A funny story to start...9-27-2012

Wow!!  It's been so long since i've done an update!  I've been trying not to burn everyone out with them, but time has flown!
I will start you off with a funny story from the Hewitt household:So this year Ayla began junior kindergarden and Ezra is in grade 2.  We homeschool and this is the first year schooling both children!  So that has been a learning curve in itself.  Well last week, we were sitting down to do science.  We were doing some experiments with water.  One of which involved blowing up a ballon and pushing it into a huge bucket of water.  Which sounds easy, right?  Well, one would think so, except i had just gotten home from the dentist and had some freezing.  Have you ever tried to blow up balloons with frozen lips?!?!  Air and drool were going everywhere except into the balloon.  Finally, after laughing at me for quite some time, the kids blew the ballons up for me and we continued our lesson.  (SORRY, NO PICTURES)Praise update!  Ryan who has been away working for the last 7 months, got a job in Windsor (where we live)!!!  We will not be moving and WE WILL FINALLY BE TOGETHER!!!
The last few months have been on and off eventful.  Ayla started her new medication about 6-7 weeks ago.  It was quite a rocky start b/c we were told she had to take it 2x per day and she could not need an hour before or 2-3 hours after AND that she had to swallow a pill.  She's only awake for 12 hours a day, so 6 of those she can't eat anything?!!?  And you want a 4 year old to swallow what?!?!  Finally, after about a week of doing the best we could of spacing out her food and pills as well as watching her gag on pills, we finally heard from her specialist who said, "oh no, it's fine for children to eat with the pills, crush it up and put it in food."  PRAISE THE LORD.  So since then it's been much smoother.  Just a pain to cut and crush pills 2x a day, but it could be worse:)  She takes them pretty easily now.  And we just finsihed her 4 rounds of once a week bloodwork, and she's handling the meds fine.  Now we only need to do bloodwork once a month, and she's a total pro.She's also still on her weekly injections, which are seeming to get harder on her.  She hates them and questions why she needs them.  So that's becoming trying...considering she's had them for 2 years now.
She has a new brace for het left leg that she wears at night b/c she grows so rapidly (Praise the Lord), her heals don't stretch and she walks tippy toes.  It's helping:)As you know her monthly IV's at the hospital are done, since it wasn't working like they had expected.  She misses the nurses and child life people greatly and we have been to visit and we will go again soon.
We just had a trip to Sick Kids this past Monday.  One of the doctors think there has been a bit of improvment, the other is not so sure.  He would rather wait a couple more months on this med and check again.  I think her skin feels maybe a little different...??  Hard to tell.  And she has some darkening of skin on her torsoe and hips.  The Derm said that sometimes this happens to the skin when it's healing, so to keep and eye on and see if it spreads.  We go back just before Christmas.
Can you believe October is 3 years since Ayla started getting sick??  Seems like both such a long and short time...when we think about all the things that have happened, it's hard to believe it could all be crammed into such a short time period.  It's amazing the things that God has done in her little life and in our family.  Even now, just recently, i've been able to tell people the great things God has done for us and our girl, to strangers.  All b/c of this necklace that i recently got fixed.  It's 3 "Jesus fish".  In the center, they all touch and form a little triangle.  It symbolizes "Be still"...which some of you may remember were powerful words early on.  I've been able to tell them how they didn't really think Ayla would recover and be able to walk unassisted and they see her running and laughing with her brother, like nothing happened.  So...3 years later, amazing things are still happening...I've been thinking as of late, I think some day Ayla will have a "normal" life.  A life without needles and hospitals and doctors and nurses.  A life with out casts and medication and phsyio therapy.  I have never tried to much to think about the future, just take things one day at a time, but i think it will happen...imagine all the things she'll be able to do then.  I pray that we never forget all the things we've learned and seen and felt on this journey...that we never forget to share those things either.  Those miracles that get so easily over looked in our fast paced world.
The miracle of a little girl walking...and playing...and smiling...and HAPPY.Lord help us never to forget...In His Love,Lacy