Hold On To It--Please...(by Michael)

I wish I could say Ella is sitting in her diaper only because it's so hot and we are trying to keep her cool.


Not the case.


She's like this because she has just finished throwing up her latest feed...again.


Lindsay and I just looked at each other as Ella let her feed go after an hour of it being finished.  A look of defeat washed over our faces.


Ella has not been holding down her feeds very well for quite some time now (weeks).  It follows no rhyme or reason.  Usually once a day (maybe two) out of the four feeds.  We are in contact with several people regarding this matter.  The puzzle is complex and frustrating.


The look of defeat on our faces came from the knowledge that we know every bit of nutrition Ella takes in is vital to her...more so than the average person.  Her system is already so compromised by SMA that any loss is significant.


I suppose I could go on and on about this one, but really--the look on her face in the picture above says it all...doesn't it? 

Mama Bracelets Re-Opens!!

We are very excited to announce the re-opening of our store.  We closed several months ago due to the fact that our youngest daughter, who has been diagnosed with Spinal Muscular Atrophy (SMA) Type 2 developed RSV and pneumonia.  She was admitted to the hospital for a week and returned home with many medical machines to help keep her healthy.  We have been spending our time since her hospital release learning how to best use these machines as well as developing a new daily routine for our family.  

Ella Sabine Casten
Born:  June 10, 2010
Diagnosed with Spinal Muscular Atrophy (SMA) Type 2:  August 12, 2011

As of late, we have also taken a good close look at what we wanted to do with Mama Bracelets.  We love our business.  We decided to keep going with it and renewed our LLC for another year.  We also looked at what our customers were purchasing since we opened and adjusted our product line accordingly.    From our research of Mama Bracelets' sales we noticed many people really enjoyed our hand-stamped necklaces...we love them too!  We also noticed that the "Support & Fundraising" part of our business was a big hit with many people across the country and in other parts of the world.  Making products that carried monetary donations to organizations proved to be very fulfilling for us.

With that information at our fingertips we have decided to continue making hand-stamped necklaces, as they were by far the most popular hand-stamped product we carried.  We also will continue to make the "Cure SMA" bracelets.  These hold a great personal value to us and help fund research to find a cure for SMA.

We are anticipating designing new products...please check our website frequently and/or "like" us on Facebook to keep up to date!

Our current product line consists of the following (pictures are link directly to the product page!): 

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Hand-Stamped Necklaces (NEW!)

  

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New "Cure SMA" Products

  

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Discontinued "Cure SMA" Products (Limited Quantities!)

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"Cure SMA" Update

We are very excited to let you know that through orders from across the country for our "Cure SMA" bracelets, since September (2011), we have donated $2214 directly to Families of Spinal Muscular Atrophy (FSMA) to help them fund research seeking treatments and a cure for this devastating terminal disease that strikes children!

Mama Bracelets will continue to offer the exclusive "Cure SMA" bracelets which carry a 30% donation directly to FSMA.

Links:

Learn more about FSMA at: http://www.fsma.org

Purchase a "Cure SMA" bracelet at: Spinal Muscular Atrophy (SMA)

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Click here to visit us on Facebook


Click here to visit our blog


Click here to visit our YouTube page

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Dear District 205...

Ella Sabine Casten

Born:  June 10, 2010

Diagnosed with Spinal Muscular Atrophy (SMA) Type 2:  August 12, 2011

Dear Colleagues,

My  11^th year teaching in District 205 winds down and I find myself thinking about the many people, seen and unseen, that have reached out to my family in one way or another over the past nine months.

My name is Michael Casten.   I teach 4^th Grade at Lincoln School.  My daughter, Ella, was diagnosed with Spinal Muscular Atrophy (SMA) Type 2,  just days before our students started this past school year.  Prior to walking into Lincoln only a handful of people knew of Ella’s condition.  Word spread quickly as people began wondering what they might do in order to show their concern and care.

SMA is a progressive, degenerative, terminal disease that has a prevalence rate of every 1 in 6000 live births being affected.  One in 40 people are carriers of the recessive gene responsible for this devastating disease.  To date, there are no treatments and no cure.  It has been named the #1 genetic killer of children (under the age of two) alongside being  the #1 neurological disease (of over 600) that is closest to a cure. 

