Driving Past...(by Michael)

We moved to Naperville just before we were married in 2006.  The house we found was everything we were looking for in a house and so much more.  We were excited, enthusiastic, and full of hope and promise.

Besides the house being such a great find we knew we wanted to be in Naperville as well.  The main reason was their school system.  Our sights were set on the future, which in our minds held children.  We wanted them to have a great education and were sure they would receive one in Naperville.  Things looked great...a wonderful house that was affordable in a community that held a wonderful school system.

Shortly after our marriage we had our first baby (Ava) in July of 2007.  Following Ava was Henry in Oct. of 2008.  Ella came in June of 2010.  Our road of raising a family was well under way.

In August of 2011 Ella was diagnosed with Spinal Muscular Atrophy (SMA) Type 2.  Needless to say our lives took a dramatic turn off the road we were on and plunged us into a road much less traveled.

The few months leading up to Ella's diagnosis proved to be quite stressful.  Watching her lose so many skills, not knowing what was happening, witnessing the therapy not being effective, and researching possible outcomes made life heavy.  

Often we would drive past a new school that was being built by our house named, The Ann Reid Early Childhood Center.  It is specifically designed for kids with special needs, although kids without special needs can and do attend.  As we drove past the school our thoughts brought us to the question of whether or not Ella would be attending that particular school.  We didn't know what was happening with her...we didn't know a lot of things.

Fast forward two-and-a-half years to an unseasonable warm day in January of 2013.  Lindsay and I find ourselves waiting for the assistant principal of the very school we wondered about.  Our Early Intervention Service Coordinator waited alongside us.  The building, from the waiting area looks incredible.  It's modern, open, clean, and active.

Our meeting with the Assistant Principal went quite well.  She was extremely knowledgeable of her profession, the facility, and her staff.  She answered all of our questions with confidence and pleasantries.  The tour we took of the school reinforced its first impressions.  It was obvious that the people there knew exactly what they were doing.  It was obvious that the focus is solely on the needs of each one of the 400+ children that attend the school.  

It's amazing how things in life come about.  Driving past that school in the summer of 2011 and walking into it in the winter of 2013; looking at the decision we made in the summer of 2006 when we moved to Naperville and feeling the positive outcome of that decision.  It's like we were meant to move where we did...simply amazing.

Expanding Freedom!! (by Lindsay & Michael)

Our basement modification project is complete!

In just two weeks, we got rid of our pool table, had the bar taken out and replaced with cabinets/countertop, had the closet reconfigured, had the walls repainted, had new carpet put on the stairs, and had the carpeted floors replaced with wood laminate.  We purchased a more functional couch as well as some new storage units for toys.

And we couldn't be happier with the result!  We finally have a basement that Ella can explore independently!!

This renovation for Ella has been possible simply because there are so many people who care.  The fundraisers that were thrown have funded this extraordinary project and we will never forget the generosity of everyone who has touched our lives.  Thank you.

Here are some before and after pictures of our project (and a video at the end!):

BEFORE: The bar

AFTER: The cabinets/countertop

BEFORE: The old closet

AFTER: The new closets

AFTER: The new closets

BEFORE: Play area

AFTER: Open area

BEFORE: Play area

AFTER: Couch/TV/video game area

BEFORE: Couch/play area

AFTER: Couch/TV/video Game area

BEFORE: Pool table area

AFTER: Play area

View of the entire basement

Michael's area of the office

Lindsay's area of the office

And here is a video of Ava, Henry and Ella seeing and exploring the new basement for the first time:

Orchestrated...(by Michael)

She didn't know I was watching her.

She sat in her little manual wheelchair watching one of her favorite movies.  I had a view of her through a doorway in another room.  The angle was such that she couldn't see me but I could see her.

I saw the back of her head, filled gloriously with growing blond hair; delicate yet thick as it begins to drape over her tiny shoulders.  Her shoulders lifted slightly as she placed her hands on the wheels of her wheelchair and with precision she turned herself to the right.  Spying an object on a small rocking chair nearby she thrust her arms forward and glided to the chair, expertly stopped one wheel from rotating while she reached with her other hand and snatched up the object of her interest.

