"We must overcome difficulties, rather than letting difficulties overcome us!"

Wednesday, January 21, 2009

Jymani's 4 years old now!!






As most of you know Jymani celebrated his birthday in Florida this year, thanks to the Make-A-Wish Foundation, he was able to eat breakfast with Mickey and friends on his actual birthday! And to make things extra special for him we had a birthday party for him the Saturday after we got home so he could share his special experience with friends and family! Unfortunately, after the party guests left Jymani had another seizure and now we have gone up again on the Topamax (as well as continuing the Trileptal). Jymani's neurologist is also ordering yet another EEG that will be done during another Sleep Test as Jymani is not sleeping well again and has been crying & whining more the last few months. If you notice in these pictures his cheeks are very flush and were warm to the touch, that was an indicator to me that he could possible have a seizure as when he gets too hot he seems to have seizures. Approx. 1 hour after these picture were taken he seized for about 1 minute.

Monday, January 19, 2009

Back from Florida!!!





HI EVERYONE!! WE ARE BACK AND WE HAD AN AMAZING TIME!! YES, JYMANI COULD HAVE BEHAVED BETTER, BUT NOW THAT IT IS OVER I MUST SAY YOU LEARN TO TAKE THE BAD WITH THE GOOD! I AM GLAD WE ARE HOME THOUGH AND THANKFUL FOR THE WONDERFUL EXPERIENCE!! WE HAD BREAKFAST WITH THE CHARACTERS ON JYMANI'S BIRTHDAY AND THAT WAS SO MUCH FUN! JYMANI TOLD LILO "YOU SO PRETTY" AND NOW HE TELLS US SHE IS HIS GIRLFRIEND!

Wednesday, January 7, 2009

HAIRCUT!!!!!



Jymani was such a naughty boy at the barbershop today! His barber had to get out her "paddle"! This isn't the best pic but hey he was so tired! He looks so different now that his curls are gone! Tomorrow is a big day, his Neurologist ordered an MRI because he has been having so many seizures and we have to go thru day surgery because he cannot be sedated. I hope we get some good news and then Friday we leave for Disney!! Wow, what a busy week we've had, I swear it's never ending!

Thursday, January 1, 2009




HAPPY NEW YEAR EVERYONE!!!!
Well the good news is we leave for Florida in 9 days!!! The bad news is when we get back we start chemo again! :( But while we are in Florida we will not be thinking about the stresses back home. Jymani's wish granters came over the day after Christmas and had a very special "Wish Day Party" for Jymani! It was very exciting for all of us and Jymani was very lucky to have such special wish granters, so a big THANK YOU to the Make-A-Wish Foundation and lots of HUGS and special thanks to Dick & Alice for making Jymani's wish come true!!