Mommy's Boy

Jymani is getting stronger and tougher ever day!  I know it has been awhile since I have posted, things have been rough to say the least.  Jymani started seeing a new Neurologist in Minneapolis at the Noran Neurology Clinic.  Hopefully we can tackle these seizures once and for all!  We have increased one of his medications in hopes to not have to have surgery to help prevent them from re-occurring.  School is going great!  He has made great strides and is even learning math now!!  It is a very slow process, but we are moving in the right direction and that is what matters!  He has Ms. Monroe again this year and I couldn't be happier!  He has made many new friends and this year we celebrated his 8th birthday at Chuck E Cheese.  Jymani is without a doubt an OMS warrior!!  I LOVE YOU BUDDY!!

He is his brother's keeper.............

Jymani had a great playtime with his Big Brother Dekeshion, this weekend.  After having another seizure on Thursday, Jymani was forced to spend more time inside, but Saturday and Sunday we filled the pool and let our "Buddy" get in some great playtime.  It was so nice to have his brother jump right into the pool and wrestle around with his baby brother.

Rough Summer....

It's been hot and Jymani has had a very tough summer.  He had to leave school early because of some very unpleasant and impatient teachers, and then to have to spend most of his summer indoors because of the extreme temperatures seems so unfair.  The only time he has been able to go outside is to swim, no basketball or football (which he loves), no running around the yard doing what little boys do, every time I have to tell him he can't go outside because it's too hot, breaks my heart.  He gets it, because he is used to it, but I see how sad it makes him.  I hate that Jymani receives the short end of the stick.  The seizures are steady and horribly scary.  The heat intolerance hasn't improved at all.......in fact it seems every summer gets worse and worse. The behaviors are increasing and the ear infections are recurring.  I'm mentally, emotionally and physically exhausted.  I apologize to everyone that I haven't posted anything in a couple months.  Usually, NO news is good news, unfortunately in this instance, I just wasn't ready to report that things haven't been the greatest and Jymani's struggle is still very much uphill.   We are still fighting for answers, searching for doctors who have knowledge about OMS and the lingering effects from it.  We are at Neurologist #5 and I won't give up.  I won't stop fighting for him and with him.  Please keep my baby in your thoughts and prayers.  Be thankful for your health, because there are so many people in this world struggling to live a normal life.  Our most innocent children, who don't even know what its like to be a normal healthy child, wake up every day with the courage to push forward.  Jymani and the millions of children who battle the long list of diseases and disorders are truly my heroes......................Thank you to our followers <3

Ear Infection

Today Jymani had an appointment with his Pediatrician for ear pain and just to have a good look over him, since doing the referral to Milwaukee.  Come to find out his left ear was so infected that the Tympanic Membrane ruptured and the fluid/infection was just sitting in his ear.  This is the 2nd time this has happened with his ears, its like he doesn't express the pain during the infection until after the membrane ruptures.  Poor Buddy, I am thinking this may be the reason he has been so off the last few weeks.  I'm sure it doesn't explain it all, since clearly the Adderall has never really been a complete fix on his behaviors, but I think it for sure plays a part.  let's just hope the antibiotic for his ear and the Risperidone will help and we will soon start to see positive changes in his behavior.  (Hopefully, when he sees his Psych doctor on May 7th, we will get the Risperidone prescribed and started!)

I am so frustrated with everything that has been happening over the past month.  I feel like I am falling apart!  All I want to do is what is best for my little boy, I keep trying to send him to school, just to turn around and go get him an hour or so later.  It's like they just can't handle him anymore and my back is against the wall.  I am doing everything I am suppose to do!  Lord knows I am!  I am going above and beyond what most parents do.....am I missing something here?  Now the school has all but given up on him, I am constantly having to go and pick him up.  I mean what is the sense of even sending him anymore if they can't handle him?  Everyone seems to be slowly turning their backs on us, and I don't know where else to turn!  We now have been referred BACK to Milwaukee to the first Neurologist who diagnosed him, but they aren't even sure if the insurance will go through.  I am just at a complete loss.  BUT I'M NOT GIVING UP ON YOU JYMANI, none of your family is......you still have all of us who are going to keep pushing and fighting until you get the care and treatment you need!

Its been a hard few weeks..............

