Our family is back together again. When Gramma and Grandpa brought Ava and Henry home after Ella's g-tube surgery there was something different in the air.  They somehow knew that a major change had occurred with Ella.   They missed us, I could tell.  As they grow older they are becoming more and more attached to us.  The hugs received from each of them were ones that clung a little bit tighter to us; they had more of a loving feel to them.  Our two oldest children are growing up some--and beginning to feel more emotions regarding their parents. As we prepared Ella for bed, Lindsay took some time to explain to Ava and Henry the g-tube that had been placed in her tummy.  They listened with an intenseness that I had not witnessed from them before.  They knew that the MIC-key button was something that had significance.  They listened to every word that Lindsay told them.  They are beginning to show their concern and caring nature to...

We just met with the team and got the official "ok" that Ella can go home today! Yesterday she was pretty uncomfortable and started developing a fever.  But once we did her first formula feed through the g-tube, the fever went away and she started getting back to feeling like her normal self :) Her feeds have been going very well...she is now up to her full volumes and rates.  It will be nice to get back home and back into the routine again.  Things won't be very different after this discharge, the only difference being that her feeds go through the g-tube instead of the ng-tube (which is easier and more convenient anyway). So unlike Ella's first discharge after the RSV and pneumonia, we won't have a whole new lifestyle to adjust to :)  Here are some pictures and a video showing Ella's new button... Ella's new "MIC-Key" button (with the extension tube attached for a feed) The "MIC-Key" button closed (how it is b...

Reading bedtime stories with Daddy :) Ella had a fairly uneventful night, which was great!  She woke up a few times but was able to quickly fall back asleep with the help of her nurse "charging" with her :) Ella has been in a fair amount of pain since the morphine has worn off from the surgery.  We've been giving her Tylenol to help ease some of her discomfort.  We want to avoid any more morphine if we can, as it will weaken her already fatigued muscles. She has been on her Bi-PAP non-stop since the surgery was over.  Normally she only sleeps with it, but when she was extubated, she was having a little difficulty breathing on her own so they put her on Bi-PAP to assist her chest muscles.  She'll try going off of it today to see how she does on her own.  But so far, every time we've asked her if she wants to take it off she says "No"...our little smartie knows it helps her :) So far, Ella has been staying hydrated via IV fluids.  Today we will at...

The GPS was off this morning as we took the trip from Naperville to Chicago, bringing our Ella to Children's Memorial Hospital (CMH) to have her g-tube placed into her tummy.  We didn't need the GPS since we have been to CMH seven times since the beginning of the year.  The route that leads us here is now in our minds.   A route I'd rather not take but know, for the health and well-being of our daughter, is one that we must take.   Each time we come here it is a little bit different.  The stakes and implications are synonymous with change.   Our first visit was with her current head neurologist, Dr. Nancy Kuntz.  We spent time with Dr. Kuntz getting to know one another.  We talked about Ella, about us, and about Dr. Kuntz.  We left feeling good about having her as our head neurologist.  We still feel that way today. Our second visit was scary.  She had pneumonia and RSV.  We weren't planning on being here, let alone f...

Over the past week or so, I've been spending a lot of time with Ella's tummy. Her perfect, soft, squishy little belly. Today she is having surgery. Surgery to place a g-tube (gastrostomy feeding tube) in her stomach. This will permanently replace the ng-tube that she has in her nose. I know that this feeding tube will help her. It was continue to provide a way for her weak body to get the proper nourishment that it needs. But it's hard. It's hard to bring Ella to the hospital to have a hole punctured through her abdomen. Permanently. She will no longer have the unmarred tummy that she has right now. This is the first invasive procedure that Ella will have done as a result of her SMA. And it's a bit of a tough pill to swallow.  I'm not quite ready to say goodbye to her soft, squishy tummy as we know it. So I've been enjoying every second I can with her adorable little belly. Don't get me wrong, it will still be adorable. It will just be dif...

17 people. That's how many people we've had in and out of our house in the past two days.   We knew we needed to do some serious purging in our house to make room for the many pieces of equipment and supplies that we are accumulating since the SMA diagnosis.  Not to mention needing to make our spaces as open as possible for Ella.  But we knew we couldn't do it alone.  It would take weeks, if not months to complete.  We've had a LOT of stuff piling up since we got married! But instead it took us two days.  With the help of 17 people. We had 17 adults and children at our house to play with Ava, Henry and Ella while Michael and I basically gutted our basement.  Our pastor from church organized a group of volunteers to come in shifts over the past two days. And holy cow, did it help!   Here are some before and after pictures... The basement "before": The basement "after":   The storage area "before": The storage area "...

Today, Car Phase 1 has been completed. When we found out about Ella's SMA we knew we'd need a modified car that would carry 3 kids in car seats all in one row and a power wheelchair (that ended up being a 311 lb power wheelchair!) in the back...a tall order.  The only vehicle that is wide enough to accomplish this is the 2012 Honda Odyssey. Our friends, family and even strangers came to our side and raised enough money to help us purchase the minivan and have it modified.  With unending love, perfectly placed encouragement, and generous financial support...the hearts of many came forward to provide for our family.  The reality of purchasing this vehicle would have never been realized if not for the compassion of so many people. We spent the entire morning at the Honda Dealer negotiating a deal for the new minivan that we needed.  We brought to the table our needs and our story.  They listened and they worked with us. Honda accepted our initial offer for ...

