10 years old...(by Michael)

I sat in my classroom at my desk this morning, preparing for the day's lessons.  The room was quiet, only the clicking of my keyboard filled my head alongside the thoughts of what I was planning for the day's lessons as well as the ever present thought of my family.


From the hallway there was the usual flurry of occasional activity as teachers and 5th graders (getting ready for patrol duty) rambled through the building and past my room.  


As I completed putting a thought onto my screen I heard a faint knock on the door and then the voice of a young boy, 10 years old; one of my former students from last year say, "Mr. Casten".


I turned and was a bit surprised to see him as he stood in my doorway.  On any other day his face was usually bright, carrying a smile only he could pull off, his eyes usually twinkled their blue color against his somewhat overgrown blond hair.  He, being the person he is, usually is quite animated...all of these qualities of the boy draw people to him...he is well liked.  


On this day, however, his look was different.


He stood in the doorway.  Looked directly at me.  I said "Hi" to him.  He drew closer then stopped, his eyes fixed on mine.  I sat in my chair wondering if his delightful sense of humor was going to unleash itself at this moment with something that would brighten my morning.  He did, however, more than brighten my morning, he shone a light on my day and into my soul.


The words that came from his mouth, as his eyes began to well-up; spoken with a slight crack in his throat were, "I'm sorry about what's happening with Ella."


My heart stopped and my spine felt the chill run up and down it while my hands drew cold.  I looked the 10-year in the eyes and told him to come to me. He stepped closer and I placed my hand on his shoulder and we both bowed our heads for a split second as I said, "Thank you".  


I told the young man that "We will do everything we can for Ella." and he held his chin up and nodded his head, his eyes fighting against the emotion that lay behind them.  I sensed his feelings and as I gathered my wave of tears and quelled them I spoke to him saying, "The fact that you came in here this morning to tell me that means more than you will ever know."


We smiled a slight smile at each other and our eyes relaxed, allowing the depths of the moment fill them with blurring tears.  We didn't cry though...we took one last look into each other's eyes and simultaneously looked back to what we were doing and where we going before this 90 second exchange took place.  


I glanced toward his pathway out my door to catch a glimpse of him as he rounded the corner out of my room...a tear streamed down my face and was caught by a smile.  


The past few weeks have shown me much of how people deeply care.  My emotions run in directions I didn't know existed.  They are literally changing by the hour.  Hope, sadness, pride, despair, fear, love, disbelief,  discord, numbness, anger, resentment, loneliness, confidence to name a few~~and all before I get to work in the morning; simply experienced during my drive to work.


The boy will go on with his life.  He and I will continue to have daily encounters in the hallways that result in laughter and fun times.  He will move on. His actions on this Sept. 30th morning will not move on...they will stay securely in a special place in my heart.


For all of you who think about us, pray for us, read and write with us, console us, provide for us, and take the time to connect with us...you have shown us the depth of the human spirit, the depth of love, the depth of kindness.


It's exactly what Ella needs right now. 

For a Moment...(by Michael)

Through every waking hour
my mind is always filled,
SMA never takes its leave.
but for a moment I am still.


I walk the path before me,
travelling hand in hand.
we trip and fall; we look to others,
but for a moment I am still.


The feelings come in waves,
the joys, the tears, the puzzling why.
plenty are emotions,
but for a moment I am still.


The world out there is filled with souls,
traversing their own way.
behind their eyes we may never know
what tears them up inside...
but for a moment I am still.


When streaming past the fallen leaves, while trudging through the snow,
as summer breezes kiss your face, and springtime again is known,
take the time to hug your child, to kiss them tenderly...
let your inner child delight in you...
but for a moment just be still


I am still.
still as thoughts surround my head.
still as walking paths we take.
I am still as waves of me spill out.
still as others find their way.
I am still as I hold my children near.


For a moment we are still.

Thank God for the Ups… (by Lindsay)

A roller coaster of emotions. It is almost impossible to handle. But the ups are what get us through the downs.

Ella's micro wheelchair has been a great addition. We're pretty sure we're going to get one for her (the one she has is a demo and she only gets to try it for two weeks). She's getting a little better at maneuvering it. She still can't turn or back up (when she runs into things), but I'm sure it will come in time. She's not quite strong enough to propel herself on the thick, plush carpet, but it's easy enough for us to change the flooring in those areas for her.

