Well, the last 2 weeks were very tough. Olivia began at about 10pm one night to cry and it didn't end till about 430am the next morning. She went down to bed and was good and then woke up hysterical, we were unable to calm her down. We tried everything, watching TV, playing some of her favorite songs, playing with her. I got so desperate that at 2am I got in the car with her and started driving around our neighborhood. I did this so that my husband would get some sleep he wakes up at 445am to go to work. The car ride worked she had fallen asleep and as soon as I pulled into the driveway she started all over again. My husband then decided to try again, by now it is 3am and we are exhausted and she is not close to falling asleep. Well, the drive did not work so my husband took her down in the basement and watched TV with her on him till she fell asleep.
Obviously my husband stayed home from work the next day, and Olivia had a total of maybe 4 hours sleep. The next day she started again so we realized that something was not right. Olivia her 1st dental appointment on October 9, so we thought maybe she was having trouble with her teeth, but her teeth are perfectly healthy..regardless that she is so hypersensitive that I cannot brush them. I then realized that she must be getting yet another ear infection, and i was right. So 7 days of antibiotics and did not clear...we too her to the ER last Thursday and her pediatrician was on rounds and saw her quickly...changed the meds and today has no more infection. We are grateful since we are leaving Saturday for Dominican.
Relieved
Monday, October 20, 2008
Thursday, October 9, 2008
Fundraiser
Well the fundraiser has come and gone, after many months of preparation we have finally seen the light. The event which took place on October 4, 2008 (olivia's 3rd birthday) was a great success. There were 340 of our family, friends and friends of friends. We are so thankful and grateful for the amazing turnout, and generosity of the people.
Olivia was an angel on that evening and did not say a peep. She just went from arm to arm and smiled and laughed and also danced a little. It lit up our hearts to see her so happy, almost as though she knew that everyone was there to help her. We were very honored to be surrounded by such loving, caring and giving people. Thank you to all our sponsors who made all the raffles possible and raised us over 6000$ alone in raffle ticket sales.
The evening was a great success and we are very proud to say that we have raised enough money to be able to take Olivia for her first round of treatments. It means the world to us to think and know that all of you have made this possible for Olivia.
All we can say right now is that all your prayers are needed on October 26, 2008 which is when Olivia will begin her new journey. Thank you seems to be not enough, after all of the help and support that we have receieved.
Francesca, Luigi & Olivia
XXXOOO
Olivia was an angel on that evening and did not say a peep. She just went from arm to arm and smiled and laughed and also danced a little. It lit up our hearts to see her so happy, almost as though she knew that everyone was there to help her. We were very honored to be surrounded by such loving, caring and giving people. Thank you to all our sponsors who made all the raffles possible and raised us over 6000$ alone in raffle ticket sales.
The evening was a great success and we are very proud to say that we have raised enough money to be able to take Olivia for her first round of treatments. It means the world to us to think and know that all of you have made this possible for Olivia.
All we can say right now is that all your prayers are needed on October 26, 2008 which is when Olivia will begin her new journey. Thank you seems to be not enough, after all of the help and support that we have receieved.
Francesca, Luigi & Olivia
XXXOOO
Thursday, September 18, 2008
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.
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
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
Wednesday, September 3, 2008
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 updated.
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.
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.
Monday, August 25, 2008
Update
Well alot has happened since the last blog. Olivia has been going through her tantrums once again, and we have no idea why. They seem to come on from one second to the next and for no apparent reason. My husband and I are finding it harder and harder to handle, maybe because she is getting older and has more strenghth.
The fundraiser preparations are going really well, and i am enjoying the planning. It is hard at times to have to repeat myself with Olivia's story, and explain how we hav no diagnosis for her. Sometimes people have a hard time understanding that we don't know what is wrong with our little girl, but trust us if we knew we would tell the world.
Speaking of the world, we were lucky enough to have had a website made for Olivia. A friend of ours spoke about our story to someone and he was kind enough to offer his services. You can vie her story at www.helpushelpolivia.com
Send us your feedback, we would love to know what you think of the site.
The fundraiser preparations are going really well, and i am enjoying the planning. It is hard at times to have to repeat myself with Olivia's story, and explain how we hav no diagnosis for her. Sometimes people have a hard time understanding that we don't know what is wrong with our little girl, but trust us if we knew we would tell the world.
Speaking of the world, we were lucky enough to have had a website made for Olivia. A friend of ours spoke about our story to someone and he was kind enough to offer his services. You can vie her story at www.helpushelpolivia.com
Send us your feedback, we would love to know what you think of the site.
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