Medication changes.....

Jymani has been taking "Methylin" (Ridilyn) for his behaviors, but it is short acting and the rebound period has posed as more of a problem than without the medication.  Yesterday we met with his pediatrician again and we have switched to the patch, which releases a small dose over a period of 9 hours.  Today is our first day using the patch and I hope we find that it is effective.  We started at 10mg, which is significantly less than he was receiving in the pill form. (He was at 20 mg 3x/day).  Jymani will also see his Neurologist again to determine weaning off the Topamax.  Jymani also will see a new Oncologist/Hemotologist to determine continued treatment for his OMS.  It is very possible that the behaviors are due to the OMS and not ADHD or both.  We shall soon find out!  Please continue to keep Jymani in your prayers as he continues his battle with OMS & Epilepsy. Thank You!!

Jymani helped make his first SNOWMAN!!!!!!!!!

Today was the first snow day of the winter season! Winter is officially here and what better way to kick it off than by building an amazing snowman?!?!!?!?! Jymani had a blast!! (......and so did the rest of us!!!)

Jymani lost his 2nd tOOth!!!!

Here is Jymani with his BIG brother Tajai and friend James!!! Jymani lost his second tooth on THURSDAY, NOV.11th!!! 

Jymani's 1st Field Trip!

Today Jymani went to the Apple Orchard with his class!  Daddy went along for some fun with our little Buddy and his classmates and teachers!  Jymani said he had so much fun and he wants to go again!  Jymani came home with pumpkins and apples!  He was able to feed the animals and go on a hayride!  Daddy said that Jymani was really well behaved! I am so proud of him and I want to send a special thanks to Ms. Monroe and Mrs Valdez for taking such good care of my baby boy while he is at school!!!

Buddie & Buddy

Our neighbor Buddie loved to come over and say hello to our "Buddy" Jymani.  He thought it was so cool that Jymani's nickname was the same as his real name!  Buddie past away September 24 and he will greatly be missed!  So Buddie this post is for you! This is Buddie taking "Buddy" on a little ride.............

Jymani started kindergarten on September 14, 2010

Jymani had a great first day of school!  There were some bumps in the road, but that is to be expected!  Look at his warm welcoming when he got off the bus after his first day!

Jymani got a hat to match his shirt!!

This week we planned on taking Jymani to the fair...but unfortunately he had 2 seizures in one week and we didn't want to risk it.  (We almost made it to the 3 month mark of being seizure free!  I really was beginning to think that maybe we finally had them under control.)  So instead we picked him up some fun things from the fair.  We had a hat made especially for him to match the shirt we had made for him last year!  And of course we picked him up a huge blow up spider man!  He thinks that is really cool!  Today we met the social worker from his school and they are very excited about Jymani starting kindergarten next week!! (As are we!!)  Jymani finally received his cooling vest and now we will see how well it works at keeping him cool to avoid the heat induced seizures...let's keep our fingers crossed!

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Jymani fell asleep watching Phineas & Ferb...lol!!!

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biG sIsteR jYaCiA lOves yOu!!!!

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JyMaNi LoSt HiS 1St tOOth!!!!!

My little "Buudy" is growing up so fast!  Today he lost his very first tooth!  He is talking with a little lisp now and he keeps sticking his tongue where the tooth used to be!  It is so cute!  Today was a beautiful day and I took Jymani and Jyacia to Como Town to ride the rides and play on the slides........All was well until it was time to go!  Needless to say, the tooth "fell out" in the middle of his temper tantrum!!!!

{7/23/10-7/25/10} ...a small family Vacation.

This weekend we went camping (in a cabin) in Tomahawk WI.  Jymani was able to play in the lake and he had so much fun!  He was a little fish and we got some great pictures of the fun he was having!!

He loved splashing the water and watching it come back up at him!!

MiNoCqUa, WiScOnSiN {7/24/10}

We decided to have this Old Time portrait done of the kids while visiting the shops in Minocqua, WI.  The kids had a blast dressing up and posing for the pictures!!!

Jymani's Special Gift!

Jymani received an autographed picture of Brett Favre!!  He was so excited! Thank you to Susan Walker and the Hope Foundation for making that possible!  Everyone knows how much Jymani loves Brett Favre! We are going to have it professionally framed for him!

{July 4, 2o1o} iNdePeNdeNce dAy!

This year we traveled to WI to spend the 4th with family!  We had a huge BBQ and Jymani was able to laugh and play with all his siblings in "his" pool at Grandma & Grandpa's House.  He was like a fish and spent almost the whole weekend in the pool!  He even got a sun tan!!!  It was a great feeling to see him playing outside and really fitting in with the other kids!  We are working so hard on obtaining a cooling vest so Jymani can play outside on a regular basis and not be stuck in the A/C all summer.

