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!!

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!

 

Passports for Children with Special Needs

So…as I mentioned previously, we had passport photos taken the other day.  With the strict guidelines Passport Canada has regarding photos, I knew it would interesting.

Passport Canada has a page with general information for persons with disabilities.  You can take a look at it here. (Note:  I was quite surprised to see the address/URL for the page uses the word handicap in it.)

I’d like to know what YOU had to do, if anything, for your child(ren) with special needs to get their passport.

I called Passport Canada ahead of time to inquire what I would have/need to do if we couldn’t get a photo with his mouth completely closed.  They informed me I would have to get a letter from a Doctor explaining why.  Okay, I got on the phone with the Ped. Dentist and asked if they would help and provide a letter.  I explained the circumstances and situation and today I got a call back telling me the letter was being sent off in the mail today! THANK YOU Dr. Weinberger!! 🙂

During the photo taking, the photographer had asked me to remove Patrick’s glasses for the glare.  No problem, I took mine off for my photo as well.  She kept asking him to look at her or the camera, and he was, but it doesn’t look like he’s looking at you.  I told her he was and also asked if that would be an issue for their guidelines as well.  She wasn’t sure.  I called Passport Canada (PC) again and asked if there would be an issue with his eyes.  She informed me it would be up to the discretion of the individual office.  Needless to say, I’m looking at getting a letter NOW instead of later, just in case!  It also dawned on me that all children over the age of 11 have to sign their own passports, so I inquired about that as well.  Again, another letter from a Doctor is needed stating why he is not able to sign his own passport.  Patrick can write PAT, but not his full name, nor could he do it in the small space requested by them.

All of this will be worth it to know and see how much he will enjoy the trip! 🙂

Have you had to do anything in particular to get a passport for your child(ren) with special needs.  What do you think about the process?  Do you think they ask too much information?  Do you think all the letters are necessary?  Do you or did you have to pay for these letters?

Please share your experiences, I’d love to hear them.

Have a great evening!

Impressive Disney Planning – Cont’d

For all the changes that we’ve had to make in the past week, our travel agent has been wonderful!  She has been quick with information, bookings, reservations and insurance stuff and more.  The girls are excited and Patrick is waiting for me to make up a countdown calendar to put on his wall.

4 of our sit down meals are reserved, one for each park, including two character lunches!  One with Winnie the Pooh Gang (whoever of them can make it) and another with one or more of Mickey’s Gang!   The other two reserved meals are suppers, one being a Chinese cuisine and the other Italian.  With the Dining Plan we have, (we have the dining plus plan for free), we get one table seated meal, one quick serve meal and one snack each day we are there.  Heather, our travel agent, called me today with some great news!!  All the restaurants we have our reserved meals with, will accommodate Patrick’s diet as well!  How awesome is that!! 🙂  They will chop/puree up Patrick’s meal for him/us! How great is that?!  That will make some of our meal-times easier! 🙂  We’ve been informed to inquire at any others we attend for meals, as they may accommodate him, but those are not guaranteed!  Regardless, those 4 meals still help.

We’ve been given information about accessing many of the attractions at the parks with regards to accessibility and their alternate entrances for persons using mobility devices.  These entrances also allow a maximum of 6 people from the party including Patrick to stay together.  Since we are now 5 again, we can stay together and enjoy the attractions together!

A couple of the attractions we are looking at, are Kilimanjaro Safaris and the Jungle Cruise, both I know Patrick will love as it will give him opportunities to see many different types of animals.  He is also excited about going on any attractions that are train rides.

Today, we went for passport photos.  I had already called Passport Canada and inquired about what would happen or need to be done if we couldn’t get a photo of Patrick not smiling and without his teeth showing.  They said I would need to get a letter from a Doctor explaining why.  So in the meantime, I’ve put a call in to the Ped. Dentist for a letter with an explanation and why I’m requesting one.

Everything about the trip is booked now.  Plane tickets, Insurance, Resort, Transportation to and from the airport, Park tickets and some of our meals…everything is booked and paid for.  The reality of it is starting to hit me!  All the little pieces of information that we’ve been given and all the answers to all the questions we’ve asked have been answered and answered quickly as well.

I’m a little extra tired tonight, so I’m going to end here for now.  I will post more updates soon.

Thanks for stopping by and keeping up to date with us.  We love to hear from you too!

Have a wonderful evening! 🙂