Category Archives: Family

Family thoughts, events, memories to share

JazCrafts

In 2009, I was looking for a cute toque for Ben to wear – scrolling through Etsy, I came across an adorable pumpkin hat.  Knowing that my girlfriend Jasmine liked to crochet, I asked if she could make us one instead of ordering it from the website.

This slideshow requires JavaScript.

Since then, she has created her own side business and is making the most amazing hats, headbands, scarves, etc.

You can find her two ways:

Facebook: https://www.facebook.com/JazCrafts

Website: http://www.jazcrafts.ca

Be sure to check out the Benjamin’s Bugs hats that she has created on Ben’s behalf.  In May, we will again be participating in the SportChek Mother’s Day Walk & Run for the Stollery Children’s Hospital – both my littles ones will be wearing one.  Support Jasmine’s venture and this wonderful hospital in a super cute way!

Advertisements

Typical two year old or disability justifiable?

“Awwww, your son is adorable

Ben’s disabilities are visibly apparent once you hear how old he is; looking at him as a stranger, Benjamin looks like a regular nine to twelve month old.

It starts very positive – he smiles and shows you he has all his teeth.  How cute!  And then he says “Mom” or “Dada” or “Ampa” (Grampy).  Wow, at his age?

But then he needs feeding, out comes a bottle.  Ummmm, still on a bottle full time?  Wants to play but cannot sit unsupported.  Okay.  Or stand unsupported.  Oh.  Does not roll over, but just from front to back.  Huh.  Requires medication, we grab the tube and syringes.  What is that for?  And on and on and on…  he looks one but delays show that he functions at a lower level.  Wait though, Ben is not one.  He is two and a half.  Faces change quite quickly once the severity and reality of Ben’s disorder sinks in.

Question of Age?

When it comes to Ben’s decision making skills, we have found ways to compromise and create the desired results.  Ben communicates that he is hungry through crying or screaming (or if we are quick enough, just simple fussing); we appreciate his cries because it shows that he is able to ask for what he wants.  We tolerate his continued objections to being hungry as we give him the bottle and watch him tightens all the muscles in his body, bite the nipple and take forever to actually start eating.  His commotion turns from annoying to adorable “nom nom nom” sounds while his eyes roll back and he sighs deeply.  Finally.  Patience, holding him in specific ways, and singing usually results in less fussing, more eating.

Lately, I wonder just how much of this decision making (not eating immediately) is because he does not understand that he has exactly what he wants or whether he is having a typical two year old moment.

Nights like tonight prompt me to lean towards the latter as Ben fights and struggles with his Dad at bed time.  For the past week and a bit, Ben has chosen to scream and argue and protest when it comes to bed time (even though he does not have a “bed time”) and refuses to cuddle with Francois.  Nearly an hour and a half after I went to bed, I woke up to his shrieks and to Francois’ fading patience.  I offered to have him bring Bug upstairs and give it a go, giving Ben cuddles in the same positions, etc.  Within minutes, he was asleep.  Lately, unless he falls alseep independently this is how our nights have gone.

So here lies my question – is this another example of Ben’s inability to realize he is getting exactly what he needs, when he needs it or is indicating some sort of preference as a “regular” two year old would?

As the next few weeks roll on, I am curious to see how often he confirms partiality and how it is affected by his soon to be born, new little sister.

Splish Splash

Over the past few weeks, we are starting to see Ben establish preferences for toys, sounds, food and people.  If the item we give him is not what he wanted, occasionally he will make his “uh-uh” noise and wait until he gets his original choice.

This is especially apparent when it comes to family members and their relationships with him.  For example, play time usually means Daddy or Grampy.  Cuddle time, Mommy, Pepere, or Nana.  That funny voiced woman is Oma and she is going to tickle me or make my feet run.  He will listen as they speak to him on the phone or watch the computer screen intently when Skyping with his Great Nana.

I write this because I get him in one moment that no one else does; Ben and I share bath time and while Francois has tried over the past couple of weeks as my back hurts more, my ability to hold onto him lessens and the room for him on my lap is nearly non-existent to fill in, Benjamin has not been fooled.  Ben does not love his substitute and is often confused when Mommy undresses him and hands him to Daddy in the tub.  His face looking at me like “really?” and “now what am I supposed to do?”.  He will eventually play and splash and kick and laugh but it takes him longer to warm up with Daddy.  With Mommy, he is in and splish splashing away within moments.  We have a routine down pat that Daddy just does not understand.

First, Ben adjusts to the water and makes note of the face cloth, bubbles and shower curtain that surround him.  He also likes having the shower on while in the tub and will often move his head into the rain, but just enough to hit the top of his head.  Every time, he still is surprised when the water trickles down his face and falls into his eyes and mouth;  usually having to gasp for air, even though he is nowhere near choking. He gets his teeth brushed, hair and body washed, then FUN!

