When what you prepared for isn’t what’s happened

I know it seems like forever since I’ve posted. Life has been busy with Patrick quite ill. He is on his 2nd admission since January and we are now heading into week 7 of this one. He is not looking at being able to go home till some time after the end of May.

Last year, after Patrick’s Wish Trip and before Christmas, I finally did something I should have done years ago. I created a ‘fan page’ for Patrick on Facebook. It was an easier solution for people who follow him and see what he’s up to and how he’s doing.

I just wanted to post this quick update that we are still here and hanging in. Patrick has been quite seriously ill. All the updates have been posted on his page if anyone would like to follow along.

https://www.facebook.com/notbythebooks

Watch for more…thanks everyone for your support!

Have an awesome weekend!!

Easter Seals Helps Children with Disabilities – You can too!

With 3 days to go till we do our rappel down One London Place to raise money for Easter Seals, we are falling a little behind on our required goal to participate.

Take a look at the Drop Zone website for more information about all the different drops that have happened and yet to happen!

You can take a look at some photos of previous Drop Zones!  Some amazing photos!

DSCN1162

That’s ME on the right last year coming down the building 🙂

Please support Easter Seals and help kids with physical disabilities succeed!

Everyday people are getting out of their comfort zones for Easter Seals kids!

The 3rd Annual Easter Seals Drop Zone London will take place Thursday, September 12, 2013 challenging participants to raise a minimum of $1,500 in pledges in order to rappel down the 26-storey building at One London Place, 255 Queens Ave. Everyday people will become “Superheroes” for a day by raising much needed funds for kids with physical disabilities, and challenging themselves in an exciting event that is both safe and fun!

Please support Easter Seals and help kids with physical disabilities succeed!

Having always appreciated and been grateful for Easter Seals and their support for the many things my son Patrick has and uses.

We have built a team this year and want to return the favour so to speak and do our best to raise the minimum $1500/pp (and more if possible) and do our part in raising money for this amazing organization!

This will be my 2nd time doing this, and a first for Mark & Dave on our team, but being able to support something that does so much for so many other children/families, it will be our honour to participate!

Please help us reach the minimum donation goal of $1500/pp to be able to participate in this wonderful event and opportunity to give back!

Thank you so much for helping us be able to participate and give back to something so great!

Here is the link to pledge online.  Ask/Share with your friends, family, bosses & co-workers!  We need your help!!

Thank you so much!!

One week to Drop!

Training is tomorrow!! We become super heroes NEXT Thursday and rappel down 26 stories to raise money for Easter Seals!

They have been such a great help for Patrick over the years and we need this program to be able to stay around to help ALL families with children with disabilities!!

This means a lot to me!

Please don’t hesitate!! You can donate up till next Thurs!  PLEASE help me reach my goal so I can participate next week!  Any amount will help!  Donate online by clicking the link below or writing a cheque made out to Easter Seals Ontario.  Cash and email money transfer is acceptable as well.  Email me for details.

CLICK HERE TO DONATE!

Thank you so much!

Come on out to One London Place next Thursday and watch all the Super Heroes do their part for Easter Seals!!

Hugs my friends!

How did you start your day? (updated)

First video blog! 🙂 They will get better I promise! 🙂

London Drop Zone 2012Click the ^above^ picture to watch this blog post!

Have you ever thought about what exactly you do in a day?

Have you ever thought about how easy your life is?   Easy you say? My life easy?

Take a moment and think about what you did this morning when you got up and started your day.

You got yourself out of bed – you went to the washroom – you brushed your teeth – you had a shower – you got dressed – you made coffee/tea – maybe you had time to read the paper or check emails before jumping into your car and heading to work, the gym, shopping or where ever.

Does any of this sound familiar at all? I’m positive some of it applies to many.

Now…imagine this…

You’re lying in bed awake, ready to get up.  But wait…you can’t!  You have to wait for someone to come help you get out of bed.

Perhaps you’d call out to someone to come help you…but wait…you’re not able to speak.  Maybe you use an augmentative communication device to speak for you, you might be able to use it to help you get someone.

