Tighter Hugs...(by Michael)

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 toward their family  members.


Many people tell us that because of Ella's diagnosis of SMA and all that comes with it, Ava and Henry will grow to be rather remarkable in terms of their compassion and tolerance for others.  As we go through our daily lives we stop every so often and witness this development that is occurring within them...a development that does not often occur in people their age.  The natural tendencies of children to show unconditional love for others coupled with the deep love they have for their sister is molding them...we watch as the "play-doh of their emotional and social lives" is being lovingly manipulated by the familial circumstances they find themselves.


They rely on one another.  They look to their parents.  They delight in their grandparents. They relish the love of their aunts and uncles.  They look forward to their cousins.  They enjoy all those who come to care for them or whom they go to for care.  They are developing a sense of community and family...a sense of reliance on others that in turn benefits all.  They are becoming more compassionate and caring as they grow and mature.  


Our family is back together again. This time it feels a bit different.  We are all a little bit older, all a little bit wiser, all a little bit more fragile.  

Going Home Today!! (by Lindsay)

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 between feeds).

She knows right where her new button is :)

This morning she noticed her belly button has a little "owie" and she said "Uh oh!" (the laproscope went through her belly button during surgery).

Happy girl ready to go home!

G-Tube Surgery Update (by Lindsay)

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 attempt her first feed through her g-tube.  We'll start slow with Pedialyte for about 6 hours to see how she tolerates it.  If that goes well, we'll slowly transition to her formula.

Right now we're waiting for the ICU team to do their rounds.  Once we meet with them, hopefully we'll have a better idea of when we'll get to take Ella home (we're hoping for tomorrow!).  

Thank you for keeping Ella (and us) in your thoughts and prayers!  We will continue to keep the blog posted with any updates.  

Silent GPS...(by Michael)

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 for 6 days.  We were introduced to a host of machines, a wealth of medical information, and a new life for our family upon our return home.  It catapulted us into the world of mechanical support for Ella.

Our third brought to us the enormous responsibility of being an advocate for Ella.  We came in response to her struggling at home with energy levels and nutrition concerns.  We spoke on her behalf to the CMH staff, advocating for her best interests.  We left with answers and a plan for Ella.  

The fourth visit was with the nutritionist.  We placed Ella on the Amino Acid (AA) diet which is basically a diet that provides excellent nutrition and is easier for her body (having SMA) to digest.  It is a highly specialized diet and the nutritionist has been supportive in our efforts to provide for Ella.

The fifth visit actually occurred on the same day as the fourth.  An opening for a sleep study became available while the nutritionist appointment was taking place.  Since it was a cancellation, Lindsay had to travel back to Naperville for supplies and then return to CMH.  The sleep study ultimately resulted in Ella's bipap being set at optimal settings for her...settings that would provide excellent breathing support while she sleeps so as to conserve energy and aid in chest development.

Ella's sixth visit to CMH was to follow-up with her pulmonary specialist, Dr. Prestridge.  From this appointment the stage was set for the continuation of all we had advocated for in terms of respiratory and nutritional support as well as receiving valuable information about Ella's "respiratory plan" for her g-tube surgery.

Which brings us to the seventh visit to Children's Memorial Hospital. The g-tube surgery.  Watching one of her surgical team members (the anesthesiologist) taking her from us and into a place where they would put her under, cut her open, and place an invasive piece of equipment into her body that will be present for the duration of her life, was tough.  We placed our trust in the doctors and the CMH staff.

Ella's surgery went well.  We came into the PICU and sat with her as she slept after the procedure.    I could see the muscles in her body methodically "twitching" as she slept, something I've grown accustomed to with having a child with SMA.  She woke up with mommy and daddy in the room about 3 hours after surgery began. 

She's a bit dazed and uncomfortable as she gathers herself from being put under and surgically invaded.  She recognizes her "owie" and seems to know that she is here to be taken care of by all those around her.

When we leave CMH this seventh time we will walk away with yet a different SMA related responsibility.  We know that the g-tube is a positive step for her health...it does, however, carry a reminder of what we are dealing with in terms of her disease.  