This wheelchair has been a major "up" for us :)

We took Ella to see her neurologist, Dr. Silver, earlier in September. We scheduled her to go to his MDA Clinic at Shriner's Children's Hospital in February (that was their first opening).

Since her appointment with Dr. Silver, we've noticed some definite regression with Ella's strength.

She's starting to fall over more when sitting.

She's slouching more, especially when sitting in her high chair or a shopping cart. Her PT got her an abdominal binder which has helped a lot with her trunk stability.

When we lift her from lying on her back, she's having a harder time holding her head up (it falls back and we have to lift it for her).

She's having a harder time standing and bearing weight with our assistance (even with all of her orthotics on).

Since no two SMA kids are alike, we have no idea what to expect regarding the progression of the disease. We've been assuming that her recent struggles have been due to her growing size and that her muscles are just having a harder time supporting her weight.

But I decided to email Dr. Silver (thanks to some loving advice from my sister, Sarah), just letting him know of our concerns and wondering if these regressions in such a short period of time are "typical" for kids with SMA, type 2.

After sending the email, I received an auto-response saying that he is out of town until October 3rd.

No big deal, it's nothing urgent. She's going to the MDA Clinic in February to see him again (as well as the rest of her new "team"), I was really just looking to be reassured that we don't need to be concerned.

Today a nurse called from the MDA Clinic. She said that Dr. Silver called her after receiving my email and wants Ella to come to their next clinic, rather than wait until February. She told me that it could be a long day with a lot of waiting, since they are double booked, but Dr. Silver wants her to come anyway.

We're now going to the Clinic on October 10th.

I wish I could have heard Dr. Silver's voice to hear how concerned he was about our Squishy. Is her regression really "bad"? Or he just being extra cautious?

I can't help but feel that he's concerned, otherwise he wouldn't be having her come to their very next clinic (which is completely booked 6 months out).

I think even more than the fact that Dr. Silver wants to see her, I'm terrified because we're watching our daughter get worse before our very eyes.

It's a lot to handle. It's indescribable.

So I thank God every day for the "ups" that we've had. I don't know how I'd survive without them.

Ella resting on her "Big Bear" after falling over, being unable to get herself up.

For the First Time...(by Michael & Lindsay)

We attended an SMA Fundraiser for a young girl in Naperville. Her best friend has, for the past five years, put together an event for her friend with SMA.

When we signed up to attend, we e-mailed back and forth with the parents of the best friend, sharing thoughts and words of anticipation for the upcoming event. We were excited while at the same time, apprehensive. The reality of SMA would surely be surrounding us at the event. For the first time...we are leaving the privacy of our own home and venturing out into the world of SMA.

Early in the morning we received an e-mail from the mother of the girl with SMA asking if they could show the "Ella SMA Awareness" video we created earlier this week. We, of course, agreed...humbly.

Walking into a roomful of people, not knowing anyone personally, yet being recognized by many, was an experience we had never had before...for the first time we were welcomed into a world that, 3 months ago, we never even knew existed. People had seen the video on YouTube...they knew Ella. They knew the Castens.

We spent several hours among people who have and still are living with SMA in their lives. We talked about life with SMA; about equipment, research, hope, tears, laughter, and the kids that touch our hearts so deeply. We connected on a level that is brand new to us and ever so refreshing and comforting.

The day before the fundraiser we received Ella's demo "micro-wheelchair" (a 7 lb manual wheelchair designed for very tiny people!) For the past day she would push the wheels back and forth, making the chair "rock"...sort of like a rocking horse. Ava & Henry have been great in their attempts to show her how to move the wheelchair yet she still kept doing the "rocking horse" motion.

Right before we were to get ready for the fundraiser, we put Ella in her "demo" micro-wheelchair...in another attempt to teach her how to move it. She continued to do the "rocking horse" motion. Then...she pushed the wheels forward and let go. For the first time she let go!! She repositioned her hands and did it again...

We stopped. The world stopped. The SMA stopped.

She beamed in delight for she knew what she had done. We gathered around her and encouraged her to do it again. She obliged happily. We took a video...for the first time in months Ella had moved under her own power.