She grappled with it a bit as the SMA fought her ability to grip the object.  She won.  She had the object in her hand and placed both hands again on the wheel of her wheelchair.  With all of her might, putting her entire upper body into the movement, she thrust herself forward, trusting the belt to hold her and the wheelchair glided effortlessly away from the chair.  She once again manipulated the wheels to make a sudden yet graceful turn and with all intention placed herself back in front of the TV...watching once again one of her favorite movies.

I wondered for a moment what it must be like to be her.  I wondered how it felt to be confined to a wheelchair.  I thought about what her hopes might be, what her aspirations will be as she grows, what her experience will bring to her.  

She is quite a person, this two-and-a-half year old of ours.  She orchestrates her life like no other person I have met.  

She didn't know I was watching her...

Lots of Updates (by Lindsay)

We have several different updates...

First, our basement renovation is under way!

So far the bar has been taken out and was replaced with new cabinets/counter top.  Also, our non-functional closet has been split into two and shelving has been added.

Tomorrow (Friday), painting will begin and will continue into next week.

On Saturday, the pool table will be taken out and moved to Michael's brother's house.  We're sad to see it go, but glad that it will stay in the family!  We look forward to shooting some pool at Andrew's house in the near future!  

At the end of next week, we will be getting the new wood-laminate flooring that will allow Ella to move around in her wheelchair (the most important renovation)!

So by next weekend, our basement project should be finished!

On another note, in the past seven months, Ella has barely gained one pound :(  

However, a month ago, her dietitian suggested that we add cornstarch to her daily formula (it supposedly helps her to use proteins more efficiently) and she gained seven ounces just this month!! Very good news!

Finally, an update on Ella's progress...with the holiday activities, we ended up missing some of Ella's therapies and we weren't able to work as much on her standing and walking as we had been.  Unfortunately, Ella has regressed a bit :(  She can no longer stand at a table unassisted and her assisted walking has become more difficult for her.  Our thoughts and hopes are that this regression is only due to the fact that we haven't been working as much with her over the past few weeks.  We are now back to working with her daily, hoping she regains her lost strength and continues to improve!

One last update...I don't think I ever posted this on the blog, but I injured my ankle in gymnastics about two months ago.  Since then I have been in a walking boot cast and have had physical therapy.  Luckily, I am pain free as far as day-to-day activities are concerned, however, I am still feeling sharp pain if I bend my ankle to a certain degree.  So I have been unable to return to gymnastics to this point. I am hoping that the pain will eventually go away, but my podiatrist told me there is a chance that my ankle will not be able to support the pounding of gymnastics again :(  I am hoping and praying that I will be able to return, as gymnastics has been such a wonderful activity for me (on so many levels).   

She Has a Way of Doing That...(by Michael)

I can remember sitting on our deck just a few days after we found out that Ella indeed had Spinal Muscular Atrophy.  It felt temporary.  It felt like if we worked hard enough it would go away.  It seemed that we would only have to live with it for a short while then everything would get back to normal; it would be a distant memory.  I remember thinking about having our daughter in a wheelchair.  I had seen many kids with SMA in their wheelchairs as I researched the disease before the diagnosis confirmation.  I wondered if our house would accommodate such a chair.  Upon talking with Lindsay about it we thought not; simply because of the size of these power wheelchairs but more importantly the age of Ella.  Having a toddler maneuver a 300+ lb. wheelchair in tight spaces and around tight corners is a recipe for banged up walls and broken corners!

Fortunately Ella uses a small 7 lb. manual wheelchair in our house.  Through the generosity of a fundraiser we were able to lay down laminate wood flooring on the first floor to make the entire area accessible for her.

Ella eventually received her 311 lb. power wheelchair and uses it outside and in public areas.  She is quite adept at using it and often elicits comments of amazement from people.

Our car is modified for the power chair through the generosity of a community of people and a non-for-profit organization.  The chair is housed in the back of the van, charged and always ready to take Ella where she needs to go in this big world.