We didn't need a GPS to get here.  We don't need a "GPS" to navigate CMH.  The path that SMA has us traveling doesn't register with any "GPS"...we rely on one another, our family, friends, and community to do all we can to give her, Ava, and Henry the best life experiences possible.

Her Tummy...For the Last Time (by Lindsay)

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 different. And it will take some getting used to.

One last look at Ella's tummy with only one belly button.

Enjoying some "tummy time"...

The surgery itself is very routine. It will be done at Children's Memorial Hospital in Chicago.

The risk for Ella is the anesthesia. Her pulmonologist explained that when a person has a general anesthesia, their lungs collapse a little bit. It takes a lot of chest strength to get the lungs breathing properly again after being intubated during surgery. Add the effects of the pain medication, which will make her muscles weaker than normal, and it will put a lot of strain on Ella's weak chest muscles.

She will need to be on her bi-pap machine to help her lungs immediately after surgery (and up to 24 hours straight following the procedure).

Because of the added risk as an SMA patient, she will need to stay in the PICU (pediatric intensive care unit) for at least two nights following the surgery.

We will keep our blog updated with her progress. Please keep our Squishy in your thoughts and prayers today :)

The Purge...with the help of 17 people (by Lindsay)

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 "after":

Our garage is now filled with TONS of stuff that we'll either be throwing away or donating to our church rummage sale - of course not ALL of it will go...some is our normal "garage" stuff :)

For those of you who don't know this about me, I am a very organized person.  I LOVE to organize (when I have the time).  Being in a neat and orderly house REALLY helps my sanity :)  And I already feel a huge weight lifted :)

Thank you SO much to the 17 of you who came to the rescue (and those who helped to organize it)...we could never have done it without you :)

Car Phase 1: Complete...(by Michael & Lindsay)

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 the new Odyssey.   They gave us an excellent appraisal on our trade-in.  They also will allow us to continue driving the trade-in until the new Odyssey has had all the modifications completed (4-6 weeks).   

Our sights now turn toward Mobility Works and the actual modifications. On Monday we will drop off the new Odyssey to Mobility Works along with a deposit for the modifications.  They will send the minivan out to have the following done:

• Remove the entire third row.
• The floor will then be cut and lowered from just behind the second row all the way to the back of the car.
• The new (lowered) floor will be put in.
• The manual rear-entry ramp will be installed.
• Four retractable tie-downs will be installed to secure the wheelchair in place when it's in the car.
• An inverter will be installed to power Ella's machines and equipment for when we drive for longer stretches of time.

A huge undertaking to say the least.

If not for the generosity, the compassion, and the support of so many people we would be in a completely different place right now...in so many ways.

Car Phase 2 will be underway.  Stay tuned for the final outcome...

Clean Clothes (by Lindsay)

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're stained with grass and dirt. Michael always reminds me, "They're kids. That's what they do. They get dirty." But still. It's always bothered me when they feel the need to literally roll around outside.

But lately, as I've been doing laundry over the past few months, I've been noticing that as Ava and Henry's clothes get dirtier over time, Ella's remain the same. Exactly the same. Almost as if they've never been worn.

And it breaks my heart.

Here is a pair of socks that I took out of the laundry today.  I bought them for Ella when she got her AFOs (leg braces) back in September (almost SEVEN months ago). They still look brand new.  I couldn't even tell you how many pairs of socks Ava and Henry have gone through in that same amount of time.

Now I'm no longer upset when the kids get their clothes dirty. I just wish Ella could get hers dirty right along with them.

Agonized Hope...(by Michael)

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 out looking down at Ella and seeing her in her little wheelchair. I position myself to be at her eye level and I say something to her--it's always in the garbled dreamlike language yet I know it is something important that I am telling her. The dreams always follow the same pattern in that after I am finished talking with her I walk away...in some way leaving her to her own devices. I watch from afar. I study her closely and witness her overcoming her SMA. In some dreams she gets up and walks; in others, she moves her arms and legs freely and purposefully; and still in others she runs and jumps. However the scenario unfolds itself the resulting pride and joy denoted in her expression is always the same. The dream always ends with me holding her close in celebration of her victory over the #1 genetic killer of children under the age of two. It also culminates in a wandering feeling that we knew all along she would be cured. Of course at this point the dream ends.


