Ayla update 3-20-13
Good first day of spring to
everyone!! NOT! It’s freezing here and been snowing on and
off all day…so much for that.
It’s been quite a while since my
last update, but Ayla just had some appointments at Sick Kids in Toronto on
Monday, so I figured now was a good time to send an updateJ
Well Ayla is 5 now! She had her birthday just over a month
ago. She had a sleep over and then I
took her and her friends to the movies. Birthdays
and special occasions make me reflect on…basically her whole life. And helps me to see and remember once again
all the amazing things God has done in her and our family’s life. Her 2nd birthday, she was still
very ill and they were saying that she may never walk again…unassisted
anyways. Her 3rd birthday was
the 3rd time she broke her leg.
Her 4th birthday was a celebration of ONE WHOLE YEAR WITH NO
BROKEN BONES (man…I remember her walking out of where we had her party and her
falling down and that gut wrenching feeling of, “oh no.” But it was just a regular kid fall). And now, 5.
And we are so far past most of that stuff it almost seems like it never
happened. Almost…
I think the little reminders here
and there are good to keep reminding us of all that God has done for her (and
us) and all that He can do for her (and us).
Reminders like, going to preschool and needing physical therapy, the
cast she has to wear at night, the way her feet and legs are stiff in the
morning, the weekly injections, daily meds, biweekly blood work, wondering if
she’ll pick up some bug and end up the hospital because her immune system is “weak”,
and that small voice in my head when she’s running on pavement or climbing
stairs that makes me go ‘eeeeeek’ in anticipation of a bad fall. But for each of those things…God is so
evident in them.
At her preschool, she’s grown
socially in so many ways, from being scared to be touched by other kids to
making friends and crying when she has to leave for therapy! And we’ve formed relationships with her
teachers and therapist that are great!
In therapy they have to look for new ways to stretch her now because
she’s doing so well, she’s almost caught up gross motor wise to kids her own
age. And the therapist who used to be
her enemy, the ones she used to scream and throw up because she hated therapy
so much, are now considered friends. She
loves her cast at night b/c it keeps her leg warm and she actually prefers to
crawl around in the morning with it on rather than take it off and walk…because
it feels good. The lab person that does
her blood work, Maria, has a relationship with Ayla now. She knows her and gets all ready when we come
and calls Ayla her special friend and Ayla won’t do blood work anywhere else
b/c she gets snoopy band aids and a juice box every time and these days it’s
usually only one poke. Thankfully even
though she’s immune compromised she is actually very healthy! (God is so good
like thatJ ) And that voice in my head when she’s running
or climbing…reminds me to trust God, he’s with her and protecting her when I
can’t. And even IF something bad
happens…we’ve seen clearly the good He can do with the bad things.
The weekly injections though, after
2.5 years are getting harder for her and we are looking for ways to reward her
in this. You would think after so long
it would be easier…but she gets so upset she throws up almost every time now. And the daily meds, Praise the Lord are no
longer cut, peel, and crush pills but a strawberry liquid finally approved by
the govt!
Ayla is growing like a weed. For a kid that was below the growth chart a
couple years ago she’s not in average range and skyrocketing for height and
certainly gaining ground for weight. I
won’t forget when the endocrinologist said, “well according to yours and your
husbands height and weight, she should be here, at the top of the chart…well
she’s actually not even on the chart she’s so small.” She’s grown another 3 inches almost in the
last 8 months! So much for being worried
this disease would stop any kind of growth.
And she is nearly perfectly symmetrical in the length and width of her
limbs, which was a worry early on.
The doctors at Sick Kids think the
medication is working and that her skin/fascia feels better in most areas. The area with the most amount of tightness is
her lower legs/ankles/feet. So because
she’s doing so well they want to our therapist to try some “aggressive” therapy
on this area, so we are back to wearing her night cast (which is fine b/c she
loves it). And we’ll have to figure out
what else we can be doing to loosen up those areas but part of the problem is
that she is growing so much… which is why we see such tightness and stiffness. OH WELL!
Grow girl grow! So I’m sure God
will give us ways to keep stretching all that out.
Ayla will be playing T-ball
starting in a couple weeks and has been doing karate through a special program
for kids with special needs. She’s
excited for T-ball to start and can hardly wait! She wanted to do soccer like big brother…but
mom isn’t ready for that heart attack yet (and certainly not hockey!) plus
something slower paced is more her speed because she prefers to soak things up
and understand them before she participates.
Total opposite from Ezra.
Ryan and I will be going away in a
few weeks for our 10th anniversary.
Ryan’s parents will be watching the kiddo’s for us. Please pray for them and the kidsJ I’m sure they will all have fun. Ryan and I are very much looking forward to
going away…finally a “honeymoon.” We are
going on a cruise, so pray we don’t sink too if you have a moment. J
Thanks everyone and I hope you know
how appreciative we are for each of your prayers and parts of our lives. We continue daily to look for ways we can
bless others the way you all have blessed us…ways to be like Jesus to
others.
I have a request, if you don’t
mind. My niece has been sick for well over a month now with different things
going on…and she doesn’t seem to be getting better. They thought it was just a virus, but now
there are more symptoms popping up and she and her family are growing
frustrated and weary. I remember vividly
what that feels like, so say a prayer for a little girl named Ava and her
family please.
Love and Thanks!
Lacy
