Happy Holidays

My family and I would like to wish you all a very Merry Christmas and a wonderful New Year full of health, love and peace.

Thank you to all for giving Olivia the chance be where she is today. 2008 started out on a sour note for us with her being hospitalized in January, then she had her heart surgery followed by bi-lateral tubes placed in her ears for her multiple ear infections. The fundraiser was a point for us to see some light for her as well as for us as parents, and was a great success. We then went on to do her treatments which was the high point for us. We are eternally grateful to all those who donated and helped us. As of November 2008 things have been looking up for us, Olivia had a few mishaps but is doing great and on the right track.

I was able to return to work after a year of absence, all this because Olivia is doing so much better. Daycare is going great and could not have asked for a better educator. She is fantastic with Olivia and Olivia adores her. We hope and pray that 2009 will continue to be just as great and that Olivia continues to progress.

Happy Holidays

Franca, Luigi & Olivia

Babble Babble

Olivia has been doing well since her little incident. She is progressing nicely and doing new things, she is able to do bye bye if you show her how to. She is a little chatter box and babbles continuously, which it is great to hear her little voice. She is also finally able to nod when you ask her a yes no question, at this time everything is yes and if her answer is no she just doesn't nod.

We are very pleased with the improvements that she is showing and are very confident that she will continue to show signs of improvement. Olivia is much more sociable with her daycare friends from what we are told from her daycare educator. She has noticed a significant change in Olivia's social skills as well as certain fine motor developments.

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

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.

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.

Fundraiser

This can be a full time job, but with Olivia it can be difficult to get around. We are really pleased with the outcome of sponsorships that we have received so far. The generosity of friends, family and strangers is overwhelming.

To all of you, Thank you very much....

Busy Week

Well this was the week of appointments we have waited 15 months for. Olivia was finally assessed for the Autism Spectrum Disorder, and we were happy to hear that she is NOT autistic. That was great news, but still once again we are not any closer to finding out what Olivia has.

We also went to see a new Neurologist for another opinion (#3) and he was not able to help us. He was very kind and took the time to explain to us that we need to accept the fact that Olivia will never be a normal 3 year old. Her delays are quite significant and that at this stage it is not likely that she will catch up. Now you try to swallow that as a parent, not likely. We will do more testing with yet another Genetisist and see what comes from that, we will not stop trying to find answers.

Mon Histoire

EKG Post Opératoire le 2 mai 2008


Bonjour je m’appelle Olivia Palermo, j’ai deux ans et voici mon histoire………….

À ma naissance, le 4 octobre 2005, ma maman et mon papa étaient ravis d'enfin voir le visage de la vie précieuse qui avait grandi dans le ventre de ma maman.

Quand le médecin m'a examiné, tout était parfait sauf que lorsque je pleurais le côté droit de mes lèvres ne bougeait pas. Ils ont dit à mes parents de ne pas s’inquiéter car c’était quelque chose qui s’appelait Asymmetric Crying Facies (asymétrie faciale lors des pleurs). Ils nous ont aussi mentionné que mes reins étaient légèrement dilatés mais que tout irait bien car ceci était chose courante.

Au désarroi de mes parents, ceci n’était pas la façon qu'ils avait envisagé d'être parents car comme tout le monde, ils imaginaient un beau bébé en santé venir combler leur vie. À ma première visite chez le pédiatre, le médecin a entendu un souffle au coeur et a demandé à mes parents de m’amener voir un cardiologue pédiatrique.

Je vois un cardiologue pédiatrique à l'hôpital des enfants de Montréal depuis l’âge d’un mois. Pouvez-vous imaginer le choc de mes parents quand on leur a dit, non seulement que j'avais un trou dans le coeur (Atrial Septal Defect) (communication interauriculaire), mais aussi un resserrement de la valve pulmonaire (Pulmonary Valvar Stenosis)!

Au fil des mois, nous avons remarqué qu'Olivia ne progressait pas de la même façon qu’un enfant normal. À l’âge de 4 mois nous l'avons amenée voir un neurologue qui l'a évaluée et qui nous a demandé de suivre sa croissance de près. À un an Olivia n'avait pas encore atteint les objectifs de croissance d’un enfant de cet âge.

Olivia a maintenant 2 ans et demi et vient tout juste de réussir à s’asseoir toute seule. Elle est incapable de marcher ou de grimper, de se nourrir toute seule, elle ne parle pas et elle n’est pas autonome. Olivia est une petite fille heureuse et sociable qui est en apparence semblable à un enfant de son âge mais comme parent on aimerait bien l’entendre dire “Maman, Papa je t’aime”. Entendrons-nous ces mots un jour? En tant que parents ceci est très difficile à accepter.

Au cours des mois et des années nous avons amené Olivia en kinésithérapie ainsi qu’en Occupational Therapy (ergothérapie) à l'hôpital des enfants de Montréal et en clinique privée. Malheureusement, Olivia aurait besoin d’une thérapie plus approfondie mais notre système médical ne peut pas nous la procurer. Nous avons inscrit le nom
d'Olivia sur toutes les listes d’attente imaginables en espérant que quelqu’un appellerait, mais sans succès.

