Life Happens!!

It has been a while since I have felt like writing a blog post but today is that day.

Our family has been through quite a bit in the last few months, Jordan has started new meds (again). He had several more seizures in February but finally got his cast removed. Jordan was also involved in an accident on the school bus where his wheelchair sustained enough damage it needed to be replaced. It is now 4 months after that and the wheelchair has been ordered. We want to thank Custom Mobility for helping us navigate this ordeal and loaning Jordy a wheelchair until his arrives. 

On March 2nd 2014 our lives changed forever. We were excitedly waiting for Sam and her boyfriend to drive down south from Thunder Bay for a visit when we received a phone call from Hearst, ON. hospital. There had been a tragic accident. Sam and Patrick were involved in an automobile accident with 2 transport trucks and sadly Patrick passed away instantly. The hospital informed me Sam was at Hearst Hospital but they didn't know the extent of her injuries yet. She was then airlifted to another hospital and then air lifted back again to Hearst Hospital. Just before I left to hit the road for the 14 hour drive to go to the hospital I received a phone call from Patrick's Mother Lyane. I could barely speak because I was so shook up and feeling so much grief. I so wished I could take her pain away and still do to this day. Once arriving at the hospital I got to see Samantha right away. We both cried and cried together still not knowing the extent of her injuries. To make a long story shorter. She sustained major injuries to her neck and back, Chipped her spine in 2 spots and broke a bunch of cartilage in her spine. Her right ear was tore almost completely off however the doctors did a good job stitching it back on. She tore all of the ligaments and tendons in her right hand and her whole body was covered in lacerations and bruises. Even with her injuries I just wanted to hug her so tight because she was still here. The emotional trauma and scars she will have to deal with will take a lot longer to heal than the physical. They were on a remote part of the highway and it took first responders an hour to reach her before they could start to extract her from the vehicle. 

We then started the journey to bring Samantha home to London so I could care for her. Once arriving in London my husband went to get us some breakfast and had learned that someone else had paid for our meal. This started the biggest movement of Pay It Forwards I have ever been involved with. Our family took this tragedy and turned into a positive and started #PayItForwardForPatrick. To this date there has been over 100 pay it forwards from all over Canada and the USA and we are still being notified of more every week. Nothing we can do or say will ever make this tragedy go away or the pain any less but remembering and honouring a beautiful young man that lost his life too soon can sure start the healing process. I had only met Patrick once but I loved him because he loved my daughter and made her smile. 

Samantha is now home with us in London and she will be here for a while. She is anxious to get her own place and be on her own however because she can't return to work or school she still needs our assistance. Not a single day goes by that I am not thankful, speechless or overwhelmed with feelings about this however with great family and friends by our side we will persevere through this as well. Patrick's family and his Mom (Lyane) and Dad (Mike) have been so gracious and helpful to us. Through this all we are bonded together as 1 family now. 

When the accident happened with Samantha and Patrick, Jordan was very sick. The new meds were wreaking havoc on his body. I laid in his bed next to him and explained he needed to get better, he needed to behave and we couldn't deal with any more hospitals or seizures. His sister needed our attention now just as he had so many times in the past. Weather it was THAT talk or the new meds he listened. He has been so great since March. So happy and full of life and smiles. It is a new Jordan, like I have never seen him before. He still has moments but he is more social than I have seen him in years. 

Yesterday Jordan graduated grade 8 and next September he will start high school. I am going to post a bunch of pictures from the last few months and of his graduation but I wanted to save that for a new post.

No matter what life throws at you, remember you have a future and don't let it slip away because of a tragedy. Live each day as if it is your last and ALWAYS tell the people in your life how much you appreciate and love them.

THANK YOU again to everyone that has helped us through this difficult time and most of all to Lyane and Mike for your warm love while dealing with your own emotions. We love you!!

Jordan's Journey Now on Facebook

Come visit us and like our facebook page:

https://www.facebook.com/jordansjourney2000


There will be more regular updates on the facebook page as well as little tid bits of info. The blog will keep running for larger updates XOXO

2014....fingers crossed!!

Well we are almost a month into 2014 and my fingers are crossed for this year to be a better year for Jordan.

His cast came off last week finally and even though he is in quite a bit of pain still it is nice not to have to lug that thing around. It was getting pretty heavy and never mind the hassle of trying to bath him with a cast from hip to toes.

A few smallish grand mal (tonic clonic) seizures over Christmas Holidays. Several trips to emerg for seizures and broken femur related issues and 4 appts with the Ortho Surgeons but thank goodness that is done for now.

Jay has been off of work for 8 weeks due to stress, anxiety and chest pains. Tonight is his first night back and I will miss him at home lots but am also glad we might be able to get things back to normal. He still has anxiety and there are so many contributing factors but with family and friends by his side and a wonderful understanding doctor I hope this is the last of the major anxiety attacks. 

I was raised that we are never in a bad enough situation that we can't help others. Even though this holiday season was plagued by stress for us we were glad to help 2 families have a wonderful Christmas Dinner they might not have had. It makes my heart feel so warm helping others. We also got to have Samantha home for 9 days over the holidays and meet her boyfriend. He seems very nice and like he just might fit in well with our crazy family. Sometimes I wonder if anyone is really prepared to meet our family!! HA!!

So far no trips to emerg in 2014 for anything that we weren't already prepared to handle. I am trying to figure out a weekend to go to Toronto and visit some family that I don't get to see very often as well as I made it a New Years Resolution to see the people that matter the most and I haven't made time for in the past. Also part of that resolution is to make sure the people that matter most know it. I don't tell every Tom, Dick and Harry that I love them but I do need to tell the people I care about more often. WARNING to all friends and family you may see a more mushy, softer side of me in 2014....don't let it freak you out just roll with it. 

I have been witnessing several families going through struggles similar to ours with their children and every day it makes me thankful for the good days we do have.

We have some big plans as a family in 2014 and I can't wait to fill you all in. Take Care of Each Other and remember to dance in the rain or lately in our case the snow!!

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