Summer is almost over and back to school.....

Olivia had a great summer this year, she attended the "Campgourou" and had a fantabulous time.  There were so many activities that done with the special needs kids at the camp and the best part was that the ratio is 1:1.

Olivia visited Le Pays des Merveilles in Ste. Agathe, went to
watch Cavalia spent many days enjoying the pool and various parks, and they also went on window shopping days at Carrefour Laval when the weather was not so nice.  The monitors and camp counselors are great and always there for help.

Olivia needs routine and with camp she was in a routine, this past week that camp has terminated things have been a little rough.  She is up at the crack of dawn, and by that i mean 5am every morning, refuses to nap and is very cranky and whiny throughout the day.  Lets just say that I am looking forward to August 28, that will be the first day of 2nd grade for Olivia.  Although when I think back, i always envisioned my second grader being a typical child, and fussing over school supplies and clothes.  I would not change my princess for anything or anyone, she is special and unique in her own ways and has her little drama queen moments as well.

I will keep you posted on her return to school, oh yeah a brand new school this year for Jean Piaget....

How do you Explain to a Special Needs Child there is NO POWER?????

Well on Friday we had a pretty nasty rain and wind storm that blew many electrical transformers, our house being one of the many without power.  At 345pm on Friday the power went off and we thought it would be a few hours and all would be good.  Olivia loves to watch TV and therefore we knew it was going to be a tough few hours.  Little did we know that it was going to last 27 hours for us and many others are still with no power.

Saturday morning started off with Olivia waking up at 5am at her nonna's after spending the night which Olivia loves to do.  When she woke up she could sense that something was not right and the TV was closed, the portable DVD palyer helped for a few hours but then eventually the battery had no more life.  All Olivia kept doing was bring us the TV converter to turn on the TV, and we kept trying to explain to her that there was no power and nothing was working but my baby girl did not understand that.  We tried to sing songs and play games on the Ipad as long as the batter lasted. We could see that she was getting very frustrated and nervous and constantly whining for the whole time.  With the nervousness obviously she would not nap and that made her mood even worse.  Let's just say that thanks to my sister in law who had power but no TV we managed to get Olivia to calm down a little by some distraction from her cousins.

So how does one explain it to a child with an intellectual disability that they are not able to watch TV, and that the house is dark yet to not be afraid and feel safe.  All I can say is that is was our first experience and it was not easy but we managed.  My hat off to all the families whom have suffered threw hurricanes and worse with a special needs child.

Power is back, Olivia is happy and so are we...........

Way too long...................

WOW, it has been so long since my last blog and so much has happened in Olivia's life. 

Where to start, oh yeah the best news ever that Olivia began to walk independently in December of 2010 at the age of 5 years old.  With lots of tears and determination, my husband was the great therapist that made his little girl start to walk.  It was the best joy that I could see radiating from both their eyes, something we new in our hearts that Olivia would accomplish despite what the doctors told us.  In January of 2011 we took Olivia to Peru for some natural treatments which was an amazing experience with great results.

During that same year Olivia was out of day care and into pre-k at Ecole Jean-Piaget, what an experience that was for me as a mom.  My first steps into a special needs school was like a slap in the face for my reality, something I guess I wasn't ready for.  It was the hardest thing that I had to do, the school is amazing, as so is the staff the student's in the school range from 5 to 21 years old with a variety of physical and severe intellectual disabilities.  They are all beautiful and innocent with great big smiles on their faces everytime they see you.  Olivia loves going to school and will be starting Grade 2 in September 2013, where does the time go.  Although the school is great, there is a lack in therapy services due to the Ministry of Education cut backs in the schools.  Something that we will have to battle in the new year, although probably a losing battle.

In April 2012 Olivia was diagnosed with Epilepsy after suffering from more that 20 seizures in 2 months.  It was very scary to see your child seizing and not be able to help them, but my husband and I have learned that staying calm is the best help we can give Olivia, something that is not always easy to do.  Although with the proper medications Olivia was seizure free for over a year up until June 5, 2013 when she had 3 seizures.  Children with Epilpsy are much more suseptible to seizures when they are sick, and that is the case for Olivia...a mere case of Strep Throat will trigger 3 or more seizures.  A quick visit to the pediatrician and some antibiotics and the she is all better.

We are so grateful for all the milestones Olivia has been able to attain in the last few years, some that we never thought she would do, and many that we are hope that she will attain.  She still has a long way to go but has come such a long way.  She is a vibrant little girl, so full of life and determination.  Although after almost 8 years we still have no diagnosis, we have not given up and continue to have her tested appoximately every 6-9 months, and continue to provide her with all the special needs that she requires. 

We thank you all for your continued support and words of encouragement.

