Fundraiser 2009

Hello All

We would like to inform you all that we are organizing Olivia's 2nd Annual Fundraiser event on October 3, 2009. The details and where and how much will be established by the end of this week. We hope that all who attend last year will join us once again and all those who were not able to attend will do so this year.

You all donate from your pockets as well as your hearts to help us help Olivia attain the goals that she needs in order to be a normal almost 4 year old child with the unknown in medicine.

we will keep you posted on the progress of the event.

Franca, Luigi & Olivia

Olivia May 2009

Olivia is doing well and climbing everywhere and getting into everything. Although she is not able to walk on her own yet, she finds ways to get around the house. We are very grateful for the progress that she has made and we are hopeful that she will continue to progress.

We have seen great things happen with Olivia since her treatment that we have decided to take her for another treatment in June 2009. I am so confident that these treatments are what is giving her the ability to pull to stand, and climb the steps on her knees and just the vibrance in her. Lets not kid ourselves Olivia still goes through nights where she doesn't sleep and her wake up time is 5am every morning. Olivia does not speak therfore making communication very difficult, what she does is whines most of the time, but I guess that is a form of communication for her, but drives me and my husband crazy.

We felt that as parents we could not wait until October to take her back to the DR, therefore we are jumping the gun and hoping that the next fundraiser will help us. Olivia will be screened once again for ANGLEMAN SYNDROME and we will see where that takes us. She was already tested but the reasearcher feels that we should have further testing done. We take it one day at a time and enjoy every second that she makes us smile and cry...

Neuro Test Results

On March 12, 2009 Olivia underwent 3 neurological examiniations under sedation. Olivia had an EEG (tests seizure activity), ABR (test the ears and cranial nerves for auditory function) and SER (for sensory issues).

I am pleased to announce that the results for the ABR as well as the SER have returned NORMAL, which is great news. But I am even more happy to announce that Olivia's EEG returned with INACTIVE EPILEPTIC ACTIVITY, which is great news.

On March 3, 2009 Olivia received her last dose of Tegretol (anti-convulsant medication), and we were terrified that the episodes would start up again. Much to our surprise or not nothing changed, she was a little fussy for the first few days which is a normal reaction. Now almost a month after and she is doing great, we have not had any prior episodes that we were having in the past.

Although this does not answer our questions as to what Olivia has or why she is struggling with her development, it proves to us as parents that the treatments were a great success of relieving Olivia of her absent seizures. We are not out of the woods yet, this can always recur but we are confident that if we continue with the treatments the chance of recurrences are reduced.

We are glad to have shared this news with all of you.. and on this note we will begin planning for an October Fundraiser event and keep you posted.

The picture that I have inclued was taken the day of her examination March 12, 2009 at the Montreal Children's Hospital.

The Palermo's

Neuro Follow up

Olivia had her neurology follow up on February 3, 2009 and the doctor was happy with the improvements that Olivia had made. We have also finally started taking her off her medication (Tegretol). She was put on Tegretol in December 2007 when she began to have uncontrollable crying tantrums, the doctor's were not sure whether they were a form of seizures or just a mood problem. Well, we are happy to say the crying fits have stopped and now she cries like any other normal child. It will take us 4 weeks to take it off it completely and then we will see what will happen.

Olivia is scheduled in a week or two for an ABR test as well as another EEG to verify for any seizure activity. We are very confident that Olivia is doing really well and that there are NO SEIZURES, well at least we pray that there are none.

Olivia is still progressing nicely, still doing all the things she was but just with much better precision, she is learning how to control her body movements. I will update you all after the test results are in.

Franca

2009

Happy New Year to all.

Well I guess it's time to update you all on Olivia's progress. Olivia is doing really well and is progressing nicely.

- she is able to stand on her own near a wall with some support.

- she is able to take more steps from side to side always holding on.

- she is constantly pulling herself up to stand wherever she can.

- her understanding is much better, we realize that she understands allot more than we give her credit.

- she enjoys playing with others, something that was not easily comprehended in the past. If you ask her to do the horsey she will start to do the motion on your lap and get very excited.

- she will initiate some sort of play, which in the past there was no initiation.

- her fear of everything is a lot better, much easier to make her feel at ease.

- she is a little girl who is coming out of her shell slowly.

- and always has so much to babble about. constantly calls for her papa (real daddy's girl)

We are so grateful for all these changes that we have seen and will keep you updated on further progress.

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.