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!

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?

 

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.

 

 

 

 

Improving Quality of Life

Many of you are wondering how the meeting with supportive services went this morning.  Here is a bit of a run down of what the plan is and what’s happening.

 

Let me begin by telling you, it was decided this morning’s meeting would not cover any of the difficult palliative issues at this time.  Those talks will happen, but today the priority was pain management and quality of life concerns.

Patrick’s pain seems to be managed fairly well with the medication he’s on.  He’s taking Gabapentin and Valproic Acid.  He doesn’t complain of headaches as often as he had been, which is good.  Tylenol is being used when needed to help take the edge off at least.  It really doesn’t do much for him honestly and thankfully is not needed as often at the moment.

As for quality of life, fatigue is making Patrick’s not so good.  He is awake and alert for periods throughout the day, but they don’t last and he tires easily and quickly and falls asleep.

What is causing the fatigue?  We wish we knew.  The Doctors wish they knew.  Could it be the meds?  Possibly.  Could it be the increased pressure in his head? Sure.  Could it be the seizures?  Again, it’s a possibility.  The fact is, he has been like this before when seizures and medication weren’t in the picture.  Both the seizures and the meds won’t help it indeed.

It’s so difficult to write so much out and so that many will understand.  It’s easier to inform verbally, but I will do my best.  I have considered doing videos instead of writing for updates, I may still, we’ll see.

Fatigue is causing issue and concern with eating and drinking.  He’s so tired, that it’s taking 2-3 hours to get through meals and drinking.  Tiring, not only for him, but for the caregivers as well.  The decreased alertness and increased sleepiness while eating and drinking can become a serious health and safety issue for Patrick.  Not being awake enough to chew and swallow properly can cause him to cough and choke and potentially aspirate.  Chances of pneumonia increase with aspiration, something he can’t get.  We’ve been lucky thus far, but he does cough alot when trying to eat and stay awake enough.  He wants to eat, but it tires him so much.  It’s alot of work to co-ordinate chewing and swallowing, something many of us don’t realize or think about.

A consult for a feeding assessment is being done as well as a recommendation that Patrick have a G Tube put in.  The G Tube will not be to replace his eating, but to help.  He will still eat what he wants and can, but in a 20-30min time period.  Anything after that will be done by the G Tube.

By doing this, the hope is to improve his quality of life, even if just a bit more and hope that it preserves some of his energy and that maybe his awake/alert periods could possibly start to become longer.

A social worker is going to be asked to become involved as well.  As I am usually the one who looks for information and resources for most things I need to know, I’m so tired, I’ve not had the energy to do a whole lot.  As Lisa (support services person) told me this morning, she has no doubt how tired I am (you just have to look at me) and that I am doing a great job and being a great advocate, but it will be nice to have someone else involved who can advocate for me/us and do that extra stuff for me.  Looking for information and resources.  A little reluctantly, I agreed.  Social work is apparently going to get me more information on Kids Country Club (their website is down), a respite for children who are technology dependent and medically fragile.

I hope to hear from Neurology next week regarding the 24hr EEG.  My thought is now that with them deciding to put a G Tube in, it would make sense to co-ordinate the two since he will be in hospital 4-5 days with the G Tube.   Hopefully this will be done sooner than later, so this surgery can get done and he can start recovery and get better.

Lisa did make a point of saying that no one is thinking he will not make it.  The reality of it is though, this a very big, complex and complicated surgery and the risks are great.  Everyone needs to be prepared for ALL the possible outcomes.

I’m tired and can’t think of the rest at the moment, so I will sign off and update again later.

I did get a call this afternoon though from Neurosurgery Clinic saying they wanted a CT today/tonight or tomorrow for Patrick.  He’s having it 730am tomorrow morning.  I’m off to bed to get some sleep.

Goodnight my friends, thank you again everyone for your kind thoughts and prayers! HUGS!