Update on the last long while...

This month marks six years since Ayla began showing symptoms of a disease that would take months for doctors to figure out and diagnose.  Months of ruling out cancers, arthritis, viruses, and infections.  Months of watching her deteriorate before our very eyes with nothing we could do to stop what was happening or even know of a way to help her.  Followed by years of treatment after treatment, test after test, needles upon needles upon needles upon needles…

This time six years ago, Ayla was 20 months old.  Prior to that she had been a very busy, silly, quiet girl with a joyful face and hands that loved to play and dig in the dirt.  She walked and ran.  She climbed up ladders and went down slides.  She scaled coffee tables and dinner tables.  She followed me around and clung to my legs.  Then that all stopped…

It occurred to me this morning that a lot of people in my life now know nothing of our battle for our daughter’s life, her health, her joy.  Many are still around that walked with us through it or offered to be the hands of feet of Jesus to us when we were so overcome with grief and pain and sometimes, hopelessness.  Many of you who aren’t in our day to day life may still wonder and pray for Ayla and our family and I am still so thankful.  It’s been a while since I have given any kind of update…but here I am.  Beginning to write it out…

Life has been busy this last little while.  Ezra is in 5^th grade now and Ayla is 2^nd.  We homeschool so most of my days are spent teaching them how to read and how to divide along with doing a load of laundry and making meals.  Evenings are spent at piano lessons and hockey practice or karate and church programs.  But don’t worry, we are purposeful is carving out time to just be…just be together.  So I haven’t been updating on Ayla and our family.  I am living life. 

For those of you who didn’t know us a few years ago, or wonder what we are talking about when we talk about those trying years; this is for you too. 

Long story short

 

Ayla was eventually diagnosed with a disease called Eosinophilic Fasciitis (whoa…been a while since I typed that.  I have to go back and check my spelling!).  What happened was she got a small twinge of pain in a hip joint and progressed to the other hip, then to other joints, then her skin got shiny and hard to the touch and swollen…oh, so swollen.  Nothing like this had been seen before at our local hospital, so we went to London Children’s hospital.  And after checking for pretty much everything they could possibly think of there and in Toronto at Sick Kids, they thought they would bring in a retired dermatologist from the Windsor area. 

So after 4 months of bone marrow draws, cat scans, MRI’s, labs upon labs, x-rays, EKG’s, ECG’s, breathing tests, and on and on; an old man dermatologist walked in and looked at her and said it is one of these three things; Scleroderma, a form of Lupus, or Eosinophilic Fasciitis.  We needed to do a skin and muscle biopsy to find out, and low and behold it was the rarest of the three, what we would grow to know as EF.  This meant that her fascia was being attacked by her immune system through her whole body.  This meant her skin was not pliable, movable, stretchable, and bendable.  Which makes moving and growing particularly challenging; especially they don’t have a clue how to make it stop doing those things!

Once the diagnosis happened we found out that she was the only child her age, almost 2, in the world that had ever had this.  They didn’t know what caused it, how to cure it, or really…anything about it except that it’s auto-immune.  So…shut off the immune system and put her on steroids to get the swelling/inflammation to go away while they tried to figure out what else might help. 

At this time we also started her on Physical and Occupational Therapy, she was now 2 years old.  We were told she would likely never walk again, and if she did, it likely wouldn’t be well enough to “walk through a mall someday with her friends.”  We were so, so broken…she was so so small.  And this was so so UNFAIR.  But hope of at least standing and taking some steps when at the time we were carrying our 2 year old everywhere and she was unable to even stand on her own.  Sitting unsupported was a challenge as well.  Most muscles were gone; she was completely and totally emaciated.  So we got out all of our old baby equipment (high chairs, excersaucers, walkers, etc.)  for our 2 year old and used it for her…again.

Eventually, with the help of John McGivney Center, she walked.  She hated every ever lovin minute of standing and walking, but she did it.  Fits of anger and rage and all…not a smile to be seen from her.  But she did it.  And after THEY said it probably wouldn’t happen. 

