A look at Jordan's journey through life from January 2000 (Birth) until Present!! I believe I get to see an Angel every day when I look at my son.

Sunday, November 17, 2013

What a way to kick off November

Well November started off amazing. Jordan seemed to be doing very well on the med changes and he was very happy, lots of laughs, eating and drinking well and sleeping lots. Only a few "minor" hiccups. Well minor for Jordan.

Then Sunday Nov 10th happened. It all started with an hour long status seizure and a trip to the hospital via ambulance. What can I say Jordan likes lights and sirens I guess. After an hour long seizure it finally stopped. Jordan was admitted to hospital because he was having complications from the seizure. On Monday he had another 4 grand mal seizures.Once settled Monday night he was agitated and didn't sleep much. Not sleeping is very rare for Jordan after seizures, usually he sleeps for days because he is exhausted. 

Tuesday morning we noticed he seemed to be in pain and uncomfortable. We spoke to the nurses and doctors about it and they started to investigate the possible causes of pain. We all thought it was abdominal pain because of his reactions, pulling his legs to his chest, pulling his own hair and rubbing his belly and chest. He had visitors and everyone saw that he was in pain but we couldn't figure out where it was coming from. The nurses were giving acetaminophen and ibuprofen to try and ease the discomfort but nothing seemed to help. Wednesday morning the doctors said he had been 24hrs seizure free so they were going to send him home since the abdominal scans showed nothing out of the ordinary for Jordan. They thought maybe his muscles were sore from the seizures. 

Jay and I decided to give Jordy a sponge bath and get him up out of bed into his wheelchair before they discharged us to see if he was more comfortable sitting up. As Jay transitioned him into the wheelchair we noticed the pain got worse.....much worse. He wouldn't let us touch his legs at all. We called the nurse and doctor in and they sent him for a series of leg x-rays. Later wed afternoon we found out Jordan had a broken femur. After much thought and investigation we all came to the conclusion it must have happened Monday night during the one seizure where we noticed his leg was caught in the bedrail however because he was in seizure we couldn't move him. The break was bad and in the wider part of his femur. He would have needed surgery but because he doesn't weight bare and doesn't walk they didn't want to risk surgery with his other medical issues going on. About 6pm the Ortho surgeons came into Jordan's room gave him 2 shots of IV morphine and began to set his leg and then cast it. I have never seen my son in such pain before followed by silly hallucinations and lots of giggles. Nothing breaks a mother's heart like knowing you have been moving your son around in his hospital bed for 2 days with a broken leg. Jordan is now cast from hip to toes and on 24-7 pain meds. They also increased his seizure meds. 

We came home on thursday from the hospital to face a whole list of new challenges. How to change a diaper without hurting him, how to sponge bath him for anywhere from 6 to 16 weeks and not leave him feeling gross and dirty, how to transition him without moving his leg. How to exercise the rest of his body and other leg so he doesn't get stiff. How to keep myself sane with little to no sleep and more stress than I care to talk about.

We are now looking into seizure alarm watches that sound an alarm during the night if he is in seizure and bumper rails for his bed that are also portable and we can take them to the hospital when he is admitted so this doesn't happen again.

As always our friends and family have been very supportive and I don't know how we would do it without them. Coffee from friends while we are at home or in the hospital, friends bringing me dinner to the hospital because I haven't been home in 48 hours, offers to help Jay with the other kids so he can come to the hospital when needed....all things we very much appreciate and would never take for granted. In the last week we have had, rain, snow, hail, sleet, wind and a very sunny warm day. Just goes to show you never know what is coming in weather or life!!

