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 :)

We're just leaving the hospital. Our feelings are surprisingly bittersweet. I'm excited to go home. Living in a very cramped hospital room for the past 6 days has been rough. We haven't gotten much sleep. We miss our family, friends and regular daily life. But I'm nervous. I'm nervous to go home. I'm nervous to be responsible for all of these new treatments that Ella will need on a daily basis. I'm nervous about how I will find the time to add these treatments to our already jam-packed days. For now, this is what we'll be adding to our daily routine: NG tube feedings 4 times per day (an hour for each session, not including set up/clean up) Vest treatments 4 times per day (20-25 minutes for each session) Cough assist and suction 4 times per day (15-20 minutes for each session) Periodic pulse-ox checks throughout the day BiPAP setup at bedtime every night (and possible adjustments/comfort throughout the night) The only change once Ella is completely healt...

The first hug that wrapped around each of us as we entered York High School on Feb. 19, 2012 brought with it tears. The last one as we left summoned the deepest feelings of love and gratitude that we have ever felt. Ella's Day cannot be described in any other way than to say it was an incredible way for so many people to show their love and support for Ella and our family. Over the past five and a half months, while the planning was taking place for this event, Lindsay and I met with the lead coordinator for a total of two times. She took the healm to orchestrate the event, showing the utmost in respect for our family and our emotional vulnerability. After returning to CMH after Ella's Day, we sat in the hospital room with our Squishy, we were in awe of what we imagined must have taken place in order for this day to be the incrediblhy positive reality it was. We knew that so many people in our lives and a host of businesses came together to help. We knew that peop...

Ella is continuing to improve. She's laughing and smiling and starting to get back to her old self (but she's still pretty weak). Ella's right lung still has a little "squeak" to it, but it's much better from when she came in Wednesday night. We met with Dr. Prestridge (Ella's pulmonolgist) this morning and it looks like Ella will be able to go home on Monday. Her new equipment will be delivered to our house that day, and as long as the home care specialists can come to set it all up for Ella on Monday we can go home then. Tomorrow (Sunday) is the "Ella's Day" fundraiser in Elmhurst. As long as Ella continues to be doing well, our plan is for Michael and me to come to the event while my sister and brother-in-law stay with Ella in the hospital. Dr. Prestridge said this is completely fine and that the hospital has our cell phone numbers, should they need to contact us. Just as a note, we have been writing these blog posts from our phones and we...

We've been at the hospital since Wednesday night. Ella has been having aggressive treatments to help her pneumonia and RSV symptoms, and she seems to be making some improvements. They've taken her off IV fluids since she is meeting her nutrition goal with the ng-tube feeds (she still needs the IV for antibiotics). She spent the night last night in the PICU (pediatric intensive care unit) for her bi-pap initiation, which went very well, considering it was her first time using the machine. She was able to return to the pulmonary floor today. Tonight she will use her own bi-pap machine that we will be taking home with us (last night she used the hospital's). She's been using the "vest" treatment to help break up chest secretions (this can be used in place of the manual CPT/BD). Both of these treatments are followed by the cough assist machine. She's slowly but surely getting used to cough assist. It's an uncomfortable piece of equipment, to say the least....

We're here. In the hospital. With Ella. She has RSV (respiratory syncytial virus) which has led to pneumonia. It started as a simple cough/cold, but it is difficult for someone with SMA to cough up the secretions to fight off the infection, thus it can lead to a more serious illness. So here we are. The pulmonary department of Children's Memorial Hospital in Chicago (however, we will soon be moving to the PICU). We met with the entire pulmonary team this morning. Everyone we have spoken with is incredibly knowledgable of SMA (which is such a great feeling). Ella is in SUCH good hands here. The attending pulmonologist wants Ella to stay until her lungs are clear and she's stable enough for us to continue her care at home. We were told to plan on staying at least through the weekend, if not until next week. Wow. So far Ella's treatments have included the following: Oral antibiotics IV antibiotics IV fluids ng-tube (nasogastric tube) for feeding CPT/BD (chest physical t...