We cried. We hugged. We embraced the moment. We felt victory over the SMA--over the disease that threatens our youngest child.

For the first time our family rejoiced in the moment as the world around us melted away...we rejoiced in the love, hope, and faith that we cling to every moment of every day.

A video showing, "For the First Time".
~Ella in her wheelchair...moving it under her own power~

Ella's SMA Awareness Video

This one is for you.

While words can be eloquent, they are inherently limited.

Experiences are the most powerful influences to us.

We invite you to view deeply the video that Lindsay has created.

Created for you~to experience Ella in your own way.

We ask, with sincerity, that you share this video with as many others as you see fit.

We know, from the depths of our existence, that we can help cure Ella and all the people affected by SMA...

Click here to go directly to the YouTube video.

Dear Ava & Henry...(by Michael)

September, 2011

Dear Ava & Henry,

The picture above was taken at your Thea Lillian's house in New Buffalo, MI on a crisp, clear Fall day.  I love this picture because it shows my three beautiful children looking out into the world.  A world that is very different from the one your mother and I grew up in.

As you three look out over Lake Michigan, I can't help but feel a sense of awe for both of you.  You are young in this photo...Ava, you're freshly 4 years old.  And Henry, you, my boy, are just about to turn three.  Your sister, Ella, is 15 months old. 

When this picture was taken we had known about Ella having SMA for just over a month.  In that time we have felt much of the human spirit.  We have felt the love and support of family, friends and strangers.  We have watched both of you respond in your own ways to what you understand to be happening with your sister.


Ava~~We delight in how you cradle Ella in your arms, call her your "Little Sweetie", and shower her with kisses and hugs.  We are amazed at how much you already understand about SMA, how much you intuitively know how to care for her.  We are blessed that you are her big sister for we know that you will be one of her best advocates.  Sisters are special people to one another and Ella is fortunate to call you hers.


Henry~~Your strength and determination will allow Ella to blossom into the best she can be.  As we watch you interact with her we can see that you have a soft spot for your sister.  Although, at your age now (almost three) you understand very little about what is happening with her and the SMA, you obviously know that she depends on you for much.  She will always look to you to keep her safe, to keep her at her best, and to keep her close to you.


I see more than three children in this picture.  I see three kids looking out not only to the waters that lie before them, but to the future that is unfolding.  I see three young souls individually preparing for a lifetime together~~however long that may be.  I see three members of one family forming a bond that will never be broken.  I see a sister and a brother surrounding their sibling with themselves; physically, emotionally and spiritually.  I see love.


As I write this letter to you, I know not what the future holds...I know not where the waves of life will take us.  I do know, however, that I am grateful for the blessing of you.


With love and adoration~
Daddy

Assistive Technology (AT) Equipment (by Lindsay)

During physical therapy this past Tuesday, Ella's PT (Lynda) told us that it's time to officially start the process of getting Ella a stander and power wheelchair.

We were hoping that her AFOs and knee immobilizers would help her enough to spend a good amount of time weight bearing, but unfortunately, she can only stand (with assistance) for a few minutes at a time before her torso starts weakening and she can't stay upright.

Ella standing very well while wearing her AFOs and knee immobilizers.

Lynda said she needs to be standing 2-3 hours a day to help her bone growth and respiratory health. So she'll need a "stander", which is basically a large piece of equipment that she straps into in the standing position so she can bear weight without having to worry about controlling her legs, waist, trunk muscles, etc.

As long as she will be evaluated for a stander, we might as well start the process of getting her the power wheelchair, since that takes quite a while (we've been told it can be as long as 10 months!).

When Ella first started PT with Early Intervention, Lynda had told us that getting any kind assistive technology (AT) equipment is a major pain. But I kept thinking that our insurance is pretty good and they told me that as long as Dr. Murphy (Ella's pediatrician) writes a referral/prescription for a device, they'll cover 100%. Excellent! So we'll tell Dr. Murphy that we need a stander and power wheelchair, she'll write a little prescription, and we'll have them in 3-5 business days!

Hmmmmm, not so much. Go figure :)

I've been on the phone with the insurance company, our medical "group", our pediatrician's office, different AT vendors, and different mobility clinics almost constantly since Tuesday.

