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!!

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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!!

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! 🙂

 

update 2 – one of those appointments

Upon arrival on Friday afternoon, the idea was to program both shunts and turn them down to 30.  The thought was that by turning them down, that will allow them to drain the ventricles more.  Well, no one could find the device to turn them down.  The doctors went back to University Hospital to get the one from there, and didn’t come back due to some emergencies there.

Friday morning another from Neurosurgery comes around thinking the shunts had already been changed, and they hadn’t, so he set about looking for the case with the device.  With the change to the new hospital, it seems not everyone knows where everything is yet!

After calling the Nurse Practitioner at home hours later, they knew where the case was and had security go retrieve it in PMDU.

It’s time to re-program the shunts.

First try – the left goes down to 30 – all good!  The right – ended up somewhere between 50-60.

Second try – Just the right shunt – ends up at 90!

Five more tries later – the right shunt won’t re-program.  It’s stuck on 90!

You should know that between each of these programming times, an x-ray needs to be done to verify the setting is where it’s supposed to be.

Patrick’s own Neurosurgeon was going to come in and try to see if she could get it changed, but it seemed that it was decided to keep an eye on him the next couple days and see how he was doing.

As Saturday afternoon progressed, Patrick started becoming a little more symptomatic, more headaches, more tired, his left eye is turning outward more, off in a daze at times etc.  He was still smiling and laughing, but the other symptoms were coming through more.

Saturday night, they did bloodwork in case he declined quickly and had to go to the O.R.

Today is Sunday now.

Patrick still appeared to be as he was yesterday afternoon.  Then this afternoon, he got very agitated and upset.  He kept asking to go for a CT and/or x-ray and for me to call the doctor.  He said his head was hurting and when I offered to get him some Tylenol, he told me that it wouldn’t help.

I told him we had to go through the Nurse first, that I would call her; he could tell her what he told me and then she would call the doctor.  He was pretty upset and agreed.

The Nurse came; he told her he needed to go for a CT and that he wanted to call the Doctor.  She was able to get him to take some Tylenol in the meantime while she called the Doctor.  He was ok with that and seemed to make him feel better knowing she was going to call them.

I gave him the Tylenol and about 20min later she returned saying she’d spoken to them and that they were going to order the CT.  Within an hour, we were downstairs having it done.  Then the waiting began for Neurosurgery to come speak to us.

When they did, and after looking at the CT scan, it seems there is no change to his ventricles.

With a setting of one at 30, that ventricle should show some improvement.  It doesn’t.  Neither has changed.

It appears there is an issue with both shunts.

The Doctor said tomorrow they will have to get on sorting it out and fixing them.  He is an adult Neurosurgeon and the only team that was on this weekend.

So, tomorrow when ‘our’ team is back, hopefully the ‘fixing’ process will begin.

More to come…

 

Rolling Journey – “I do what I can’t”

It all started with a Kijiji Ad…

Do you have the “road trip gene”? Can you put time in your life to travel?

……and this epic journey began for my friend Greg Moore.
“I do what I can’t” says Greg.

Follow along on his journey via his facebook page, his blog and twitter!

Truely an inspiration!  I’m enjoying the pre-trip posts and all that’s happening for him!  I know you will too!  I can’t wait till they actually leave for it!

Greg Moore’s Facebook Page

Greg’s Blog – Rolling Journey

Greg’s twitter – @rollingjourney

 

Good Luck Greg!! 🙂

Persons with disabilities play sports too!

The other day while at the Orthotics office with my son, I noticed and grabbed a magazine called Play2Podium.  It states it’s a magazine for special needs families.  This was a free sample copy of the Winter 2011 edition.

While going through it I found some great information on sports for people with disabilities to participate in.  I did some more looking and found some more sites!  I’ve bookmarked all the ones I have found so far into one folder and will certainly keep them handy when I hear of others looking for something to get involved in.