In general, SMA causes the motor neurons responsible for voluntary movement, as well as muscles responsible for eating and breathing, to slowly die--causing extreme atrophy of muscle groups and eventually death; oftentimes children die due to respiratory complications.

My wife Lindsay (a former Lincoln School Teacher) and I found ourselves extremely fortunate to be part of a community that has opened their hearts and goodwill to us.  We are still overwhelmed with positive emotions regarding how so many of you have shown your care, concern, & compassion.

Whether you thought of us, offered a prayer for us, participated in an event to raise funds, dropped a note to us, lent us an ear, a smile, or a shoulder, spoke with others about us, read our blog, shared our blog, or are reading this and learning about Ella for the very first time…we cannot find the words that truly express our feelings of gratitude and comfort that fills us when we think about you and all you have done.

To date, Ella continues to develop cognitively as any other typical child her age.  She loves to play with her siblings, sing songs, and count.  She joyfully  plays with her favorite toys, watches her videos, and explores her world (in a 311 lb power wheelchair!).  Physically, Ella works wonders with the challenges that face her.  She keeps a spirit about her that draws people close—to her and to each other.  Her world of physical care is constantly changing as her disease progresses and she accepts it with grace and good nature. 

As the summer drapes itself over us we will all go our separate ways until the next school year.  Some of us will see one another, others will disappear into the months ahead, and still some of us will be enjoying the fruits of retirement.  Wherever you find yourself we sincerely  hope that  the incredible care, concern, and compassion you have afforded our family these past nine months meets you in the places you find yourselves.

Sincerely,

Michael, Lindsay, Ava, Henry, & Ella Casten

P.S.

One of our goals since Ella’s diagnosis is to spread awareness about SMA.  Until our daughter was diagnosed, neither of us, nor our family and friends, had ever heard of this terrible disease.  We strongly feel that awareness fuels the engines of progress.  Progress toward treatment options and a cure.  Please feel free to keep up with Ella’s life through our blog, “Ella’s Corner” and please feel free to share it, and her story, as you see fit.

If Only for a Few Seconds...(by Michael)

She knows how it feels.  To put weight on her feet.  She knows how it feels.  To be vertical.  She knows how it feels.  To let her trunk muscles stretch.  If only for a few seconds.


If only for a few seconds she can experience what you and I feel everyday without us even thinking about it.


If only for a few seconds she can look at the world from a different perspective; a standing perspective.


If only for a few seconds she can gather pride in herself doing what everyone else does.


If only for a few seconds.


The beautiful thing about photographs is that they capture a few seconds and keep them forever.  They allow us to relish in a moment that hardly existed.  Photographs bring the time needed to look deeply at what is before us, soaking in each aspect of the event; finding fresh nuances not previously noticed.


When I saw the picture above I thought she had been standing for longer than she really was.  I looked twice and searched for the ankle weights and found none.  I wasn't quite believing what I was seeing.  I learned later that she was holding her own--for a few seconds.


Such a glorious few seconds.  A few seconds that open the gates for more seconds just like it.  A few seconds that defy SMA at its core.  A few seconds that have been captured and will be held onto as inspiration.


Many people in the SMA community speak of "battling" this disease.  They call it "fighting SMA"; affected kids are often referred to as "warriors".  The connotation behind these phrases brings to the mind a very active and intense scene; and rightfully so.  SMA and the challenges it brings can be extremely intense; it is very much like fighting a battle.  There are, however, moments of victory that are quiet and unassuming.  These few brief seconds pictured above, as small as they are in relation to her lifetime thus far, hold equal, if not more, promise and courage that any battle our warrior has fought thus far.  


Her warrior status in this moment is one of quiet determination.  Her battle lies two-fold...always against SMA and gravity.  Her fight breaks open the future.


Every child, every person, every warrior, that has and is fighting the battle against SMA knows that if for only a few seconds they can do something previously denied them by this disease then they have moved mountains.


Well done Ella.  Mommy & Daddy are proud of you.  And you did it for those beautiful few seconds.    

The More Things Change...(by Michael)

The more things change the more they change.

I wish I could use the more common form of that saying; the one we all know and use, "The more things change, the more they stay the same.", but it simply doesn't apply here.


