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!!!

SEPTEMBER 2011

OFF HE GOES FOR ANOTHER BUSY DAY IN CLASS!

FIRST DAY OF 1ST GRADE (9/6/11)

JYMANI IS NOW A 1ST GRADER!  HIS TEACHER'S NAME IS MRS. BARNES.  HE SEEMS TO REALLY BE ENJOYING SCHOOL AND SEEING ALL HIS FRIENDS FROM LAST YEAR.  THERE ARE A FEW CONCERNS AS JYMANI HAS HAD 2 SEIZURES IN CLASS SINCE SCHOOL STARTED, BOTH DURING OR AFTER GYM CLASS.  I HAVE ASKED FOR HIM TO BE KEPT OUT OF GYM, YET THEY TELL ME THERE IS NO STAFF TO WATCH JYMANI WHILE HIS PEERS ARE IN GYM.  SO OUR PRESENT BATTLE IS TO FIND OUT WHAT JYMANI'S RIGHTS ARE AND WHAT WE CAN DO SO HE DOESN'T HAVE TO MISS 3 1/2 HOURS OF SCHOOL EVERY OTHER WEEK.  ( I WILL HAVE TO PICK HIM UP WHEN GYM STARTS AT NOON, EVERY OTHER WEEK)  JYMANI GETS SO UPSET WHEN I HAVE TO PICK HIM UP.  HE REALLY LOVES SCHOOL AND IT IS UNFORTUNATE THAT THIS SCHOOL CANNOT OFFER ME MORE.  THEY REALLY HAVE NO IDEA HOW COMPLEX JYMANI'S CASE IS.  IT'S JUST RIDICULOUS AND FRUSTRATING.

ON ANOTHER NOTE: JYMANI LOST 3 TEETH THIS SUMMER KEEPING THE TOOTH FAIRY BUSY AND BROKE!

AUGUST 2011

JYMANI FINALLY MEETS HIS GRANDMA ALANIZ!

KISSES FOR GRANDMA!

JULY 2011

JYMANI'S FIRST TRIP TO PHALEN BEACH!

     JYMANI'S 1ST TRIP TO HIGHLAND PARK POOL!                         

FUN SUMMER!!

With Jymani's heat-intolerance it is so hard to even have him outside during the summer without water activities.  So this year we bought him a slip'n slide with hopes that he would get the hang of it.  And look at this!!  He is a regular "SLIP 'N SLIDE CHAMP!!"

JUNE 2011

Jymani graduated from kindergarten!  That was a huge milestone  in Jymani's very complex life!  I am so proud of him and how far he has come!

PRICELESS....

BUDDY & YA~YA
JUNE 2011

So Sick of Seizures........

After bath time tonight Jymani was playing the Wii and he had a seizure.  I was in the other room so luckily Jyacia noticed it right away and called us in the room.  She is such a BIG girl and a GREAT sister!  I feel bad that Jymani has to go through this. I also feel bad that the other kids have to watch him go through it.  They are on top of it though and I am so very proud of her tonight.  This is why we make it so very clear that Jymani cannot be alone at anytime of the day!  The thought of him having a seizure on his own scares me to death!! Jymani went right to sleep immediately following the seizure and I am going to keep my eyes on him all night because he is sleeping right next to me.  Looks like it is going to be another all niter, but a mommy has to do what a mommy has to do!  I will be on the phone with the Neurologist first thing in the morning.  I'm banking on the fact that his thoughts of not seeing Jymani for another year will be changed.   My heart breaks for my baby.........every seizure hurts a little more, it just doesn't get easier.....I LOVE YOU BUDDY!