There could be a lot said for the past year, 2011.  There could also be a lot not said.  Looking back over the year in review I cannot help but sit back, take a deep breath, and sigh...  I sigh for lives lost and for precious lives gifted to us... I sigh for dreams lost and for depth of soul gained... I sigh for arguments waged and for forgiveness expressed... I sigh for seemingly endless moments of fear and for comforts found in an embrace... I sigh for rising anger within and for capturing peaceful glimpses of time... I sigh for struggles endured and for victories celebrated... I sigh for the loneliness that traps us and for the community that surrounds us... I sigh for the chance to give and for the humbleness to receive... I sigh for missing old friends and for the ones that once again emerged along with the new people filling our lives... I sigh for my children's pain and for the healing hand of God... I sigh for the exhaustion we've taken on and for the...

1 to 6. That's how long Ella was up Thursday night; from 1am to 6am. She has a cough. A simple cough...for you and me maybe, but not for a person suffering from SMA. This poor little kid. She was coughing the whole time. Well, trying to cough. Drawing in a breath strong enough to generate an exhale that will produce a cough capable of clearing her upper respiratory tubes is not something Ella can do. It's torture. And not just for the one who is suffering. She was almost gasping for a deep breath. A breath that couldn't be there. For close to 45 minutes Michael, in the wee hours of the morning, had Ella down in the family room performing chest PT (in an attempt to loosen up the phlegm in her chest) enough so her weak cough could have a better chance to expel properly. She lay on his lap, tummy down, head and upper body at a slight downward angle, and patiently let the chest PT (which is done on the chest, sides and back) do its work. She graciously allowed Mi...

Three-hundred eleven pounds. 15x the weight of Ella. Designed in Sweden. Astronomical price tag. Delivered to our house and received with mixed emotions. The Permobil K450 MX is here.   Having this piece of machinery in our house for our 18-month old daughter strikes many chords with us.   We are excited to have it because it means that Ella now has a long-term solution to her lack of mobility but it carries with it the reminder of what SMA is doing to her body. We are grateful that modern technology has equipped Ella with a state-of-the-art wheelchair that will allow her to experience the world in a way she hasn't yet and might not have without it.  It brings with it the awesome task of preparing her, Ava & Henry, and ourselves to live with this monster of a machine in our living spaces. We are in awe at the capabilities the Permobil boasts; it's versatility, power, and parent-friendly controls.  It calls us to the reality that our...

Earlier in the fall we learned that Ella's continued regression was not usually "typical" for a child with Type 2 SMA, which led to the new classification of "severe Type 2." However, we were told that at some point (hopefully in the near future) her regression would plateau for the time being. About a month or so ago, we started thinking that the regression had indeed slowed, if not stopped. We were very excited that we could finally start focusing on the skills she had, not worrying about what would be gone tomorrow. Or the day after that. But then a couple weeks ago, Ella all of a sudden lost the ability to lift her arms at her shoulders. She used to be able to lift them to almost 90 degrees. She can, however, still bend them up at her elbows. I told her PT about our concern last Tuesday, and she immediately saw what we were talking about. Ella couldn't reach for anything. She also noticed that Ella's neck muscles seemed weaker because her head...

Most people I have spoken with since Ella was diagnosed with SMA have told me that they had never heard of this disease.   Neither had we. Yet it remains one the most devastating genetic diseases out there. How does Spinal Muscular Atrophy happen anyway? The answer lies in the genes.  A single protein.   Here, it looks a little something like this... The SMN1 (Survival of Motor Neuron) gene is what people with Spinal Muscular Atrophy are missing. This gene produces the protein that keeps our motor neurons alive. The SMN1 (Survival of Motor Neuron) gene is located on chromosome #5. Mother nature produces two of these genes on chromosome #5: *an original ( SMN1 ): This is missing in people with SMA *and copies ( SMN2 ): People with SMA can have up to 6 copies The two models below show how SMN1 and SMN2    genes make their proteins and how Spinal Muscular Atrophy occurs: Normal SMN1 protein production ...

Yesterday I got our new 2012 calendar. In addition to our online calendar, we have a wall calendar that I write pretty much everything we do on.  It hangs on the side of our refrigerator, so I can have quick, easy access to it. The first thing I do when I make the switch from one year's calendar to the next is go through and write in all the obvious dates (birthdays, anniversaries, etc.).  I have the two calendars side-by-side, flipping through each month together.  Then I check our online calendar and go through and write any appointments or events that we already have scheduled for the new year. While going through the 2011 calendar, I found myself noticing the strange progression of our year.  Early in the year, things were fairly uneventful.  But then when the summer months hit, our weeks started filling with more and more doctor appointments. And then I came to August 12, 2011.  That dreadful day that I will never forget.  The day our lives ...

Christmas is just around the corner. This year is different.  It has called Lindsay and I to look at our lives and the lives of our children in such a different way.  The “holiday spirit” of yesteryear brought with it the gathering of family & friends, the gifts, the lights, the food, the decorations.  All designed to enhance the feelings associated with the season. It’s different now.  We do not know how many Christmas’s we’ll have with Ella.  That’s a stark reality that brings our world to a halt whenever we think about it. Everything outwardly is still the same; the world goes on with the preparations, the merriment, the anticipation.  We have found that the change is inside of us.  We see the season with new eyes and a virgin heart.   Yes, we got a tree. Amidst the decorations and lights i t seems empty somehow.  It's there yet it stands alone.  Kind of sad in a way.  When we gaze upon our tree the feelings e...