Now…someone has arrived to help you get up.  Maybe they even need to help you get dressed.  Perhaps you need help using the washroom.  If you need help for these things, you’re going to need help in the shower as well, right?

What if you couldn’t eat anymore?  What if you could, but it wasn’t recommended you do, due to health risks it would cause if you did.  Imagine being fed through a tube in your nose or your stomach.  Not being able to taste food anymore!

Those a just a few thoughts for you to think about at the moment.  Stop and really think about it.  What if that was you?  How would you feel?

Now let’s see, based on the above questions, let’s surmise that you aren’t able to walk, so you would likely be in a wheelchair.  (Let’s make a little side note here that there are many types of disabilities and not all of them require use of a wheelchair or other assistive devices).  Let’s also assume that because you can’t eat orally, you have a g-tube with which you get your nutrition.

Did you walk to your car or to work or the gym today?   There are literally thousands of people who weren’t able to.  Have you ever thought about getting around in a wheelchair?   Think about some of the places you go and take a visual as to how accessible they are?  Are there ramps?  Automatic buttons for the doors?  That are in reach?  Are the doorways wide enough for your wheelchair?  Are the things you use everyday within reach for you?

Seems like a lot to think about so far doesn’t it?

On the other side of the coin so to speak, what if you were the one who was helping that person everyday?   Circumstances are different for everyone and every situation it’s true, but suppose you had to get someone else ready to for their day before you could get started with yours.  Oh wait, this is how you start your day.

What if you were the parent and this was your child?  There are thousands of families that do this everyday!  This is their life!

How would you cope/handle things?  Do you think you could?   Without complaining?

Imagine all the things you will have had to learn and the all the things you’ll continue to learn.  All the Doctors, therapists, nurses, teachers, suppliers of equipment and things your child needs.  All these people remember are multiples!! In other words, there are a number of doctors/specialists, there could be anywhere from 1-5 therapists, multiple nurses and teachers and a limited number of suppliers for your equipment and supplies needed.

Think about work.  Is your boss wonderful and patient enough to let you answer those calls from the school where you might be needed?  How about all the doctor’s appointments and tests/procedures your child may have?  What about the hospital stays?  Staying 24/7 at the hospital with your child because no one knows your child like you do!  No one there would understand your child’s communication either.  Who is the best advocate for your child?  YOU!!

watch the video for the rest….

Here is the link for Easter Seals Drop Zone 2013 🙂

http://my.e2rm.com/personalPage.aspx?registrationID=1810209&registrantPreview=1

Thank you so much!!

What’s been going on?

Yes, it’s been a while since I’ve done an update.  A lot has happened in that time frame as well.  There is much to update!  I will do my best to get those posted over the next few weeks.  Thank you for your patience!

Let’s begin with where we left off; Patrick was going in for some tests and being admitted with the understanding that some procedures were going to be done.

For the sake of trying to get caught up on everything in a short time span, I will just be updating as an overview of what happened.

Patrick did end up having the upper end of one of his shunts replaced as it was blocked.  During the course of this surgery, another issue came about, in that when trying to put the bottom ends of his shunts back in his abdominal cavity, they had a difficult time on one side due to so much scar tissue on the inside of his abdomen.  When they finally thought they found a spot, a huge gush of fluid came pouring out!  There were able to catch most of it (enough to almost fill a coke can we’re told) and send it off to the lab for testing.  A nearby general surgeon was brought over to see if he would take a look inside Patrick’s abdomen to see if he could see where this fluid came from and if there was more anywhere.  He brought all his equipment, scopes etc over to Patrick’s OR room and did an exploratory basically.  He found nothing that might explain about this fluid.  He did locate and area that they could safely and easily re-insert his shunt and all was closed up and finished.

Patrick also did have a g-tube put in.  He had to have a ‘temporary’ tube in for the first 3 months till it healed, then was replaced with a ‘mickey’ which is replaced every 3-4 months now.  What a huge difference to his quality of life.  He’s been able to get his nutrition without it causing him to be any more tired than he already had been.  He has adapted well to it and asks to be hooked now.  What a trooper!

