I took the kids outside today to enjoy this beautiful weather and to let Ella get some more practice in her power chair (and let Ava and Henry enjoy their new bikes!). This was only the second time that Ella has had true freedom in her chair and I was surprised at how well she's starting to maneuver it! I can't wait to get the new car so we can take her out in it all the time! We're getting close to officially starting the car process :)

Living with Spinal Muscular Atrophy is more than a full time job. There is so much involved physically, mentally, emotionally and spiritually. It truly is 24/7…I even dream about it (during the nights where we actually get more than a few hours of sleep in one stretch). I don't think there are any words that I can think of to describe the challenge. Words that would describe the intense difficulty of living with this disease. And it only continues to get harder. From the physical challenge of actually caring for Ella (including helping her with almost every single task she wants to do), to the emotional challenges of feeling the sadness of what she is unable to do physically and the fear of losing her. It's a lot to feel. But lately, I've been letting SMA take over my life. And I'm not okay with that. Yes, it is a HUGE part of our life (and will be forever). But it's not our ENTIRE life. It can't be. We still have our other children, Ava ...

Ella waiting in the ER at Children's Memorial Hospital (March 2012) with quite the sweaty head! March 2, 2012.  The temperature was dropping.  Raindrops were changing gracefully into large fluffy snowflakes being blown in the winter's wind.  The only person in our family who was sweating was Ella. She has always sweated but only when sleeping.  Prior to her pneumonia the sweating was of little concern since it was so mild.  Post-pneumonia brought some new developments for Ella. Since her discharge from Children's Memorial Hospital (CMH) on Feb. 20, after fighting the RSV and pneumonia, Ella has shown marked signs of apparent regression.  We noticed her becoming heavier and seemingly more "limp" when we held her.  The amount (and duration) of her sweating increased...from mild sweating while sleeping to a soaking sweat throughout the night and random head sweating during the day associated with very little physical exertion.  The most distur...

Lindsay and I sat at the kitchen table late last Friday night.  She told me that she wishes she could say, "When it rains it pours...",  but she felt she couldn't say that with conviction.   The implication of this saying lies on two fronts.  The first being that the rain represents something "bad" happening and the "pour(ing)" represents that it's just getting worse.  The second implication rests with the first word of the saying:  "When".  This implies that there are periods of no rain...where things are calm.   Lindsay continued, " It seems as though it's always raining, always a downpour around here." We looked at each other and shook our heads.  Our gazes locked in a silent moment of questioning disbelief.  What is happening to us?  To our family?  To our lives?   Earlier that night Ava became sick; she threw up all over the family room couch while I had Henry and Ella on my lap--on the same couch.  ...

I thought I'd share some pictures and videos of Ella's new equipment in the house. It's been quite the lifestyle change for us adding these new treatments to her care and it will still take some time to get used to them (both on a physical and emotional level). Here is a picture of our living room after her new equipment was delivered when we got home from the hospital on Monday (it doesn't include all of the supplies that we received, which we will continue to receive on a monthly basis). Below is a picture and video of Ella using her nebulizer. She will most likely only use this when she is sick. It helps to break up secretions in her lungs, making it easier for her to cough them out. When she is sick, she will use this up to four times daily. Here is a video of Ella using her "Vest" (a.k.a. "Shake"). I don't think I need to include much more explanation other than it helps to break up lung secretions. This is by far Ella's favorite...

Two hours she spent at the table.   She didn't want company.   She didn't want to interact.   She didn't want help.   She just wanted to play.  Nobody asking her questions.   Nobody hovering around her.  Nobody trying to make conversation with her. Just to be alone.  To enjoy life alone.  To be alone with her own thoughts in her own world. Ella wanted to be alone... Six days and five nights at Children's Memorial Hospital was enough for Ella.  While she enjoyed having so much attention given to her I think she really enjoyed coming home. While at the hospital Ella had absolutely no control over her environment.  She learned quickly that every time a person she didn't know walked into the room and was dressed a certain way (like a nurse or a doctor) that something most likely was going to happen to her...and it might hurt or be unpleasant.  She learned quickly to say, "All done" o...

Since we were unable to post pictures with our blog entries while in the hospital, here are some photos we took during our stay... Waiting in the emergency room. Chest X-ray First night in the hospital...finally fell asleep after midnight. First cough assist treatment. Resting after having her NG tube placed. On our way to the PICU (pediatric intensive care unit). Ella's room in the PICU. First "Vest" treatment. First time sleeping with the BiPAP. Waking up after her first night with the BiPAP. Heading back to the pulmonary floor. Serious bed head. Bath time! Ahhhh, clean and starting to feel better :) Whatever works for ya, babe :) View from the pulmonary floor (not from our actual room). Enjoying a chocolate covered strawberry. Taking one last snooze before getting ready to go home. Ready to go! And for your enjoyment...Michael doing Cough Assist :)