Sunday, October 27, 2013

Jordan's World: Fall 2013

So much to report in Jordan’s World!!
Jordan had a pretty good summer, baseball games, swimming and lots of time with family.
The fall has come with starting grade 8 which is going to be an exciting year for Jordan. Zander started JK and Travis is in grade 10 as well as Samantha is in her 2nd yr of University. So many changes happening within our family. Some good news on the Travis front, no heart surgery for at least another year. He is being monitored closely and if things get worse it could be sooner but for now at least another year without that stress.
Jordan had several significant seizures and spent some time in the hospital. While there the doctors were concerned about a small stroke and were running tests. We found out Jordan’s bloodwork came back all messed up. His platelets were low, his hemoglobin was low, red blood cells were enlarged and he has anemia. It is now nearing the end of October and he has been through 4 rounds of blood work in the last 6 weeks trying to figure out what is going on. We have been given a worse and best case scenario and neither is great.
Last week we took him in for what we hope is the last bit of bloodwork before we get some real answers. He has a clinic appt on Nov 5th and hopefully we will know more then. It has been difficult to deal with and the stress is unimaginable.
We have come closer as a family through all of this even if at times it feels as if we are being torn apart and our best friends have been there every step of the way with us. Sometimes friends become family and that is an amazing feeling of love.
Trying to stay positive seems like an impossibility some days and with so much uncertainty it takes all of our energy to keep the people in our house up in spirits.
“How do you learn to breathe again? How do you learn to live a normal life when you can’t remember what one feels like? How do you regain faith when it feels like faith left you standing alone so many years ago? Emotions are something we reserve for our closest family and friends but love is something we have for all. Sanity left the building a long time ago and all that is left is a normal family that might be a super-family in hiding. I know so many have far bigger stressers than we do and never have I felt why us, but it does feel like the breath has been sucked out of us so many times that we sometimes wonder if we will ever get it back again. How do you learn to breathe again? Or maybe when can we learn to breathe again?
He sits here beside me laughing tonight as he watches Wall-E and at these times nothing else matters besides those giggles that I live for. Some of us wonder what our purpose is in life and I know my purpose was to be his Mother. The many people that know me understand how hard it is for me not to work, to sit at home waiting for doctors appts, waiting for the school to call and say he is having a bad day and I need to go get him, waiting, waiting waiting. I as a work-lover am finding it difficult to keep myself busy and productive. Some days the ambition is very low and some days I feel I can “do it all”!! I have a plan and I am getting my plan organized and setting it in motion and then LOOK OUT!!
No matter what happens with Jordan, I know as his Mother I am proud of our family and friends for always pulling together when he needs us. I am proud of my friends who continue to give me strength when mine seems to be running on empty and most of all I am proud of my family, we are mighty and we are soft but we always manage to pull through no matter what gets thrown on our plate.

Jordan is a boy with a mission and these last few years has made it very clear to me what his mission is!! We all could learn a little from a special boy that can’t talk but he sure can communicate. 


Monday, August 19, 2013

Well we have had a busy summer. Some great some not so great.

Jordan has been in the hospital for more prolonged seizures and refusing food and fluids this summer, he has started some new seizure meds and he keeps fighting and we keep trying. Some days are better than others and we know it is just another hurdle. We have postponed surgery for a feeding tube until we can figure out when Travis' heart surgery is going to be. Hopefully we will know within the next few weeks. I don't want to schedule one surgery and then find out we have 1 child in the hospital in London and 1 child in the hospital in Toronto. 

With the new meds Jordan has started eating and drinking again, his hair is growing back slowly and very light. He isn't drinking much but it is enough to keep him hydrated and some days he drinks as if he is famished. Loading him with carbs has done wonders because it keeps a little bit of weight on him so he doesn't lose everything when he is sick for a week or 2 and hey lets face it....taters and pasta are Jordan's favorite LOL

Jordan has had a quiet summer but it has been filled with smiles and laughter. He has started to tolerate social occasions a little better and can actually visit with people for 20-30 minutes before he screams for us to get him out of the situation. We are hopefully taking him swimming this weekend as he loves the water and maybe even a splash pad as well. Samantha was home for a few weeks to visit and I think Jordan missed her as much as I did.

