From Joy to Terror

Well Sunday afternoon Nov 16, 2008 we were enjoying a nice lunch and Olivia began to feed herself a slice of watermelon. We were overjoyed that she was able to do so, i took a short video and some pictures, the day was going too well maybe.

That same night we put Olivia to bed only for her to wake up a few hours later crying hysterically. In the dark we could not see what was wrong, therefore we brought her downstairs. Quickly we realized that she was burning up again with fever and non responsive, she was lying limp on the kitchen counter while my husband in a panic called for help from family. Within minutes that they arrived Olivia was still in and out of conciousness, so we decided to call 911. The ambulance was here within minutes we explained what had happened and withing seconds she was in the ambulance and off to the Children's. You figure we arrive by ambulance they will see us quickly, well we passed through triage quickly and saw a nurse and then waited 3 hours to see a doctor whom i had to ask to do blood tests. She told me "it is not in our protocol to run bloods for a febrile seizure". We insisted and they finally did it, by this time it is 4am and we still have no news, they come back tell us she may have a virus keep an eye on the fever and see her pediatrician in a few days. As for the febrile seizures, very common and explained what to do. Easy to explain when it is not happening to your child.

By 7am they released us and told us to keep giving here Tylenol, on the way home Olivia was burning up again and just as we reached the house she began to seize again. We took her out of the car and quickly did what we were told and it stopped quickly, gave her Tylenol and the fever went down.

At 1230pm we got the scare of our lives, she was in her highchair eating some soup when it began again, but this time was worse she turned blue in the face almost instantly. In a panic we dialed 911 again and they rushed her to Cite de la Sante. Within 20 minutes Olivia had an IV running, they had taken blood and urine sample and prepared to have her admitted. We could not believe how fast and how amazing there service and attention was. Within 3 hrs she was in her room and they were trying to control the fevers, she had another seizure like the one at home at 6pm on Monday night and that was the last one (THANK GOD).

They ran a battery of tests for everything that they could think of, meanwhile placed on another medication to stop the seizures seemed to be working. Her fevers were quite consistent every 4 to 6 hrs. By Wednesday Nov 19 the fevers had diminished and Olivia was starting to look like herself again.

We were happy that all of the tests returned negative and therefore all it was was a virus, she was able for the first time in her life to fight something off on her own without being on antibiotics for the next month.

She is finally home where she belongs and back to herself, she is still progressing despite the set back this week and we are very happy for that.

Thank you all for your thoughts and prayers.

Yeah Olivia had Fever.......

Most of you will think I am crazy for being happy that she had fever, but anyone who knows OLivia well enough know that she NEVER EVER got fever with her ear infections. She has been on antibiotics since October 9, 2008 for an ear infection and never once did she have a slight fever.

Olivia's treatments were done on Oct 26, 2008 and since then she has had a few series of slight fevers, we've taken her to the doctor and he informed us that the fever fought off the infection, so NO ANTIBIOTICS. We definately feel that this is no coincidence and that something good is coming from these treatments. Her immune system is rebuilding stronger, more capable of fighting off infections.

Will keep you posted!!!

We are back.....

Well we are happy to announce that Olivia received her treatments on October 26, 2008. We worked very hard to raise enough money for this and thank you all for giving Olivia this opportunity.

The treatment went really well and she handled it like any child would (kicking and screaming) but we managed to get through it. We noticed about 3 hours after the treatment that Olivia was able to hold her bottle to her mouth with both hands (something she was not able to do).

We are very hopeful that only good will come out of this and wish to return in 6 months for another round.

We made a vacation out it and spent 1 week in the DR, where the weather was unbearably hot. Olivia enjoyed the pool for a day or two and them began to have fever by wednesday night. By 3 am she had spiked a fever of 40 and began to have febrile seizures, which were terrifying for us. We were very grateful for friends who were on the same trip that helped us tremendously that night, we will forever be thankful to both of you. A doctor came to visit Olivia at the hotel and thought that it may be an ear infection, but we feel it was more a Sun Stroke. The situation was very scary being in another country but thankfully it all went well. We spent the rest of our vaction taking turns staying indoors with Olivia.

We are home and see some little changes in her which makes us very hopeful. We will see within the next few months what progress she will make.

Franca, Luigi & Olivia

Ear Infection

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

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

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