 This is the first time Jymani has ever been in the pool without hanging on to or being held by someone!  He swam around in his little tube and was being such a very big boy!  There was nothing separating him from having the time of his life this weekend!  He just swam to his little heart's content!!

TO INFINITY AND BEYOND!!!!

JYMANI HAS A NEW LOVE...IT IS TOY STORY!!!  HIS DADDY TOOK HIM AND HIS SIBLINGS TO SEE PART 3 ON TUESDAY THIS WEEK!  HE SAID HE LOVED IT...AND WHEN HE LEFT THE MOVIE THEATER HE THREW UP THE DEUCES AND YELLED. "PEACE, I'M OUT!"  GOTTA LOVE THIS KID....WITH EVERYTHING HE HAS BEEN THROUGH HE HAS SO MUCH CHARACTER!!!

FINALLY CHUCK E CHEESE!!!!

JYMANI HAS BEEN WANTING TO GO TO CHUCK E CHEESE SINCE THE FALL AND WITH THE FLU SEASON THAT JUST WAS NOT A POSSIBILITY!   SO WE GOT THE OKAY FROM HIS PEDIATRICIAN THIS PAST MONTH THAT JYMANI IS NO LONGER IMMUNE SUPPRESSED...HE WAS EVEN ABLE TO HAVE HIS SHOTS FOR KINDERGARTEN!!!  SO TO CHUCK E CHEESE WE WENT... JUNE 9, 2010!  IT WAS QUITE AN ADVENTURE AS JYMANI DIDN'T UNDERSTAND THAT HE COULD NOT RUN AWAY FROM US.  BUT HE WAS ABLE TO EXPERIENCE A LITTLE TIME THERE AND THERE HAVE FUN PLAYING ALL THE GAMES...JUST BEING ABLE TO BE A LITTLE BOY AGAIN!!!  WITH HIS TICKETS HE BOUGHT A CHUCK E CHEESE SOCCER BALL.......HE WAS SO HAPPY!!!

2 seizures in May......

Jymani had two very typical seizures in May.  He is being followed by a new Neurologist at Gillette in St Paul, MN.  We are hoping we can switch medication as we just found out one of his seizure medications lowers the ability to sweat.....thus causing Jymani to overheat...which generally brings on a seizure. Unfortunately, his Neurologist is more concerned about treating Jymani's behaviors and we will work on changing seizure meds once we have the outbursts and inability to control himself better under control.  In the mean time, I have started a Seizure binder to start tracking Jymani's seizures and hopefully pinpointing why he keeps having them and what (if anything) I can do to stop them from coming on!!

Projects @ School!!

Jymani brought his first project home from school and he was so proud of what he had made.  His VERY OWN binoculars!!!!!  I am so proud of him!!

{ApRil 27 2o1o} Buddy Goes to School!!

Jymani is now attending Early Childhood at Rondo in St Paul.  His teachers are great with him and he seems to really enjoy going!  Unfortunately, this will be short lived unless we can get a cooling vest for him as the weather plays a factor in weather he attends school or not, because of his heat intolerance/seizures.

{mAy 2Nd 2o1o} A beautiful Spring day at the MN Zoo!!

We were able to take Jymani on a family trip to the Zoo!  Thank you to our daughter Jyacia who received enough free tickets from her school for all of us to go!!  It was an absolutely gorgeous day and the weather was perfect for our little man to enjoy the entire day!!  He loved all the animals (especially the monkeys)!!!  He got some great exercise while we were there and he was not afraid of any of the animals!!  It was an amazing day!!  I am so thankful.......

Forever our Hero!!

THESE HORRIBLE SEIZURES.......

Jymani started school this week and he was only able to attend one day because he woke up this morning with a cough and runny nose.  We aren't sure of it is allergies, but we are not about to take the risk.  By afternoon he appeared to be feeling fine, all besides a draining nose.  Tonight Jymani and I decided to go outside and play football and he was really having a great time.  After awhile we sat down in the garage and had a snicker ice cream bar, so he could cool down and relax a bit before daddy started tossing the ball with him.  The kids came out to join us and moments later I heard Mikayla saying, "Buddy are you okay?"  Right then we knew something was wrong...Cortez ran to his side and I turned him towards me.  He was blue in the lips and purple in the face.  We tried talking him through it, we always feel like this helps in some way.  He tried talking to us but his words were jumbled.  He took a breath and then he started going into another one!!  Cortez grabbed him and held him and asked him to breath...Mikayla ran for the diastat.  He then starting coming out of this one.....seconds later he was right into another one!!  This all happened in a matter of about a minute and a half.  I was about to call 911 and then he came out of it with a deep breath and signs of great exhaustion.  He said, "Mommy, I'm tired"  He is now sleeping in my bed...It has been an hour since the seizure.  This is the postictal period.  He could sleep for hours........PLEASE LORD....END THESE SEIZURES....