Jordan starts grade 8 in 2 weeks and as I am excited for him I am also scared as can be, Grade 8 means a huge milestone that we never thought was possible for Jordan. It means graduating with friends that truly care for him  but it also means a new school next year, new EA's and a new environment and we all know how much Jordan doesn't like anything new. Lets not think that far ahead yet :)

We will hopefully have all of the bathroom renos done in October and Jordan will be able to have a full bath in a tub full of water. This wouldn't have been possible without all of the help from our community, friends and family with both benefits that were held for Jordan. I can never stop thanking you all enough. I have been racking my brain on how I can repay our community and I have several ideas but still thinking. 

I am happy to say once school is back in, in 2 weeks I hope to have a few weeks to think and gather my thoughts and tie up lose ends before chaos of surgery ensues. 

Thank you to everyone that reads this blog, to everyone that passes this blog along to someone it may help and to Jordan for being so special that I want to share him with the world. 

PS we have had a few great storms this summer and I have danced in the rain!!

Tuesday, June 11, 2013

June 2013 Benefit Concert

Well last week was a trying week with Jordy, he was running high fevers and having small seizures as well as refusing fluids. We plugged through and he is in great spirits this week. Full of smiles and really looking forward to summer. I am going to try and attempt to take him to another baseball game either this week or next. I miss how much he used to love being social and going to ball games but still hopeful if we do it little by little maybe we can get that spark back in him. After all we are a baseball family.

I wanted to take this opportunity to thank everyone for their support sunday at the charity concert. Hurtin Merv, Shelly Rastin Band and Bender, you are all class acts and you provided entertainment like no other. Dave Cobain for your tenacity and ability to run with this idea and make it a reality. EastSide Bar and Grill for hosting the amazing event and all of the volunteers, Ami Reed for putting the bug in Dave's ear and helping him run with the ideas, Tracy Wilson-Peakman, Pat Crawford, Lisa Dobbie, Alicia Grant and many others that I am still learning their names.....thank you from the bottom of our hearts. Your time, talents and support means the world to us all. To all the family, friends and friends and family we never knew we had....THANK YOU Your support means more than words can express. I will be posting videos and pics of the spaghetti dinner and the benefit concert soon...I promise!!

To my parents, my husband and our amazing children, thank you for always being there for me, thank you for never asking why I need help or questioning you when I call in the middle of the night. Thank you to our friends that bring me food and coffee when I sit in the hospital for hours or have pulled all nighters with Jordan. I know I have said it before but really I would not be half the woman I am today without you all. 

On one last note, I have been approached by 3 separate people in the last few days about doing more fundraising for Jordan and I am going to say thank you sincerely for thinking of us but no thank you. I want everyone to focus on other families that need help, there are over 320 special needs families in the London Area and over half are without any gov't assistance or funding. We will likely always need help with providing equipment for Jordan however we have made it this far I am sure with the generous donations we have received we will make it even further. Our family is still collecting poptabs and we are well on our way to being able to provide another wheelchair to a special needs child that desperately needs one (even more so than Jordan). Keep your eyes peeled for a poptab update in the next 2 weeks....I am very excited to share this with you all. If anyone wants to donate to help special needs children in the London Area I encourage you to donate to Easter Seals, CPRI or Thames Valley Children's Centre. Please don't take this the wrong way because we appreciate every cent donated to help support Jordan and every minute people have given us of their time but we would like to pay it forward and be able to help others as well. Jordan's Journey might be working on another benefit at sometime in the future but for now we are going to relax, enjoy our summer and smile knowing how many people in our community have touched our lives.

I have attached a video link that is for all of you, even though it is a love song it really speaks volumes for how I feel about each and every friend we have, because I couldn't breathe without you all. http://www.youtube.com/watch?v=_9wKi1keg8g

Wednesday, May 22, 2013

May 2013

Jordan has had a great month so far. He has started eating and drinking more regular again. He is sleeping much better and seems to be in a happy mood. We are still stressing wondering when the next bout of seizures is going to hit or when the meds will take an ill effect on his liver and kidneys but for now we are happy with any small amounts to progression. A happy Jordy is a happy home.

