Sleepless Nights

The fundraiser is around the corner and there is still some details left to do. This was allot of work and proud to say that we are doing a great job on our own. A fundraiser is a voluntary donation, help is not asked it is given. Thank you to all those who are helping voluntarily.

Olivia is still not sleeping her nights, and wakes up crying. We have no idea and neither does the doctor. We are at a point of desperation, we are exhausted and functional by adrenaline. We understand that this is our problem and need to find a way to deal with this.

Nobody can understand what we are going through unless they are in our shoes. And many people do not want to be in our shoes. We cannot always burden our families with our situation and therefore we keep to ourselves. We are trying to make the best of a bad situation, in the best way we know how. People may not understand us but this is what our life is like, and we did choose it, it was handed to us. Olivia is a blessing for us no matter how difficult it gets, she just has to look up at us and smile or laugh and everything is forgotten.

Neurology Follow-Up

Olivia went for her Neuro f/u on September 15, 2005 and we are still at the point we were 6 months ago. There is still no diagnosis for Olivia, more blood tests were done and we will see from there.

There is lots happening in our medical system that the government is not informing us of. We were informed that the neurology department at the Montreal Children's Hospital will only be able to see 1,900 patients per year, as of the opening of the super hospital (CHUM). They now see 6,000 patients per year, what do you think will happen to the other 4,100 patients. It is very unfortunate that these children need to suffer more than they already do. Also, i think that the parents have enough to deal with in having a child with special to needs, we don't have the time or energy to fight.

Rest assured my energy for this fight is just beginning to build. I will go public and speak for all the children who are not able to be given services because they DO NOT HAVE A DIAGNOSIS. Olivia needs and requires the same services as any other child with a name to their syndromes. This will not end here, I will make sure that she gets what every other child is entitled to. Our lives are difficult enough and to fight with the medical system is not something we need but something that I WILL DO.

FRUSTRATED

Walker

It took 3 months to order a walker for a child with special needs. Does that make any sense, or does this just prove to us that our medical system sucks. No child or adult should have to wait that long for any form of equipment. When I finally did go to pick it up it was way to big for her. So now, we have to wait another 2 months before we receive the right one. The physiotherapist that greeted us was kind enough to loan us one temporarily until we receive Olivia's.

She is trying hard to keep her balance and try to take steps. We are very confident that will help Olivia to gain better trunk controll. We will keep you up
dated.

Night Terrors

Well, Olivia has been going through a rough 2 weeks. She has been crying at night and waking up from her sleeping in a sweat and crying. Almost like she is having nightmares, but again we don't know she is not able to express herself. It is very difficult to console her when she gets this way, sometimes it is very frustrating for us as parents.

We realize that Olivia is our child and that we are to care for her and giver her everything we possibly can, but at times it is hard to cope with the day to day hardships. She is a blessing for us, and cannot imagine our lives without her. It also hard to explain how she acts when people see her and she is smiling and happy, but we know exactly what happens in our home.