Luckily everyone has been incredibly helpful and supportive, it's just been a very time consuming process! And Ella hasn't even been to a mobility clinic for an initial evaluation yet!

Basically here's how the process will work:

1. Ella needs a prescription from her pediatrician to go to a mobility clinic.

2. We fill out paperwork for the clinic, send it to them with the prescription and once the clinic receives it, they'll call us to set up an initial evaluation (some clinics are currently scheduling 2 months out).

3. Ella is evaluated by the equipment vendor's therapists, who specialize in such equipment. She's measured and we discuss her current needs as well as needs she will have in the future. Based on the evaluation, they will recommend a specific stander and power chair. Keep in mind, there's not just one type of chair and stander to choose from. They all have different options and features (and no chair or stander has everything, so we have to prioritize)... do we want it to tilt back? Have the chair go to the floor? Have the chair elevate higher? Front-wheel or rear-wheel drive? Joystick or button (or other) controls? Room for other equipment that she may need down the road? What kind of seat? And the list goes on, and on, and on.

4. Once the specialists make their recommendation based on the evaluation, we can either go with it and submit the recommendation to Dr. Murphy that day (see #5), or request to let Ella try a demo first (that's right, they don't have any equipment for her to try while there). If we want a demo, we need to make another appointment to come back (once they have acquired whatever product we want to try).

5. When we've decided on the wheelchair and stander, the therapists will write a very detailed recommendation to Dr. Murphy of what she needs and why. Every single feature of each piece of equipment has to be justified as being "medically necessary" with an explanation. For example, she will need the wheelchair to have a tilt option, because as she grows, her spine will not be able to support herself sitting for long stretches of time, so the chair needs to tilt backwards (into more of a lying position) to help prolong the development of scoliosis. Every single feature must have a medically necessary explanation.

6. Once Dr. Murphy gets the recommendation, she will write a referral for each piece of equipment and submit it to our insurance "group". She has already told us that she will support whatever the therapists recommend. We love her.

7. HOPEFULLY, the group will approve the recommendation. If so, it goes to the insurance company and they will cover it 100%. If the group denies it, we can appeal and go back and forth until we come to an agreement on what is "medically necessary". This process of getting approval can take up to 4 weeks.

8. Once we have official approval from the insurance company, Ella will go back to the mobility clinic to order the equipment and have molds made of her body so that the chair can be custom made for her.

9. We wait 6 to 8 months for the company to make her wheelchair. It shouldn't take as long for the stander.

10. Once the wheelchair is complete, Ella goes back to the mobility clinic to try it out. The therapists check EVERYTHING to make sure it's a proper fit and function for her. They teach her how to operate it (not sure if it's at the same appointment, or if we come back for the education part).

11. Assuming no tweaking needs to be done, we set up a time for them to bring Ella's new equipment to our house (assuming our car is not yet modified).

12. Ella is ready to take on the world!!

Phew! Not exactly seeing a wheelchair in a brochure and saying, "We'll take that one!"

In the meantime, we're exploring some other options to help Ella be a little more independent while we wait for the power chair (we'll write more on that later).

I must say, we've had a really rough few days last weekend and early this week. The reality is really starting to sink in and things feel very different now.

But being SO busy making calls, researching, making more calls and basically trying to get everything into position to start this process has helped tremendously! I've been able to get my mind off of the emotionally draining part and focus my energy on really doing things to help our Squishy :)

Silent Talk...(by Michael)

Lindsay and I sat in Ella and Ava's room after we got Ella from her nap. It was dimly lit by the afternoon light sneaking its way through the venetian blinds. Ella cooed her hellos as she does when she wakes from her nap to find both mommy and daddy looking down at her in her crib. I picked her up and we greeted her with our kisses and touches of affection. She happily accepted, being well rested, and motioned to sit on the floor with her books.

Lindsay sat on the bed and I in the rocking chair. We looked at each other. There was a moment of silence. It was peaceful for a brief moment; the world outside made its presence unknown. It was different from any other silence we have experienced together.

