Tuesday, 26 May 2015

I'll take Potent Playtime Potables for $1000, Alex

I've noticed that having a child with visual and hearing impairments along with gross motor motor delays can make playtime difficult. Gideon is almost 9 months old but he can't sit up on his own or crawl.  He is starting to roll and occasionally will get stuck on his tummy like a turtle on his back.   This means that he doesn't have the upper strength for swings, jolly jumpers and exersaucers.  He does a lot of his play on the floor.

For Gideon, I've had to find/make a variety of textual treasures.  I thought I'd share some of the toys he is most interested in right now.


RED ROPE LIGHTS- Gideon has really been enjoying a set of red rope lights.  Red is a really easy colour for people with visual impairments to see plus they can be mouthed because a) he has no teeth and b) they do not heat up.

SPINNING LED LIGHT WAND-  This little light is a such a motivator for head movement.  As soon as he sees it, he is engaged and will follow it wherever it goes.  It also vibrates slightly which is a bonus.  I think I picked it up at Walmart but you could probably find one at a dollar store.  


LEARNING CURVE BUZZING BEE- This is a chew toy that will vibrate when bitten.  It gives a very gentle vibration and massages the gums.  The loops are just large enough for handling and make it easy to grip onto and manipulate.

O BALL WOBBLE BOBBLE - This has got to be the very favorite right now.  This ball vibrates when touched.  The "switch" is very easy to activate and the vibration is so intense that you can feel it across the room.  The "on time" is just right too; Not too long and not to short for feedback.  Gideon just loves it!  It's also super funny to watch him shake.

Button sewed onto a shiny gift wrap bow

Maracas- cha cha cha
Small strainer that is light and easy to manipulate
Gideon enjoys exploring a variety of small handheld toys.  The small toys seem to be easier to manipulate and understand. He seems to prefer the harder items and tends to shy away from soft things like stuffed animals.

Of course I couldn't leave out how much he likes it (on most days LOL) when I kiss and tickle him.  I can't say enough how happy I am that he will tolerate me and actually smile and laugh on occasion when I interact with him.  These moments are priceless.

Wednesday, 20 May 2015

Driving my Life Away

Yesterday I left the house at 5:45 am to drive down to London to see our new ENT for an early appointment.  Although I was tired and a little grumpy, the appointment went well.  We now have a surgery booked for next week to insert tubes and take the fluid out of Gideon's ears.  They will also do a hearing test while he is under sedation.  This means that we should be getting the new hearing aids sooner rather than later.-  Good Stuff!!!  I also had an appointment with our eye surgeon to check up on Gideon's post surgery healing.  She thought that Gideon's eyes were looking great.  So far there are no little white specks.  She also gave us the OK to put his contact lenses back in.  I'm still nervous about the cataracts coming back.  I think it was just over a month post surgery when we noticed them coming back last time.  I didn't get home until around 8:00 pm and I was over done and over caffeinated.  What a long day! 

Days like this are hard for everyone.  I saw Alex for all of 5 mins, when I woke him up to sing him a lullaby, kiss him and explain to him that "yes, mommy will always come home".  Being away so much is hard on Alex.  It messes up his routine and makes him act out.  Poor Gideon spent most of his day in his car seat.  How is he suppose to work on his gross motor skills when he is stuck in that seat all day?  Also, it is really difficult to try and feed him solids while we are on the road.  I usually just stick with bottle feeding, which again is not helping us with our current struggle with new food textures.

These road trips are tiring but I have some coping methods for myself.  These include coffee - lots of coffee- and a stack of old CD's from my late teens/early twenties.  Bathroom breaks are also great.  Nothing feels better than emptying a full bladder when you think you might pee yourself... am I right ladies?  To be honest though, sometimes I enjoy the drive.  It lets my mind wander and being in motion somehow calms me.

My coping methods for Gideon though are sadly lacking.  I try to put a couple of toys in his lap and have Vivaldi's Four Season's available on hand.  (Vivaldi is like a light switch.  Full out inconsolable wail turns instantly to quiet soothed listening.)  Although I usually leave the house early so we can made a quick stop or two, I have to keep on trucking to make it to our appointments on time.  This means that pit stops can't last forever and Gideon has to try and console/occupy himself or sleep.

How do you deal with having young children on the road?  Any tips?

Friday, 15 May 2015

Let's Talk Vision My Little Blind Bat

Let me open your eyes to the world of vision loss.  (Sorry, couldn't resist the grandpa joke) There are a lot of terms thrown about when talking about vision and how they apply to Gideon can be confusing.  Right now Gideon is considered to have a visual impairment.  This means that Gideon has an eye condition that effects how he sees and it can not be fully corrected with glasses or contact lenses.  He will never have 20/20 vision.  He will always see things differently.

