Eight Sleepless Years---continued...(by Michael)

Back into the depths of sleep deprived nights we go...

Since the diagnosis of SMA we've often heard "horror stories" regarding overnight nursing which was one reason we didn't pursue that option earlier.  However, the lack of sleep over the years has taken its toll...so recently we decided to explore the night nursing option.  

We have gone 8 full years without a full night's sleep.  Ever since Ava was born in 2007 we have had a baby in the house keeping us up---and now SMA keeps us up.  Eight long, tired years.

Through much paperwork and some red tape we finally received notice that Ella qualified for overnight nursing care.  Once it started we could hardly believe the difference we felt after just a few nights sleeping a full 8 hours...uninterrupted.  Wow!

Then...the nurse began taking unauthorized nights off followed by a stretch of no-shows.  It was hard enough not having the nurse show up---but she didn't notify the agency or us about her absence.  Each of those nights we were up waiting for her to come (her arrival time was 10:00pm)...so by the time we were notified she wasn't coming it was 10:30 or later.  Couple the late bed-time with numerous wake-ups to care for Ella throughout the night we found ourselves right back to days of operating on limited rest.  

Needless to say we spoke with the agency.  It won't be until after the new year until we start the process of finding a new nurse and hopefully a back-up (although simply getting a primary nurse is hard enough as it is let alone a back-up).  Of course, when we go through the interview process we will be absolutely sure to indicate our expectations as clearly and respectfully as we can.  

Ella deserves the care overnight and our family must get a good night's rest in order to function to our fullest each day; our kids need the rest to learn, Lindsay and I need the rest to teach, and all of us need the rest in order to run our daily "life with SMA" as smoothly as possible.

Tired & Sleepless in Naperville...

Natural Leanings...(by Michael)

     The mailbox brought a Christmas card to our house.  It came from another "SMA Family".  Much like our family there are three kids and the youngest has SMA.

     I admired the beautiful pictures of the children, read the words written, and shared it with Lindsay.  Later I returned to the card and looked more closely at the pictures.  Beautiful photography captured the three children sitting on the ground; the two older ones on either side of the younger.  I noticed how the little one was nestled lovingly in-between the two.  To an unfamiliar eye one would never know that the baby of the family had a neuro-muscular disease which can compromise the ability to sit unassisted.  I knew though.

     I knew and I was amazed at how the siblings were positioned to provide sitting-support for their younger sibling.  They all "leaned" on one another in a way that would depict that all three children had developed typically up to this point in their lives.  The smiles in their eyes spoke of a love for life, family, and the Christmas season.  They were looking slightly off center of camera as if captivated.  

     It brought me to contemplate the role that siblings play in the complex world of SMA.  Our own children, Ava, Henry and Ella, have similar moments captured on film...the "untrained" eye would never suspect anything was awry based on the picture itself.  The physical support speaks well of the support siblings knowingly and unknowingly provide for their affected sibling.

     The type of bond that is forged between unaffected and affected siblings in terms of SMA is an amazing phenomenon to witness.  With the innocence of childhood, the unaffected siblings take it upon themselves to care for one another in ways that simply cannot be taught.  The affected sibling provides an avenue for the development of a compassionate, nurturing environment. The whole time, however, they treat each other as typical siblings might--fighting, bothering, and all that comes with brotherhood and sisterhood.

     We can learn much from the simple dedication an unaffected sibling demonstrates towards an affected sibling.  We can take much from their natural examples of caring without hesitation, supporting without distraction, and loving without self-denial.  

     Looking at the Christmas card I couldn't help but project the image into the future...for those three kids and for mine.  The scene that enveloped me was one of caring, nurturing adults who leaned on one another during all the times of their lives.

Merry Christmas...

3am...(by Michael)

When Ava was first born, Lindsay and I made the decision for Lindsay to be a stay-at-home mom.  Of course this meant we'd have to find a way to make ends meet with one salary rather than two.

We were committed and took the plunge.