Summer is almost here and we have some fun things planned for the summer. Sam will be home in 2 weeks for a short summer visit and we can't wait to see her. It has been since Christmas since she was home. We are flying her home especially for the benefit concert June 9th. It should be  a great day. Shelley Rastin, Hurtin Merv and Bender. Starts at 2pm and there are some great door prizes and auction prizes coming in as well. Zander starts t-ball in 2 weeks and hopefully Jordan will love watching. We have taken Jordan to a few ball games this year and so far he has not enjoyed them. Here's hoping once the weather gets warmer he will love it again.

Travis will have all of his heart tests shortly and we are waiting for the date of his surgery. All we really know is the surgery will be between Sept-Dec and it will be in Toronto. Fingers crossed the 3rd time is a charm and he won't have to endure anymore open heart surgeries.

Our family is as always busy and lots going on right now but we are happy to report the chair lift is fixed and our backs no longer have to strain carrying Jordan up and down the stairs. Now can't wait to have the bathroom and bathlift completed.

When you have a bad day, week or month remember there are people struggling everywhere and maybe your story can help just 1 person. Remember:

It's not about waiting for the storm to pass it's about learning to dance in the rain!!

Boy oh Boy do I love dancing in the rain!!



Wednesday, April 17, 2013

A Long List of Thanks, Sponsors and Volunteers for the Spaghetti Dinner

Slo-Pitch City (Fred, Dave, Marnie and staff)
Big Top Tent Rentals
Pat-A-Cakes/ Tricia Nevill-Gebel
Ray D Livestock/ Donny Ray
Tim Hortons- Dorchester/Kitchener/Tillsonburg
BX93
Tammy and Trevor Woodhouse/ DJ and Great Music and Lights
Cranberry Country Market
Saunders Pro Home and Billiards
Marlena's Hair Styling
Anytime Fitness/Shawn Finch
Nana's Pantry/Bill and Deb Riley
Keys Thanks/Tara Jones
Labatts
Hustler Billiards Staff and Patrons/Ami Reed
The Grande Theatre London
Palasad South London
The Palace Theatre London
East Park Golf Gardens
The Toronto Raptors/Jessica Harris
Simply Said Photography
Sam's Place Port Burwell
3:16 Restoration
Rocky's Harley Davidson
Sherri Hughes/Tom Weston
KJEM Kreations
Planet Playground
Otterville Custom Golf Carts
Artistic Spa
Sweet Stellas
Montana Silversmiths
Fewster Appliances
Starbucks Downtown London Location
Theatre Tillsonburg
Brandon Prust/Carla and Eric Alexander and Families
Two Men and a Tent
Subway St. Marys Location/Dianna Youngson
Herms Sports
Joe Thorton
Degroot-Hill Pontiac
Corry Hill-Davis and Ron Davis
Hully Gully
Jockey Canada
Household Plumbing
Delta Faucets/Chris Ginty
Epicure/Jade Somers
Suzanne Jackson/Debbie Leben and Families
Autrans Office Staff
Autrans Production Employees
St. Marys Cement Maintenance and IT staff
St. Marys Cement Corp
United Steel Workers Union Local 9235
Mike and Francine Santos/Costco
Lynne Rushton/Avon
Beverley Allen and Harold Taylor
The Rebekah Lodge St. Marys
HiLightes Hair Salon/Janet Neeb
Melina Miller/Arbonne
The Emily Morgan Foundation
Heather Haug. Becca Davis, The Cole Family, Dr. Paul Catania, Charlena Russell, Melina Miller, Steve and Nancy Lightfoot, Leslie Owen, Tracey E White, Marla Poirier,Steve Byron, Ami Reed, Jeannie Bourgon, Jan Avey-Thomson and Bill Thomson, Carla and Bill Davison, Jason and Emma Dayment, Dr. Dan Cass, Myla Robertson, Tiffany and Dave Lewis, Theresa Landry and co-workers, Jamie Maudsley, Barb Coleman, Tim Israel, Lisa Dobbie, Pamela Chrysler, Aaron Lightfoot and Alyssa Van Vliet, Jared Lightfoot, Emily Bass and Seth Lightfoot, James Riley, Dave Cobain,  Kayleigh Riley, Emily DeLuca, Travis Walters, Joe and Linda Dippong, Ginger Peters, Jennifer Heffernen, Christine Cheavers........