Sometimes the ending comes about because there is a machine beeping in the night, telling us that we must attend to Ella in some way. Other times it ends because the night is over and a new day has come to us. Still other times the dream ends simply because I wake up.


A blessing and a curse. The curse aspect is the realization that these are simply dreams. Upon waking from them I am, for a brief split second, convinced that SMA does not exist anymore, for any child or family. Then the reality of our life invades me once again and I am left feeling numb. I am left drawing in a heavy, heartsick sigh for the reality that SMA carries ominously with it.


The blessing, on the other hand, comes from a deeper feeling. A feeling that stirs beneath the wreckage of emotions that reside in the pit of my essence. A feeling that holds promise. A feeling that comes to the surface during the dreams...it's that part of the dream where we celebrate the victory over SMA. The blessing of this feeling is strong during the dream yet is squelched by the reality upon waking. Although it may be squelched it simmers underneath during my waking hours; providing me with the glimmer of hope I so desperately need and desire.


Dreams are a curious thing. They give us glimpses into ourselves. They bring to us our fears, our hopes, our desires. Often they mask what they intend to reveal, leaving us with a distorted memory of them. One thing does ring true for the dreams of Ella that surround my slumber...they are, without a doubt, born out of a love for my child and for my family.


I must take these dreams with both the agonizing reality and the promises of hope that they bring to my existence.

Past. Present. Peace...(by Michael)

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 forego the feelings I was having. Amidst the emotion, among the laughter, intertwined with the gratefulness was a feeling that everything is going to be all right. 


 Living our life since we knew of Ella's diagnosis of SMA has been the most challenging experience either one of us has ever had. Finding a place that allows us to feel some peace about what the future holds for Ella and our family is difficult; for SMA tends to seep deep into our consciences bringing its harsh demands to our doorstep every day.

 I felt that my past and present met one another today. Those who brought themselves to us this day came from so many different places in my life. From this meeting of my past and present I felt a sense of peace that has eluded me for so long. 


As I sit in the quiet house, knowing my family is sleeping peacefully, I can feel the message so many imparted with their embrace...

 "Stay strong. Keep going. Find us"... 

 How can we not...

...with so many loving us through the most difficult experience we have ever encountered?

Sunday, March 18, 2012...

Upper GI and Pneumonia (by Lindsay)

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, he's missed every day this week. 

He called the doctor's office on Tuesday, and the nurse said it sounded like a virus. But by yesterday afternoon, with no hint of improvement, we decided he should probably be looked at today.

I was just finishing up with Ella at her GI test this morning when Michael texted me..."walking pneumonia."

Ugh.

Well, that definitely explains why's he's been so incredibly out of it. Poor guy. I've never seen him like this before.

But on the plus side, it's a bacterial infection, so he's now on an antibiotic and should be feeling back to normal by the end of Saturday.

He's been doing a great job keeping his distance from the kids. For the first few days I wouldn't let him out of our room. At all. But then yesterday, with the weather being so beautiful, I decided to let him out of his prison so he could rest outside on the deck :)

He's now got a little setup in the basement, isolated from any interaction with any of us.

It's been a bit of a tough week, being "on" as mom 24/7. But now at least there is an end in sight. By the end of Saturday, Michael will be able to be around the kids again...phew!

Until then, keep on resting, my love :)

Sleepless with Squishy (by Lindsay)

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 sleeping with her (or anyone other than Sasa, our dog, for that matter). Maybe it was because she was struggling with her BiPAP for some reason (she kept breathing out of her mouth, against the machine).

But whatever the reason, she's sleeping soundly now. Like the little princess that she is.

Catching My Breath (by Lindsay)

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 Children's. 

It was the sleep lab telling me there was a cancellation for a sleep study that night. After Ella's hospitalization last weekend, she was placed at the top of the sleep study cancellation list because we've been concerned that her BiPAP settings might not be optimal for her. But she needed to have a sleep study performed to try different settings.

So I made some quick phone calls to the pediatrician's office (getting referrals in place) and we headed back out to Naperville to pack up Ella's belongings, machines, etc. After saying a quick hello to Michael when we were home, we got back in the car and went back to Children's.