Every night, for close to nine months, I would wake up at 3am, without fail--no alarm clock--just woke up.  I would find my way downstairs to the basement office.  I'd wake the computer and open up our budgeting program.  I would crunch numbers, create and delete categories, move budgeted money around, research ways to save a buck, etc.  Each night I got closer to creating a scenario that would allow us to operate comfortably on my one teacher's salary.  

Once the budget was in place and proved its worth, I no longer had to wake up at 3am.  Of course, being a habit now I still occassionaly woke up at 3am...but over time that dissipated.

Over the next few years we had two more children, Henry and Ella.  The nights once again became interrupted.  But it was temporary.  Nighttime feeding, changing, and comforting soon became less and less as the kids grew older.

We decided we would have no more kids after three and thought, quite naturally, that our sleeping life would resume to a typical night's sleep.  

Enter SMA.

The diagnosis of SMA for Ella brought with it much.  One aspect that we never dreamed of was how it would affect our sleep.   Ella can't turn herself at night.  She naturally relies on Lindsay and me to turn her.  We lovingly oblige.  Sometimes it's twice a night, sometimes six times...we never really know.  We've gotten used to the up and down throughout the night...it is exhausting though.

Lately, however, there's been a change.  Ella has been experiencing significant knee pain.  Our suspicions lie with her hip surgery in that the thigh muscles may have tightened up during the recovery time and have been causing pain in the knee area.  We have entertained the idea that it may be "restless leg syndrome" which has been linked with major surgery in the hip region.  We are on the path to finding out which it is or if it has a different origin...nonetheless it keeps her up during the night in discomfort...and in turn, keeps us up as well.

Throughout the night we are turning her, massaging her legs, applying a heating pad (which means we have to stay up in the room with her while it's on), and taking care of the usual routines with her machines and, well...sleepless in Naperville is all I can say.

What seems strangely funny to me though is that almost without fail...usually every night...right around 3am...it all stops and she falls deep asleep.

What is it about 3am?  

A Minute; A Few; and Many...(by Michael)

A heavy sigh sets in as I stare at this blank screen...soon to be filled with thoughts. 

The past three months have brought much to our household.  Two major surgeries, two new jobs, a new volunteer position, and the start of a new school year.

Ella's surgery was long; her recovery even longer.  We were diverted from our expectation of a 4-6 week recovery and instead found ourselves with a 12-week recovery...and it's not quite over.  During surgery her left femur broke, leaving a gap between the top portion of the femur and the bottom portion of the head of the femur.  This gap required extra time to fill in with new bone.  It also happened to be the side where hip socket reconstruction took place.  It's slow going yet she's getting better each day.

Lindsay had foot surgery as an old gymnastics injury resurfaced requiring bone shaving, bone cutting, and plate insertion.  Her surgery went well although the pain she has been experiencing has been hard for all of us.  Place on top of that having to sit idle when she's so used to being an active, involved mother and wife, and you have the recipe for long days and eagerness for healing to move quickly.  With the good sense that she has she took to heart the doctor's advice and allows herself to be idle as Ava, Henry, Ella, neighbors, friends, family and I take care of her and the house.  Her doctor gave her the "go ahead" to return to work and she approaches that prospect with excitement...she loves her new job as an Assistant Preschool Teacher at The Ann Reid Early Childhood Center. 

Lindsay also is working as the Sunday School Coordinator at our church.  She has put together a comprehensive program utilizing a curriculum that suits our needs quite well and coupled that with her incredible organizational skills.  The first few weeks of Sunday School have gone quite well.  I should know...I, myself, have volunteered to be a teacher.  It's been rewarding and I look forward to more!

My school year has gone well so far.  I have a class full of energetic kids.  They have a curious sense of humor that seems to mesh well with my sarcasm.  They are wonderful writers which I am really ecstatic about.  I look forward to growing with them this year as teaching always affords growth in both student and teacher.

Ava, Henry and Ella have all started school as well.  The three Casten kids now roam the halls of the same school down the block.  I attended their conferences and am happy to report that they are all doing well.  Yes, there are areas that we need to work on with them and for that we are thankful---for in that work we can help our children grow and learn.

A minute to sit, a few to write this post, and many more to come as we work toward healing, learning, and growing. 

Making Progress (by Lindsay)

Slowly but surely.

