Thursday, March 26, 2015

Today is wear purple for epilepsy day. Yesterday was green for cerebral palsy day. It's holoprosencephaly week. I think in the recent past it was crib du chat awareness week and in June (I think) it is hydranencephaly week. Angelman syndrome has its awareness time and it seems everyday is for autism and we just passed the Down syndrome month(?) I can't keep track. The point is I believe all of these disorders have colours etc associated with them and we are all encouraged to wear said colour to support who we might know living with it. I would just like it said that with thirteen kids all with their own unique "specialness" I can't keep up with the colours. I am considering outfitting each of us with a tie dye wardrobe so we might be sure to cover all the days with our support. Rainbow is a nice 'colour'. No wait. Rainbow supports another group. What the hay! We support them too! Some of our best friends......

Tuesday, March 24, 2015

Technology and bowling

 Last year the child's school told me something that you would think would be common sense.  Unfortunately that is something I am a little shy on especially when it comes to technology.

Here it is.  For those with vision impairments you can use your iPad etc to zoom in the direction of what it is you are trying to see thereby making it so you CAN see it!

I know right?!

We have bowled a few times and though the eight year old has a lot of functional vision the pins are just too far away and she has no clue except by sound if she has hit anything.  Today I brought the iPad mini and showed her how to use it, what she was aiming at along with encouraging her to listen more for the different sounds of pins getting hit versus not.  It's cumbersome to do it for every turn but having used the iPad it gave her the frame of reference that everyone else has when bowling.

It was also great to have the iPad to take pictures and
videos of her friend that we had for a playdate.

A great time was had by all in attendance with the game lasting the perfect amount of time before they were done with it and ready for lunch.


























Happy bowler








The little prince did some bowling too though there are no action shots to prove it.  He's a little extra 'chesty' right now and every time he is transferred from one position to another he starts hacking up a lung and spewing all kinds of white foam (should this have had a disclaimer?  Sorry too late).  Our little playdate saw it happen once and started gagging and for all's benefit the little prince became a champion spectator.  The bowling alley was very full and it was likely he would have cleared it with what I'm sure people would have thought was tuberculosis, typhoid or rabies so staying put in his chariot was the better option.

Monday, March 23, 2015

movie stars


This past weekend two of the participated in the filming of a promotional video regarding cerebral palsy and living a life without limits.  The location was at a local stable and as part of the deal the eight year old got a short riding lesson.  She was thrilled.  The little prince due to a complete inability to open his legs due to hip dislocation and spasticity did not ride however made quite the impression on a young filly name Cassie.  She thought he smelled delicious!




                                               
                                                  There was grooming to be done


Plenty of support for safety






A new lesson in courage.  Horses are big, scary and their heads are unpredictable
There was a group of kids included in the video as well each with varying degree of cerebral palsy.  They were all within a year of each other.  They sure had a good time together


There's a Hollywood saying that states never to work with children or animals.  Though things went very smoothly I can see why that old adage came to be.







Trying to get his courage on

Friday, March 20, 2015

Turns out it is the International Day of Happiness today.

You know what would create a serious boost in my happiness?

Come'on!  I bet you can guess!

Chances are slim however as it is getting close to days end so it appears unlikely I will be getting that oh so coveted baby call.  Again.

I will remain hopeful.

Wednesday, March 18, 2015

Four @#$$% Years



Four year ago today.

So much to say....

 About Ailish.

About grief.

About living with knowing that losing another child is a probability.

About raising kids with life limiting conditions.

About.....life and living because there is really no choice.

It will get said.  Just maybe not today.

Monday, March 16, 2015

Surgery day four years ago

Today, March 16, four years ago I signed the final signature that would lead to my daughter's death.
March 16,2011 was surgery day to correct the extreme curvature in her spine.
I left her at approximately 8:20 am smiling, happy and comfortable.
I had some breakfast and began the day long wait before I would see her again.  I spent the day in the parent room sleeping as I had been up the entire night before with the littlest man who obviously felt that he was going to have to fight for some equal time and attention and so became very ill.
I received updates through out the day.  Closer to the end of the day I made my way to ICU where Ailish would be taken after some time in recovery.  Somewhere between 6:30 and 7:00 pm I was able to lay eyes on and touch a very uncomfortable girl.

Surgery had gone very well.  Nothing unexpected occurred.  All went as planned.

First night post op was rough but good medically.  Everyone was thrilled with how well Ailish was doing.
Her time in ICU would be short because of rock star numbers and by 9:30 we were on  the unit.
There would be no smiles.  There would be no real consciousness.  Her eyes were open but there was no longer any light.  So much pain.

So much pain.

Sunday, March 15, 2015

Swim lessons


A couple of months ago I found a swim program for the eight year old.  She has done public lessons but with the left sided hemiplegia she has made little progress other than confidence in the water which really wasn't an issue to begin with.

Group lessons have not worked for any of my "higher" kids.  There is just no way they have stood a chance with the limited amount of time each child gets from the instructor on top of their special needs.  In the end what happens no matter how much effort they put in they don't end up with the card that says they have graduated to the next level and the older they get it wears on their self esteem.

There have been other swim programs over the years with the different organizations we have been involved with but none that offer lessons.  All I have ever wanted was for the kids to be given the skills that kept them safe in the water.  I'm not looking for pass/fail.

A couple of months ago I was fortunate enough to hear about a swim class specific to kids with disabilities that would offer instruction.  The main instructor is a background in kinesiology and then there is a volunteer for each swimmer.  We finished the first set of lessons and I couldn't say enough great things about them.

I learned something brilliant as well.  I noticed that the majority of the lesson was spent with the eight year old on her back.  She still can't propel herself forward in the water so saving herself would still be unlikely but improvements have been made.  The purpose of all of the back time is safety.  If for example she fell in the water or came off a water slide and couldn't swim to the edge such as happened last summer she could roll onto her back and float until help came.  Brilliant right?!