When we were about 10 minutes away from the hospital, I got a call from Michael saying that the referral for the sleep study was for the wrong hospital! And it was after hours, so we couldn't call the pediatrician's office to make the correction. The sleep lab said the only way we could have the study done was to pay for it ourselves upfront (yeah...not so much). Luckily, our pediatrician gave us her home phone number a while back (she rocks!) so I was able to call her and she made everything happen for us (she REALLY rocks!).

We got to the sleep lab and Ella got hooked up with all of the electrodes and she fell asleep around 10 pm. They tried the different BiPAP settings that we requested and she tolerated them well. We are still waiting to find out the results from Ella's pulmonologist.

What a GREAT way to travel inside the hospital...thank you for the wagon, Families of SMA!!

I showed this picture to Ella and asked her who it was and she said, "Monkey!" ha ha :)

Ready for bed.

We got up around 5 am and I had to replace Ella's ng-tube (I had to take it out the night before for the study). We gathered our belongings and packed up Ella's Bi-PAP machine and we headed back to Naperville.

Shortly after our arrival at home (and after Ella got a bath to clean off all of the goo from the electrodes), we got back in the car and headed to the New Lenox branch of Children's Memorial Hospital Outpatient center. We met with the surgeon who will be placing Ella's g-tube. She has to have an upper GI test done prior to the surgery, which will take place next Thursday (3.15.12). Her surgery will be on Tuesday, March 27th at Children's. We will plan to stay in the hospital at least one night, assuming everything goes well.

We then ran a couple of medical-related errands before returning home again in time for occupational therapy and then Ella's nap (during which time I was on the phone with doctors, nurses, receptionists, etc.).

When Michael got home from work, I was able to take a little break and go pick up my new glasses (mine broke in half the other day...go figure!).

When I got home, my mom had arrived with Ava and Henry...did I mention that my parents had them at their house since Wednesday night? Yeah, they TOTALLY rock.

Michael and I were then off to the appliance store to purchase a new range and dishwasher (we've been without a stove/oven for over a week and our dishwasher hasn't been drying very well for quite some time). We got back home in time to do Ella's cough treatments and get the kids to bed.

Finally, this morning we had an appointment at Mobility Works to get the final quote for the car modifications. Our next step will be to go to the Honda dealer to get the quote for the car. Once we purchase the car and bring it to Mobility Works, it will be another 4-6 weeks until it is completed. But we're getting close!

So that brings me here. Sitting on the couch, catching my breath. Henry and Ella are napping, my sister is making Shrinky Dinks with Ava in the kitchen, and Michael is helping my brother-in-law make an adaptation to Ella's small wheelchair that will help give her the extra trunk support that she needs :)

After I finish writing, I am going to attempt to start making room in our house for our ever growing mountain of supplies and equipment (by purging our house of anything and everything that isn't necessary...which is A LOT!).

Just a few of the things that we need to make room for...

And after I start making a dent in the home reorganization, I am looking forward to hopefully having some much needed down time in the near future :)

Our Friendships Are Now Hers...(by Michael)

___________________________________

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

A Sense of Peace...(by Michael)

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 light upon her...for the moonlight has been overtaken by the glow of the machinery.

The sounds in the room are sounds one hears in the hospital.  The humming of a small motor, the pulsing of a ventilator, the swishing of water that seems to keep the machines alive.  

The machines' lights flicker and put on a show that provide messages of life...they are mesmerizing. 

She lay still.  Unable to move herself.  Our dog lay faithfully at her feet.  I know she'll need us to move her later in the night.  I know that after looking at her as I enter the room I will quickly check the lights, the numbers, and the sounds for the normalcy I was taught to look for. 

It's up to us to make sure she is at her best all of the time...day and night.

It saddens me to know that so many people, so many parents, have lost their beautiful child to SMA.

Early in the diagnosis, a father of a teenager with SMA Type 2 told me that one of the best things he did for his boy was to tell him that,  "Everything will be all right" each night...that boy is still alive.  I've taken that to heart with Ella.  I tell her the same thing, if not with my words then with my eyes.  

If nothing else I can do my best to give her a sense of peace...SMA cannot take that away.