Ella has been completely flat, 100% of the time, for the past 5 1/2 weeks. 

Today she had another follow-up appointment with her orthopedic surgeon, Dr. Grayhack.  He said her bones still have a ways to go in terms of healing (probably another 6 weeks until almost fully healed), but we can start having her sit up very gradually over the next two weeks! 

Yay!!!

Michael and I have discussed when Ella should start kindergarten and we've decided that we are not going to have Ella start this Wednesday with the other kids.  Caring for Ella while she's transitioning to sitting is quite involved.  While the staff at Prairie Elementary are ready, willing and certainly capable of caring for Ella, we feel with her still being in diapers, having continuous  feeds (instead of quick bolus feeds throughout the day), and knowing that moving her is still precarious at best, we feel that at this point it's best to have Ella cared for one-on-one at home. We're hoping that she will be able to be in her kindergarten classroom two weeks from now, once she's (hopefully!) able to tolerate sitting in her new power wheelchair for an entire school day. In the meantime, my incredible mother is going to be with Ella while the other two kids are in school and Michael and I are at work.

The staff at Prairie Elementary has been nothing short of wonderful!  Everyone is looking forward to when Ella can come to school and we have no doubt that the members of her team will care for her with both compassion and professionalism.

Thank you all so much for your continued support and prayers!  We are truly blessed!

Ella sitting at a slight incline

 

Ella's brand new power wheelchair - a Permobil C300
(waiting in the wings)

Three...(by Michael & Lindsay)

Three more weeks.

Three more weeks that Ella has to stay lying flat, 100% of the time, with her brace on most of the time.

Why??

During surgery, when the bracket was being placed into the femur head (on the left side) the bone cracked.  The surgeon had to move the bracket to a different spot in the bone.  The break resulted in a space between the femur and head of the femur.  This space now needs to build bone.  Hence, we need for her to lie flat for a longer period of time.

At the end of the surgery we were made aware of the cracked bone, and we weren't surprised by that news.  Simple fact...kids with SMA have more brittle bones for the mere reason that maximum bone density isn't achieved due to lack of gravity and pressure from not standing or walking.  Just another way they are more vulnerable than their same-aged peers.  

And while were were not surprised by the cracked bone we were surprised that she must remain in the same position for three more weeks that she's been in for two weeks already.  Surprised and feeling low.  

We're tired.  It's exhausting caring for her through the night...although the nights are slowly improving.  The days, thankfully, are going well.  She's happy and basically pain-free.  The surgeon explained that in order to get to the bone, especially the reconstruction of the left socket, the muscles had to be separated from the bones..."it's a messy thing" he said, "and it takes time for those muscles to heal themselves...and it's painful."  Yes--we know.

And poor Ella...it is difficult for her to sleep and she keeps getting pumped full of narcotics to battle the pain.  Her screams are deafening and heartbreaking...she fights so hard.

So our timetable has altered some.  Getting her into a sitting position won't start until that bone is healed.  Throw into the mix that school (for all 5 of us) starts in 3 weeks and we now have to begin prepping her teachers and staff for her to come to school in a state unknown to us at this point.  Will she still be in the medical stroller or able to sit in a wheelchair?  Will it be a combination of the two?  

Only time will tell...three weeks time.


 

"This, too, Shall Pass"...(by Michael)

"My head grew heavy and my sight grew dim. 
I had to stop for the night."

 The  Eagles; "Hotel California" (1976)

     We've researched why it is that pain seems to amplify itself overnight...there doesn't seem to be a definitive answer.  Some speak of the fact that we tend to breathe inhale the carbon dioxide we expel while we exhale thereby increasing the size of cells in the body...which can affect pain receptor behaviors.  Others talk about the fact that one is alone, in the dark, while everything is still and quiet...the focus easily shifts to the pain which is the only stimuli.  Still others postulate that daily activity tires the body out, thereby making pain more pronounced during the night.  Theories abound.

