Found...(by Michael)

circa: 2006

We found a home here,
We're leaving the house.

We found a family here,
We're leaving our footprints.

We found our church here,
We're leaving with prayers.

We found traditions here,
We're leaving with the promise of more.

We found ourselves here,
We're leaving stronger than we came.

We found our pleasures here,
We're leaving with memories abound.

We found disease here,
We're leaving with an appreciation for life. 

We found life and death here,
We're leaving with a deeper understanding.

We found our weaknesses and strengths here,
We're leaving the latter behind and the former in tow.

We found our skills here,
We're leaving more confident.

We found friends here,
We're leaving richer for it.

We found love here,
We're leaving surrounded by it wholeheartedly.

I'm Gonna Keep It...(by Michael)

Rummaging through years of stuff elicits a reminiscent quality that so easily takes one back to different times.  Some of those times seems easier, others more difficult.  Some feel simpler while others dredge up the confusion that was present when it was actually occurring.  Some make you smile while others bring back the pain endured for whatever reason.  Still some take you into a world where you almost re-live the events surrounding the object.

The object below is of the last kind...one that brought me to a place and held me there for some time.

Before Ella was diagnosed with SMA Type 2 we had no idea what was really happening with her.  All we knew was that she was missing developmental milestones and struggling.  One of the hardest aspects of all of this, as a parent, was the feeling of helplessness.  Watching your child struggle, fight, and exude extreme determination to accomplish something they should be able to easily was torture.

I made this contraption for Ella.  We wanted something for her to be able to lie an on use her arms to propel herself.  She still had that kind of arm strength as well as head/neck strength.  I spent the afternoon at Home Depot with a kind man who spent so much time with me deciding the shape, the kids of wheels, the strap system, etc.  I went home and sat in the very garage that this picture was taken and sanded the piece of wood to a smooth finish so as not allow a single splinter to invade my daughter.  I measured and precisely placed the caster wheels and the strap holders.  It was beautiful.

Ella used it for only a very short time.  Her inability to navigate coupled with her intense regression (at that time) made it very difficult for her to use.  It became another source of frustration for her during the road to the diagnosis.

I kept it though.  I kept it because I thought one day she could use it.  I thought that with practice and sheer will that she would overcome whatever was blocking her development.   I thought that we would look back on the time and remember it as a distant memory as we watched her play soccer, or dance ballet, or run track & field.

I kept it because it was one of the first things I actively did to try and help her.

I am going to keep it still.

  

Unexpected News (by Lindsay)

Yesterday I took Ella to her biannual checkup with her orthopedic surgeon, Dr. Grayhack, at Lurie Children's Hospital.  She goes every six months to check the curve of her spine, as well as other joints.

I brought with us the disc that had her most recent spine x-ray, but Dr. Grayhack decided to also do an x-ray of her pelvis as well, so that we'd have a baseline as we've never looked at it up to this point.  We all assumed it would be fine.  

But it wasn't.

Ella's left hip is two thirds out of the socket and her right hip is on it's way.  Her hips are dangerously close to being completely dislocated.  

This is not uncommon for children with SMA.  With Ella's muscles being weaker, they aren't able to hold her joints in their proper places.  

But this came as a huge shock to all of us, as Ella's hips appear to be fine from the outside and she has never complained of any pain in that area.  

But a dislocated hip can become a problem down the road.  It can become quite painful for Ella, and the farther out it goes, the more difficult it is to correct it.  

Dr. Grayhack told us that since the hip will not go back in by itself (and will only get worse in time), the only way to fix the problem is with surgery.  It's not a simple surgery, as both of her femurs would be cut completely and plates and screws would be placed to properly align the hip joints.  

But there are risks with any surgery, especially for a child with SMA.

Children with SMA are at a much higher risk for respiratory problems after surgery that could lead to permanent problems.  For example, she might become more dependent on her BiPap (she currently only uses it at night).  Dr. Grayhack even used the word, "trach," which I'm hoping was a bit too extreme.  But he did mention that she is currently very strong in the respiratory sense.  But as time continues, she will gradually become weaker.   

Ella will lose strength during her recovery from the surgery.  She will have a cast/brace with a bar between her legs to keep her hips properly aligned during recovery, which will prevent her from doing her daily/weekly exercises that keep her strong.  We don't know if she will regain that lost strength.   

Ella will have periods of fasting before, during and after surgery.  Children with SMA should not go more than four hours without nutrition, as their bodies start using muscle mass for energy.  She would require IV nutrition during this time to prevent as much muscles loss as possible.

Dr. Grayhack told us that Ella would be in the hospital for at least four days, exposing her to countless germs that we're used to avoiding.

So that's it.  We have a decision to make.  Luckily we have some time to make that decision.  Dr. Grayhack thinks that if we do the surgery, it should be done within the next three to six months.  Ella has her SMA Clinic appointment with the rest of her team at Children's in May, so we will most definitely discuss the possibility of surgery with them. 

For now, we'll pray.  We'll pray for guidance in making this decision.  We'll pray that Ella's hips do not completely dislocate.  We'll pray that she remains pain-free.  And above all, we'll pray that the doctors and researchers can find a cure for the thousands of SMA babies out there struggling right now.

Childhood Fears...(by Michael)

Ella playing by herself in the basement

The small sticky pads that sit under Ella's eyes, covering and protecting her skin from the straps of the bi-pap mask, had one large drop of moisture on each of them.  The moisture came from tears streaming down her face, being absorbed by the protective pads.  The tears a result of fear.

Fear of being alone.  

Ella has developed this fear as of late; not wanting mommy or daddy to venture too far from her; wanting to sit on our laps more often; not wanting Ava to climb up into the top bunk...out of sight.  She simply doesn't want to be alone.  

We know that this fear is something that most kids go through.  The timing, however, promises to make things a bit more challenging.  We are set to close on our new house in late April.  Once that happens the kids will each have their own bedroom.  They know this.  Ava, being six years old, is looking forward to having her own space; Henry has had his own room for quite some time now and quite honestly is looking forward to everyone having their own space so he doesn't feel so isolated from the girls.  Ella, on the other hand, seems to be approaching this transition with trepidation.

The other night, when I went into her room as she was crying about being alone, I couldn't help but think about what it must be like for her.  There she sat, on her bed with her fears. Without the ability to move herself; to seek out a person to cuddle with, to take it upon herself to solve her issue in a way that most kids can and do.  She was just sitting there, in the same position that Lindsay had placed her moments before,  with tears rolling down her cheeks and being absorbed by her sticky pads.  All the while saying she doesn't want to be alone.

It's hard for Ava and Henry, too.  For they are mobile under their own power and move freely about the house without a second thought.  Lindsay and I find ourselves telling them not to leave Ella by herself.  In essence we are telling them that they, too have to remain in a certain place because of SMA.  They often oblige, yet sometimes resist...we understand and adjust accordingly.  

We know this fear will dissipate.  We know it might take a bit longer to do so simply because Ella's ability to confront her fear and then do something about it in terms of physical space is hindered by SMA.  As so many parts of her life it will just take longer, look a little different, require extra help from us, and work itself out.  

As we go through this with Ella we hold fast to our promise that, "We are not here to save her, we're here to take care of her and keep her alive until they find cure."