He sits on my crossed legs with his own legs straight out in the shower water and KICK KICK KICK. In response, his arms will often splash too although I am still unconvinced he is actually controlling his arms in that moment or if it just how his body responds.  Regardless of whether the shower is on or not, the curtain has to be closed otherwise the bathroom becomes a small lake.  We play for as long as Mommy can stand right now and when it is time to get out, Big Meanie Daddy grabs Ben and dries him off.  Then the screaming starts.

Normally, the screaming would drive both of us nuts (and on occasion, bothers Francois) but the fact that my son finds such pleasure in something as small as bath time with Mommy (and just me!), they remain moments I will treasure forever… no matter how long the screaming ensues afterward.

Benjamin in Public

Ben has, since birth, been a very easy child to take into the public.  We have only had one occasion in the past two and a half years where I have considered leaving a restaurant because he was upset; aside from that day, he has rarely fussed, cried or disrupted anyone around us.

Due to his carefree, loving nature he is quite happy to sit in his seat and focus on his new surroundings.  Listening to strange voices, watching the traffic around him or playing on Mommy and Daddy’s laps.  I bring this up because last night, we waited for nearly two hours at Olive Garden to be seated for my father in laws birthday.  And then we ate for another two hours or so.  The entire evening, Ben did not cry, fuss, have a temper tantrum or disrupt the tables around us in any way (other than smiles and “oooo, look at the cute baby” comments”.  When he wanted to eat, he made the same little pouty noises and unhappy faces he always does.  He was happy and playful, or quite content in his car seat playing with his “atom”.  We are so fortunate to be able to bring him out on occasions like last night without hesitation.

God knows when his sister is born in a few weeks, that will all change.  😉

The Benefit of SibShops

In January, Avery attended her first SibShops which is hosted by the City of Edmonton.  I have copied the following information from the Sibling Support Project website:

“The Sibling Support Project is a national effort dedicated to the life-long concerns of brothers and sisters of people who have special health, developmental, or mental health concerns.

We believe that disabilities, illness, and mental health issues affect the lives of all family members.  Consequently, we want to increase the peer support and information opportunities for brothers and sisters of people with special needs and to increase parents’ and providers’ understanding of sibling issues.

Our mission is accomplished by training local service providers on how to create community-based peer support programs for young siblings; hosting workshops, listservs, and websites for young and adult siblings; and increasing parents’ and providers’ awareness of siblings’ unique, lifelong, and ever-changing concerns through workshops, websites, and written materials.”

When Francois picked up Ave after her course (which lasted an hour and half and included snacks, crafts, games and discussion time), the facilitator pulled him over to find out what Ben’s diagnosis was.  Avery had described it as “something something something Type 3” and while she was not sure of the name, she was able to identify to the group some of the delays and developmental concerns that Bug experiences.  The facilitator was impressed by her communication skills and joked that we have an eight year old, going on twenty (so true).

Immediately following the group, Avery asked if she could attend them all the time and of course, we said yes.  The feeling of comfort and ease she felt through surrounding herself with peers in similar situations is something we cannot provide for her ourselves.  While Ave  pretty well-adjusted to having a brother like Ben, we know she worries and talks about him a lot with her mom and mom’s family.  We did not want to grill her too much about it, wanting to give her space to share her feelings and thoughts independently but we did ask her if she had fun.  Avery’s reply “It’s nice being with other kids who have brothers and sisters with disabilities because they understand.”  I could not help but tear up.  What an incredible girl we all have raised!

For anyone interested in SibShops in Edmonton, here is the link:

http://ereg.edmonton.ca/Activities/ActivitiesDetails.asp?ProcessWait=N&aid=13760

August 18, 2010 Pregnancy Answers

I’ll do this point form; I’ve already gotten several questions about our pregnancy.

  • Yes, it was planned.  Francois and I decided that it wouldn’t matter if we had another “Ben” and started trying on our honeymoon.  It took less than a month.  Crazy!  But it was a completely conscious decision and made before we got any genetic testing results.
  • No, we are not waiting three months to share the news.  Several reasons… first being that we didn’t really see a point in not sharing.  People would know if we miscarried either way (month one or month three).  Another, with Ben’s disability we don’t have a real idea of whether or not it has a relation to miscarriages, etc but like everything else we’ve learned over the past two years, we don’t cross anything out (and again, we’ll just be contributing to the literature on PCH3).  We also have the opportunity to do lots of different testing which is really cool and some of you might find interesting; I would rather share with you in the moment then three months later. Lastly, we’re extremely excited.
  • Testing – anything I want to do genetics related.  We get a bazillion ultrasounds (already had two!!!), are going for a nucleus test at the end of the month, have options for various others – amniocentesis, fetal MRI, etc.  It also means a lot… and I mean a lot of blood and lab work. 😦
  • Hospital.  We’re changing.  We’re going to the Royal Alex this time, mostly for their new perinatal neurology department (our pediatric neurologist is the head doctor) but also because my mom won’t let me go back to the Grey Nuns.  (haha Mom!).  Also means a new Obgyn who I met today and seems super cool.  Moms delivering at the Alex, get to labour and deliver at the new Lois Hole Hospital which apparently is amazing!

