My last post was September 27, 2012. My next post wouldn't be until October 29th, 2013. It took me over a year to process what was going on with our family. What was going on with our baby boy. And once I did process it all, I wasn't immediately ready to share. I was reeling. I was hurt. I was scared.
I go on to explain our situation in a lot of detail here - even reminisce a bit about our birth with Kiefer. I have to remind myself - we've already beaten the odds. I wasn't going to have another baby. I wasn't supposed to have a VBAC. So now, when people tell us what Kiefer isn't "supposed" to be able to do, we look them in the face and say, "we'll see".
It's a long one, but a good read if I do say so myself. Our normal just got redefined.
TUESDAY, OCTOBER 29, 2013
Our Normal
God only gives you what you can handle.
Why does it seem sometimes that He has over estimated my
abilities? 2 years ago we started our
long journey with Kiefer to discover more and more about our son that we never
dreamed we would be hearing.
Giving birth to Kiefer was such an absolute high, at the
time I would never even imagine what our lives would come to be like, and that
our new life with Kiefer would be our version of a ‘normal’ day.
I had a caesarean birth with my first two sons, so it was
just automatically assumed that my third pregnancy was going to end the same
way – with a caesarean birth. I was
determined, however, to at least give myself a shot at a natural vaginal
birth. I knew the odds were stacked
against me, but it wasn’t going to slow me down. I called almost EVERY midwives office in
southern Ontario. Call after call ended
all the same way. “Oh, you’ve had two
caesareans? I’m sorry we can’t help
you”. Until I happened upon the Midwives
of Scarborough. They were un-phased by
my two caesarean’s. The fact that I
scheduled my second caesarean and it was not out of necessity, they felt, meant
I had only experienced one trial of labor.
So with my “I just want my shot” attitude, and determination, they took
me under their care. Even when we had
to consult an OB at 37 weeks, my resolve didn’t fade. While the doctor stood arms crossed in a firm
demeanor, he told me he “should” be recommending a third caesarean, but I think
even he knew, I wasn’t going to buy it.
Quoting facts and statistics, published articles from medical journals,
I knew my information cold. But really
at the end of it all, I just wanted my shot.
“If A leads to B leads to C and I have a natural birth then
why can’t I at least try? If we stall at
A or B or anywhere along the line I will be the first person to tell you to get
me in that OR and get my baby out however necessary”.
Well I guess that’s all he needed to hear because he
‘blessed’ the trail of labor and even gave us tips on how to deal with ‘not so
cooperative’ doctors we may encounter when we go into labor and arrive at the
hospital. October 14th when I went into
labor around 8 pm I quickly realized that our OB was on call starting at
midnight and HE would be the one present for my son’s birth. I knew then, that there was another hand in the
matter guiding us and helping us on our way.
I felt like a celebrity in the hospital that morning. Nurses from other floors asking if they could
come in the room to meet the woman who had given birth naturally VBA2C. My husband over heard one nurse talking to
our midwife. “She had a VBAC?” “NO, a V-TWO-BAC” my midwife proudly
corrected. For the first time I felt a
warm wet baby on my chest and was able to nurse within MINUTES of giving
birth. I was elated when we were
discharged and went home only 3 short hours later.
We were living in a dream world. Our birthing story was perfect. Our new baby boy was perfect.
Fast forward a year.
I started noticing that Kiefer would get VERY tired right before
naps. So tired, in fact that his eyes
would start to roll to the back of his head right before any nap, and before
bedtime. It seemed completely normal to
me. Babies often sleep a lot of the day. It was another year later when he was walking
and moving around a lot more that our concern was raised. One day while he was playing in the same room
as Paul and me, we noticed his eyes roll back and he stumbled a little
bit. He came ‘back’ very quickly and
resumed giggling and laughing as he was before the ‘episode’. Not being near any nap time, Paul and I
exchanged a look and we knew something was wrong.
“That wasn’t just tired Krista.” Paul said to me.
“No, I know.” I said
my heart sinking. While the boys were in
school the next day, I took Kiefer to RVH, our local hospital. We waited in the ER for a long time – the
whole while I was observing Kiefer having more of these episodes. We finally saw a doctor and he couldn’t
really tell us what was going on – so he referred us to a pediatrician who just
happened to be in the hospital at the time.
As luck would have it, as he came to examine Kiefer, he had
another one of his episodes.
