It's been a long time since I have posted anything about Sierra and I feel
that it's time so family and friends can know and understand what's going on
with her and her struggles.
There were many ups and downs after Sierra's arachnoid cyst was removed.
The CAT scan taken a month after her cyst was
removed did not look good.
There was more
fluid on her brain again.
Her surgeon
didn’t want to put a shunt in because she was showing no signs of pressure on
the brain (which was bewildering to him) so he said let’s give it another month
and see how it looks.
That visit kind of
broke me and Brandon.
We were very
upset, a little depressed, and expected her to have a shunt placed to drain the
fluid after her next CAT scan.
I kind of
pushed it all out of my mind because it was so upsetting. After a month I took
her to the hospital for a CAT scan and waited to hear from the surgeon.
When he called back he said that there was a
little more fluid then the month previous and he wanted to watch it for one
more month and then he would make a final decision.
I came to the conclusion that she was going
to have a shunt and I just needed to expect it.
Brandon became depressed.
As the
time approached I started to make arrangements for me and her to be gone the
next week for surgery.
After her final
CAT scan I called multiple times and when his nurse called us back she said
that he did not have time to look at the scan today but would look at it first
thing in the morning, so you can image my surprise when a nurse from the Pediatric
Center called in the evening with a report.
When I answered the phone she jump right in and said “Mrs. Peebles the
CAT scan shows that there is less fluid on the brain then the month
before.
I was sitting at the table doing
homework with the kids and was a little confused so I asked her to repeat
herself please, so she did.
The next
time I didn’t believe my ears, literally, so I said to her, “Let me make sure I
understand you correctly, you are telling me that my daughter has less fluid on
her brain then the previous month?”
Which
her response was “Yes, she has less fluid”.
I then told her thank you, this is incredible news which she then
realized how important this phone call was.
The surgeon called the next day and told us the same news and said that it
looks wonderful and he would like to see her in January and he would like her
to have an MRI of the brain to get a really great view of the brain to make
sure there are no other pockets of fluid.
So . . . Sierra is finally on the mend and starting to feel a whole lot
better.
We also noticed that she is finally
starting to sleep through the nights.
We
think that the pressure on her brain really affected her, especially her
sleeping habits.
THERAPY:
After her surgery she started with speech therapy, physical therapy, and she
is still seeing Corwin for occupational therapy.
Cade is her physical therapist and he is
really great to her.
He grew up with a
sister whom was born with a disability which was never diagnosed so he has a
really big soft spot for children like Sierra.
I can’t say this to him but there is so much true Christ Like Love in
his eyes.
He hates to hear her cry
though and has a hard time making her do things that make her really mad.
Corwin told me that Cade came to him after
the first few times expressing how hard it was for him to make Sierra cry and
wanted to know what to do.
Corwin told
him that the only way to help Sierra is to make her mad.
He then told him how Sierra often threw up
during therapy with Corwin when we first started to see him.
Sierra can crawl on her hands and knees but prefers to army crawl.
She started to pull up on her knees a few
weeks ago which is a really big step.
Cade is really trying to help her walk.
We have a goal of her walking around furniture by her birthday.
I REALLY hope this will happen.
Because of her minimal depth of field she has
a great fear of heights.
It was scary
for her to put her hands on the ground and go from sitting to laying because of
that fear.
Her fear keeps her back more than
anything else.
Sierra sees Erin for speech therapy and she is AMAZING!!!!
Erin has diagnosed Sierra as
EXTREMELY STUBBORN.
I will have to admit that I was shocked to
see this side of Sierra come out in speech therapy.
Her peaceful temperament hid her stubbornness
very well.
During therapy Erin pulls out some toys and will only give then to Sierra if
she asks.
Sierra knows the signs for “more”,
“all done”, and “eat”, but she refuses to sign for “more”and “eat” and the more
we ask her to do it the more she refuses to do it.
Erin has become quite frustrated.
Sierra
will only sign “all done” when she wants to be done with something.
We are also working on word recognition and
following direction.
Corwin still comes to our home and is working with Sierra on the
stairs.
She climbs up two stairs and
then goes down them.
She is also working
on eating with a fork.
She prefers to
eat with her hands.
It has been really hard to add these other two therapies into our family’s
schedule.
I get really frustrated
sometimes because I feel like I have no one to help me.
I had a really hard time finding someone to
watch Cameron so I could take Sierra during the day on Wednesday’s.
I basically had to guilt my neighbors into
doing it telling them I couldn’t find anyone else.
At first she said no and then she called back
and told me her husband said he would do it.
I was really nervous about them watching Cameron because he is really
busy and a lot of work.
I warned them
that he likes to escape outside.
I was
really, really worried that something would happen to Cameron while I was gone
and then one day something did.
I came
home early from therapy because Erin was sick and cancelled and when I pulled
up Jarred came running up to the car and told me that Cameron has been missing
for 20 minutes and he can’t find him anywhere.
I called 911 and Brandon and started to panic.
We found him down the street in someone’s
yard a little bit after I got home and he was ok.
I cried about it to Brandon saying that I can’t
take Cameron anywhere because he will never make it to his third birthday.
He needs to be babysat in our house where he
is trapped inside.
But logically it can’t
happen.
If I refuse to leave Cameron
with someone then Sierra doesn’t get the help she desperately needs.
Can you understand my frustration?
I sometimes feel like complaining to the Lord
asking why he gave me this trial and didn’t give me anyone to help me. When I vocalized
this to my dad he said “Well look at it like this, your neighbor did agree to
babysit when no one else would and the angels were watching over Cameron when
he went missing.
I don’t know.
It’s all about perspective and being grateful
for the help we do get, but I need soooooo much more help and I feel like I’m
drowning sometimes.
Brandon has had to
help me four times in the past two weeks during work and the last time he
expressed his frustrations and how it’s effecting his work.
I don’t know what else to do.
Do I cancel important doctor appointments for
Sierra?
Do I cancel therapy?
The last time I went down to Utah we couldn’t
find any help so Brandon called his Grandmother who was sooooooooo generous to
come down and babysit Cameron so Brandon could go to work and I could take
Seirra to Utah.
I hope that when we move
I can find someone to help me because I really need some help.
Aside from all of her disabilities Sierra is EXTREMELY happy and healthy
right now.
She loves when anyone will
sit with her and give her attention.
She
is becoming a big time mommy’s girl.
Whenever I walk into a room she gets excited and comes over to me and
wants me to hold her.
Though life is
harder with her, I can’t imagine my life without her in it.
Sometimes others can be too focused on “perfecting”
and think that true happiness only comes through perfection (perfect house,
perfect body, perfect children, etc.).
What I have learned is that true happiness comes through the imperfect
things in life.
