We once again embark on a path with our Ella that keeps me standing in contemplative wonder.  She has kept her food where it belongs for a good month now.  She hasn't, however, gained any weight. Her nutritionist and Lindsay sat down this week and put together a plan.  We have to change her feeding routine in an attempt to get her to eat more food orally.  Within the past month she has shown in increased interest in table food...the plan is to modify her schedule of feeding tube feeds to allow her to be more hungry during the day and in turn, we hope, she will take more food by mouth. Worth a try anyway. Contemplative wonder. I routinely find myself contemplating deeply about Ella.  I contemplate about her disease.  I contemplate about her fate.  I contemplate about what's happening inside of her body.  I contemplate about what it must be like to be her.  I contemplate about what I can do to help our little girl.  I co...

Today I took Ella to pick up two new braces that have been custom made for her...her TLSO ( Thoracic Lumbar Sacral Orthotic)  and her KAFOs (Knee Ankle Foot Orthotics). The TLSO is a back brace that will help to keep her spine in a straight position, as she is already developing scoliosis.  We will ease her into wearing it, as it is a little bulky and will take some getting used to.  But in about 10 days, she will be wearing it for most of her waking hours. The KAFOs are leg braces to help her with standing.  Once they are on, the knees can lock, providing her with the extra support she needs to bear weight.  She still bends at the hips very easily, so it helps if she is up against a wall (we can pull a small table up to her there).   Below are some pictures showing what Ella's posture is like with and without the TLSO as well as a couple pictures of her standing with the KAFOs... Putting the TLSO on for the first time It fits! In h...

The three of them used to fit so easily into a picture.  We could sit them side by side and still get the surrounding items in the picture if we wanted to.   They're getting bigger; they're getting taller; they're getting heavier; they're doing what kids do so naturally...they're growing. While this is a welcomed phenomenon as we fully expected the children we had to grow, we didn't plan for one of them to require specialized equipment, let alone, specialized living arrangements.   We began our child rearing days with the idea that our current house would act as a stepping stone to a larger house that could accommodate the three children we planned on having.   After Henry was born we were beginning to realize that maybe we might have to stay in this house, what with the economy the way it was heading and the fact that there was only one income paying the bills.  We did, however, keep it in the backs of our minds that we might still move....

She ponders her environment. She seeks out meaning from what she cannot do. She watches other kids as they run.  As they jump.  As they play...free in their bodies to fly through space on monkey bars.  Free in their bodies to jump from heights that exhilarate them.  Free in their bodies to pull, push, slide, and maneuver themselves up, through, down, and around the equipment. I felt self-conscious for her. I felt a bit awkward for her.   I felt alone in a large crowd of parents and their kids. We found our way over to the baby swings located in the middle of the large playground.  Once Ella spied the swings she ramped up her power wheelchair to full speed in the wood chips and found herself there.  At last.  Her place... Her place, where she can feel her body as free from gravity for moments at a time.   Her place, where she can experience the heights that often elude her; finding exhilaration in the experience. ...

I know some of you have been curious about how my recovery with the eating disorder (a.k.a. ED) has been going.   I think the best way to put it is to say...it's been a process.   I've been out of treatment for about 6 weeks now and there have been many ups and downs.  And then some more ups and downs.   Since being discharged from the eating disorder program at Linden Oaks, I've been seeing both a dietitian and therapist weekly.  At one of my therapy sessions, my therapist told me that it is going to be very difficult for me to recover from my eating disorder. Huh? Yup. And here's why...while ED is considered a "life-threatening" disorder, unfortunately there are many positive aspects that make it so challenging to break free.  I know what you're probably thinking...How can starving yourself have ANY positive aspects??? Well, here are the conclusions that I (along with my treatment team) have come up with (it's important to determine the...

Ella can be very shy.  Like any two-year old she likes to know the people in her life.   Over the course of the summer we have been in contact with a non-profit organization called, "Normal Moments".   This is a family based business run in Naperville that finds volunteers to assist families in need. The founder of Normal Moments is a mother.  Her daughter battled cancer for a few years and in that time their family received an abundance of help from family, friends, and the community.  In particular there was a friend named David.  He was the type of person who would be at their doorstep at the drop of a hat.  He did everything for them from lending a sympathetic ear while reserving all judgements to watching their house and pets.  He was instrumental in their survival during the hardest times of their lives...and he was always, always there for them. Sadly, the daughter passed away from the cancer.  Her mother decided t...