That’s all I can think of… if you have any questions, please let me know.  As most of you know, we are a (mostly) open book!

March 1, 2010 As Benjamin’s Parents

As Benjamin’s Parents

A few weeks ago I was speaking with a friend about Ben; she kept saying that he would sit up soon. Any day now. I kept saying that we hoped he would but that we could not say for sure. She didn’t understand. Of course he’ll sit up. Maybe, maybe not. It took me a minute to realize that she would not be able to comprehend Ben’s possible inability to reach that milestone. I, personally, believe that Ben will be able to sit up. And I hope he will stand. And walk. And talk. And blow kisses. But I don’t know any of this for sure.

A day in the life as one of Ben’s parents or caregivers is about trying to find routine and a system that works with a child who cannot follow a set schedule. I wanted to provide some insight into the work and effort that does into having a son with a disability.

Morning
– Ben’s overnight pump alarm goes off between 4 and 6 am. One of us gets up turns it off, adjusts his feeding tube, flushes his tube and if we’re lucky, makes sure he stays asleep.
– Ben gets medication in the morning, one orally and one that we push through his tube because it tastes disgusting. Prevacid to help control his reflux and Ferrasol to help with his iron deficiency.
– His site needs cleaning, the gauze replaced if it is bloody or mucky. This gets done again in the afternoon and in the evening.

Day
– Ben requires constant attention and stimulation. He is consistently working on his muscle strength, motor functions and visual ability.
– We are also working on incorporating textured foods into his diet and he is currently at the level of an 8 month old.

Evening
-We bathe Ben daily to ensure his site gets a proper clean. He is just beginning to adjust to the water and beginning to feel comfortable with splashing and immersing more than just his legs.
– Ben continues to wear his braces nightly to correct his right club foot.
– He gets a second dose of Ferrasol.
– Ben is hooked up to a feeding pump every night between 10 and 11 pm. We adjust the volume according to his health and how much he eats each day; for the past two weeks he has been receiving 33 ml over an hour until he finishes an entire 8 ounce can of Pediasure Plus.
– Ben’s crib and pump have taken over our room; we are far too fearful that something may go wrong and have decided to keep him nearby. Regardless of where he sleeps, neither of us sleep well.

Long term, we have no idea what will become of our little man. We are hopeful that with commitment and dedication we’re providing Ben with the best opportunity for as regular and able life that we can. Ben’s neurological disorder is so uncommon that there is barely any documentation on it, we have no idea what to expect or what will happen. If we’re lucky Ben will live a long and amazing life; in the back of our minds and hearts, we know that this may not be the case.

A Better Breakdown
We are learning more about our beautiful son every day and want to share where he is at.

Brain
Ben was diagnosed with Ponti Cerebella Hypoplasia Type 3. His cerebellum and brain stem did not develop fully while in the womb and it’s this disorder that has been the cause of his other complications. Infant fatality rate in children diagnosed with PCN are extremely high and are most often caused by respiratory problems. Fortunately, for now, Ben’s lungs are healthy and free of concern.

Eyes
PCN has caused the visual problems Ben is experiencing. He has been diagnosed with Optic Nerve Atrophy and delayed tracking ability in both his horizontal and vertical vision. Picture Swiss cheese and having to constantly look through the holes; that sums up his ability to see. Using toys and other forms of stimulation, we work on increasing his visual strength but are unsure how will help long term.

Tummy
The NG tube did not work and so now Ben has a Gtube which we use for supplementing his feeding overnight. Regardless of how much he eats in the day we give him a full can of Pediasure Plus. As mentioned before we also are working on getting solids into him.
At present, his site is swollen and the skin is growing over the plate. We are working at stopping this and wanting it to heal a little better.

Arms, Legs, Trunk
We continue to work on Ben’s motor skills and muscle strength. Just recently he’s begun reaching for things with two hands and clasping objects between them. He is also getting better at sitting up and seems close to getting it. We have ordered a GRIP seat which holds him up and supports his trunk but enables his hands and arms to function regularly, working on his core strength. We are also looking into a support stand that will hold him in a standing position against the couch, etc, working on developing his leg strength.

Feet
Ben continues to wear his braces most nights. He has not been to the orthopaedic doctor since last May and needs a follow up appointment scheduled.

We have ongoing appointments with the feeding team, home nutrition, physical and occupational therapists and the CNIB. We hope that if we maintain contact with as many resources and supports as possible, we’ll be giving the best opportunities available.

What’s this all about?

Welcome to our family blog!

I had been using a Facebook group to update friends and family about our little anomaly Ben but it is not nearly as convenient as using WordPress.  Plus I can add pictures where I want.  AND, this is much prettier.

The posts that follow be in chronological order of how we learned of Ben’s disability.  What it has meant since then and future follow ups.

Thanks for reading.