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 9^th 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 1^st J

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!!