Lindsay spoke first. She uttered the words that have been recently swirling in and out of my own thoughts. When those words left her mouth and travelled across the small room, reaching my ears and grabbing hold of my thoughts, I couldn't help but stare deeply into her eyes and silently agree with every part of my essence. Before I could think of a response my mouth was already telling her that I felt the exact same way. Silence ensued, for there were not any words that could have been sufficient for the explaining of what we both felt.

"I've changed" were the uttered words.

There is no doubt that our experience up to this point and the experiences we will encounter are ones that few will know. The words that the English language lends us fail in their attempt to communicate the emotional spinning that is taking place in our lives. Our heads are spinning in one direction and our hearts in another...each seeking the other for reconciliation within their spin, they take us and leave us with the promise of more spinning. A never ending cycle, if you will.

The changes we are feeling as a couple, as parents, and as individuals were expressed more by the gaze we locked into for those brief seconds in the dimly lit room than by any words that we might seek to use. The only sound for those few moments was that of Ella "reading" her book and Ava turning the pages of hers. I knew exactly what Lindsay was telling me and she knew what I felt as well.

I wish I had the means to grab a hold of my thoughts and my feelings with something more than mere words or outward expressions...I have not that capability.

I only have what I have.

How do I~~
plan for her future,
as time spreads so thin and fine.

How do I~~
hold her in my arms,
while she's slipping through my grip.

How do I~~
take my mind away,
when the pressing never leaves.

How do I~~
find the words to say,
along the roads that have never been.

How do I~~

take it as my head spins one way

& my heart, the other.

How do I~~
provide what they need,
when the needs outweigh us.

How do I~~

keep my children safe,

knowing what I know.

How do I~~
reach for what is there,
without dropping what I have.

How do I~~
wake up in early morn,
once sleep has eluded me.

How do I~~
say that it's alright,
as gravity pulls her in its grip.

How do I~~
seek the silent peace,
once promised from afar.

How do I~~
take one day at a time,
without it taking me alive.

How do we~~
watch our child struggle,
as she watches us weep for her?

Sick (by Lindsay)

That's how I feel most of the time.

A constant knot of unease in my stomach.

The kind of sick you feel when you can't stop worrying about the future, both near and far.

The kind of sick that prevents you from falling asleep at night.

The kind of sick that causes you to lose more than 30 pounds in a matter of months without trying.

Now that the reality of SMA is starting to sink in, we're faced with not only the innumerable medical hardships Ella will face as well as the thought of losing her, but we're beginning to feel the stress of drastically changing our life as we know it to meet her needs.

Among other things, a wheelchair...

Not just any wheelchair, but a 300 pound power wheelchair. It will be an incredible piece of equipment for Ella. We can't wait to see the joy in her face the first time she tries it.

Her physical therapist has stressed to us how important it is for Ella to be able to move around independently, both for her emotional and cognitive development. Just because she can't walk (and won't be able to), doesn't mean she shouldn't be able to get around like every other 1 1/2-year-old can. She needs to be able to explore her environment. She needs to have as much independence as she possibly can. Her PT would like her in a power wheelchair between the age of 18 months and 2 years old.

Easy enough, right?

A 300 pound wheelchair. Not something you can lift in and out of the car. Not something you can lift up the two small steps into our house. Not something that will easily maneuver around the tight corners of our first floor. Not something that will fit in any bathroom in our house. Not something that will be able to go to the second floor or the basement.

That's ok, she's still a baby, we can just carry her around for a couple more years. But as time goes by, we're finding that it's becoming harder and harder to carry her for any long stretch of time.

Because of her lack of muscle tone, she can't help us while we're carrying her. When you pick her up, her arms can't push down to help, making her body slide right through your grasp if you're not applying enough force. When you try to hold her, she can't wrap her legs around your waist to help hold on, instead, they just dangle. Her trunk muscles aren't strong enough to hold herself upright all the time, so we're using our free hand placed behind her to catch her if she starts falling backward.

It's not the same as carrying a healthy toddler.

We're also finding that when we go places, there's not a whole lot for Ella to do. She basically has two options: be carried or sit on the floor in one place.

Ella has figured out that being put down on the floor means she's stuck there. And believe me, it is one of the hardest things in the world to see your 15-month-old daughter throw her head on the floor, crying in frustration, because she can't move where she wants to. It kills me every time.