JYMANI LOVES THE OUTDOORS!!

Now that the weather is nice Jymani has been able to play outside and he is loving every minute of it!  It is a wonderful feeling to watch him  play basketball and other outdoor activities with his siblings!  When the weather gets warmer Jymani is not able to play outside because he is heat intolerant.  His body is unable to produce sweat, which is the way our bodies cool themselves.  His body overheats almost instantly in hot weather and this generally induces a seizure!  Needless to say, much of his summer is spent inside where there is air conditioning!  So we are enjoying every bit of Spring possible!

March 31st - April 5th

We started Jymani on the Clonidine patch this week.  His Behavioral Pediatrician thought it might help with Jymani's behaviors during the day.  We noticed NO signs of this helping whatsoever and decided to discontinue its use.  The patch caused Jymani to have quite a rash on his skin where it was placed and it irritated him to no end when he had it on.  We tried no Clonidine at all after removing the patch, but Jymani was not falling to asleep before midnight while off it entirely.  So we have since reintroduced the pill and we are currently just giving him a half a tab.  So far so good, he is falling asleep by nine and sleeping all night!!

Coloring Easter Eggs 2010

We are so grateful that Jymani was able to decorate Easter Eggs with us this year!  This is the first time in his 5 years of life that he has been able to do this!  And he did a pretty good job too!  (Aside from the fact that he thought he should give the food coloring a "taste test"!  lol)

 

...yet another seizure!

On our way home from WI Jymani had a seizure.  We were just leaving the Dells and he was wearing my sunglasses because he cannot stand the sun in his eyes.  Luckily, Cortez always looks back at him to make sure he is okay and noticed that his lips were turning purple.  It lasted about 30 seconds and he was out of it, but it still scares us just as much every time.  He slept the rest of the ride home, which is very typical when he has a seizure.  Every time he has one we pray that it is the last one.  It has been so long since he had one last.  So again, I will drop to my knees as pray!

Spending time with Grampa!!

Jymani had a great time visiting family this weekend!  He played and colored and showed everyone what a big boy he is!

Results from Neuro-Pysch Eval

We have been told that Jymani's mind is that of a 2 or 3 year old.  He is significantly delayed...which we knew.  Speech is his biggest delay and they are pushing for more speech therapy for him.  He is talking in bigger sentences and we have noticed that things are sounding clearer!  He recognizes his name on paper and we have been working on shapes and colors with him.  The doctor's tell us Jymani is a "Complex Kiddo"  ....I was thinking...okay now tell us something we don't know!  ;)  Jymani is such a strong boy...I believe he is learning and making great strides.  He works well with his teachers and he makes a new project every week that we hang up in the kitchen wall for him!  He loves looking at all his fancy artwork!  I am so proud of you Jymani......xoxo

SnOwY dAzE!!!!!!

Jymani has been having a great time in all the snow we have been getting over the last few weeks!  He loves playing outside and he loves jumping in the snow! 

Jymani loves his Uncle "V"

Every time Jymani gets a phone call from his Uncle Vincent he is filled with joy!  Yesterday we asked him who he loved and after saying "Mommy & Daddy", he said, "And Uncle V"  He is so special to Jymani and I know he is just as special to you Vincent!!  So this is a special shout out to his #1 Uncle........we miss you V!

SECOND NEURO-PSYCH EVAL

TODAY JYMANI COMPLETED THE FIRST PART OF HIS SECOND NEURO-PSYCH EVAL.  HE SEEMED TO DO MUCH BETTER THAN THE FIRST TIME AND THE DOCTOR WORKING WITH HIM HAD MUCH MORE PATIENCE THAN THE FIRST TIME WE TOOK HIM  TO HAVE THIS DONE WHEN HE WAS THREE.  WE GO BACK ON THURSDAY TO COMPLETE THE EVALUATION AND HOPEFULLY WE WILL GET POSITIVE FEEDBACK AND ADVICE ON WHICH DIRECTION TO GO!

JANUARY 11 2010

JYMANI TURNED 5 TODAY!!  WE ARE SO BLESSED TO HAVE HIM AND HE IS SO COURAGEOUS!  ALL THE OBSTACLES HE HAS OVERCOME AND CONTINUES TO BATTLE...HE IS TRULY A SOLDIER!  THIS IS THE FIRST YEAR JYMANI UNDERSTOOD THAT IT WAS HIS BIRTHDAY AND THAT HE WAS ANOTHER YEAR OLDER!  HE WILL EVEN HOLD UP 5 FINGERS AND SAY "I'M FIVE".  I AM OVERCOME WITH JOY!! MY BABY IS BEATING THE ODDS!!  OUR PRAYERS ARE BEING ANSWERED!