“Oh,” he said, “Is that what you’re talking about?”
He went on to inform me that Kiefer was having petit mal
seizures. Not the kind of seizure where
one would be thrown on the floor into convulsions, but minor breaks in the
brain where we couldn’t ‘connect’ with Kiefer and his brain wasn’t ‘connecting’
with him. He assured us that no brain
damage was happening. The seizures were
barely measurable at less than 2 seconds in duration. He took a baseline blood sample and told me
that he would be ordering an EEG and CT scan so we could determine what kind of
seizures Kiefer was having. He also
ordered a prescription that Kiefer would now take 2 times a day to manage his
seizures.
“Could this explain his language delay?” I asked. At 2 years old, Kiefer was barely
verbal. He spoke in one word phrases
here and there but mostly it was pointing and grunting that was his main form
of communication.
“Every time Kiefer has a seizure,” the doctor explained
“It’s like his brain is going to sleep and then waking up again. He has to remember where he was, what he was
doing. So yes, it could definitely
explain why he is delayed.”
Well at least THAT was some good news. There was a reason my little boy couldn’t
communicate with me.
6 months went by and after numerous phone calls we still
didn’t even have an appointment for an EEG or CT. We had no further blood work. We had no further answers. On top of that, our OB had stopped returning
our phone calls and I could not get a hold of him. Unsatisfied with the progress we were making
I just packed Kiefer up one day and made the drive down to Sick Kids in
Toronto. We went to the ER asking to be
seen and told them that we were making no progress. Hesitant to do any further testing when we
were already being seen for this condition the doctor offered to try and reach
my pediatrician for me.
“Perhaps if they get a call from Sick Kids they will be
quicker to respond”.
We waited around the hospital for 3 hours expecting that the
pediatrician would call back.
Thankfully, he did NOT call back and we were then referred to our
pediatric neurologist. The doctor was
aghast that our pediatrician, who’s voicemail had indicated he was there that
day, did not return our call – even after the plea from a doctor from Sick
Kids.
Our pediatric neurologist saw us relatively quickly but
informed us that to get in for an EEG or CT at Sick Kids was probably going to
take another 6 months. That was
fine. As long as some progress was being
made. The doctor also referred us to the
Simcoe Health Network as we had expressed some concerns about Kiefer’s
delays. The network called us and walked
us through a questionnaire so that they could determine exactly where Kiefer’s
needs lie. At the end of the assessment,
they informed us that they would be recommending Kiefer for speech therapy and
a resource teacher to visit him at his now preschool.
I was happy. Things
weren’t perfect but at least we were getting treatment and at least things were
moving along. Kiefer still had
‘breakthrough seizures’, meaning there were still seizures breaking through the
medication, but they were much less, and things seemed to be more
controlled. Kiefer’s neurologist did
have some more news to give us.
“Typical seizures in kids Kiefer’s age are generally
outgrown by the time the child is 8 or 9 years old. The chance of outgrowing seizures when they
are ‘typical’ seizures is 80-90%”.
That’s GREAT we thought.
He will catch up with the help of his therapy and by the time he’s 8 or
9 you’ll never even know he went through all of this. This will be just a minor speed bump in his
development. He went on.
“Unfortunately, I think Kiefer is having “atypical” seizures
which are a different type of seizure.
They are resistant to treatment which would explain why you are seeing
so many breakthrough seizures. They are
also less likely to be outgrown. That
rate is 40-50% chance of outgrowing it”.
Again, my heart sank.
Paul said it was still a GREAT chance of outgrowing it. That if we knew we could win the lotto with a
40-50% chance of success of COURSE we’d play right? I still felt deflated.
Months later the EEG and later again, the CT would confirm
that Kiefer was having atypical petit mal seizures. The medication was doing a good job of
controlling the seizures as best we could expect. And being at preschool was amazing. Kiefer started in September still speaking
only 1 word here and there, and by January his vocabulary had exploded. He had still only moved up to speaking 2 word
phrases, sometimes three, but the depth of his vocabulary was now extensive –
and he would repeat after you and mimic what you were doing. Again we thought we are on the right track. Kiefer is going to be just fine.
As a part of being part of the Simcoe Health Network,
several other assessments were recommended.
A psychological educational assessment was recommended along with the
ADOS assessment. ADOS is the autism
testing, but it was recommended to us to rule it out.