The past four nights have been filled with endless thoughts of what we are now facing in terms of Ella and SMA.  The past four nights have found us awake several times each night caring for her, even while taking shifts.  The past four nights have brought to us the reality of what it means for a loved one to have a degenerative, progressive, terminal disease.


Our multi-disciplinary clinic brought with it a host of changes.  These changes are necessary.  The nature of the disease is causing our little girl to require more intense interventions.  Of course, this means that whatever "routine" we had going up until that point changes.  


The way we feed her is changing.  The manner in which we have been bathing her has changed.  How we hold her and pick her up has changed.  Our nighttime routine and equipment that is required for a healthful sleep has altered.  The equipment that she will need very soon has changed more quickly than we anticipated.  Just when we think we have something solidified in her life...it changes.


While change is normal and to be expected, the types of change that occur with a child diagnosed with SMA affects their very life...directly.  The pressure upon us to make sure we are doing the very best for our Squishy mounts itself upon our shoulders.  It steals our sleep, tries our patience, pushes our creativity to the limits, exercises our common sense methodically, and slowly taps away on our peace of mind like a small hammer tapping a nail...tink...tink...tink...tink.


The more things change, the more they change.  The funny thing about it all is I am somehow becoming more used to this perspective.  I still wish I could use the more common saying, though.  In fact, as I was getting Ella dressed for bed this evening I was thinking about that saying and I found something that would apply...


Her.


Ella.

The more things change, the more they stay the same.  Wrapped up in the changes that surround her life like the bath towel surrounding her, I realized that she has remained the same.  She has remained the delightful, loving, and smiling child that God has intended her to be.  

Last Day (5.20.12)

Today is the LAST DAY to order an 

"ELLAwareness for SMA" t-shirt.

If you would like to purchase an "ELLAwareness for SMA" t-shirt, designed by the talented 'Gibson Design', to help raise awareness about SMA please know that we will be placing the one-time order on Monday, May 21, 2012.

If you are attending the Walk-and -Roll Event with us on June 10, 2012 your t-shirt will be free!  We simply need to know the size(s) for each of your "walkers".

If you are unable to attend the event and would like a t-shirt please e-mail us your size(s) and mailing address to:  ellawareness@gmail.com (Click here to open your e-mail program)

Payment can be made via PayPal using the same e-mail address as the recipient: (ellawareness@gmail.com).

With gratitude,

The Casten Family

SMA Clinic at Children's Memorial Hospital (by Lindsay)

Yesterday we took Ella to her first multidisciplinary SMA clinic at Children's Memorial Hospital.


We've done this type of clinic once before at Shriner's Hospital last fall.


In a nutshell, Ella is seen by many (8-10) doctors, nurses, therapists and specialists all in one visit.  Her "team" is able to talk with one another while examining Ella.  


It's a lot to take in (overwhelming would probably be a better word), but nice to see everyone at once and have the team members be able to bounce ideas off of each other.


These were the outcomes of Ella's appointment:

• Ella is doing very well compared to how she was back in January when she first saw Dr. Kuntz (her neurologist).  It seems that her regression has plateaued (yay!!) and that she has even gained some strength back that she had lost (WOW!).  We owe this in large part to her new amino acid-based diet that she started a couple months ago.  The base of this diet is Vivonex Pediatric, but we will now be trying a different formula called Tolerex, which we have heard can have even better results for children with SMA.  Ella's nutritionist couldn't be more excited about how positively Ella has reacted to the new diet!
• Ella's spine is continuing to curve.  Without even having x-rays done of her spine or seeing the orthopedic surgeon (he wasn't at the clinic yesterday), it was decided that she needs a TLSO brace for her back.  This is a hard plastic brace that will be custom made for her to support her trunk, keeping her spine as straight as possible.

The othotist examining Ella's spine.

• It was also decided that Ella needs to be wearing her AFO leg braces while she sleeps (both at night and at nap time).  Her calf muscles are beginning to tighten a little too much and we want to keep her legs in proper alignment.  During sleep, her feet tend to drop more, causing this tightness to increase.

Ella sleeping with her AFO braces on.