     Whatever the reason it is a reality in our world these days (or nights to be exact).  Ella's pain is exacerbated overnight. Of the 8 nights we've been home we have had two uneventful and 6 horrific nights.  We've systematically changed only one variable at a time to pinpoint what works best to alleviate her pain and allow her (and us) to sleep.  It's a tricky path to traverse as medications have side affects that we must keep in mind, SMA has "protocols for care" that we must follow, and communication about pain with a tired, medicated, 5-year old is as difficult as it sounds.

     Our nights are filled with medication reminders sounding their alarms via our cell phone apps.  They call for action every 2-3 hours as Ella is currently on 5 medications to manage pain and allow for maximum comfort.  Doses are small because she is small. A balancing act of rotating medications takes place in order to maximize their intended function while maintaining her homeostasis.  In the meantime, "our heads grow heavy and our sight grows dim".

     While dressing one of her incision sites we did notice that while one of the incisions is clean the surrounding skin is chaffed, raw, and beet red.  This was discovered a few days ago and since then we have been diligent in cleaning it gently. We're hopeful that any discomfort caused by this irritation is alleviated  by our cleansing procedures.  Ella tolerates our make-shift nursing care well.  She does her best to let us know what's happening to her and always has a smile, a hug, and a kiss for us. 

     Sudden screams of pain in the night wake us in-between medication reminders.  Sometimes it's easier (and seemingly more efficient) to simply stay awake after quelling her episodes until the next medication round. Nights are long and morning rolls in despite our lack of sleep.  We do the best we can of alternating nightly care and afternoon naps. We still have the daily activities of life that need tending to and through the generous, caring help of many we are able to keep our young household of five running.  

     We'll get through this, as my late mother used to say, "This, too, shall pass."

"We're Out of the Woods" but not "In the Clear"...(by Michael & Lindsay)

Ways to help Ella & our family can be found at the end of this blog post.

On the way to the hospital last Thursday morning, in the wee hour of 5:00 am, the three of us (Mommy, Daddy, & Ella) sang along with Taylor Swift's "Out of the Woods"...it has become a theme song for us this summer...especially the refrain, "Are we out of the woods (repeat 4x)...are we in the clear (repeat 4x)?"

Thursday dragged on for an eternity, butterflies swarming in our bellies, gruesome thoughts circulating through our heads, anticipation of the unknown.  She came through like the champ she is...she did so very well.

Thursday evening through Monday morning proved to be a roller coaster of physical, emotional, and spiritual ups-and-downs.  Bi-lateral hip surgery with (left-side) socket reconstruction is a major surgery for anyone let alone such a little girl.  The pain she experienced, as we could tell from her resonating screams, yelps, and cries, must have been horrible.  Bone pain is the worst.  Watching her and waiting as drug regiments were attempted while keeping in mind the underlying cause of this all...the SMA...took emotional & physical tolls on us as her parents.  Stroking her head we prayed with her to help calm her, reminding her of the love Jesus has for her; reminding us of the strength God shares.  

Monday morning slowly rolled in bringing with it continued pain.  The "pain team" arrived early as they knew we wanted to see them asap...we talked briefly about what Ella needed as a child with SMA and they responded with what they could do for her.  By the end of the conversation we had a pain management plan that we all felt would work...at least we hoped so.  Within minutes the plan was implemented..and shortly thereafter, Ella was playing...singing as she does, and then, boom...she fell into a deep sleep...one that had eluded her over the past several days.

We were able to change her diaper, give her a sponge bath, promote bowel movement, as well as perform two respiratory treatments all in a matter of hours.  She complied.  When we were cleaning her the second time around she nary said a word...no pain, no discomfort, no screaming...in fact, she held a pretty funny conversation with us as we cleaned out the rather large "mess" she had created (with some help from Colace and other "things"!).  

"We're out of the woods"...but~~
we're not "in the clear".

Once we get her home we have to establish the routine of care.  The next two weeks Ella will be confined, almost 100% of the time, to her total body splint---which keeps her in a lying down position.  We've talked extensively about adaptations we will make for her to provide optimum care and comfort.  We've decided to take on "shifts" with our kids.  One parent has a shift with Ella while the other takes Ava and Henry and then we switch.  We will use our land-line phones' intercom system to call the other person when Ella requires the hands of two adults (diaper changes, bathing, moving her, etc.).   This is the basic outline yet there's much more.  As we all know, there's always more!

