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.
Friday, February 1, 2013
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.
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.
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.
Monday, January 14, 2013
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
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 :(
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 :(
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