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!!!

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!

EASTER 2011

Jymani found his Easter basket all on his own today!! And then he made sure to help the other kids!  (each was hidden behind their school pictures.) He is so smart!!!  He knew that Tajai's basket would be behind Tajai's picture...and so on.  Here he is with his Phineas and Ferb basket.  We all know this is his favorite cartoon and I was too excited when I found this basket!!  It was stuffed with lots of goodies and he was lovin' every bit if it!!!

SPRiNG iS HERE!!

Jymani just finished 2 rounds of IVIG and he has been switched from Methylin to Adderol and what a difference it has made in his behavior at home and at school!!  Jymani is playing with his siblings and his friends without major issues and he is working so hard in school to be independent!  This was Jymani's first day at the park after a long and cold winter!  These are the months we long for when the temperature is just right for him to be outside playing with the other kids.  Hopefully Spring lasts as long as winter did before it gets to hot for him to be outside!  That would be fabulous!!

This is Jymani with his siblings Mikayla, Tajai and Jyacia.

ANOTHER SEIZURE................. :(

After 6 months of being seizure free Jymani had another seizure tonight.  This is so frustrating and it makes me wonder if he is indeed having them at school when they tell me he has moments of of just "being in a zone".  Just this past week the nurse called saying he just seemed "out of it", but she didn't think it was a seizure.  I am really starting to worry about this.  We don't see the Neurologist until April.  Looks like I will be making an appointment with his Pediatrician in the morning.  Keep Buddy in your prayers....every night.  Thank You!

MY VALENTiNE!!!

Jymani celebrated his 1st classroom Valentine's Day Party, with his kindergarten class at Maxfield Learning Center!  He of course is my Valentine every day of the year, but this Valentine's Day I was willing to share him with his classmates and teachers!!  On Thursday, Jymani is going in for his 1st IVIG Infusion since 2008.  We all have our fingers crossed that this will help Jymani again.  Recently Dr. Burke at the Masonic Cancer Center has joined the team of doctors caring for Jymani.  We are all optimistic and although we know there is not a cure, we hope to help calm the storm.............WE LOVE YOU JYMANI!!!!!!!!!!!!

Jymani had a great Christmas!!

We spent Christmas in WI. Jymani had a great time with all our family and he received early birthday presents too!  Here is is enjoying his new robe and Toy Story Mr. Potato head!!

Awards at School!!

Jymani has been learning a lot at school. This is his 1st award he received in November for his performance.  We are so proud of him!