Two weeks after walking on her own (without support of braces) she fell and broke her femur in her right leg.  Which anyone that knows a femur break…it’s a hard one to cast and wait to heal.  Her heal time was more because of medications she was on. So she was wheel chair bound for another 8 weeks.  Then a few weeks after that cast came off, she fell and broke her tibia in her left leg.  So another cast…another long heal time.  But at least with this one, they made her special shoes so she could walk and stand and build up her bone strength.  All these broken bones were results of long term use of steroids and not being mobile.  The last of the broken legs came on her 3^rd birthday, while we were in Florida at Disney…oh and did I mention she had strep that week too and the travel insurance we had didn’t apply to her?  Now I can laugh, SO REDICULOUS. 

So, Ayla regained her strength.  Her ability to walk grew into running then into jumping, into tricycle riding…Do you know what the definition of a run is?  It is when the heal of one foot and the toe of the other are both off the ground at the same time.  The joy to see both feet leave the ground even for a millisecond! 

All during this time she was still seeing many doctors and they were trying to figure out how they could get this disease to go away.  None of it was working…home injections, hospital infusions, oral meds, diet changes.  NONE.OF.IT.DID.ANYTHING. Except stop further damage.

On top of all this going on, Ayla’s joy was non-existent.  A smile was almost never seen.  A little girls laughter and giggles…they just weren’t there anymore.  And THOSE, THOSE were harder to get back.  

Do you know what it’s like to have people look at you and say, “your daughter…she just doesn’t seem to have any joy.”  We would try.  Man, would we work for a smile or grin or the long lost giggle.  During all that physical pain, she wasn’t able to grow and develop emotionally like a 2/3/4 year old would.  She didn’t know how to interact with other kids at preschool.  She didn’t trust them.  She was afraid of so much.  Even joy. 

Through so much prayer and the persistence of preschool workers (you know, they just babysit, right?) and social workers, some joy and playfulness began to shine through.  I remember her first friend she made at school, Maddy.  I shed some tears knowing she was finally figuring out this joy thing…

Now

I’m thankful that’s a distant memory.  I’m thankful all of it’s a distant memory.

Now she loves music, she loves to dance and sing.  She is learning piano and loves it.  She loves to play pretend and do crafts. She loves to laugh and giggle when playing games and making silly faces.  Her laugh still makes me teary sometimes because I thought it would never return.  She loves to swing and play in the back yard.  Right now her toothless grin is enough to make anyone melt.

There was so much more than happened in those years.  Too much to list here.  Too much pain to relive.  Too many happy tears to cry again.

Something that happened during those years was my faith in and ever present God was solidified.  That might seem strange but I know I physically could not get up and face each day without being strengthened by the immeasurable strength of a God I really didn’t know before all this happened.  I didn’t know God as a healer, just as this distant creator.  I didn’t know God as the hope giver.  I didn’t know God…not God really, like I did through that and to some extent now.  I’d like to think I know him just as well now, but through pain and suffering loss, do we truly begin to feel and understand how close He truly is to us. 

Sometimes now I wish I had that same dependence where I literally didn’t know how I would get out of bed in the morning, how I would mother both of children, how I would be a wife to my husband.  Sometimes now, it’s just all too much me.  Myself, that pulls me out of bed each morning. 

All this to say, the last year and a half has been pretty uneventful.  Last fall, Ryan and I decided that we were done medication.  She had been on meds for 5 years, none of which were seeming to be doing anything and the thought of the havoc they were wreaking on her system, I could bear no longer.  We both felt led in prayer to get her off the meds and trust that she would be okay. 

In her fall appointment with her specialist, we brought this up.  She was supportive of it, barring any ‘active disease’ began to present itself again.  We began to wean off meds and this past April we were given the option to just stop completely because she was showing any symptoms of the disease becoming active again. 

Ayla has been happily off meds for 6 months.  She has had no signs that the disease is active again.  We go visit the specialist next Friday, the 16^th for a check-up.

Now, Ayla still has what we refer to as kind of ‘damage done.’  Her skin does not move and stretch like yours and mine.  She can’t bend and twist as well as most 7 year olds.  But she grows like crazy!  This was one major thing they were afraid of, that her skin wouldn’t stretch and accommodate growth of limbs.  That she might have problems with her limbs and body parts not being symmetrical.  Well, she is now taller than most of her 7-10 year old girl friends (and most boys too) and has gained weight to match that growth.

Thank you for taking the time to learn about or catch up on our journey with our beautiful, smart, busy, quiet, thoughtful, generous, creative little girl, Ayla.

Whenever you see a little girl smile or hear her giggle…remember to rejoice.