facebook, Twitter, blogs, emails, texts, phone calls, and personal encounters. To say that this news is big would be a gross understatement.  It's more than big...much more. Dr. Kaspar and his staff are obviously major players in this development.  But there are more...many more.  From the very first person ever diagnosed with SMA to the latest; from the first fundraiser to the most recent.  The efforts, trials, sufferings, and triumphs of millions of people have brought forth this moment.  A moment of  increased hope for those afflicted with SMA. I am grateful, a s a parent of a child with SMA,  for the goodness found in people.  From that goodness springs the seeds of hope.  And from that hope the seeds...

The SMA Community is tight-knit; we celebrate our accomplishments,  mourn our losses, lend an empathetic ear, and problem-solve with and for one another.  We laugh with, cry with and care for each other.  We may not always agree.  We may not always put our best foot forward.  We do however, rely on each other as we share the common thread of SMA. The overwhelming need to "save" your child(ren) when they are in danger, any danger, is one part of parenthood that comes naturally.  It's a powerful need, riddled with emotions, driven by love, and pursued by a sheer will for the survival of your child(ren).   We can recall having a conversation with each other, just hours after we knew Ella had SMA.  We were sitting at the bottom of our stairs on the floor.  Ava & Henry were with Gramma & Grandpa since we had an appointment that day for Ella with a neurologist. We sat with Ella as she struggled to move in a way that ...

We are really excited to announce that the first fundraiser to help us provide Ella with a modified house will be hosted by Skinny Sweet Frozen Yogurt in Glen Ellyn, IL (see address below). From 12:00 pm - 9:00 pm on Saturday, October 12th Skinny Sweet will donate a generous 20% of all sales when customers mention "Ella Casten" while purchasing their delicious treats. We visited Skinny Sweet twice over the summer.  The place itself is a treat to step into.  The vibrant colors, contemporary decor, and smiling faces all bring the incredibly delicious experience full circle.  It's set up as a self-serve venue.  You only pay for the weight of what you decide is in your bowl; and the choices are endless! The frozen yogurt flavors can be mixed and matched any way you desire.  From there, you are presented with a vast array of fresh fruits, classic toppings, and mouth-watering candies that compliment the creamy yogurt.    K...

Within the past month, several people have asked me how I'm doing with ED. And by ED, I mean "eating disorder".   For those of you who are new to this blog, I struggled with an eating disorder for a while after Ella was diagnosed with SMA.  It got to the point where my health was deteriorating enough that I needed to be admitted to an intensive inpatient rehabilitation hospital for a month last summer. Severely limiting what food went into my body was a way for me to take control of something.  Controlling something when I felt so out of control with Ella's disease. Anyway, I've been out of treatment for over a year now. It's been a roller-coaster of a recovery process, that's for sure. But I can honestly say that I am the closest to "recovery" than I've ever been since I walked out of the hospital. Yes, I still struggle.  Daily.  While I was in the hospital I was told that I will probably never recover completely , as an eating...

We're excited to announce some BIG changes for our company, Mama Bracelets! What started as a very small company making nursing reminder bracelets, we've evolved into hand-stamped jewelry, which then led us to make support & fundraising products (supporting autism, lung cancer, and of course, SMA).   We are now pleased to introduce our "ellaWEAR Fashion Jewelry" collections, which include necklaces, bracelets, earrings, rings and pendants!  Many of these products are made from high quality sterling silver. In addition to the new collections, which will continue to grow and evolve, Mama Bracelets is expanding ways for our customers to purchase our jewelry products. You can still shop online anytime at www.mamabracelets.com , however we are now implementing our "ellaWEAR P arty"…a social gathering to view and/or purchase jewelry, in which the host of the  ellaWEAR  Party will receive FREE Mama Bracelets jewelry after the event (*se...

It's time. We thought we would have more time, but we don't.  For 2+ years we have struggled with this...now it's time to share our struggle with you and how we have come to a decision to act. We knew that our current house, as it stands, would not work for Ella's long-term needs.  We have reached the point where we need to start making some permanent changes.  If we make any permanent "handicap accessible" changes, we will have to stay in this house, as we would not be able to afford these types of modifications more than once. We have talked and met with a bunch of people...building contractors, elevator contractors, realtors, interior designers, and architects to name a few. These are the things that would need to be done to our current house to make it work for Ella in terms of her independence. 1. Have a permanent ramp put in at the front door. We currently use two portable ramps for Ella to get in and out of the house multiple times ea...

A few weeks ago, Ella started complaining that her right foot hurt.  We think she might have bent it in a funny way when she was being lowered to the ground. We didn't think much of it, after all, we all have little aches and pains now and then. But after about two weeks of Ella complaining (mostly if she had her AFO braces off), we decided to have it x-rayed. Sure enough, she has a small hairline fracture in her foot :( Luckily it's nothing major and Ella won't even need a cast.  Continuing to wear her AFOs will actually help to stabilize her foot, reducing most of her discomfort while she's awake. The orthopedic doctor that we saw told us that this is definitely not uncommon for a child with SMA.  Because Ella is not weight bearing, she has less bone density, therefore making it easier for her to break her bones.  Ugh.  Luckily it is a very minor fracture and she doesn't have any restrictions and can continue all of her therapies as long as sh...