I wanted to share them with you.  Some will fall into the winter sports and as you know, winter will be here soon enough! 😉

Canadian Amputee Sports Associationhttp://canadianamputeesports.ca/index.html

Canadian Blind Sportshttp://canadianblindsports.ca/eng/index.htm

Canada Para-Alpine Ski Teamhttp://canski.org/para-alpine-ski-team

The Canadian Cerebral Palsy Sports Associationhttp://ccpsa.ca/en/default.aspx

Canadian Electric Wheelchair Hockey Associationhttp://cewha.ca/

Canadian Wheelchair Sports Associationhttp://www.cwsa.ca/en/site/

Canadian Association for Disabled Skiinghttp://disabledskiing.ca/

Ontario Sledge Hockey Associationhttp://ontariosledge.com/

ParaSport Ontariohttp://www.parasportontario.ca/Default.aspx

Wheelchair Basketball Canadahttp://www.wheelchairbasketball.ca/en/homePage.aspx

ParaEquestrian Canadahttp://www.equinecanada.ca/para-equestrian/

Ontario Blind Sports Associationhttp://blindsports.on.ca/

Wheelchair Tennishttp://www.tenniscanada.com/tennis_canada/Pub/DisplayPage.aspx?enc=WqmHTIXb3hZBDLgekBXg/g16dCnUPZfiIR142ql1ulNxfx5r0F1EFukdEywK7teN7x7gN9vSqE+iOWSfJQywCw==

Special Olympics Canadahttp://www.specialolympics.ca/

Special Olympics Ontariohttp://www.specialolympicsontario.com/

Special Olympic Sports:

Winter Sports

  • Alpine Skiing
  • Cross Country Skiing
  • Curling
  • Figure Skating
  • Floor Hockey
  • Snowshoeing
  • Speed Skating

Summer Sports

  • Aquatics
  • Athletics (Track & Field)
  • Bowling (5 & 10 Pin)
  • Power-lifting
  • Rhythmic Gymnastics
  • Soccer
  • Softball

Canadian Wheelchair Curling Instruction Videoshttp://www.curling.ca/start-curling/wheelchair-curling-instruction/

See anything of interest to you or a family member?  Check it out further by visiting their website.  So much is gained by participating!

I will add more as I come across them, but I think we’ve got a good start here! 🙂

Looking to volunteer?  Each of these sports I’m sure welcome volunteers! 🙂 Contact the sites for more information on volunteering and/or if you have questions about the sport.

Till next time…

Get involved and play hard! 🙂

Life’s growth spurts

WOW!  So much has gone on over the past few months.  I’m  almost at a loss as to where to begin.

This blog entry may be a little different from some of the others, but I just really need to write tonight to help get my thoughts and feelings out.  I apologize in advance if it seems kind of like it’s jumping all over, I’ll try to look back and make it look like some sort of sense afterwards lol

Well, Patrick is growing up!!  He’s going to be a teenager next month!! 13yrs old!!!  Where does the time go??  So much has changed with him over the past year, it’s been amazing!!  I’m so proud of him!  No matter what happens, what goes on or how I feel…I can look at him and my smile returns instantly!

He has been dealing with all the changes so well.  Years ago, he would not have tolerated everything that’s been happening so well.  His personality is blossoming, his communication is coming along so well, my baby’s growing up!

As some of you know, who go through similar situations, appointments can go in spurts at times.  It will seem like for a few months, that’s all you seem to do is run here and there, and the rest of the year, it’s intermittent.  It’s that time of year for us, and with all the advances he’s made, more have been added at this time as well.

Regular check ups with the Nephrologist, including a kidney ultrasound, blood work and a 24hr blood pressure monitor.

Dietition updates, revisions and suggestions for his growth, size and weight.

Regular check up with the Neurosurgeon including a CT scan and Shunt Series.

Dental check up which now requires a specialist appt and a ‘day surgery’ to be booked soon.

In visits with the school OT/PT, a referral to the Orthopedic surgeon had been done and now orthotics are being made.

As well, with him growing so much this past year, he has almost outgrown his seat in his powerchair, so a seating appointment was done as well, and a follow-up to that to be coming.

I also request 2x a year, a “team” meeting at the school.  A meeting where all the therapists, teachers, EA’s, community case managers etc, can be together in the same room and get updated on Patrick’s progress at once.  Either the principal and/or vice principal and sometimes someone from the school board attends as well.  That meeting will also be in 2 weeks.

Let’s see where to begin…updates…hmmm…

Nephrology:

24hr blood pressure to be rescheduled, waiting for a date still.  Ultrasound now shows, 2 cysts on one kidney, 1 on the other.  Hopefully the rate of growth is an indication of its progression and things will continue to be ‘slow’ with that regard.  As many of you may not know, with his syndrome, Meckel Syndrome, polycystic kidneys are typically known and usually the primary reason for loss of life, among other things.  Bloodwork was good, Iron still a little low, so he has been taking iron for a few months now.