The psychological assessment was done by a psychologist and
was very stressful. I watched behind
glass as the woman doing the test moved hastily and in an almost agitated
manor. Kiefer kept to his happy go lucky
self and completed all the tasks as best he could – with a smile on his face
for most of the time. At the end of the
assessment, the psychologist spoke with me.
“Kiefer’s IQ is very low.
He likely will never learn in a traditional classroom manner. He is however showing ‘scatter skills’. His letter recognition is in the 80th
percentile for his age group. And
numbers in the 90th percentile. It is
my recommendation that Kiefer be assessed for autism. I cannot diagnose Autism, but I think it
something you should be ready to hear.”
My heart broke instantly into a million pieces and yet I
wanted to punch her in the face all at the same time. She wasn’t paying close enough attention to
him. She was rushing the tests. And when she said he didn’t make eye contact,
he DID, just not on that question. I
felt my Momma bear inside rising up and I had to tame her quickly.
“Well I noticed in the puzzle question he didn’t make eye
contact with you but when you were playing with the blocks he was making eye
contact and looking to you for guidance.”
I tried to remain calm.
“Well we weren’t testing for eye contact in that particular
question.” Okay really lady? He’s a KID.
Not a clinical trial from a computer program. Don’t you have to take the CHILD into
consideration? Not just the range of his
specific answers at a specific given moment?
“Well we are already registered for the ADOS assessment, but
we were using it more as a tool to rule it out than to get a diagnosis.” Now I not only wanted to punch her but claw
her eyes out a bit too.
“Well don’t be so quick to dismiss it. He’s a great kid. He’s just not going to learn the same things
like other kids. You won’t be able to
expect the same from him as a ‘normal’ child.”
As she made the quotations motion with her fingers in mid-air, I
suddenly wanted to snap each one of those fingers from her hand. Not only was she not paying close enough
attention to him, she wasn’t listening to me.
I left a bit broken hearted but more in a resolve to show
what Kiefer COULD do. He was a great
kid. He had compassion for others. He loved to hug and snuggle. And he’s SOCIAL. Every kid in his class knows his name and
loves to say “HI KIEFER” when he gets to school and Kiefer delights in saying
hi back. If someone is sad, he’s the
FIRST to bowl them over with a bear hug.
If someone yells, weather at him or not, he is the first to say “sorry”
with head hung low in disappointment that he let someone down. This sympathetic emotional social child of
mine surely is NOT autistic. It’s just
NOT the picture of autism that I see.
Kiefer has had other set backs medically as well. He has had surgery for a minor physical
repair. Thankfully while I was still
nursing so a quick nursing session after surgery calmed him right down. He has been to Sick Kids for both the EEG and
CT scans.
This is our new normal.
We tell Kiefer he has an appointment or has to see the doctor again and
he squeals with delight. We administer
brain altering medication to our son three times a day…but in pink liquid form
it just feels like nothing. Our medical
team consists of a pediatrician, a pediatric neurologist, a resource teacher, a
psychologist, speech therapist, occupational therapists, and the list goes
on. We sit in waiting rooms at Sick
Kids, the clinical white walls screaming out from behind the cartoon character
stickers. We over hear that one girl is
having her 8th CT in 3 years to monitor the brain shunt she has in her
head. She’s a young 6 years old. Suddenly we are thankful for our ‘normal’.
I think about that perfect warm wet baby placed on my chest
and I want to go back in time and savor that innocent wonderful moment again
and again. You could never have told me
that this would be our new normal. Just
another day in the Birkbeck household.
And somehow, we’re still thankful for the wins we do have. That we still have a boy to work with. That we have wonderful people in our team for
Kiefer. That (mostly) everyone we meet has
great faith in Kiefer and won’t succumb to the “well he can’t do that so I
won’t even try” attitude. Our team is
actually made up of people who don’t think Kiefer IS autistic – right down to
our pediatric neurologist – who obviously deals with many autism cases. Every exercise or task we’ve given Kiefer,
wondering in the back of our mind, “can he do this? Will he learn this?” he’s done it. He has amazed us at every step of the
way. With his happy demeanor, with his
loud “HI!” and with his “Big hug?” requests that always come at just the right
time.
He hasn’t given up.
And while I question if God truly knows what kind of strength I have, I
won’t ever give up on a kid that clearly hasn’t given up yet himself.