So we can't wait for her to get a wheelchair. It will be the most wonderful thing for her.

But our car and house will not work for Ella in a power wheelchair.

I wonder if my stomach will ever feel the same again.

Cure SMA Awareness Bracelets...(by Lindsay & Michael)

Coming to grips with a diagnosis of Spinal Muscular Atrophy (known as SMA) has just begun for our family. We sit in wonder of the complexities of the human body; the delicate dance that nature has instrumented in all of us. We cry over thoughts that seem to overwhelm us without warning. We leave rooms full of people to try to gather our minds and once more step into reality. We defend ourselves from the twisting knot that travels from our stomach to our heads.

We look at Ella with a deep gaze that somehow penetrates the walls of SMA and brings us closer to our daughter; to our children. We teach Ava and Henry how to be gentle while still treating her like their sister. We let go of small pieces of dreams we had not so long ago and seek other dreams to grab a hold of. The lumps in our throats that form when we talk about Ella in terms of SMA cannot be quelled by anything except time.

Coming to grips is a long way off as we see it. The SMA hovers; at times hiding; at times visible and undeniable...it hovers.

Early on, when we found out that our third baby has a terminal disease...a disease that has eluded a treatment or a cure...we boldly told each other that we have to keep Ella alive until they find a cure. We made efforts to learn as much as we could about this disease called "SMA". We know a lot about it now.

We know that the leaps and bounds made in research for treatments and a cure have been possible largely by the efforts of those families affected by SMA many years ago. Their perseverance and desire to save their children has brought this disease to its knees...and we intend to bring it down for good.

Families of SMA (FSMA) was started some 25 years ago by one such family and has grown to be a leading organization serving all families affected by SMA and supporting incredible research efforts to find treatments and a cure.

We proudly and with every fiber of our being join them in their efforts.

Lindsay has designed three perfect bracelets in honor of Ella. Her efforts spanned several weeks, many late nights, and countless hours to create the finest outward symbol of our love and dedication to our family.

Through our family business, Mama Bracelets, we proudly bring these bracelets to you and many others. Mama Bracelets will lovingly donate a generous portion of every "Cure SMA" bracelet sale directly to FSMA. The remaining monies will be allocated to pay for any medical supplies, equipment, or necessary expenses for Ella.

Below you find pictures showcasing the

"Cure SMA" Collection.

Each picture is linked directly to our Mama Bracelets website page featuring that specific bracelet.



Cure SMA Collection

*********

Cure SMA Sterling Silver with Swarovski Crystals Bracelet

*********

Cure SMA Sterling Silver Open Circle Leather Cord Bracelet

*********

Cure SMA Adjustable Leather Bracelet with Silver Plate

A Step in the Right Direction... (by Lindsay & Michael)

Submitted by Lindsay...

Today Ella got her new AFOs (Ankle Foot Orthotics).

To say we've felt mixed emotions about this day would be an understatement.

On the one hand (a very large hand), we're getting something that will help Ella. The orthotics were custom made to hold her feet and ankles in the right position for proper development, as well as provide support for her ankles while we work on standing. She also got knee immobilizers, which will hold her knees straight while she practices weight bearing.

All around, these devices will be wonderful for her. For Ella.

But what about for us? Her parents…

Seeing Ella in these "braces" will put an image with the disease. It will make the disease much more real for us. It will make Ella look "not normal."

And what about when we go out? Will people stare? Will they ask questions?

I took Ella to get some shoes to wear with her AFOs (not an easy feat), and luckily I went to a specialty children's shoe store who has had experience with AFOs. It took a while to find a pair that could accommodate the bulky straps of her AFOs, but without being too big or heavy for her.

During the trying-on process, another mother with her young child came into the store (we had our backs to her) and she overheard the shoe salesperson explaining the difference between some of the infant shoes to us. The mother immediately came over next to us and said, "Oh good! I need to hear this information too. I have a new walker as well."

A new walker. Ella is not a new walker. Unless a cure is found, she will never be a new walker.

Up until this point, whenever we went out, we could somewhat escape the reality of the terrible disease that possesses our daughter. But now, going out will be different for us because it will be obvious to others, to strangers, that something is wrong with our Ella.

