JANUARY 2012

Jymani's 7th Birthday Party!

This year was Jymani's first friend party!!! It was so exciting for us!  Jymani did really well and he loved having his friends, Sam, Shawn and Shawon over for a fun party!!  On his actual birthday we went as a family to see the new Chipmunks Movie "Chipwrecked" with McDonalds to follow.....so Jymani really had a great time turning 7!!

DECEMBER 2011

Hanging out with Grandpa is always a good time!!

WE ALL LOVE YOU SO MUCH BUDDY!!!!

Christmas 2011

Jymani had a fabulous Christmas!! He received so many presents and was able to give the gifts he bought for everyone.  He really understood how special the holiday was this year.

Time sure flies!!!

WOW.......I can't believe how much time has lapsed since my last post.  Not too much has happened beside the fact that Jymani's seizures are still not that well controlled.  His EEG was abnormal as we all knew it would be.  Instead of calling me to help me understand the report his Neurologist mailed me the report and upped and left!  Now I am stuck trying to find another Neurologist to hop on board someone who can hopefully find his/her way through the mountains of records Jymani has.  It is so frustrating and part of me wants to just move back to WI so he can go back to Milwaukee and his team of docs there.  I really love his Pediatrician, she is absolutely on board with all his care and helps refer me us to doctors that he needs to see, but these other "specialty" doctors just don't see to "get it" 100 percent or understand the full magnitude of his disorder.  Its so frustrating, I feel as if I do more talking and explaining than they do!  So the New Year for me will begin with finding new doctors to start the process over again.  We are looking for a new Neurologist and Hemo/Oncologist to step aboard and hopefully take this "Bull" by the Horns.  I am hopeful, but if something doesn't change soon a move back to WI is inevitable.  Happy Holidays to all of you!!

Tomorrow is the Sleep Deprived EEG

I know it is just an EEG.  It is a very typical procedure that so many people go through.  Yet, with every procedure and every doctor visit, my brain goes a million miles a minute.  My heart hurts for him.  Not every 6 year old has to visit so many different doctors in a year.  Not many have to go through millions of different tests, just to receive the same answers which are far from a cure.  He has such a long battle ahead of him, and I know all of this has its place in finding a cure, yet I can't help but feel selfish by being mad that I just know a cure is so far from being found.  Will it be in his lifetime??  I want to know.  I feel like I need more answers than the doctors are able to give me.  My brain hurts from stress and worry, yet I still keep pushing.  There are so many children battling some type of disease and disorder.  And Lord knows my heart aches for each one of them, but when things like this hit so close to home, it makes you appreciate life so much more. I'm in this for the long haul Jymani.  You know Mommy will be there every single step.  I love you and I want to make you better baby, I wish I had all the answers.........

OCTOBER 6, 2011

Jymani had a check up with his Pediatrician today!  She is so happy to see that he is losing weight and behaving so much better than the last time that she saw him.  Jymani weighed 68 lbs today and he is 3 feet 11 inches tall!  She referred Jymani to a Pediatric Dermatologist for the growths on his leg that were at one time treated as warts, but have not been resolved.  He also has horrible eczema and severely sensitive skin.  As if everything else isn't enough! Jymani definitely tops the charts with complexity!!  Jymani had his Flu shot today as well as Hep A shot.  Lets say he left not a happy camper!  He even took back the picture he colored for his doctor!!!

SEPTEMEBER 29TH 2011

TODAY JYMANI MET WITH HIS NEUROLOGIST, DR ROTHMAN TO DISCUSS THE AMOUNT OF SEIZURES HE HAS BEEN HAVING LATELY.  DR ROTHMAN WAS CONCERNED AND ORDERED A SLEEP DEPRIVED EEG WHICH WILL BE CONDUCTED ON THURSDAY. OCTOBER 20TH.  HE ALSO INCREASED JYMANI'S TRILEPTAL WHICH IS ALREADY AT A HIGH LEVEL IN HIS BLOOD.  HE IS NOW TAKING 900MGS IN THE MORNING AND STAYING AT 750MG AT NIGHT.  HE WILL ALSO CONTINUE TO TAKE THE TOPAMAX AS PRESCRIBED, ALTHOUGH WE WILL BE LOOKING INTO WEENING HIM OFF THAT DUE TO THE EFFECT THAT IT HAS ON JYMANI'S BEHAVIOR.  IT IS POSSIBLE THAT WE WILL BE SWITCHING JYMANI TO KEPRA.  HE WAS NOT AT ALL HAPPY THAT HE HAD TO HAVE BLOOD DRAWN AND TOLD US THAT WE WERE MEAN FOR LETTING THEM DO THAT TO HIM! POOR BUDDY...I PROMISE IF I COULD CHANGE PLACES WITH YOU I WOULD!!!