Please forgive me if I have forgot anyone, send me a message and I will gladly add them to the list. I have tried to keep track but with donations flying at me even to the very last minute it was sometimes impossible. Thank you all so very much from the bottom of our hearts. I can't express how much you all mean to us. Thank you isn't enough but still I am in awe and don't know how else to express my gratitude.



Spaghetti Dinner

I would like to send our deepest thanks to everyone that attended, supported or donated to the spaghetti dinner. It was a HUGE success. We had a few small hiccups the day of but everything turned out great.

I wish I had time to meet with everyone that attended and thank them personally but there was not enough time in the evening. Thank you to all of my volunteers and our amazing bartenders that stuck the night out. Thank you to Big Top Tent Rentals for coming through at the last minute with a tent to accommodate more people and to Tammy and Trevor Woodhouse for the amazing DJ and music services. Everyone had a blast.

A final thank you to Slo-Pitch City, Dave, Marnie, Fred and staff for hosting this event. Jordan had a great time and he hates crowds of people so that was surprising to us all.

Thanks to all of our amazing friends that have helped us before, during and after the event, we couldn't have done it without you. 

We raised enough money to complete the bathroom renos and have the bath lift installed and hopefully to repair the stairs and stairlift so that is 2 big things off our list. Still lots more but every bit helps.

Thank you to everyone you are all amazing and our family loves you to the moon and back.

FYI BX93 has a post about the event and I think that was so awesome, our total # in attendance was 256

Friday, March 29, 2013

2000 Views

YAY!! We have hit and surpassed the 2000 views for Jordan's blog. I am so happy this is reaching so many people. 

What started out as an outlet for me and a memoirs of sorts has now touched so many lives and for that I am very thankful.

2000 Views and 18 Countries!! Thank you Everyone!!

Thursday, March 28, 2013

1 Week till Benefit

Well we are 1 week away from the spaghetti dinner and silent auction. I am so overwhelmed with emotion today. Jordan has had a very rough week and a half with being so sick it had him in bed for a week straight sleeping almost 20 hours per day.

I am happy to say he is on the mend and doing much better

I could list all of the sponsors and donations made to the benefit but it would take me days to type it all out. I will be posting a huge thank you to everyone and listing everyone in the following week of the benefit. I can say from my family to all of yours, THANK YOU!! We have felt the warmth of the whole community come together to support us with this adventure for Jordan. We couldn't be happier. THANK YOU doesn't seem to be enough but some way some how I will find a way to repay each and every one of you.

Thoughts and Prayers to a very special friend that will be having a GREAT FRIDAY tomorrow and not just a Good Friday as she is heading into a Kidney Transplant. Keeping our positive thoughts and prayers coming your way!!

Tuesday, March 5, 2013

Support means Everything!!

ok I have talked to several friends tonight, old and new and I wanted to share something with you all:

If you don't know how hard it was for Jay and I to ask for help then you don't know us very well. Call it pride, embarrassment or whatever you want. It was nearly impossible for either of us to conceive reaching out to friends and family to help with expenses to do with Jordan. 


With that said it has been brought to my attention without asking for help we would be putting Jordan's name on a very long list for a group home. A HOME.....I made a promise when he was born that I alone and nobody else would care for this child for his entire life as best I could and I would do anything to keep him at home with his brothers and sister. I wouldn't be able to safely care for him at home without new equipment, some renos to the house etc. It brings tears to my eyes to know so many of you have made it possible for me to keep this promise to Jordan and myself. I don't know any other words to say and I feel THANK YOU is not enough but without crying like a baby I am speechless. Thank you all from our whole family, I truly feel without this help we could not have done this, I just hope one day we can repay our community, family and friends ♥

Sunday, February 17, 2013

Family Day Weekend


Well Jordan has been relatively good the last few weeks. He has not been eating or drinking very well but he has been very happy and full of smiles. We had a rough few days with some small seizures at home but all in all nothing that warranted a hospital visit. Been an interesting few weeks with all of the kids.  Jordan goes in for some more blood work to check his liver as always we have to keep a close eye on it with the high doses of Valproic Acid he is on (750mg twice per day and remember he is only 45lbs). I have a sneaky suspicion something is going on that is stopping from him eating and drinking as well as he usually does. Fingers crossed there is nothing going on. We really don’t want to tackle liver failure or failure to eat and drink on top of everything else he has going on right now.