During the second week of the return home Michael will continue to tutor.  Lindsay will continue to prepare for Fall Sunday School and mentally prepare to go back to work full time at Ann Reid.  Grocery shopping, laundry, lawn care, and meals (among other things) must also be accounted for.  No...we're not in the clear.

Throughout these past days we have been shown how much Ella is cared for by so many people.  We often remind her of how God has blessed our family with the love and support of so many.  People have already stepped forward and have helped during this time--family, neighbors, and friends.  Thank you.

Many have let us know that they are in the wings, waiting to help, and we know we're going to need it in order to get us "in the clear".  To this end we have created a "Care Calendar" that will allow anyone to "sign-up" to help.  

Please use the following link, enter the Calendar ID and Security Code if you are interested in helping us get "in the clear": 

www.carecalendar.org

Calendar ID: 115107
Security code: 6639   

From our family to each one of you---all of you---thank you.

Michael, Lindsay, Ava, Henry, & Ella (Sasa & Doublestuff [cat], too!)

Ella's Hip Surgery Update (7-10-15)

She was wheeled away to surgery in silence.  She didn't bat an eyelash as they took her away.  Mom and Dad, on the other hand, fought back the tears and tried to quell the butterflies in their stomachs.

A texting and telephone system is in place at Lurie's so parents can get regular updates throughout the surgery.  Half-way through we got a call that she was doing well.  Blood loss at a minimum and the left leg completed.  Right leg about to get started.

We sat with our Pastor and had oatmeal and coffee.  We talked.  We discussed.  We prayed.  Grandma and Grandpa joined us at lunchtime.  Another call was made from us to the operating room and they were just finishing up the left leg.  We had an hour to go before we were out of the woods...in the clear.  We took that hour to have lunch despite the butterflies dancing in our stomachs.  Good conversation ensued.  

Next to the impressive dining area is one of Ella's favorite places in the hospital...Lori's Gift Shop.  As we were searching for a new stuffed animal to help welcome Ella back from surgery Lindsay received a phone call from the OR.  Surgery was finished and Ella was being taken to ICU.  Butterflies multiplied and seemingly grew.  Questions swirled in unison with those butterflies...how much blood did she lose?  How did her respiratory system hold up?  Was extubation successful or was she still intubated?  What kind of casting was used--a hard plaster cast or a removable total body splint (this determination would be made at the time of surgery based on several factors discovered during surgery)?  

How was our Squishy?

We found a stuffed giraffe that we knew Ella would love and headed back up to the OR floor.  Shortly after, Ella's surgeon brought us to the 16th floor (ICU) and we sat with him for a briefing.

Ella did wonderfully in surgery.  Blood loss at a minimum, her respiratory system tolerated the procedure well, and extubation was without incidence.  They decided on a removable body splint.

While her right femur did crack while the brace was being installed the surgeon explained that he simply moved the brace to another part of the bone and the bone will heal itself quickly.  We'll take it!

The first night in the ICU sleep eluded Ella as the pain invaded her little body.  If she did fall asleep it was for a short time.  Inevitably though she woke up crying...yelling for Mommy, Daddy, Doctor.  

Through the night we took turns tending to her, the nurse being there each time.  We soothed her, medicated her, and reassured her.  She wanted her brace off...that's all she wanted.  Doctor's orders forbade it.

Morning crept into the room and the pain persisted.  Every waking moment she was crying.  An order went in requesting Valium...we had to wait though.  The staff thought that muscle spasms was contributed greatly to her pain...Valium should relieve the spams.

By late morning and following many tears, the Valium arrived and quickly took effect.  Her mood changed, her voice changed, her comfort level changed...all for the better.  She's on a schedule for the Valium now as a way to manage her pain.  It's a roller coaster as the medication wears off and we wait for the next cycle...we're adjusting accordingly, though.

She's strong...no doubt about it.  The staff sees that too.  With anticipation we wait to hear if we can move out of ICU and onto a different floor.  Going home, however, is a conversation we have yet to have...only time will tell.