After a few weeks in hospital and getting used to the tube feeds and learning about it all, Patrick was able to go home in February, with a number of follow up appts.

Follow ups included:

Neurosurgery – usual follow up after surgery and admission

Nephrology – usual follow up for blood pressure and blood work to keep an eye on kidney function and potassium levels

Enteralfeeding – follow up for g-tube and any feeding issues

Dietition – make sure recipe for feeds was working for him, getting him all he needs to have and making sure it was balanced enough to as not to cause increases in his potassium etc…

Neurology – follow up for the seizure medication Patrick is on and how it’s working.  Since this time, we have been currently decreasing it and he is almost completely off it now!

A consult with Toronto Doctors at Sick Kids Hospital was put in as well with their plastics team for their thoughts on another cranial vault expansion .  That appointment was for Oct. 10th, 2012.  (update later)

Over the course of the next few months with follow ups and blood work it was discovered Patrick’s blood sugars were dropping within 2hrs of a feed.  They should go up.  So endocrinology was brought in as well for follow up appts and blood work.

Well, there is a start…more to come…

Thanks for your patience and everyone’s support and love for Patrick and our family!! We truly are blessed to have so many wonderful people in our lives.

Thank you!

HUGS

Minimize admissions – maximize quality of life

A quick update.  I’m sorry I won’t be going into it all right now, but I am just too tired and need to get to bed.  Patrick’s respite workers are finding it tiring when here as well.

Patrick is being admitted tomorrow morning to hospital.  A Shunt-o-gram is being done and the idea is that during this admission, the G-Tube and possibly the 24hr EEG will be done as well.  This admission will likely be approx 2 weeks, give or take a few days depending on how everything co-ordinates.

Trying to do as much as possible in an admission to prevent the back and forth between hospital and home.

A lot has gone on and been talked about and discussed yesterday and today and I will try to update when I have time while in hospital with Patrick.  I really need to go to bed now.  I still don’t have everything ready for tomorrow!

We welcome all thoughts, prayers, support and hugs and thank you for them as well.  Visitors are especially welcome to come see us.  Message/text/bbm or call to find out what room we are in.

Goodnight my friends, tomorrow is a long day, be in touch soon!

 

Are you ready to talk about it?

The talk.

The talk no one likes to discuss or have.

The talk no one ever seems to be ready for.

How can you prepare for something that makes so many people uncomfortable?

Let me again say, no one is expecting Patrick to not make it through surgery.  We’ve been told it’s rare that children die on the table.  This is still a conversation many people must have at some point or another.  It’s particularly difficult when it’s your own child.

Patrick’s father was up for the weekend to see him (for those who don’t know, we are divorced, he sees him fairly often) and we had a couple conversations regarding what the other thought regarding resuscitation.  Not an easy conversation.

What do you do?  What do you say?  Many thoughts and questions come to mind.

Some will say he has been through enough.  Some will say he’s always come through.  Some will want the chance to say good bye.  Some will ask would he still be Patrick after?

Some family members have shared their thoughts with us already.

How many of you would be able to make that choice for your child? Do you think you would be able to tell if your child is suffering or not?

Could you make the decision selflessly?  It’s difficult as a parent, because that’s not the way it’s supposed to be!  Your child is going to outlive YOU right!?

We haven’t come to a decision yet.  I don’t think either of us are ready yet to do so.  I want to speak to the Doctors once they have the plan and get their thoughts on everything.  I want to have as much information as possible about this before making that decision.

What we do know is that since Patrick’s last cranial vault expansion, his health has not gone back to was it was prior to that.

We are NOT looking at this and expecting a negative outcome!  We are NOT planning on saying goodbye!

We DO have to be prepared and accept the reality of the situation and make decisions in the best interest of Patrick.

How do you think you would/will cope?  What things would/will come to your mind?  How difficult do you think it would/will be?

We’d love to hear your thoughts/experiences.