Nous avons amené Olivia voir un spécialiste génétique qui était merveilleux et qui a essayé de nous donner des réponses mais malheureusement personne n'est capable de nous dire exactement de quoi souffre Olivia ou si elle s’en sortira. On nous dit qu’elle présente des caractéristiques liées à l'autisme mais une évaluation n'est pas pour demain car les listes d’attentes sont longues. Le temps est précieux et les enfants n’ont pas de temps à perdre – chaque seconde compte!

Mes parents ont tout essayé. Ils m’ont même amenée à Toronto à l’hôpital Sick Kids pour une évaluation mais ils n’ont pu faire mieux que ce qui avait été fait ici.

Je pourrais continuer à vous raconter tous les examens déchirants que j’ai dû subir sans résultat ni réponse. Nous désespérons de nous-mêmes et du système médical en essayant d'obtenir des réponses sur le diagnostic d'Olivia.

Pour un parent ne pouvoir connaître l'avenir de son enfant est le pire sentiment possible. Nous avons besoin de réponses, et nous voulons des réponses, et rien ne nous arrêtera pour les obtenir.

Heureusement il existe beaucoup de traitements pour les enfants comme Olivia, mais malheureusement ils sont très coûteux et deviennent inabordables. Nous espérons qu'avec votre aide nous pourrons obtenir ces traitements pour Olivia et ainsi faire une différence dans sa vie.

Je vous remercie d’avoir pris le temps de lire mon histoire. Si vous désirez faire un don, s’il vous plaît le faire parvenir à:

Olivia Palermo (si un recu pour fins d'impot n'est pas requis)
Fondation Minorité invisible (si un reçu pour fins d'impôt est requis)
3245 Hector Lussier Laval, QC H7C 2S4

Merci
Francesca, Luigi et Olivia Palermo

Somewhere Safe

Spoke to Soon

On Friday Olivia had a fantastic day, she was happier than I had seen her in months. She was full of life, laughing and wanting so much attention. It was great, but then she made me pay for it on Saturday. She woke up in a pretty good mood and took a morning nap, and she awoke from it crying. I thought she just wanted to be pick up but the crying turned into one of her FITS which lasted 3 hours long. The rest of the afternoon was okay once she got that out of her system.

Today sunday she was a little cranky this morning with a constant whine, but it did not escalade into anything. THANK GOD, they are very hard to handle. But I have to say that Olivia is good you would want 10 of her around.

Mommy loves you no matter what!!!!

Autism Assessment

Well today was the day that my husband and I met with the Psychologist from the Children's to assess Olivia's developmental history. As usual we feel like
parates who constantly repeat themselves and in the end get nowhere. We gave her all the details she needed to hear and of course she told us that she does not feel that Olivia fits into the ASD spectrum. What a surprise, we could've told them that. We knew that she doesn't fit the spectrum, but I guess they needed to rule it out. So now they are asking us to go back next week with Olivia, so that they can evaluate her to complete the file.

How much more frustrating can this get, no one is able to give us any answers to anything. All they tell us is that maybe one day somebody will have heard of a similar case. Do they think that we have time to waste waiting, that is why we are so keen on getting her stem cells done.

Frustrated

Nervousness

Olivia always seems to be very nervous and wanting to bite everything. She is obviously very frustrated but cannot express it to us. I have made an appointment for her to see a pediatric dentist maybe her teeth are bothering her. Olivia is hypersensitive therefore does not allow me to brush her teeth. When I tried to do it with a wet face cloth she bit my finger.

Yesterday was okay but she did not want to nap at all, making it difficult for her to fall asleep. Apart from her 10ml's of Tegretol I also gave her some Melatonin to calm her down. It is unfortunate but drugs are what works, and we need some sanity now and then.

Calmness

Well it has been a while, Olivia has had a few calmer days. She was on a rampage last week, doing very scary things to herself in her rages of fit. She scared me so much one day that I called my husband to come home from work. She was having one of her fits and she began to pull at her hair and clothes and was trying to bite herself. I was terrified and took her to the doctor, of course by the time we got there she had stopped. Very frustrating, next time I will video tape it and show it the them.

She is no longer in daycare, they are unable to handle her rages, or more they cannot be bothered. So I have her home with me everyday until she can start at another daycare, and hopefully that works out well.

A Very Long Day

Today was a rough day. Olivia woke up at 3am and didn't stop crying until 6am. It was the same way all day, she just cried and whined until she fell asleep at 4pm for a nap. I wish I could understand what she is going through, and why all these mood swings.

The phsychiatrist last week was not able to tell us anything, she says we need to wait for the AUTISM assesment and see what they say. Everything is about waiting but mean while nothing is getting done. Hopefully I will get a call soon for the assessment. This is the last test to be done.

