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!!

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 2^nd 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 5^th 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. 

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!!

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

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!!

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