The kids are growing.  In fact, someone recently told me that they were sure Ella was going to be the tallest of the three!  They are growing but the space they use is not.  Our first floor has now become a maze of equipment, toys, people, and the dog.  Having three kids all about the same age, the place becomes a "wreck" rather quickly. 

The end of the holiday season brought with it the blues...it also brought a renewed sense of a fresh start as we decided to fix up our basement and make it the kids' play room; completely accessible for Ella. 

As I sit with the screen in front of me I feel the reality of SMA.  It's not temporary.  It's not something that will just "get better" or "go away".  Often times it's hard to believe it's even there.  As I bathe her I can see what it is doing to her physically...a pit resides deep in my stomach and my head shakes slightly as I silently sigh and close my eyes briefly, several times.  Ella continues with her bath-time play and she quickly draws my attention away from the cruel realities of SMA.  She has a way of doing that.

We place our youngest in bed after dressing her in her jammies, outfitting her with the braces (AFO's) she needs for sleeping and tending to her g-tube site.  After stories we hook her up to the bipap, the pulsoximeter, and insert her tubing for the overnight feed.  We lie with our children, speaking softly in their ears, rubbing their backs, holding their hands ("charging" with Ella), or simply lie in silence with them.

The night just begins and sleep comes over the house...not too long after and throughout the night, we are awaken by calls for turning, alarms that need silencing, or dreams that need quelling.

By the grace of God we are given another day to face.  

SMA is still there.

Home Modification...and Up for Grabs! (by Lindsay)

Recently, Michael and I found ourselves talking a bit about our house needs.  

We've toyed with many different options to accommodate Ella and her accessibility.  From adding on to our current house, to buying an accessible house, to building a new one from scratch...all of which would be extremely expensive (and WAY out of our budget any time soon).

But we also talked about how we don't truly know what Ella's needs will be in the future.  With her current progress, we've started to have a new hope that maybe, just maybe, we won't need as many modifications as we once thought.  But we don't know.  

So it would be silly for us to start making major house decisions quite yet.

But there is one thing that we CAN do, that would help Ella tremendously.

Our basement.

When we bought this house, we immediately fell in love with the basement.  We knew it would be the perfect "playroom" for our future children.  

But unfortunately, it doesn't work for Ella.  

The entire basement is carpeted, making it very difficult for Ella to use her little wheelchair down there. We also have a large slate pool table that takes up a large portion of the basement, forcing us to cram all the "kid stuff" to one side, which also makes it difficult for Ella to maneuver around.

So with the New Year, we've decided we are going to use some of the money that has been raised for Ella to make some new changes to our basement.  Changes that we KNOW will help Ella RIGHT NOW.  

One thing we're going to do is take out the bar that we have down there and replace it with cabinets/counters for storage space.

Another thing we're going to do is replace the carpet with wood laminate flooring (the same flooring we put on our first floor when Ella got her wheelchair).

Finally, we are going to say goodbye to our pool table (sniff sniff).  Our family chipped in to buy the pool table for Michael for his 40th birthday five years ago.  It was a great gift and we've had a lot of fun with it.  But unfortunately, we haven't been able to use it as much as we'd like to lately (not much free time these days), and we've decided that Ella's needs are more important.

So we've found someone who would like to give it a new home.  We hope they enjoy it as much as we have. 

We're looking forward to making this "new" basement a true playroom that all THREE kids can enjoy together :)  

Mor Far (by Lindsay)

This past week has been a sad week for our family.

On Wednesday we lost my dear grandfather, Mor Far, to a stroke at the age of 89.

Mor Far was such an incredible family man...a twin brother, a husband, a father of five, a grandfather of fourteen and a great-grandfather of thirteen.

He and his twin brother, John, married their childhood sweethearts, Mary and Katie, who also happened to be sisters.  They have spent their entire lives together and were married for over 60 years.  They were an incredible example of love for our entire family.  

Our children shared a special bond with Mor Far.  Although they never met Mor Mor (my grandmother), we will continue to share our precious memories of both her and Mor Far with them. 

Mor Far, we love you and miss you terribly.  But we know that you are now dancing in the sky with your beloved Mor Mor :)