I've sat down to write a blog several times in the past few days.  Like everything else in my life, it too, has become more difficult. It’s like I am running in slow motion while everyone and everything around me is going at high speeds.  Each time I think that I feel ok I get blind-sided by  the awfulness of SMA.  It’s hard to describe but it’s like a wave flooding my mind, weighing it down and drowning out every other aspect of life.  The life I lead and must face in the future seems blurry, water-logged, and out of focus.  Nothing seems real anymore. When we first learned of Ella’s disease, we made a promise to one another, Lindsay and I did.  A promise to do everything we can to keep her alive until they find treatments and/or a cure.  Each day that passes seems to grow longer and the tasks more difficult.  Not only does the progression of SMA affect the physical well being of those who have it, the progression wears away at the ...

I used to think it was hard to be a mom. Let me rephrase that. I used to think it was hard to be a mom of three kids. Let me rephrase that again. I used to think it was hard to be a mom of three kids under age 5. I need another crack at this. I used to think it was hard to be a mom of three kids under age 5, with the one-and-a-half-year-old having a progressive neuromuscular disease. Nope, still not quite right. I used to think it was hard to be a mom of three kids under age 5, with the one-and-a-half-year-old having a terminal progressive neuromuscular disease, with no treatment or cure. Ok, this is it, I promise… It is so incredibly hard to be a mom of three kids under age 5, with the one-and-a-half-year-old having a terminal progressive neuromuscular disease, with no treatment or cure, and a broken arm. There that's it. What I just mentioned above is so far beyond what I ever imagined "hard" to be. And I wonder, will it EVER get easier? Judging by the pattern so far,...

The time of year has come when we sit in contemplation of all that surrounds us. The whirlwind of activity that has led to this day of Thanksgiving is by no means light. Our lives changed in the most unimaginable ways. Over the past 5 years of our marriage we have built a family of five, cut our income in half by having Lindsay stay at home with the kids, lost a grandparent, a niece, a parent, a sister and two childhood friends, stood by a sibling with cancer, had two c-sections and one VBAC2, found a church that we love after years of searching, made new friends, started a business, travelled a bit, have called 911 three separate times, thrown a number of parties at our house, been a part of a sibling's wedding, baptized three children, and found comfort in one another. We have also learned that our youngest child, Ella Sabine Casten, has a terminal disease. A disease that we had never heard of. A disease they call Spinal Muscular Atrophy (SMA) Type 2. We often wonder how...

This morning I called the pediatrician's office to set up Ella's appointment with the Orthopedist. I spoke with our favorite nurse, Maggie (who rocks!), and she got Ella in to see the ortho this morning! The doctors at the ER figured we wouldn't be able to get in until next week, because of the holiday. When I took Ella to the appointment, she was a rockstar :) She was being her normal outgoing self, saying "hi" to everyone she saw, in that sweet little voice that we all love (to people in the elevator, the receptionists, the nurses, the doctor, etc.). When the Orthopedist saw her x-rays, he immediately confirmed the two fractures in her arm, the "buckle fractures." He said that with her being so young, her bones will heal very quickly and she will only need to wear her new cast for 3 weeks (as opposed to 6)! We've never had a cast in the family before, so I wasn't sure how she would react to the technicians putting it on her. While I di...

Last night we faced one of the most terrifying moments of our lives. Ava and Henry had gone down the basement to play and forgot to shut the door. Ella was in her wheelchair on the main floor with us. We had our eyes off of her for a brief moment and then we heard the thud-bump-thud-thud-thud . We knew exactly what had happened. She went down the stairs in her wheelchair. She's ok. We called 911 and she was taken to the ER. All of her neurological signs were completely normal. She wasn't sucking her fingers and "charging" to comfort herself, which we thought was a little abnormal. The doctors noticed that she seemed to have some discomfort in her right arm. Sure enough, she fractured the two bones in her forearm, just above her wrist. It's called a "buckle fracture", which is quite common among young children and pretty minor as far as breaks go… she won't need the bones to be set or have surgery, but she will need to be in a cast for 6 w...

This past Tuesday (11.15.11) Ella was evaluated and fitted for a "stander". This is a piece of equipment that holds her in the standing position, so she can bear weight, which is so important for a child with SMA. Weight bearing helps increase bone density as well as improve respiratory health, two essentials for children with SMA. The process for getting Ella the stander is very similar to that of getting the power wheelchair... first she is evaluated and her physical therapist and the vendor decide on what will work best for her needs. Then the letter of medical necessity is written by the PT, which is then given to Dr. Murphy (Ella's pediatrician), who then signs it. The letter goes back to the vendor, who then submits it to the insurance company. And then we wait for approval (hopefully). But this process takes a long time... the letter of medical necessity for her power chair has yet to reach the insurance company (and she was evaluated over 5 weeks ago - we w...