We are now 7 weeks away from the spaghetti dinner and silent auction. I am so honored and humbled by all of the generosity of our friends, family and community. There has been a trust account set up for Jordan to help with any future equipment needs, renovations to the home, nursing care, van conversion etc. Thank you so much to TD Canada Trust for all their help setting this up. I don’t even want to fathom those expenses at this time as we have enough on our plates with the current immediate needs. I was informed this weekend that another event has been planned on behalf of Jordan and it is a concert event on June 9th here in London. I am not planning this event it is being planned for us but I have been told details will follow and there is 3 local amazing bands that have signed on to do this benefit concert. I am excited!! As always our hearts are warmed by the generosity of others in our time of need and it really makes us speechless. 1000 Thanks go out to everyone involved.

Jordan’s blog is over 1600 views from 14 different Countries…let’s see if we can get over 2000 views before March 1st J

Friday, February 1, 2013

Feb 1. 2013

Well it is now Feb 1. 2013 and so far 2013 has been a great year. Jordan got through the first month with a flu but no major health issues. He saw the neurologist and his meds have been increased again to try and stay on top of the status epilepticus seizures. Fingers crossed it works. Jordan was happier today than I have seen him in a very long time, full of smiles and laughs. It really makes our whole house smile and brightens the mood when Jordan has a great day. School said he was wonderful today as well.

Travis has his cardiologist apt coming up in soon and fingers crossed after our little scare with him last fall everything is still fine and we can hold off on his pulmonary valve surgery for a while longer. Puberty can wreak havoc on their growing bodies.

I am so appreciative of all of the support we have been receiving from our friends, family and the community for Jordan's Journey Benefit. It is heart warming to know our little Jordan has caused this much of a stir. I have always had faith in humanity and what we can do as a community and society if we stick together and this is proving me right.

A quick serious note about the benefit: This was NOT an easy decision for Jay and I to accept help. It was not something that we thought lightly about. As a matter of fact it took some coaxing from family and several friends to talk us into doing this. Call it pride, embarrassment or whatever you will but Jay and I were not on board with this. We did not want anyone to think we were reaching our hand out nor did we want to admit defeat, that we couldn't do it all alone anymore. I have thought about this long and hard and we are not defeated, we ARE proud and we have nothing to be embarrassed about. We are the parents to one of the most special boys in the world (1 in 5 Million to be exact) he still at 13yrs old doesn't have a full diagnosis and might never have one and we have been champions in his life for 13yrs and will continue to be for as long as he lives. I am Jordan's Mom, I am so proud of every moment I get to share with him, Jay and I have done everything we can do to stay afloat on our own and give Jordan and his siblings everything they need and we DO need help. It would cost so much more to place Jordan in a home or long term care facility and have strangers watch over him and care for him than it will for his MOM to care for him and this is where he belongs. He is part of our family and he will remain part of our family even if that means we have to ask for help via fundraising to pay for equipment and renovations so we can care for him long term. I don't know a single parent that wouldn't feel the same way. We are not going to feel ashamed, embarrassed or defeated anymore. We are going to stand proud as a family and do whatever we need to do and I thank each and every person that has been helping us and supporting us. We SERIOUSLY couldn't do it without you!! Love you all and lets have a wonderful 2013.

Sums it all up!!


Sunday, January 27, 2013

A Tribute to the most wonderful man I know!!

The most wonderful man I know is Jay. He cares for us all and works so hard to provide for our family. Jordan's eyes light up so much when he sees his Daddy walk into a room. Jay's job is to bath Jordan and lift him whenever possible trying to save strain on Mom. This is a man that walked into this child's life knowing the obstacles that lay ahead and embraced him with open arms. 