Today I care. I've found it's been very difficult to care about much these days. It's hard enough to just make it through each day. My to-do list has been getting longer and longer, and I've just wanted to crawl in a hole until those tasks just vanished. But guess what? That's not how it works. Go figure. But something came over me today and I was productive. I did laundry. This is typical for any given Monday, but I still did it. I cleaned. I mean REALLY cleaned (the first floor, anyway). This is not something I've done in a while. It's been one of those things that I didn't care about. At all. But every time I'd walk by a some junk piled up high, or dirt and dust on the floor, it would make me angry. But I never did anything about it, because I didn't care enough. But today I did. I called two places to start the process for getting a lift installed in our car for the new wheelchair. This was a very simple task, yet I hadn...

This week I've been able to reconnect with a few close friends.  I've definitely been "out of the loop" lately, so it was very nice to be in such good company again. Many of my friends have kids the same age as Ava, Henry and Ella (or very close).  It's always been great for us moms to catch up, while the kids entertain each other. Today, my good friend and I listened while our children (Ava, Henry, Sophie & Luke) played hard.  They went down the basement and played on the "roller coaster".  Then they all ran upstairs to the second floor to jump on the beds (and somewhat destroy the nicely arranged rooms... sorry, Mary!).  Then it was back to the basement, and back upstairs again.  This happened for a good 3 hours (with a little lunch break in between).   But there were two other children at the house on this sunny December day. Ella and Maggie.  Ella and Maggie are good buddies. Ella is 18 months old. Maggie is 4 months old. Ella is...

Don't let the scene above fool you. Yes, the three Casten kids are engaged in their own separate activity. Yes, the room is quiet. Yes, this only lasted for about 10 minutes. Raising 3 kids under the age of 5 is something we knew would be challenging.  We knew they would fight, we knew they would bother one another, we knew they would make bad choices right alongside their good ones.   Don't let the scene above fool you.  They are just about driving us crazy. While SMA first and foremost affects Ella, it digs its claws in the whole family. Ava and Henry are unable to express, in a way that is productive, the feelings they encounter internally and externally in regards to SMA.  But they do have those feelings.  It's very hard for them.  Our task is to identify when they are overwhelmed by life...and help them through it. Ella is a smart girl.  She is beginning to understand that her disability forces her into a different way of dealing with the world. ...

I hold a BA in Psychology and an MA in Education. I am fascinated by human behavior.  I have learned much through my life experiences, my education, and from working directly with children & families for nearly 20 years now. I remember learning about the 5 emotional phases that people go through when dealing with difficult times.  I recall them with the acronym " DABDA ": * D enial * A nger * B argaining * D epression * A cceptance People go through these emotional phases when dealing with all kinds of events, although they may not necessarily be experienced in the order written; and often, any one of them can repeat themselves within the given event.   Within the past three days I have been angry.  It's not something that I easily admit...at least not publicly like this, but it is true. It’s an anger that resides deep within my core.  An anger that works its way into the fabric of my life.  An anger that I am fully aware of and at the same t...

I always wondered how they got a cast off... Today I got to see how it happens. Ella got her cast off and had new x-rays of her arm, and she's completely healed! I was definitely more excited than she was... ever since it came off, she's been holding her arm and whining, "More purple!" I guess it can take a little while for her to get used to "not" having it :) She's still favoring her right arm quite a bit, so it will take time for her to get used to using it again and to rebuild some of the lost strength. But so far, no sucking her fingers! Fingers crossed that it continues... I am SO happy that the cast is gone... it will make our lives just a little bit easier :) Anyway, here are some pictures of the process:

As you may have read, the insurance company approved her power wheelchair. They approved it without blinking. That's really incredible considering that many people have to fight the insurance companies to get what their kids need. The feelings that filled our house when we knew she would have the wheelchair settled in for the night. Many of you celebrated with us through your words and thoughts. As time slowly rolled by today I found myself thinking more and more about the Permobil K-450 that would soon arrive at our doorstep. The practical side of me is still excited. I'm excited for Ella to have a way to interact with her environment; excited to teach her how to use the 300+ lb piece of modern technological equipment that is a far cry from the kinds of wheelchairs available to kids who needed them when I was little. Then my mind takes a detour as it so often has these past few months. A detour that I travel blindly. Travel it I must though, for it is part of w...

Oh my. We got a call from the pediatrician's office today. The insurance company approved the power wheelchair for Ella. 100% covered (except we have to pay the tax). Wow. I am so excited, I can hardly contain myself! Once Ella gets this chair (and masters it), she will be ALL over the place! She's getting the Permobil K450 MX. It will be SO good for her! The seat raises up and down, it tilts back for when she gets tired, and best of all, the chair lowers to the ground so she can interact with her peers! It will be so wonderful to have her be able to get around so much more independently outside of our house! So now we're waiting for the vendor, National Seating and Mobility, to receive the official authorization from the insurance company. Then they'll place the order. The vendor representative that we've been working with said we'll probably have the chair by the end of the year (like... in a few WEEKS!). How incredible! But now we really ...