We did it! We had enough money and we went to the United States and had Steve's narrow veins opened!
About six months ago there was a program on TV about Multiple Sclerosis. A Doctor Zamboni in Italy figured out that many people with Multiple Sclerosis have narrow veins in their neck which leads to a build up of iron in the brain which leads to many symptoms that mimic MS.
This procedure is temporarily being called Liberation Treatment and the symptoms were translated to being called Chronic Cerebrospinal Venous Insufficiency or CCSVI. The liberation treatment starts with a doppler MRV on the veins to see if they are narrow and blocked. If this is so, then an angioplasty is performed, thus opening up the veins and allowing the blood to flow liberally.
As soon as we heard about this we looked into places to get this liberation treatment done. It seemed at the beginning that only European countries were performing this procedure and for a hefty $80,000. I was wondering what body parts of mine I could sell to raise the money! I was upset. I really wanted to try this procedure to see if Steve would feel better.
Everytime we heard of a doctor performing the liberation treatment, the place was shut down. Apparently Canada doesnt think that all the European countries studies were good enough and want to do their own. For the record the studies will start in the fall and will take a couple of years. I do not want to wait that long. Who knows what will happen to Steve's health by then.
People with MS are being forced to lok all over the world for help to get better. It isn't fair.
One day Steve heard of a place in the United States that will perform the procedure. He called and got an appointment! The appointment was only two months away and we needed at least $6,000. Ugh.
With help from a few good friends we raised enough money! I will forever be grateful to these people. God blessed me with these people and I thank Him all the time.
Every day is feeling small changes. He is really tired which is supposed to be normal. I think yesterday he slept 18 out of 24 hours! Every day we see another small change for the better! It was so worth it!
Just a reinder that we are having a BBQ Fundraiser and Silent Auction this coming Saturday. I am not sure if you are coming or not, but I wanted to remind you. We are having a great BBQ around 5:30, live music with Brian Gordon, a clown for the kids who does face painting and balloon animals, alcoholic and non-alcoholic drinks, a raffle for an iPod touch at 8:00, and the silent auction happening all night long.
The night is going to be lots of fun!
If you cannot attend, you can also help us out by donating at any TD Canada Trust with the following info:
transit number: 32002
inst. number: 004
Acct. number: 04006285367
or visit www.krippleone.blogspot.com and click the link to make a paypal payment.
Check out the pictures of our silent auction items:
The other night steve was sick and he and abby went to bed about 8 pm. Jacob and Steven went to bed around 10 pm. Kieran was in the garage playing his x-box. I got home around 11:15 from work. During 10 and 11, some kids broke into the house and stole my laptop. I am upset. It has all my pictures, documents, etc. It was also a macbook. I spent a lot of money for a good computer. I woke up the house when i got home and no one knew where it was. My superintendent said he saw some kids hanging around my house and he told them no one was home (Stupid man!) About midnight we all went to bed, then the same kids broke into the garage and stole all the x-box games, controllers, steve's pot, and all his pot accessories!
We have called the police and the cop that was here returned this morning and is sure about who the guilty party is,but just needs a little more evidence to drag them in for questioning. He is sure when they are questioned, they will all break.
These kids are friends of Kieran's. I have let them into my house, fed them, talked to them, and been really nice.
I am scared that they are going to throw my laptop away. The battery is dead and it always needs to be plugged in. The screen also needs to be at a certain degree for it to work. I am willing to not press charges if I can get my stuff back. I am so afraid that these kids will try to work the laptop and not see it working and chuck it.
I have so many emotions going through me right now!
I know it has been a looonnnggg time since I have blogged. Life has been far too busy for me. I am hoping things calm down soon. But I doubt they will.
There is big news happening in our lives lately. There is a new operation called the Liberation Operation. As a result of studies, it appears that MS, rather than being a disease, is more likely a symptom of CCSVI (chronic cerebrospinal venous insufficiency). CCSVI is essentially the blockage of the outlet arteries from the head with iron deposits. The liberation treatment is surgery to remove the blockage / iron from those arteries. Depending on how advanced the MS is, a person’s condition may stabilize, or improve – sometimes significantly. McMaster has a professor who supports it, and will do the test for CCSVI – for a price, and put it towards a study, but won’t allow you to take the results to a clinic to have the treatment done. The government will not provide support for this treatment yet. Our Canadian government is still "testing".
Steve and I decided not to wait to the turtles in Canada and stared looking elsewhere for help. We eventually settled on a doctor in Albany New York. The costs involved are $10,000. To help offset the costs we are fundraising.
More to come about the fundraising this evening.....
Christmas this year was a trying one for my children. I.had.to.work.Christmas.morning. I have a great job, but because a nursing home is a 24 hours facility, someone has to always be at work. The employees have to take turns working on Christmas. I was happy that I was working days, because at three o'clock I could come home, open presents and eat turkey. I know Jacob was hit the hardest. He pestered a month before Christmas to open present early by one day, early morning, etc. I wanted to celebrate Christmas as a family when I got home from work. As you can see from the pictures, everyone had a good time eventually! Thank goodness I only have to do this every other year.
A friend surprised me and Abby with tickets to see Disney Princess on Ice. We went with her and her daughter. My friend even drove! Talk about spoiling me!!!!! Abby was thrilled beyond belief to see all the princesses that she loves skating around the ice. Unfournately I brought the wrong lens and flash for the camera. My pictures did not turn out the best. You can take a look at them here.
Thank you to my friend for a wonderful evening. I appreciate it and I know you made my little girl a very happy little girl.