Monday, April 30, 2012
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!
Wednesday, April 18, 2012
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
Thursday, March 29, 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 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..............
Sunday, February 26, 2012
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
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!!
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