• They would like Ella to get Ischial Weight Bearing KAFO braces.  These braces go all the way up her legs and support her hips to help her with standing.  Weight bearing is so important.  
• Currently, Ella has OT and aqua therapy, but they would like her to also be doing land PT once or twice per month.  The aqua therapy is much more beneficial to her at this age (she goes twice per week), but it's still important for her to have some land physical therapy.  
• She will be evaluated by a speech pathologist who specializes in eating to help make sure she is able to effectively chew and swallow without choking.
• She is going to be trying out a couple new masks for her BiPAP, as her current one seems to be causing her discomfort.  We tried a new one a couple weeks ago (the Neotech Cannula), but unfortunately it wasn't giving her the support she needed. 

Trying out her new "Pixi" mask tonight.

• She will be needing to get an adaptive car seat, as her current one doesn't provide her with the support she needs (mainly in her trunk).  
• We have a long list of lab work to be done in the next week or so.
• We will be having spine x-rays taken as well as scheduling an appointment with the orthopedic surgeon who was unable to be at the clinic yesterday. 

Phew!  We definitely got a lot accomplished yesterday, but now we have quite a long to-do list! 


For now, Ella will be going to this multidisciplinary clinic every three months.  So the next time she goes (in August), she will be going to the new hospital location downtown (Ann & Robert H. Lurie Children's Hospital of Chicago)!


Also, just a quick reminder that you only have TWO MORE DAYS to order "ELLAwareness for SMA" t-shirts!!  We have gotten many orders so far (thank you!!) and the deadline is this SUNDAY, MAY 20th!!!  For details, click here.  

"ELLAwareness" T-Shirts...Act Fast!!!

We are very excited that we will be ordering "ELLAwareness for SMA" t-shirts for the upcoming FSMA Walk and Roll on June 10th!!


Thanks to the incredible design talents of Gibson Design, we are proud to present the official "ELLAwareness" logo:

The t-shirts will be available in adult (S-3XL), youth (XS-XL) and toddler (2T-4T) sizes as shown below (all shirts will be purple):

Adult sizes, front view

Adult sizes, back view

Youth/Toddler sizes, front view (nothing will be on the back)

However, due to the proximity of the event, we have to place the order by this upcoming Monday (May 21st)!  

This means that anyone who would like a t-shirt has to let us know by THIS SUNDAY, MAY 20th!!!!

Thanks to a VERY generous donation, everyone who attends the FSMA Walk and Roll for team "ELLAwareness for SMA" will receive a FREE t-shirt (but we still need to know your size before we can order)!


We are happy to order shirts for anyone else who would like them to help spread SMA awareness :)  The prices are as follows:


Adult S-XL, $10 per shirt
Adult 2XL/3XL, $13 per shirt
Youth XS-XL, $7 per shirt
Toddler 2T-4T, $6 per shirt


As of now, we are only placing this one-time order.  So if you or anyone else you know would like a t-shirt, we have to have your size(s) and payment (payment is required only if you are NOT attending the Walk and Roll) by this Sunday (5.20.12)!!!


Here's how to order:

1. Send an email to ellawareness@gmail.com.
2. Include your name, number of t-shirts, and sizes.
3. Indicate whether or not you are attending the Walk and Roll event for team "ELLAwareness for SMA" on June 10th.
4. Only if you are NOT attending the event, go to www.paypal.com, click on "Send Money" and follow the prompts on the screen (entering the total amount for your order).  When it requests the email address for where the payment should go, enter: ellawareness@gmail.com (*You do NOT need a PayPal account to order).

Please let us know if you have any questions!

Thank you so much!!


Please take a moment to watch this ELLAwareness for SMA video lovingly created by Michael...

Lost Photographer! Can you help?

UPDATE:  THE PHOTOGRAPHER CONTACTED US--YAY!

Back in early winter, we received an incredibly generous gift from an anonymous donor.  


A family photography session with a professional photographer.  


We received a letter from this photographer explaining the details of the gift.


Since this is not something we typically do (or have EVER done), we wanted to make sure to use this photography session at an ideal time.  We were thinking spring or summer.


We put the photographer's note away, knowing we'd be taking it out again in the near future.


Which brings us to now.  We have searched high and low for the note from the photographer, and we have been unable to relocate it.  We're thinking it got mixed up with medical documents/paperwork somewhere.


