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!!

Advertisements

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!!

Reality – Let’s Dwell on the Now!

So I decided to write this while it was still fresh in my head.  I really should do that more often, but it all ends up being said in the end regardless, so it’s ok.

Today was a check-up appointment for Patrick with Nephrology.  This is the second time in a row I’ve come out of an appointment with information I didn’t have previously.  I am known to ask questions of the doctors and nurses, and they know I will continue to ask questions and talk to them till I am comfortable in my understanding and knowledge of whatever the issue is.  It looks as though I will need to start asking more detailed questions about reports, tests and scans.  I have also requested all clinic and hospital reports for the past year and all scans since 2005.

Let me start by saying that the update I’m about to give, may not sit well with many and I will emphasize repeatedly that we are/everyone is to dwell on the positive aspects of this information.

Without going into extreme details, I will begin with a bit of history that perhaps some don’t know or didn’t realize.  One of the ‘symptoms’ that typically goes with Patrick’s diagnosis of Meckel Syndrome, is polycystic kidneys.  This means that it is common for the kidneys to have and/or be covered in cysts.  The cysts get so bad that the kidneys end up having problems functioning and eventually shut down.  When Patrick was born, no cysts were detected or found.  A few years ago, a few started showing up on his ultra sounds.  There were only about 3 in total.  There had been no real issues with his kidney function…till about 4yrs ago.  It started to decrease.

In April of this year, we found out Patrick was in Stage 2 Chronic Kidney Disease and his kidney function had decreased to 60-65%.

Now, let’s jump to the present.

The appointment this week has brought some more information to light and also given us a bit of a reality check about this issue.  We’ve always known his kidneys were and were going to be an issue, but it’s always been tucked in the back of our minds as there hadn’t been any major issues and he was being managed well to look after them as best as possible to prolong them as much as possible.

Information this week has told us, Patrick’s kidney function is now 50%.  He also has more cysts on his kidneys.  The bigger Patrick gets, the harder it will be on his kidneys.

The Doctor told me that when his function gets to 30%, we will begin having talks about what will be the options for Patrick and what will be in his best interest.  A number of factors will come into play at that time, so it’s not something that can be discussed to much this early on.  The Doctor also mentioned that sometimes it is good to begin to discuss some of these things now, as it is generally more difficult in the ‘actual’ moment and our judgement can be ‘clouded’ sometimes in those types of situations.

They are managing him as best they can, as I mentioned, to prolong his kidney life as long as possible.  Some of the things they monitor are his phosphate and potassium levels, his blood pressure, his meds and a few other things.  Patrick’s ‘numbers/levels’ are good at this time under the circumstances, and that’s a great thing!! It means he’s being managed well!  Let’s keep that in mind!

Not to put a damper on things, or to sound morbid, but to a degree the reality of the situation has been brought a little closer to the front of our minds now.  The reason being, if his function continues to decrease at the rate it is now, we’ll be having these talks within 2 yrs.

But let’s try not to dwell on the future too much at this moment.  Patrick is a happy boy!  He loves school and being around his friends and family!  He loves to do crafts and bake!  He loves going for drives and music!  He’s an amazing young man!  He’s doing better and being looked after by the best people!  His numbers are good at this point as mentioned previously, so again, his health is being managed well at this time!

 

How can you smile not smile at this guy?