As defined by the World Health Organization -

There are 4 levels of visual function, according to the International Classification of Diseases -10 (Update and Revision 2006):
  • normal vision                       
  • moderate visual impairment   
  • severe visual impairment        
  • blindness                        
The American Optometric Association has this definition:

  • 20/30 to 20/60 is considered mild vision loss, or near-normal vision
  • 20/70 to 20/160 is considered moderate visual impairment, or moderate low vision
  • 20/200 to 20/400 is considered severe visual impairment, or severe low vision
  • 20/500 to 20/1,000 is considered profound visual impairment, or profound low vision
  • less than 20/1,000 is considered near-total visual impairment, or near total blindness
  • no light perception is considered total visual impairment, or total blindness
What does this mean for us?  Well after the last cataract surgery I asked the surgeon what she thought Gideon was seeing right now.  She said he was probably seeing 20/400.... maybe 20/300.  That means that Gideon falls right on the upper limits of "Severe Visual Impairment".  He would not even be able to read the big letter E on the top of the chart.  I'm sure that when the cataracts are in his eyes he would fall into the blindness category of "Profound Visual Impairment".  According to the CNIB, in Canada, legal blindness is "worse than or equal to 20/200".  So that makes Gideon legally blind.  To put this into perspective, you can not drive a car if your vision is less than 20/50.

We are still in the early stages.  The surgeon is only taking a guess at what he's seeing and it is possible that his vision can improve down the road.  Once we confirm that the cataracts are gone for good, we can do some more accurate testing.  So far the eye surgeon thinks Gideon's eyes are healing nicely.  Let's all hope that we remain in the clear- literally!

Wednesday, 13 May 2015

Long Awaited Updates

Sorry for the hiatus.  I think I've had a little caregiver burnout and my motivation has dropped off the charts.

So many things have been going on...

My Lumpy Head
1.  I had some cysts removed from my scalp.  Things are healing up nicely and I don't feel so weird about going to a hairdresser.

2.  Gideon had an eye examination under sedation.  The eye doctor again confirmed that his cataracts were coming back and very aggressively.

3. Gideon had cataract surgery for the third time.  The surgeon was going to take out the whole lens but instead opted to cut away more of the lens rim.  There really isn't much left of his lenses but it sounds like there are a lot of risks with taking them completely out.  The precision needed to do this is amazing!  This does mean that the cataracts could potentially come back a fourth time.

The blue portion is my depiction of what the surgeon has cut out.  

So far he has been recovering well.  He hates the eye guards and has been ripping them off his head.  Lately I've not been putting them on him and just trying to bat his hands away from his eyes when he tries to rub them.  I'll post some pre and post surgery pics later.

4. Mother's day has come and gone.  I had a lovely day with my family.  I was adorned with flowers and cards.  I was kissed and hugged with resounding "Happy Mommy's Day".  I was even gifted with a shower and enough time to shave my legs!

This year mother's day had additional meaning to it.  My first mother's day with Alex was very very special but this year I think I felt more philosophical about it.  I was more reflective about motherhood in general and how much this role has defined me as a person.  I though about the struggles/suffering of Motherhood and the feelings a mother goes through when there child fails, is sick, or rebels against you.  I thought about the first mother depicted in history- Eve.  What an amazing joy having a new life come into the world would be.  Then the devastation, the mourning, the mixed feelings of when your beloved child murders another one of your beautiful children.  As a mother, how would you deal with this?

Motherhood is complex.  You invest so much of yourself into your children and you just want to see them soar to such great heights.  You see so much potential in those beautiful little beings and you would do almost anything to help them succeed.  It seems so unfair to lower the expectations of your child when you know that they are different.  With Gideon, I am shooting for the stars.  I've had to mourn the loss of my initial expectations for my beautiful little boy and embrace the charming child that has won my heart.  I did not expect him to have limitations.  (Which is silly if you think about it because we all have out own limitations)   Expectations and limitations are different.  Even though he is considered legally blind at this point, through these limitations I still expect him to soar.  Soar to reach his full potential- and I will be there to help him push through.  As I've been told, Gideon's full potential is still "up in the air" due to his unknown limitations.  But I think that as long as he strives to do the best that he can, that will make me proud - limitations and all.  In fact, perhaps because of his limitations, I can be even more in awe of his accomplishments and his amazing ability to overcome.