This puts us in an awkward position.  Obviously the donor wishes to be anonymous, and we completely respect that.  At the same time, we absolutely want to use this incredible gift (as I'm sure the donor would like us to)!!


So our request is this...if you are that person, would it be possible to notify the photographer and request that they send us another note?


We feel pretty embarrassed for this request, as we feel AWFUL for misplacing such a valuable note in the first place.


Either way, thank you, from the bottom of our hearts for your incredible thoughtfulness :)


-Lindsay & Michael

The zoo...and now I need a nap. (by Lindsay)

Every year in May, I end up taking the kids to Brookfield Zoo.  And every year in May, I swear that I will never again take the kids to Brookfield Zoo in May.


The month of May is BY FAR the busiest time of year for school field trips.  ESPECIALLY at the zoo.  It's always a mad sea of people, trying to navigate your way through while keeping an eye on the little ones.


Well, we woke up this morning and Ella's aqua therapy had been cancelled.  I saw that the weather forecast was 82 and sunny.  It was the perfect combination for a morning at the zoo.  So I thought, "What the heck, it's not THAT bad when it's crowded.  Let's go!"


Sigh.


Once we got there, it literally took us 30 minutes to get from our car to the inside gates (and we parked right in front in a handicapped spot!).


Before we left, I had to do a little planning to figure out the best way to walk around the zoo, on my own, with all three kids (one in a power wheelchair).  Ava and Henry aren't quite old enough to walk the entire time, as their little legs tire quickly.  So I decided to take the single jogging stroller with the "Buggy Board" that attaches behind it for the other child to stand on.


Anyway, it was a complete madhouse.  It was hard enough for me to navigate the stroller through the sea of people, let alone help coach Ella in her power chair.  She can drive and navigate just fine, but she was SO distracted by the MANY, MANY people staring at her and making comments.


I knew going into this that we would receive some looks...it's not every day that you see an almost two-year-old driving a 300-lb. piece of equipment independently!  Whenever we've been out and about with her power chair so far, we usually notice some expressions from others as well as encouraging comments, such as, "How old is she???  Wow, that's incredible!!"


It's never bothered me.  And I never wanted it to bother me, because I know that's just part of life with a special needs child.


But today was different.  Today was nothing but kids.  Kids who don't know any better.  Kids who stare.  And at first the staring and comments hit me pretty hard.


Some of the comments that stood out...


"Look at that baby!"


"What's wrong with her?"


"Why is she in that thing?"


And then the worst was to hear parents/chaperones saying, "Shhhhhhh," while hurrying their kids away.


After the initial shock of SO MANY comments, I was kind of used to it and we just kept going.  And as the crowds spread out, the remarks seemed to be more positive...


"Is she controlling that BY HERSELF??"


"How amazing!!"


And one boy even said, "She is SO lucky!! I wish I had one of those!"  Obviously, he didn't know WHY she's in the chair (and he probably wouldn't think she was lucky then), but it was still cute just the same :)


Anyway, we had been out for about an hour or so, and Ella started getting tired.  It hit her fast and hard.  She needed me to tilt her chair back because she couldn't hold her head up anymore.  And then she was too tired to push the joystick.


Uh oh.


Now what?  Of course, it's no problem for me to control her chair from the back.  But I also have a stroller to push.


So, I had to do both.  And let me tell you, it was extremely challenging to control this huge power chair with one hand AND push a stroller with the other hand, without having them bump into each other!


Luckily it was time for lunch, so we were able to take a little break.  But once lunch was over, Ella was still too tired to control her chair herself.


So it was back to double pushing for me.


At one point, I asked Henry if he would push the stroller for me and of course he was SUPER excited (he LOVES to push things).  But he couldn't do it with Ava sitting in it, because she was too heavy, and of course, Ava (Miss Drama Queen) quickly became too tired to walk.


So you guessed it, more double pushing.


Obviously, it was time to go.  I wasn't about to do this around the rest of the zoo.  So we made our way towards the exit.


Now anyone who has gone to the Brookfield Zoo probably knows about the ramp going DOWN to the underpass tunnel and then back UP to the parking lot.  Not an easy feat with anything on wheels (or even just yourself) after an entire morning of walking and chasing kids.  But what choice did I have?