Ava has been intrigued by 'where we come from" or as she so eloquently puts it, "who made me (or mommy, or daddy, etc)?".  Typical "children" questions that require tact and finesse on the part of the parent when answering. Lindsay and I have approached this inquiry with a simple answer to the "who made so-and-so" question...our response has been, "God and 'this-and-that person'".  For example... "Who made Mommy?" asks Ava. "God, Gramma, and Grandpa," replies Michael or Lindsay. "Who made Daddy?" Ava continues. "God, Yiayai, and Pappou," we tell her matter-of-factly.   And so it goes, Ava runs the course of our family history, interrogating us repetitively.  Sometimes I can hear her under her breath reciting who made whom...of course, God is always the first name she speaks. Recently, however, her questions have gone a bit deeper,  Our four-and-a-half year-old is taking i...

Where was I one month ago?  Hmmm, mid-January.  I suppose if I look back at my calendar I could probably figure it out.   Where were you? This past Saturday (Feb. 11, 2012) our family went to the FSMA Illinois Chapter Meet & Greet.  We went to meet other SMA families. What we found there was so much more.   Dedication and love.  We met with other families affected by SMA, we met with children who have SMA, we met with adults who have SMA, we met with people who have dedicated their careers to helping those with SMA.  It was incredible. Among all of these people there was one that stood out to me.  I never actually met her yet I was touched (to say the least) by what she said during our lunch together as we all crammed into the adjoining conference rooms; she was in the room next to ours, separated by a large window and a door.   Her child died one month ago from SMA.  Her tearful eyes shared her grief as she spoke...

Ella takes Lindsay's hand just after her birth The past week or so has found me feeling different somehow.   T he look in Ella's eyes and the expressions she is beginning to make are grasping me more tightly than I expected they would.  Having two other children, I know that a child's personality begins to manifest itself a bit more outwardly at about the age Ella is at right now.  She is starting to interact in a way that speaks the message that she, as a person, is on her way to understanding the world around her.  She is in the throws of sensing that she can make an impact by her actions, words, expressions, and emotions. Ella's development has taken a slightly different route than Ava and Henry's did simply for the fact that she has SMA.    A month ago she may have looked at me with a look of guarded bewilderment due to her limitations... I might have felt discouraged not knowing how to deal with it.  N ow her eyes speak to me showing...

We got Ella's stander today! Now we can start having her stand for longer stretches of time (working up to two hours per day).   This will help her in many ways, including increasing her bone density, helping her respiratory function, etc. Next order of business...find a place in our house for another large piece of equipment! Standing tall while enjoying a book.

She looks good, doesn't she? Upright, feeling gravity but not succumbing to it, using muscles that have not long been used, standing. She delighted in the prospect of standing and her face lit up when Lindsay placed her knee immobilizers in their respective places.  We put her shoes on without her AFO's (Ankle-Foot-Orthotics) and let her have at it. I snapped several pictures, each showing a slightly different angle and facial expression...this one captures her in a moment that she is more focused on her play than her standing...a feeling we want her to continue to have---just like you and I have.  When we're engaged in something while standing, we really aren't thinking about standing...we're focused on our task.  We want that for Ella. Movement was the next logical "step" so we put on her AFO's and brought her to the dining room.  While walking demands more from the body and gravity will delight in pulling one down during the task, we we...

The parking lot was full of cars that made no noise as they sit, empty.  The familiar sounds of the big city lay somewhere in the distance, barley audible yet crept into our ears, lightly tapping our eardrums. It provided a background for the emptiness that careened across our awareness of reality. Ella was placed gently into her car seat, a smile ran across her face as she looked at us.  We both stroked her cheek with the backs of our finger, tilted our head a bit as we gazed at her, and took in a deep sigh.  I stepped back as Lindsay closed the door and we made our way into the car; finding the familiar yet oddly strange places we have occupied for years. The slam of the doors ushered in the silence that waited for us in the car.  The background noise that was the hum of the city disappeared behind the glass and metal of our Honda Odyssey.  We stared off into the distance that offered us a glimpse of the evening sky of Chicago; our minds beginning their own...