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!

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!

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!!

Merry Christmas!!!

We have had an amazing holiday!! Jymani and his siblings have had so much fun with all of there new things, but our best gift today and everyday is the gift of life & love. This family has endured so many hardships, but we continue on and thank God for our strength!! Merry Christmas to everyone who stops in to check in on Jymani and thank you for keeping him in your hearts............

Jymani loves his sister Jyacia............

************AND SHE LOVES HIM TO PIECES****************

Today Jymani had the necessary bloodwork done. We are waiting to hear what his neurologist wants to do next. We did go up on the morning dose of trileptal though. So let's hope that makes a difference!! No seizures today! HOORAY!!!!

Bad day........

Jymani has been having seizures today! We are unsure why we have not been able to control his seizures, but we contacted his neurologist and she wants us to have a blood draw tomorrow to see what his Trileptal levels are at. Then he will go up to 750mg of Trileptal in the morning and continue at 750mg at night. Dr. Joseph is considering adding Topamax back to Jymani's medication regimen. (He was recently taken off Topamax as that was not controlling his seizures either.) She feels the Trileptal may not be enough to control his seizures. Today was the first day that I was not right next to him for an entire seizure. I noticed it at the very end, I heard him coughing and by the time I got up to him his lips were coming back to color and he became postictal. My heart ached for him as I know how scared he is when he is seizing. I have never missed a seizure! God, I almost feel guilty!! Then about an hour later, he seized again!! He told me he wanted to lay down afterward, but before he went to sleep he said, "I'm sorry dad, I'm tired, I wanna lay down." His dad told him he didn't do anything wrong and that we were just worried about him. My poor baby, he slept for almost an hour after the second seizure. He did not seize again tonight, thank god!! I hope we can get this under control, it's so scary, as if he doesn't have enough to deal with!

December 8th 2008

Jymani received a package from Santa today!!! What a surprise!! He was so excited and he even received a picture of Santa Claus himself!! Jymani is so thankful!!

...waiting for Santa!!

Christmas is right around the corner!! Jymani is looking forward to opening his presents and spending the day at home with his siblings. Shortly, after Christmas we will be leaving for Florida, as Jymani had his wish granted through the Make-A-Wish Foundation!! It will be double fun for him as we will be there during his birthday!! Today we took some pictures in front of the Christmas tree. Jymani says "Boo-Boo Chicken!" during each picture, it's adorable!! We aren't looking forward to starting Chemotherapy this month, but we got to do what we got to do!! We are actually waiting to hear from Jymani's doctors to see if we can start the infusions after we get back from Florida. So we are keeping our fingers crossed!! Thanks for checking in!!