Franca, Gino and Olivia

3rd Annual Fundraiser

Help Us Help Olivia
3rd Annual Fundraiser
www.helpushelpolivia.com

Club de Golf Metropolitain Anjou
9555 Golf Boulevard
Anjou Quebec H1J 2Y2

Click here for map

Date : Saturday, October 2, 2010

International Cocktail
(Wine (during cocktail) and soft drinks included)
6:00pm – 8:00pm

Menu
Pasta
Salad
Main Course (with vegetables)
Desert
Coffee
** 2 bottles of wine per table included during the dinner
Open Bar will be served after the meal
Night Table

Entertainment provided by
GROUPE DMX

Price: $100.00 (adults)
$50.00 (children 6-11 yrs old)
Free (children 0 – 5 yrs old)

**RAFFLES, DOOR PRIZE & SILENT AUCTIONS**
For information or tickets please contact:
Franca Palermo: francapalermo@hotmail.com or 514-795-7573
Luigi Palermo: palermoluigi73@hotmail.com or 514-983-8404

Please RSVP by September 3, 2010

Been Way To Long

Sorry for not updating Olivia's blog and i can surely tell you that so much has happened since the last blog in November. To begin Olivia went through a very rough patch at Christmas time with 3 weeks of continuous crying and rages once again. Since we were told in October to not take Olivia back to the hospital we stayed home and toughed it out.

Olivia was on 3 medications to help control her mood swings and we are slowly trying to wean her off them, she is already off the Clonidine (and we have already seen a difference) she is much calmer. There are 2 left, Risperdal and Tegretol that we are trying to get rid of. The hospital was over medicating her and therefore messed her up pretty good, it will take a while before she will be drug free.

As for Olivia's progress she is babbling so much more, and is able to get around much more independently by holding on to surfaces while walking. The independence is fantastic and she has come a long way and we are so proud of her. We are so confident that she will one day walk on her own.

With Olivia everyday is a learning experience and we have learned more in 4 years than we would have learned in a lifetime. Raising a child with any form of a disability is a 24 hour / 7 days a week commitment and i commend all the parents out there and that in our situation, better or worse to do everything we can for our children. As I recently said to Olivia's Neurologist, that as long as I have breath in my body I will never stop at getting answers.

As for that said, we took Olivia to see a wonderful Neurologist in New York at the Montefiore Children's Hospital. She was wonderful and took the time to explain and help us understand the way the brain works and how it's affects development. She spent 2 hours with us and listened to our concerns and our hopes and she was very honest as to the fact that 50% of children with a Neurological Delay go undiagnosed. Our appointment was Friday and by Monday morning she had already e-mailed me the report of her consultation, i forwarded it to 3 of Olivia's doctors here in Montreal and only 1 was kind enough to respond and reply to the questions. What can I say, I guess when you pay you get the service.

We have a few projects for Olivia and we may be taking her back to Montefiore for some testing but we are also planning a trip to Peru in November to try to seek for some help. We have heard wonderful things about Peru and are very eager to set on yet another journey with Olivia. We hope that she will be stable with her mood swings to make the travel a little easier or it will be hell. We will keep you posted....

Sorry for the delay...

Long Time Overdue

First and foremost Olivia's fundraiser was a great success and we are proud to say that 20,000$ was raised to help our little girl who has the unknown. Thank you to everyone who contributed to help us help Olivia.

A lot has happened since the event Olivia was in and out of the hospital twice for 10 days with her crying rages once again. As usual the only answer we get is that no one knows why she does this. Olivia cried for 16 hours straight one night and day and the doctors are not able to help, amazing when you think that men are going to moon and they cannot figure out a neurological disorder.

Basically in a nutshell we were told that we are not to take Olivia back to hospital is she has another outburst and that we are to learn to live with it, I'd like to see them live with it. So now the MCH has helped us find other resources to help with with some respite care for Olivia. We will be taking her for a 24hr stay at the Lighthouse, a beautiful homelike setting for families in need of some time to recuperate from difficult situations.

So another Brain MRI is scheduled for Dec 15, if this one is not cancelled due to hype for the H1N1 virus and how there are not enough nurses. Personally I will not inject my daughter who already has a low immune system with a deadly virus that her body will not be able to fight. So now Olivia is on 3 medications to keep her calm and to help her sleep, things have been a little calmer and we will do everything to keep it that way.

We are going to try to see if a doctor at the Schneider's Children Hospital in New York can maybe help us or at least try to. We will do anything to get answers and we will stop at nothing.

We will keep you posted.

Update

Hello everyone,

It has now been one month since Olivia is back on her meds and she has been doing well for the last week, no crying rages and has been reasonably calm, her sleeping is still a little troublesome but not so bad.

So the doctors are not sure why she goes into crying rages, they thought it may be migraines but have sort of ruled that out when the migraine meds stopped working. Olivia is now taking her Tegretol (anticonvulsant) as well as Risperdal (antipsychosis) to help stop the rages. The combination of the two seems to be okay but a struggle to try to give it to her 3 times a day. We hope that will help to stabilize her mood swings (typical girl i guess), the doctors say it may be caused by a lack of communication because Olivia is not yet able to speak. Who know maybe this maybe that, it is all we have been hearing for 4 ears now, just give us some answers. Everything is an unknown with Olivia. There have been 3 cases in the last 15 years like Olivia with her crying rages, get this one is now an adult and seen in a different hospital, one child unfortunately passed away due to other health issue and that leaves Olivia our medical mystery. And from what we are told the patient seen at a different hospital is 18 yrs old and still has her fits, let me tell you this is not something to look forward to if it last a lifetime. We are very grateful for the help that we are getting from the social worker as well as the neurology nurses at the MCH.

Well on a better note, Olivia's fundraiser is coming up and you are interested in attending send me a message at francapalermo@hotmail.com and I will contact you with the details.

Frustrated Mom & Dad