Ella Sabine Casten August 12, 2012 Diagnosed with SMA Type 2 (August 12, 2011) We looked at each other and said, "Now what do we do?" "Summer of 2011" Today, August 12, 2012, marks the one year anniversary of Ella's diagnosis of Spinal Muscular Atrophy Type 2.  A progressive, degenerative, neuromuscular, terminal disease.   No treatments. No cure. The past year has brought with it much--to say the least.  To look back over the past 365 days and nights is difficult yet necessary.  It promotes growth and helps us to embrace healing. There are so many aspects of our lives that changed in light of the SMA diagnosis.  Where to begin?  The one place that holds all of the answers... God.   From the moment we knew that Ella had this disease--to this very day--we have turned to and away from God.  Our faith has been shaken.  At times we fearfully and humbly approach our Creator in search of comfort; answers; guidance. ...

Tonight (Saturday, 8.11.12) around the world, people will be lighting candles in honor of all the SMA angels and warriors out there.   If you are able, please light a candle at 8:00 pm in honor of Ella and all of the other children affected by SMA.   And if you are up to it, feel free to take a picture and either tag us in it on Facebook or email it to us so we can show Ella all of the support :)

There's facts. There's statistics. There information. Then, there's more. SMA Awareness Month has been a wonderful influx of facts, statistics and information.  All seeking to raise awareness, increase knowledge, and hopefully shed light about SMA to a part of the human population that has never heard of the disease.   Ultimately, the pursuit for a treatment and/or cure lies at the root of it all. I woke early this morning with Ella, as per usual.  She's somewhat of a "slow waker" and likes to sit for a few minutes holding hands, "charging", or just being silent in the morning light.  Today we went through our morning ritual and my day started. When I logged onto Facebook I read that a young child with SMA had passed away.  The child had contracted an infection and within a week had multiple-organ failure.  The child now rests peacefully as the parents try to somehow come to grips with it all. SMA.  It weakens a body to the point of...

This Sunday (8.12.12) will mark one year since Ella's diagnosis of Spinal Muscular Atrophy, type 2.   "Ella's Corner" was originally created to inform family and friends of Ella's progress, but it has become so much more! In under a year, we have had over 99,000 pageviews!   Our goal is to hit 100,000 pageviews by midnight on Sunday (100,000 in one year)!!   Please share Ella's blog with anyone you see fit.  Spreading awareness creates knowledge, which can help lead to a cure! Thank you so much for reading!!

The fact that SMA does not affect an individual's intelligence or cognition fills us with such gratitude.  Ella is bright.  She's funny. She's there. She interacts with Ava and Henry, she finds humor in situations, she plays make-believe.  She knows what she likes and what she doesn't like.  She is aware of her environment and all it has to offer. She is also becoming aware of her condition. Lately Ella has been asking to do things that she physically cannot do.   She wants to stand.  She wants to walk.  She wants to run.  She wants to jump... ...by herself. She has been more contemplative lately when she sees others doing these things and it's sometimes hard to know exactly what she's thinking.   Lindsay and I sat at her Early Intervention meeting this week and among many other goals set for her by the team was a goal for social-emotional therapy.  Our thought is that Ella might benefit from a therapy that can help ...

This past Friday was Ella's pulmonary check-up with Dr. Prestridge at Children's (she goes every three months).   Overall, everything looks great.  Ella is breathing well and doesn't appear to be working too hard for breaths. Dr. Prestridge did notice that Ella's chest shape is becoming slightly abnormal.  Her chest has a normal square shape on the sides, however, there is a slight protrusion developing toward the center.  This is due to her muscle weakness. We talked about how Ella wakes up frequently throughout the night.  Dr. Prestridge thinks this could be because her bipap settings need to be adjusted again.  So we are going to be scheduling another sleep study for these settings to be evaluated and possibly have her pressures increased.   Finally, Dr. Prestridge suggested a new therapist for us to visit who specializes in chest therapy.  There is a 4-6 month wait to see this woman, but she said it will be well worth it.  So we ...

Sitting around a table with former co-workers from Hephzibah Children's Association in Oak Park, IL after completing their "Walk for Ella" event we were handed an envelope.  Inside was a card that expressed the love and care afforded to us by our Hephzibah Family along with the magnet that is pictured above. Words that sink deep into one's soul if you only let them. Words that remind us what truly matters in our lifetime. Words that invite us to fill our hearts with more "ones". Words that allow reciprocal love to exist.  For it speaks of those we love and those who love us.   Words that speak of the people currently in our lives, those who have passed, and those who are to come. Many people have told me that Ella has touched so many lives.  She has provided inspiration to others.  She has given strangers cause to stop and smile at the sight of such a young child faced with the challenges of SMA and holding her grace and dignity all the whi...