Jymani has really been struggling to keep his "cool" at home and now his behaviors are coming out in school.  Yesterday, he had to leave school because he was being a danger to himself and others.  I was told that it would be "unsafe" for him to ride the bus home.  The thing that gets me is they talked to me earlier in the afternoon and told me that there was nothing they needed me to do.  I told them I could come and get him and they said he was better and he was back in class with his peers.  Really, I should have just went with my first mind and picked him up.  His school has this "Solution Room" that I think hurts more than it helps.  It is an empty concrete "jail cell".  Jymani spent most of the afternoon in there yesterday and he was a complete monster all the way home and all night.  We both ended up crying ourselves to sleep.  I know Jymani's behaviors lashing out are a sure tail sign of an OMS relapse.  I son't know what to do anymore.  The doctors have all but turned us away.  Except his pediatrician, God Bless her heart, she really shows so much interest in Jymani's case, but there is nothing else any of the specialists will do.  I know he needs treatment, but what, and when and for how long?? Someone needs to listen, someone needs to help, I have explored every option! We have gone through 4 Neurologist, 2 Hem/Onc docs, 3 Psychiatrists........I mean what else do I have to do?  Please God, I need you now!!

 Jymani kissing Mommy Easter 2012

JYMANI FINALLY MET HIS OLDEST BROTHER DEKESHION!

WE HAVE HAD AN AMAZING MONTH! A LOT MORE UPS THAN DOWNS TO SAY THE LEAST!  THE BEST THING THAT HAPPENED THIS MONTH IS JYMANI GOT TO FINALLY MEET HIS OLDEST BROTHER DEKESHION!  HE SPENT HIS ENTIRE SPRING BREAK (PLUS SOME) WITH US  IN WI AND HERE IN MN.  JYMANI WAS SO HAPPY TO HAVE HIM HERE AND SO WAS THE REST OF THE FAMILY!  IN THE TOP PICTURE, KEKE IS GETTING JYMANI OFF THE BUS AND JYMANI IS GIVING HIM A RUN FOR HIS MONEY! LOL!! IN THE PICTURE BELOW JYMANI AND KEKE ARE SPENDING QUALITY TIME PLAYING THE PS3 TOGETHER!

JYMANI ALSO HAD A NEW APPOINTMENT WITH YET ANOTHER HEM/ONC DOCTOR, WHO HAS INFORMED US THAT THERE JUST MAY NOT BE ANYTHING ELSE THEY CAN DO AS FAR AS JYMANI'S OMS GOES.  WE MAY HAVE FINALLY HIT THE WALL, WHERE WE HAVE ALREADY TRIED ALL THERE IS KNOWN.  OF COURSE I KNEW THERE WAS A POSSIBILITY I WOULD GET THIS NEWS......I GUESS I REALLY JUST NEVER EXPECTED THE DAY WOULD COME.  THERE ARE STILL CONFERENCES BEING HELD AND I WAS TOLD THAT AS SOON AS THERE IS ANYTHING NEW TO TRY SHE WILL CALL ME RIGHT AWAY.  JYMANI ALSO HAD A SEIZURE ON MARCH 24TH WHILE PLAYING BASKETBALL OUTSIDE WITH HIS BROTHER........SO SAD.  HE HAD TO COME RIGHT IN AND HE ENDED UP SLEEPING THE REST OF THE NIGHT AWAY. MY POOR BABY..............

Jymani wants to be a Fire Fighter when he grows up.........

For the 1st time ever, Jymani told me what he wants to be when he grows up.  I never asked, he just randomly said to me, "Mommy, I wanna be a firefighter when I grow up."  Seriously, a moment I will never forget.  Five and a half years ago Jymani lost his ability to walk, talk, sit, stand, crawl and eat.  The progress was slow and the battle excruciating, but he eventually regained these abilities.  Doctors couldn't promise me he would ever lead a "normal" life.  The brain damage was irreversible.  About 2 years ago Jymani started talking again in 2-3 word sentences, thanks to a lot of speech therapy.  A year ago he was up to 3-4 word sentences.  And now today, to tell me what he wants to be when he grows up.......man my heart is smiling!!

Jymani's 1st Laker Game 1/29/2012

Jymani had a great time at the Laker/Timberwolves game.  Daddy is turning him into a Lakers fan!! LOL