 

Simply Asking...(by Michael & Lindsay)

Surgery is set for Thursday, July 9, 2015.  As this is written it is Sunday, July 5, 2015.

We've worked out plans for Ava, Henry and Sasa.  We're still working on Doublestuff (the cat...that should be no problem, though).

We've sat the kids down and explained the upcoming situation; making it as positive as we could. While the thought of a 7-hour surgery on Ella scares us immensely, we know we must rely on God and each other to walk through this time.  We also know that we rely on others a well.  Prayers, cards, visits, and encouragement have always been so abundant when times are hard.  This time, however, will be especially difficult simply because of pain, immobility, and uncertainty.

While pride often hinders us in asking for help we know we must set it aside for now and simply ask.

Whatever way feels best to you we are asking for some help.  Be it prayers, positive thoughts, a phone call or card, a visit at the hospital or our home, a play-date for Ella, play-dates for Ava and Henry, or whatever other way feels best to you...we simply know that this is where a community can be so important.

We don't really know how to thank you...for all you have done for us in so many ways.  We thank the Lord above for the incredible care He has bestowed upon us through you.  

Hannah's Help...(by Michael)

One is just leaving elementary school; the other is just entering.

One is a big sister; the other is a little sister.

One fights to help find treatments or a cure for SMA; the other fights to survive the effects of SMA. 

Yet they really don't know one another.  Until just recently.

Two years ago a young girl entered my 4th grade classroom.  She was (and is) full of life, energy, and goodwill.  She has a strong personality...knowing what she wants, going forward with her plans, and lets nothing stand in her way.  She's determined, she's straight-forward, she's big-hearted.

In many ways since I've known her she has supported Ella's fight against SMA.  She has had lemonade stands, made cards for Ella, and asked about her...genuinely wanting to know how she is faring.  Her name is Hannah.

I received an email from her mother asking if it would be all right if Hannah did something for Ella.  Hannah's plan was to have her 11th birthday party benefit Ella.  Instead of gifts she asked her friends to donate to Ella the money they would have spent on a present for her.  

Not only was this an act of extreme kindness, selflessness, and love, it came at a time that found Ella's bank account nearly at 'zero'.  The expense required to care for Ella outside of what insurance and other sources can provide falls on us.  We do our best and it is a struggle.

A few days prior to the e-mail coming in Lindsay and I were having a long discussion about how we were going to rearrange our finances in order pay for Ella's needs.  With the bank account nearing 'zero' we were prepared to be creative as well as sacrifice much.  

Through Hannah we know that God worked for Ella once more; providing for her in a way that we simply could not.  The financial goal we set with Hannah was far exceeded and we are so very grateful for her and her friends and family.

An 11-year-old who gives up her birthday gifts to benefit another...Wow!

Hip-Hip-Not Hooray...(by Michael & Lindsay)

One of the criteria for the diagnosis of SMA Type 2 is that the patient has reached the milestone of sitting unassisted.  Ella fits that criteria well.  In fact, almost her entire day is spent sitting, either independently or strapped in a wheelchair.

One of the consequences of SMA is, of course, the atrophy and weakening of muscles.  When you combine muscle atrophy with non-weight bearing a host of problems can and do occur.  One of those problems has to do with the hips.

The weak muscles cannot hold the hips in the proper place and over time they begin to dislocate. We've been keeping an eye on them alongside Ella's orthopedic surgeon for the past year now.  

Historically speaking kids with SMA Type 2 wouldn't have had hip surgery for the simple reason that if there was no pain associated with the dislocation the call for surgery was unwarranted.  Doctors simply "kept an eye on them".  

So what's changed? 

Survival.

Kids with Type 2 SMA are surviving longer these days with improved care.  And while kids before were not experiencing pain, many of them weren't living long enough to get to the point when there would be pain.  Not so true anymore.

If Ella's hips go untreated they will continue to dislocate; producing a pronounced pelvic tilt, contributing to scoliosis, and causing pain...much pain.  Not to mention thwarting her ability to sit independently.  In fact, she has "tipped" over a few times over the past year---just sitting there and "boom", down she goes.