Today (Thursday) is laundry day. Well, one of my three laundry days during the week. I've been loving this unseasonably, record-breaking warm weather we've been having. To say I've felt slightly more depressed this past winter than usual would be an understatement. Warm weather has so many perks, especially when having young children and ESPECIALLY when one has special needs...spending time outside, going for walks, letting Ella drive her power chair, going places without bundling the kids in jackets, and the list goes on and on. If there is ONE downside to the warm weather, it's the dirt. Come springtime, I always forget how dirty the house gets from the kids playing outside. They track it in on their shoes (even when they take their shoes off AT THE DOOR, it still seems to follow their little feet), it comes in on their clothes, and it even falls off their hair. So back to laundry day. I've always gotten mad when folding the kids' clothes and they...

Since the diagnosis of SMA was thrust into our lives in August of 2011 our opportunity for good, restful sleep has dramatically changed. The stress that comes with a diagnosis of a terminal illness housed in your child's body is like a mountain of worry that is ever-increasing in magnitude. This stress manifests itself in a myriad of ways~~one being less than optimal sleep. The fact that we must get up throughout the night to tend to our baby's needs, whether it's to turn her a bit to ensure her comfort and health or to start and stop her nightly feedings, adds to the lack of slumber. I have noticed, however, that we are growing used to this kind of sleep. Our bodies and minds are adjusting, adapting if you will, and from that I am starting to remember my dreams again. This is both a blessing and a curse. Many of my dreams are about Ella and her condition. Each dream starts out in pretty much the same way. I am with Ella and our family and we are at home. I start ou...

The floors at Molly Malone's were wooden.   They were flat.  They were smooth.  They were perfect...   ...Ella was able to cruise around in her wheelchair on these floors.   She was able to cruise in and out of her father's past...finding new friends to her in the old friends of her dad. She delighted in their love for her.   Each person that hugged me left me a message; they talked to me in their embrace...if not with their words then with their physical presence; their loving hold of me. Each hug brought a fresh flood of emotions. Each hug was unique.   "Stay strong" they told me.  "Keep going" they encouraged.  "Find us" they consoled.   I looked deeply into the eyes of many and they in mine, capturing the essence of what it means to truly care. To care about the life of a little girl and her family.   I didn't want to leave the day behind. I didn't want to foreg...

Today Ella had her upper GI test to make sure everything is functioning properly before her g-tube surgery in two weeks. Based on the initial assessment, the doctor said everything appears to be fine. He will go over the films in more detail and will fax over the official results to the surgeon by the end of the day. As usual, Ella was the ideal patient :) She was her happy-go-lucky self during the entire procedure. She took a few sips of the barium on her own, but after that she was "all done". Luckily, we were able to put the rest of it through her ng-tube and she had no idea :) Ella wasn't the only Casten to visit a doctor today. Michael has continued to battle the illness that has taken over his body since Sunday. He's had a fever, cough, headache, body aches, chills and hasn't been able to get out of bed for more than a few minutes at a time. Michael has not missed a single day of work for being sick since I met him (almost 9 years ago). So far...

It's 7:30 am and the house is quiet. Everyone is sleeping, even Michael. I slept with Ella last night. Well, TRIED to sleep with her. Michael has been sick since Sunday afternoon. The kind of sick that brings a fever, chills, excruciating headache and a dry, forceful cough. The kind of sick that has been keeping him home from work for two days in a row (something that NEVER happens for Michael). The kind of sick that Ella CAN'T get. So Michael has been quarantined to our room since Sunday to try to prevent the spread of this virus. Despite being tired, it was really hard to sleep next to Ella. Don't get me wrong, she is the sweetest little thing to watch when she sleeps :) But I found myself paying WAY too much attention to her breathing. If every breath wasn't perfectly even, I started watching her chest movements and looked at her pulse-ox machine to check her O2 saturation level. Last night Ella was up a lot. Maybe it was because she wasn't used to me sl...

We've had a very busy 48 hours. It's nice to finally sit down and have a chance to catch my breath. The craziness started on Thursday morning... It started like any other Thursday with aqua therapy at 8:30 am. I then took Ella to IKEA and The Container Store, trying to find some organization solutions for the giant piles of medical supplies that are accumulating around our house. Ella and I then headed to Chicago for an appointment with her neurologist's nutritionist at Children's at 1:00pm. The appointment went very well. We discussed the new amino acid diet that Ella is on and the nutritionist was very encouraged to see that Ella is no longer sweating at all during the day (and much less at night). Ella's energy levels are also returning to what they were prior to her RSV and pneumonia. We're so happy to see that this new diet is allowing her body to digest the nutrients more effectively! While we were at Children's, I got a phone call.  From ...

___________________________________ Years ago, many friendships were made. And over the years... They've witnessed happy times and hurtful times. They've carried each of us through triumphs and tragedies. They've comforted, consoled, and communicated. They've endured the test of time and distance. These friendships have once again been ignited to fuel the passion needed to show how deeply we care about the life of our Ella. She is our Ella...she looks to those who befriended her parents years ago.  She looks to these friendships to help her live her life to the fullest.  Click here for the Facebook Posting of this Event

I read about a 10-month old boy who recently died because of SMA. I received an e-mail from another SMA family telling me that they just had their boy in the hospital for 9 days because of SMA. I read a Facebook post from a mother screaming out to cyberspace for a cure for this disease so her child could live...she was in such pain because of SMA. I am part of conversations with others trying to figure out the best way to care for my child because of SMA. It saddens me to know that a disease such as this exists. It hurts me deeply to see my beautiful little girl struggle so. I sit with her at night, as she lay in her bed, holding her hand.  Her fingers are moving as she gains comfort from our connection both physically and emotionally.  I can see her eyes behind her bipap mask; they're gentle and kind.  She watches me watch her...I can see the reflection  in her eyes  of the screen and lights from the various machines...no longer does the moon cast its lig...