Dietition:

Having not had a diet change in years and with his growth and the fact near the end of summer last year, he always complained of being tired, I had a dietition come in to ‘re-asses’ his needs.  After some blood work, a visit with the Ped, she came out and we discussed some concerns regarding his dietary needs.  With not eating ‘regular’ food like you and I, ‘baby food’ was not not meeting his growing needs.  He was lacking in a few vitamins, fibre, protein and iron.

Now taking Iron, a multi-vitamin and adding benefibre and sunflower oil to his meals, his blood work and his health have improved even more.  He is now just over 4 ft. tall and is weighing in at around 69lbs.  We will continue to monitor his needs and his weight, as he’s not as active as ‘most’ kids and we don’t want him to get too large and heavy for his size.  As well, for lifting etc…thank god for ceiling tracks, which I REALLY need to start using more lol

Neurosurgery:

It’s been about 4yrs or so since his last hospitalization for a length of time.  Woohoo!  Appointments coming up for the CT scan and Shunt series.  The shunt series is just an xray to take a look in his abdomen to see that there is enough length still on the end of the shunts to allow for his growth.   This one will be interesting to see because of how much he’s grown this past year.  He’s never needed an ‘extension’ put on previously, as there were issues with the shunts that had come up and they were just replaced.   Those appts are next week, and the first week of June is with the neurosurgeon.  Everything’s been good the past few years with these programmable shunts.  The odd concern with intermittent blockages here and there, but nothing that hasn’t seemed to work itself out so far.

Dental:

The dentist was very pleased to see how he was doing and how is teeth were, which was great and a great improvement from when he saw him previously, 4yrs ago.  When he was 5yrs old he had a gingivectomy done.  He had a lot of ‘gum’ in his mouth, it was covering his teeth etc. so they removed much of it.  Between then and now, 8 teeth were taken out by the Dr. and others have come out on their own.  It’s been noticed in the past few months, what looks like a double set of ‘eye’ teeth.  So a consult was done today with a specialist to look at taking one of the sets out.  Apparently one of them is still baby teeth.  So we await that call for the ‘day surgery’ for that.

Orthotics:

While using his standing frame at school and other various activities and therapy, it was noticed his feet were not ‘sitting’ correctly.  He does not weight bear hardly at all, and what little he does, he does it on his toes.  The only way he’ll stand flat foot is with sneakers on.  A referral to the orthopedic surgeon was made.  One of the first things he mentioned was how big he was for the seat on his powerchair  lol  I told him, we already had an appt to get that looked at and that it was noticed the previous week at another appt.  He suggested for his feet, we try some orthotics to help get his feet more ‘pliable’ to go into the proper position.  To stretch out those muscles behind his knees down to his feet.

He did great when we went for the ‘casting’!!  He’s come so far, as I said, years ago, he would not have tolerated this stuff, it would have made for some very difficult appointments.  He even picked out his own pattern for the orthotics.  First it was fish, then it was planets…then he saw a camouflage pair…well he got excited about those!!  So that’s what he chose  🙂  They will be ready next week as well! lol

Seating:

Some temporary adjustments were made to his seat, until we get a few more things sorted.  He has a little more growth left in the seat he has now, it’s been ‘lengthened’ to it’s max now.  The seat was also tilted back about 5 degrees or so, to help get his sitting straighter.  He ‘rolls’ his pelvis forward when he sits, and it is hoped that with the adjustments that will be made and some verbal prompting, he will pay more attention and sit up straighter in his chair.  It will of course help his posture, his health, and his breathing to name a few things.

He will need new foot plates for his chair to allow for the growth as well, so those are being looked at.  As well, once he gets his orthotics, a follow-up appointment will be necessary to make adjustments for those as well, so that his feet and legs are comfortable and not having any ‘pressure’ points while in his chair.  The orthotics will be worn at school during the day.  When school is done, we’ll work out a ‘schedule’ for wearing them to keep that going.

We are also looking at a possible new mounting system for his chair and his communication device.  We have had one appointment already to try out one, not really what we were hoping for.  Another will be at the centre end of May, and we’ll try that one out as well.  Only thing with this one at the end of May, it’s called the Mount n Mover, and if we decide it’s what we want/need and go for it, it will tie up our ADP funding for 3yrs.  So we want to make sure we get what’s best for his needs.

Well, that was long….and there is still more lol  I’m going to sign off for tonight, and I’ll update again later this week.

If you have any comments and/or questions, please feel free to ask, I’m always happy to hear from you and answer whatever I can, the best I can. 🙂

Good Night, dream sweet!