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!!

......alot of time has passed!!!

Wow!! It's been over a year! Well, where do I begin? Jymani is now almost 4 years old and my how he has grown! He has come such a long way and overcome many obstacles!! Since Jymani was diagnosed with OMS in 12/06 our lives have changed drastically!! We take several trips to the hospital and Jymani has many doctors overseeing his care. Not only is he fighting OMS, he has a seizure disorder, sleep apena and he was most recently diagnosed with ODD. I don't know why and if I question that on a daily basis I think I would go insane. All I do know is that Jymani is a trooper. I couldn't imagine having to go through all the tests, infusions, the poking and the prying that is done on his little body on a regular basis. I know that if I could..... I most definitely would take his place. I wish I could take his pain away....Lord knows I do!!!

Jymani was 20 months when we was diagnosed with Opsoclonus-Myoclonus Syndrome. He was admitted to Children's hospital on December 7, 2006 and had several surgeries before his second birthday.



It's amazing how much time flies when you are so preoccupied with something!! I look at this picture now and I am completely amazed!! This picture was posted almost 2 years from the date that it was taken!! It is actually from December 2006!! I can't believe it! I wish I would have known about this site then, because I really would have added more pictures and updates when when this horrible nightmare started! I am going to try my hardest to keep this updated form here on out and then my friends and family can follow his story!!! Thanks to everyone who takes time out from their day to check in on him!!