But we have to overcome these feelings of fear. We have to keep thinking that WE WILL BEAT THIS. Ella will beat this. So if people stare or ask questions, we'll feel proud of our Squishy's AFOs, knowing they're helping her.

This is only the beginning. There will be many more orthotics. There will be devices. There will be equipment. There will be wheelchairs. We need to have the right attitude. Starting now. And we do. :)

Sitting like a "big girl"!

Cute new shoes :)

.............................................................................................................................................

Submitted by Michael...

At 10:10 this morning I looked at my watch and thought to myself, 'Ella is getting her AFOs (Ankle-Foot Orthotics) right about now'. The world around me closed off for a brief moment as my stomach flipped in its usual way when I think about the reality of SMA.

I received an e-mail from Lindsay telling me that the appointment went well. I asked her not to send pictures or give me details via e-mail...we wanted to wait for me to get home; to be there in person to see the first step in a long series of steps for Ella.

I walked into the house. There sitting with Lindsay was my little girl, a bright smile on her face and she was wearing shoes! The AFOs extending from the shoes and up her legs to just below her knees. I came to her and touched her legs, wapping my hand around her calf, feeling her warm skin that was just behind her knee and above her knee-high socks coupled with the feeling of plastic. Her legs still felt the same, still squishy, still lifeless. I hugged her a bit more tightly.

The anticipation of the AFOs filled the past days and weeks. I knew that seeing them on Ella would be the first real taste of outward reality; the reality that her diagnosis is in fact. The process to acceptance is a tangled web of emotions each demanding my energies and attention, pulling me in directions that oppose each other.

Then I felt a new emotion. One that was always there but remained silent in its demand for me.

Pride.

I released my hug and looked once more at Ella. I looked past the AFOs, past the over-sized shoes, and past the SMA. I saw a delicate, fragile child. A child who takes delight in every accomplishment she seeks and conquers. I saw our Ella, our Squishy. I am proud of her. I am proud of us.

The pride in the loving knowledge that Ella is our child, one of three beautiful children, who will continue to fight to survive. The pride in Lindsay and myself for talking with each other to help ourselves take on the challenge of caring for her. Pride in the fact that we are taking the first step in physically fighting SMA.

Occupational Therapy (by Lindsay)

On Tuesday, Ella had her first occupational therapy session.

I was going into it with mixed emotions. We've had such an incredible experience so far with Early Intervention, and we absolutely adore Ella's PT, so I was thinking that there's no way we could be so lucky to get two outstanding therapists.

I was wrong.

Ella's OT, Aditi, is so knowledgeable about neuromuscular diseases. She is so caring and compassionate with Ella. We felt very comfortable with her from the moment she walked in our front door.

Aditi was very impressed, and somewhat surprised, with how strong Ella is. She said she was expecting her to have a lot less function than she did. Of course, we were encouraged by that :)

She explained to us about Ella's lack of "sensory" input from her muscles. Ella can feel anything and everything that touches her, however, because of her disease, she is unaware of her body position without seeing it. She said that if we close our eyes, we know our body position, but if Ella closes her eyes, she doesn't. She needs to see to believe.

Since Ella's motor neurons are dying, our job right now is to stimulate the ones she has as much as we possibly can. This means we need to get her weight bearing in her legs. We're to have her "bench sit" and practice reaching for things in this position, so that she can feel the effect of her weight going through her legs to the floor. We also need to massage her daily, to keep those sensory nerves stimulated.

We also mentioned Ella's "charging" to Aditi. This is when she sucks on her two fingers and uses her other hand to touch something "alive" (another person, the dog, or herself if no one is within "charging" distance). Aditi said this is Ella's way of getting that sensory stimulation by herself. She's craving it. In a sense, she really is "charging" herself.   

  

Charging at Target



 

Charging on Ava





Charging on Daddy

In the near future Ella will begin Aqua Therapy (with her current physical therapist) as well as have an evaluation by a nutritionist to make sure she's getting everything she needs, since she hasn't been gaining as much weight as she should be.

We're so grateful for the knowledge and compassion of Ella's EI  (Early Intervention) therapists. We finally feel like we're really doing something for her since she's started working with them :)