Luckily a sweet woman saw my attempt and immediately came to my rescue and pushed the stroller for me until we got to the parking lot.  God bless her!


So it was an exhausting morning to say the least.  But I definitely should add that ALL three kids were INCREDIBLE!  They were on their absolute best behaviors the ENTIRE time!  I was so proud, and I made it no secret to them.  That fact alone made the entire morning well worth it!!


Here are some pictures and a silly video from our adventurous morning at the zoo...

Ella watching the bears

Ella watching the sea lions

Henry and Ava brushing a goat

Ella petting a goat

Ava and Henry with another goat

One goat wouldn't stop rubbing it's head on Ella's wheels and she thought it was SO funny :)

They really enjoyed the goats :)

In the primate house checking out some monkeys

Henry helping out his mommy :)

Ella laughing at the honking goose (she thought it was doing something else, haha):

Mother of the Year on Mother's Day (by Lindsay)

We have had a very nice Mother's Day weekend.


It started for me yesterday with an INCREDIBLE day at the spa (thank you, Ella's Angels!!!).  I had a day of rest and relaxation, which included a mani/pedi, swedish massage, and hair cut & style (with a delicious lunch in between)!  It was pure bliss to say the least.  I came home feeling utterly refreshed and rejuvenated.  It was just what I needed :)


This morning we enjoyed the early church service and then went off to The Morton Arboretum for a picnic with my parents, sister and brother-in-law.  It was a beautiful day with beautiful company :)


Later today, we took a nice walk as a family and when we came home we decided to continue to enjoy this beautiful weather out on our deck.  Ava and Henry were playing in the yard, while Ella, Michael and I were each sitting on our own chair on the deck (Ella was just about finished with her late afternoon tube-feed).


After a few moments, Ella decided she wanted to "Sit Daddy!" (a VERY common occurrence as she has quite the obsession with Michael).  


I decided I would pick Ella up from her chair and place her on Michael's lap, as it can sometimes be a little hard to pick her up yourself to then sit back down with her.  


As soon as I started to lift her, I felt a slight tug and then heard a "pop".  I assumed her feeding bag tube pulled off of her extension tube.  Then Ella started screaming and Michael immediately yelled, "It's off!! It's off!!"


I looked down, and formula was projectile pouring out of the place where Ella's g-tube button had been.  That's right..."had" been.  


The tube had gotten stuck on the chair and when I lifted her, it pulled the button (balloon and all) right out of her little tummy :(


Oh. My. Gosh.  How's that for Mother of the Year?!?  I felt AWFUL.


We've heard this can happen.  But there was so much coming out of her belly (including some blood) and we didn't know if/when it would stop and if we should put her in our car.  So we immediately applied pressure to the hole and called 911.  The EMTs came over and by the time they got there, the fluid had stopped coming out.  Phew!


But we had to get to the hospital quickly so that the opening didn't close back up, requiring her to have the g-tube surgery redone.  Since the surgery was so recent, it could close very quickly.  


I decided to take her myself, rather than her go in the ambulance, since the fluid had stopped coming out.


We got to the ER at Edward Hospital (I had grabbed her spare MIC-Key g-tube just in case) and we were immediately brought back to a room, despite the unusually crowded waiting room.


One of the first questions out of the nurse's mouth was, "You don't happen to know the size of Ella's g-tube button, do you?"


I replied, "No, I'm sorry, I don't.  But I brought her extra one here in this box."


The nurse's face lit up as she said, "You don't know how much easier you have just made this for us!!  You definitely get Mother of the Year!  And on Mother's Day, too!"


Ha.  Yes, because I'm the reason we're here in the first place...


But maybe it helped even it out a bit.  Maybe ;)


Anyway, our sweet Squishy was the usual trooper, of course.  And as always, everyone was completely blown away by her vocabulary :)


Within a few minutes, they had the new g-tube put in (with NO problems) and we were out the door within 30 minutes of arriving.


At some point, we'll be taught how to change the g-tube button ourselves, so if this ever happens again (hopefully not!) we can save ourselves the trip to the ER!


So even though we had a little unexpected (but brief) panic, all-in-all, it was a pretty good Mother's Day weekend :)

After arriving at the ER

All done!