SMA is a progressive, degenerative disease.  It's robbing my daughter of movements we take for granted.  It's debilitating to her in so many levels.  It strips her of the ability to even lift a cup of water unless we fill it just right to keep the weight appropriate for her weakened muscles to manage.  It destroys joints and it wreaks havoc on the spine.  As a parent of a child with SMA I can honestly say that this disease beats on the emotional and physical well-being of me.   At night when the house is quiet and the clock is turning its hands without anyone looking; at 3 a.m. I make sure Henry and Ava's covers are doing their all important work of keeping them warm...when I reach Ella's crib I needn't adjust the blankets, for she hasn't moved since we put her down.  The light of the moon sits restfully on her brow and I see her frail body lying there, housing the soul we know as Ella.  I watch her sleep for a moment and then touch gently he...

With a heart painted on her cheek and a beautiful bow set in her hair, Ella looks to her new found friend Conlin. Conlin is a 10 year old boy.  Audrie is an 11-year old.  Chris is 9 years old. Conlin is a student of mine this year, Audrie was one from last year, and Chris is still in 3rd grade. They are remarkable people. Audrie & Chris, out of the goodness of their hearts, chose to help Ella by having the money that would have been spent on their birthday gifts instead be donated to Ella.  They, along with their friends, presented us with generous donations that helped purchase supplies that Ella needs for her everyday living.     Lindsay and I were overwhelmed with their generosity...hoping that someday our own children will be as thoughtful and caring.  For his 10th birthday, Conlin's wish was to help someone.  Like Audrie and Chris, he didn't want presents for himself; these kids weren't thinking about receiving.  Their hea...

Tomorrow (11.12.11) marks exactly three months since Ella was officially diagnosed with Spinal Muscular Atrophy. It's been quite the ride so far, even though we've barely scratched the surface of our new life with SMA. Many ups and downs (but definitely more downs than ups). SMA (and everything that goes with it) has completely taken over our lives.  It's hard to imagine getting anywhere close to what our "normal" used to be, when it seems that every time we move closer to acceptance, we get knocked down again.   This week it's Ella's fingers.  Her PT has noticed that her index fingers have been becoming hyperextended over the past month or so.  Her OT took a closer look this past week and said that it's because her hands are becoming weaker, thus causing her ligaments that hold her joints in the proper alignment to become loose.  After feeling the joints in Ella's index fingers, her OT said that her joints are already misaligned and will o...

Chest x-ray When we drove through the parking garage we found ourselves parking close to the exact spot we had parked when Ella had her EMG this past July.  It was then that we unofficially knew she had SMA...it was then, in that spot, that our lives took on a completely different meaning.  As we passed that spot we both looked and a shudder ran through our bodies...we found parking just a few spots away. We pushed that awful day out of our minds, gathered up our third baby, bundled her warmly (with her "b4SMA" blanket) in her stroller and went to go meet Dr. Lucille Lester, Pulmonary Specialist. Dr. Lester is fantastic.  She is experienced, easy to talk with, and approaches her craft with care, understanding, and with a logical sense about her.  We like Dr. Lester and she is now part of Ella's medical team. Our main focus was to baseline Ella's respiratory system and develop a plan for her so that we can keep her as healthy as possible for as long as p...

Writing this blog together, as husband and wife, seemed appropriate since the focus extends itself beyond our immediate family, stretching its reach to those of you who surround us. Extending to those of you who see us everyday and to those who we have yet to meet. We know there are so many people out there who are following our story--who are a part of our story. The highs and lows that we experience are often absorbed by you. We understand that we are not the only ones who are suffering at the hands of Ella's SMA. We appreciate your goodwill and compassion. We understand your feelings of helplessness. People have expressed in numerous ways their desire to help; "How can I help?", "What can we do now for you?", "What do you need?" are questions we hear often. Believe it or not, those questions are not easily answered. One might think in a situation such as this that we would be able to articulate our needs. Not so. We wish we could do so ...

On Wednesday Lindsay and I will take Ella to see Dr. Lester, her pulmonologist (University of Chicago Medical Center), for the first time.  Of course, the feelings about this appointment are mixed. I am anxious to see what the doctor will say about Ella's current ability to breathe. We aren't seeing anything unusual yet but we do know that the subtle signs of impending breathing problems can be hard to detect by parents/caregivers in the early stages. I am terrified because I know that respiratory health is a critical component to Ella's survival. It terrifies me, I think, because we are now entering into another aspect of SMA...a new realm. This is where the real work in keeping her healthy comes into play. The responsibility is tremendous. We have been in contact with several families that also have kids with SMA. We know that breathing assistance equipment, cough assist equipment, machines that monitor breathing, etc. will all be a part of our life...

I honestly don't know how I'm doing these days. I've come to the realization that SMA is not a reality for me. Not even close. I haven't been an emotional wreck lately. In fact, I haven't thought much about SMA at all. And it's intentional. I've realized that I'm doing everything I can to create things to keep myself busy so that I don't have to think about the reality of this awful disease. And it's working. One way I keep busy is by doing the many extra things that we have to do for Ella (make phone calls, research online, look into car/home modifications, etc.). It's weird, because I would have thought that these tasks would cause me to continuously think about SMA, but surprisingly, they don't. But every now and then it starts to creep it's way in… I see Ella struggle with tasks that should be very simple for a 16-month-old. But then she'll move on to something else and forget about it. She's starting to have littl...