It's become a family favorite. The house is filled with screams and squeals of delight when it's mentioned. According to Henry, the drive is "soooo" long.  I guess to a 5 year-old it seems long, especially when he knows what awaits him. Each time we visit "Skinny Sweet" a new masterpiece is created by our children...and us!  The possibilities seem endless, the creativity is delicious, and the atmosphere compliments the good feelings we have while we're there. If you have yet to experience "Skinny Sweet Frozen Yogurt" (FROYO) you are long overdue. Not only are the owners and staff friendly and attentive, they are generous.   On October 12th, 2013 (from 12-9pm) Skinny Sweet will donate 20% of every sale to our "Ella Casten House Fund", which is our fundraising cause designed to help provide an accessible house for Ella.  The customer only need mention her name and the donation will occur. C'mon out if you live in ...

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...