Our Normal

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.