He is the man that lays on the floor beside Jordan and talks and whispers in his ear. He is the man that cries when Jordan is sick but is strong as a rock when crisis happens. He is a quiet personal man but will pour his heart out if asked about his children. Jay is an inspiration, a breath of fresh air and even though he might not always be politically correct he wears his heart on his sleeve. I understand why Jay is such a good father and it is because he had an amazing man to look up to and learn from. Jay is a carbon copy of his dad and I am sure his dad is very proud and watches over us every day. 

 I love you babe and I couldn't do any of this without you.



Tuesday, January 22, 2013

Spaghetti Dinner and Silent Auction

Slo-pitch City in Dorchester, Ontario is hosting a spaghetti dinner and silent auction for Jordan April 6, 2013


He turned 13 yrs old on January 19 and is growing very quickly; he is in desperate need of new equipment such as a wheelchair, bathseat and lift, stairglide etc. This is next to impossible to a fford over $20,000 in equipment in the next year alone or so and as he continues to grow equipment will need to be replaced or altered. His father works tirelessly 6 days a week to provide for the family and we have never asked for help before from any private or public funding such as organizations, government funding etc. Now is the time to do some fundraising to help Jordan's Family.
Daily tasks are getting more complicated like bathing, dressing, feeding and day to day care. As Jordan grows it makes it challenging for the family to continue without necessary renovations to our home.
In total for renovation costs and equipment costs we are looking upwards of $40,000. We are taken back by this number knowing it is going to grow as he gets older and bigger. I hope all of our friends and family can attend this event. We have an awesome DJ and MC for the night. Some great donations are coming in for the silent auction but more are still needed. Jordan's mom will be catering the spaghetti dinner along with help from friends and family. 


Friday, January 4, 2013

January 2013

HAPPY NEW YEAR

Jordan will be a teenager on Jan 19, 2013

13 years old....I can't believe it has been 13 years!!!

The ups the downs, the good times, the hard times and the impossible times. I would not change it for anything in this world. He is my angel and my boy forever. So many people tell us they have no idea how we manage every day, doing the day to day tasks for a child that needs care 24/7 and some days when we ourselves have had little to no sleep. I have been called a supermom, wonder woman and all that jazz........to you people I say:

I have an easy job, I have the best teenager possible, he won't be sexually active, he won't talk back or be mouthy, he won't make my house messy or have wild parties while I am away, the only drugs he will ever do are prescribed ones that I give him and we will never have to pick him up from a dance, party or other at 3am.........so now I say doesn't that make my life seem a whole lot better??? HAHAHA I promised you all a good news update and something to make you smile and be happy about....hope this gave you all a smile for the day!!

Hoping to finally post some more pics this month as I finally have my laptop fixed as well!! <3

June 2012- December 2012

Jordan had a pretty quiet summer, several small seizures but nothing that put us back into the hospital thank goodness. Lots of baseball games and spending time with family.

Samantha started University at Lakehead University in Thunder Bay which is 18 hours North from where we live. Travis started his first year of high school, Jordan is in grade 7 and Zander will be starting school in a year. An eventful but good fall. Thanksgiving was fun and so was Halloween although it was freezing cold and Jordan did not want to take part in dressing up. He stayed home and helped me hand out candy. 

Travis had some medical issues with his heart condition in November and we are having to watch him closely with sodium intake and activity level ect. 

December Jordan had a lengthy seizure at school and ended up in emerg again his new emergency meds midazolem seem to help quite a bit in shortening the seizures. This one only lasted 25-30 minutes still long but not nearly as long as previous ones. 

We purchased Jordan a hi-tech video monitor that records him while he sleeps and has night vision. We are certain that Jordan has small night seizures but even checking on him every hour through the night I can't seem to catch them happening. We hope this will help to catch the seizures, figure out how long they last and help me to sleep a little.Jordan has an upcoming Neurological appt Jan 7th so that will be a fun day at the hospital. Jordan's birthday is coming up soon and I have no idea what to get him.....lets hope he doesn't ask for another ambulance ride this year :(