The Storm is back

Well is was great for a few days with no tantrums and hysterical crying, and it is back. It started at about 2am and lasted until 4am, and then started all over again at 730am and just ended at 1045am. I am glad that we are going to see a phsychologist tommorow at the Children's to evaluate her behavior. Maybe she will be able to give us some answers as to why she is always in a rotten mood.

I can probably answer that, the poor child wants to do so much but is restricted, and trapped in her own little body. Frustration seems to be the cause of her outbreaks. We will see what the doctor tells us.

Fondation Minorité inVisible

Neurology Letter

Tough Day

Yesterday her follow up went great, her little heart is doing well and the liquid formation is gone. She has been in a rotten mood all day crying and whining. The night was just as bad, she goes through this at times. It has once lasted 4 months of constantant crying and uncontrollable tantrums, I pray that it is not going to happen again. It is very hard because Olivia is not able to tell us why she is crying, so it is a guessing game for us. I hope that she will be better tomorrow, we have a round of O/T and P/T back to back.

Cardio Follow Up

Olivia is going for her follow up tomorrow since her Heart Catherization procedure to close the hole in her heart. There were a few issues in the begining and I am hoping that we get a clean bill tomorrow. I will keep u posted.....

A Great Sunday

Today was a great Sunday, the first of many that we did not have to rush Olivia to see a doctor because she has yet another ear infection. She was calm and joyful, which was a great relief for my husband and I. Olivia has been going through a rough patch, and because she is not able to tell us what is wrong, she cries all the time. I pray that her day at daycare will be just a good tomorrw, will keep you posted.

Olivia's Story

Hi my name is Olivia Palermo, I am 2 years old and this is my story………..

When I was born on October 4th, 2005 my mom and dad were thrilled with the prospect of finally seeing the face of the precious life that was growing inside my mom’s tummy. When the doctor’s checked me everything was perfect except that when I cried the right side of my lip didn’t move. They told my parent’s not to worry; that it was what was something called Asymmetric Crying Facies. Also that my kidneys were slightly dilated and that I would be okay, it is very common.

Much to my parent’s surprise this was not how they expected parenthood to be, everybody imagines a beautiful healthy child coming into their life. At my first pediatrician visit, the doctor heard a heart murmur and asked my parents to bring me to see a pediatric cardiologist. We have been seeing a pediatric cardiologist at the Montreal Children’s Hospital since I was 1 month old. Can you imagine my parent’s shock when they were told, that not only did I have Atrial Septal Defect (hole in the heart) but also Pulmonary Valvar Stenosis (a tightening of the pulmonary valve) which would one day have to be repaired.

As the months passed we noticed that Olivia was not progressing the way a normal child should be, she was not meeting any of the milestones that she should’ve been. At the age of 4 months we took her to see a neurologist at the Montreal Children’s Hospital where he assessed Olivia and informed us to keep an eye on her growth and milestones. Olivia had not met any of her milestones by the time she was one. Olivia is now 2 ½ yrs old and has just recently been able to sit herself up on her own. She is not able to walk, crawl does not feed herself and also does not speak, and she does not do anything independently. Olivia is a very happy outgoing little girl who in appearance is very much like a child her age. But as a parent we would love to hear her say “Mommy, Daddy I Love You,” will we ever hear those words! That among everything else is very difficult to accept as a parent.


As the months and years have gone by we are taking Olivia to Physiotherapy as well as Occupational Therapy at the Montreal Children’s Hospital as well as privately. Unfortunately Olivia would need much more extensive therapy but our Medical system cannot provide for it. We have placed Olivia on all the waiting lists imaginable, hoping somebody would’ve called, but nothing.


We took Olivia to see a Genetics specialist at the Montreal Children’s Hospital, who was wonderful at trying to give us answers, but unfortunately nobody is able to tell us what it is that Olivia has, or if she will ever come out of this. We are told that she holds Autistic features / traits but we are nowhere close to being assessed, the waiting lists are so long. Time is precious and children do not have time to waste, every second counts in their journey.

My parents have tried everything, they also took me to The Hospital for Sick Kid’s in Toronto and to no avail they were not able to do more for me there than they have not already done here. I can go on and on and tell you all of the agonizing testing that has been done with no answers. We are at a point of desperation with the medical system and with ourselves trying to get answers on what Olivia’s diagnosis is and what will be the outcome. For a parent not knowing what your child’s future will be like is the worst possible feeling. We need answers, and we want answers, and we will stop at nothing to get them,

Fortunately there are lots of treatments available to children like Olivia, but unfortunately they are very costly and become unaffordable. We hope that with your help we will be able to provide these treatments and make a difference in Olivia’s life.

I thank you for taking the time in reading my story, if you would like to make a donation or sponsor my fundraiser to help me in my journey please mail it to:

Olivia Palermo (If you do not require tax receipt)

Fondation Minorite Invisible(If you require a tax receipt)
3245 Hector Lussier Laval QC H7C 2S4

Thank you
Francesca, Luigi & Olivia Palermo