Not only are we looking to the future in terms of pain, scoliosis, and independence...we are also looking at helping her to be "mechanically sound" for when the treatments and/or cure become available...we want her in the "best position" at that time.

Not to mention the surgery itself.  Right now, Ella is strong. Her respiratory system has been doing well, and her ability to recover quickly exists.  Her doctor says that waiting until the hips are worse and pain is present would make for a much more complicated surgery.  

So what's involved?  Well here's why it's taken us so long to come to this decision:

• The surgery is 7 hours long for both hips.
• The surgeon will cut her femurs and re-position them properly.
• The femur will be held in place in the hip socket with metal brackets screwed into surrounding bone.
• Depending on the condition of the socket he may have to "create" a socket.  This is because when the femur is not in the socket the socket itself tends to "flatten" out.
• The possibility of a blood transfusion exists so we will prepare for that.
• She will be intubated.  This can pose a problem for kids with SMA for a variety of reasons.  She's strong now and her doctors think and feel that she can be extubated successfully.  This is one of our big concern areas, though.
• She will spend 4-5 days in the hospital.
• She will be immobile for at least two weeks...then we will slowly get her back to sitting.
• Regression will occur...so intense PT will commence when she's ready.

We know that there are different schools of thought when it comes to hip surgery and kids with SMA.  We have--through prayer, research, discussion, and thought--come to the realization that we must do what's best for Ella's future.  

We have yet to tell Ella of the upcoming surgery...that will be a discussion for the time just preceding the day of surgery.  

Surgery is set for July 9th (2015).

We will share, once we know, the details of the hospital stay (4-5 days) so that those who would like to visit or send a card/something special can do so.  We know that Ella would also love to have visitors at home while she recovers...play dates, movie dates, coloring dates, play-doh dates, etc!!

Ella's a fortunate girl.  She is surrounded by so many people who care for her.  She just turned 5 years old and has been through so much in such a short time...she is really going to need you for this one...it's a big one.  

We've spent much time with her doctors...all of them...and we are confident in their opinions, amazed by their professionalism, grateful for their compassion, and trusting in their abilities to care for our Ella.

Disney Cruise (by Lindsay)

In the middle of May, we were so fortunate to have Ella's Make-A-Wish trip...a Disney Cruise (aboard the Disney Dream) to the Bahamas!

It was a magical trip, to say the least, and we all had an incredible time!!!  Make-A-Wish took care of everything, literally everything, from transportation to the airport, to money for souvenirs.  We were treated like royalty the entire time we were there! 

The cruise ship was like a palace on water, and luckily none of us had any issues of sea sickness :)  The food was amazing, as was the service.  We enjoyed time in the pools, on the beach, and we even got to swim with a dolphin!

We are so grateful for the Make-A-Wish organization for providing us with the trip of a lifetime!!!

But enough talk...pictures are worth a thousand words :)

At the airport

Ready to go!

Henry at the controls

The bus to take us to the port

Inside the Disney Dream!

Our stateroom

Our stateroom

Our private veranda

Michael & Ella

Exploring the ship

Exploring the ship

Port holes

Port holes

Port holes

Out at sea



Deck 11 pools

Deck 11 pools/water slides

Jumbo TV on Deck 11

Swimming!

Grabbing a drink while the kids play in the kids club

Braids!

Braids!

Our stateroom ready for bed

Chillin'

The Disney Dream

On a ferry to go to Blue Lagoon Island in the Bahamas

Fun on the ferry

All three girls with their braids

Blue Lagoon Island

Blue Lagoon Island

Obstacle course in the ocean

Michael & Ella

Henry & Ella

Passed out on the ferry back to the ship

Ready for Pirate Night!

Pirate Night!

Castaway Cay (Disney's private island)

One of my favorites :)

Gorgeous!

Fun at the beach

Fun at the beach

Fun at the beach

Smoothies in coconut cups

Beach life

Beach life

Beach life

Ella, Henry & Ava by the ship

Belle!

Captain Mickey

Captain Mickey

The grand staircase

Our last meal, ready to head to the airport

Goofy!

Another favorite...swimming with the dolphin!

My hair after taking out the braids...YIKES!