Some history on our Lila girl. And some Christmas magic.

As I'm finishing up
this blog post
Lila is playing with
her Doc McStuffins
interactive book.
She asked to have her
iPad and I told her she
needed to clean up
her toys first.
So of course
she got distracted
and hasn't asked for
her iPad again.
Love it.

 Lexi is watching
Signing Time,
per her request.
That's right.
She gets this determined
look in her eye and starts
signing "time",
the same way
every single time,
her version of telling
me that she wants to
watch Signing Time.
Girlfriend knows what
she wants and she CAN
get her point across,
even without spoken words.

I am wearing
a Santa hat,
as I have been for
the last 4 days.
It cracks me up.
Not sure my family
is as amused as I am.
; )

And now, 5 days after
the first 3 paragraphs
were written,
I am FINALLY
finishing this blog post.

*************************************

Before Lila started

receiving IVIG treatments,

she was sick a lot.

Our pediatrician told

us that it was because

she had Down syndrome.

I didn't agree.
After she had
strep and two
different types of
staph within the same
month I decided that
enough was enough.
I called Infectious Disease
and they agreed to see Lila.
They ran some tests,
referred us to hematology,
and it turned out
that my mama instincts
were correct.
There was much more
going on in Lila's little
body than just Down syndrome.
She was diagnosed with
hypoimmunoglobulinanemia
along with a couple of other
immunity related issues.
She started IVIG treatments
right away.
Once a month we
would travel about 45
minutes each way for a
4 to 5 hour treatment.
Lila got really good at
being brave when her IV
was being placed.

Then we moved to Colorado
and after a few months
of receiving her IVIG
treatments at a new location,
Lila's veins
started getting tired.
After we had to completely
stop an IVIG treatment
because we ran out of
veins to try, the
doctor told me
it was time for
a port placement.
That freaked me out.

Getting a port has made
things so much easier on Lila.
Every month we put the "magic"
cream on about an hour
before her treatment and
then Lila isn't nervous
about her port being accessed
because it's "no hurt".

Getting IVIG every month
is just a part of Lila's life,
and it has been for about
3 years. 
 
Every time we have gotten
invited to an event sponsored
by the Center for
Cancer and Blood Disorders
I have politely thanked them
for the invite but have chosen
not to participate.
Until this summer when
Lila's doctor sat me down
and asked me why I don't
let Lila participate in the
activities that are available
for her.
I told him how I didn't
feel like it was right because
Lila only has issues with
her immune system and
not cancer.
He just shook his head.
He said that most childhood
cancer patients go through
treatment for cancer and
then, for the most part,
they are done.
He reminded me
that Lila has a lifelong condition.
A chronic, life-threatening
blood disorder.
He said that she deserves to
enjoy the good things offered
to her.

My mama heart
felt guilty.
We started accepting
invitations to events.
I still feel guilty
when I look around at
little ones who
are battling cancer
but I know my little
girl deserves to be
at the events just
like they do.

A couple of
weeks ago,  we
went on a train ride
to see Santa
at the North Pole,
otherwise known
as Pike's Peak.
The train ride was
sponsored by
Children's Hospital
Center for Cancer and
Blood Disorders.
I cannot describe how
much fun we had.
Well, some of us had fun.
I'm pretty sure that Lexi is
still a bit freaked out
by Santa.

Lila and sweet Lily,
who is bravely battling
leukemia right now.

 

 

Lexi doesn't know what to think!

A bit blurry, but the only one we have


Lila was thrilled
to find out that
Santa, Mrs. Clause
and the elves
were riding back tothe station with us!

Did I mention she was excited?

The icing on the cake
was when Santa came
around and read
The Night Before Christmas
to every single group
on that train.

 

It was a magical day.



xoxo,

Linda