JYMANI'S STORY

Sorry for the time that has passed..........

2011-12-21T05:33:00.000-08:00

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

2011-10-19T12:25:00.000-07:00

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

2011-10-19T12:06:00.000-07:00

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

2011-10-19T11:57:00.000-07:00

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

2011-09-26T07:43:00.000-07:00

OFF HE GOES FOR ANOTHER BUSY DAY IN CLASS!

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

2011-09-26T07:35:00.000-07:00

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

2011-09-26T07:28:00.000-07:00

JYMANI FINALLY MEETS HIS GRANDMA ALANIZ!

KISSES FOR GRANDMA!

JULY 2011

2011-09-26T07:24:00.000-07:00

JYMANI'S FIRST TRIP TO PHALEN BEACH!

JYMANI'S 1ST TRIP TO HIGHLAND PARK POOL!

FUN SUMMER!!

2011-09-26T07:18:00.000-07:00

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

2011-09-26T07:15:00.000-07:00

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........

2011-04-28T18:27:00.000-07:00

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

2011-04-24T20:38:00.000-07:00

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!!

2011-04-24T20:20:00.000-07:00

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................. :(

2011-03-06T18:46:00.000-08:00

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!!!

2011-02-15T21:22:00.000-08:00

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!!

2011-01-17T13:05:00.000-08:00

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!!

2011-01-17T13:00:00.000-08:00

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!

Medication changes.....

2010-12-10T07:33:00.000-08:00

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!!!!!!!!!

2010-11-13T17:34:00.000-08:00

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!!!!

2010-11-13T17:27:00.000-08:00

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!

2010-10-15T21:03:00.000-07:00

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

2010-10-01T09:34:00.000-07:00

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

2010-10-01T09:28:00.000-07:00

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!!

2010-09-08T20:24:00.000-07:00

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!

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

2010-09-08T20:19:00.000-07:00

biG sIsteR jYaCiA lOves yOu!!!!

2010-09-08T20:17:00.000-07:00

JyMaNi LoSt HiS 1St tOOth!!!!!

2010-08-16T18:39:00.000-07:00

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.

2010-07-26T14:15:00.000-07:00

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!

2010-07-21T07:38:00.000-07:00

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!

2010-07-21T07:34:00.000-07:00

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!!!!

2010-06-24T08:00:00.000-07:00

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!!!!

2010-06-24T07:55:00.000-07:00

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......

2010-06-02T19:08:00.000-07:00

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!!

2010-06-02T18:58:00.000-07:00

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!!

2010-06-02T18:54:00.000-07:00

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!!

2010-06-02T18:30:00.000-07:00

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!!

2010-05-10T14:20:00.000-07:00

THESE HORRIBLE SEIZURES.......

2010-04-29T16:24:00.000-07:00

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!!

2010-04-23T14:25:00.000-07:00

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

2010-04-23T14:19:00.000-07:00

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

2010-04-23T14:08:00.000-07:00

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!

2010-03-08T19:11:00.000-08:00

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!!

2010-03-08T19:05:00.000-08:00

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

2010-02-09T19:36:00.000-08:00

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!!!!!!

2010-02-09T18:15:00.000-08:00

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"

2010-01-28T18:28:00.000-08:00

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

2010-01-12T17:03:00.000-08:00

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

2010-01-12T16:58:00.000-08:00

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!

CHRISTMAS 2009

2010-01-12T16:52:00.000-08:00

WE HAD AN AWESOME HOLIDAY AND JYMANI WAS SUCH A LITTLE HAM! HE GOT IT THIS YEAR....HE UNDERSTOOD THE MAGIC OF CHRISTMAS AND HOW GREAT IT IS TO BE WITH FAMILY!

GO PACKERS!

2010-01-12T16:50:00.000-08:00

Jymani has begun "Home Based" learning through Early Childhood!!

2009-11-24T07:03:00.000-08:00

IT TOOK US SOME TIME TO FINALLY GET JYMANI INTO THE SCHOOL SYSTEM WITH EARLY CHILDHOOD, BUT THINGS ARE MOVING FORWARD AND HE NOW HAS A TEACHER COMING TO OUR HOME ONCE A WEEK ALONG WITH PT, OT AND SPEECH VISITING REGULARLY! I AM SO EXCITED FOR HIM, BECAUSE WE WERE SO WORRIED ABOUT HIM NOT BEING ABLE TO ATTEND SCHOOL DURING THE FLU SEASON SINCE HE CANNOT BE VACCINATED UNTIL NEXT FLU SEASON. THIS WILL HELP JYMANI PROGRESS AND NOT FALL TOO MUCH FURTHER BEHIND!

Visiting family in Wisconsin.........

2009-10-21T12:27:00.000-07:00

THE BOYS!!!!!!!!

2009-10-21T12:25:00.000-07:00

JYMANI LOVES HIS FAMILY!!!!

My future Packer players!

2009-10-21T12:22:00.001-07:00

Valley Scare 2009

2009-10-21T12:18:00.000-07:00

Jymani had a great time at Valley Scare in Shakopee, MN. Another great gift from The Make a Wish Foundation and Give Kids the World!!!

OCTOBER 2 2009

2009-10-21T12:09:00.000-07:00

Jymani had his medi-port removed today! The surgery went very well and Jymani made quite the impression on his surgeon and nurses! He received an award and a courage bear with a medal!

Jymani doing the "Harry"!

2009-09-23T18:59:00.000-07:00

Jymani absolutely loves Hip Hop Harry. It has become yet another obsession in our home. He is so cute when he watches it and he is learning many things from it.... Including...DOING THE HARRY!!!

It's been a good summer....

2009-08-24T16:51:00.000-07:00

Although Jymani has had a few break thru seizures overall he has been doing well! We have been luck enough to have a "not so hot" summer which has helped! Today Jymani had another seizure and we recently went up to 90mgs of Topamax, due to the last seizure, so I will be calling his neurologist in the morning to see if we need to increase again. I just wish we could get the seizures under control, it seems that the OMS is in remission,yet the seizures continue to give us so much stress!!!

Appointment at St Mary's, Seizure on the way home and then a package from HIP HOP HARRY when he woke up!!

2009-08-24T16:46:00.000-07:00

Appointment Day

2009-08-13T14:15:00.000-07:00

Today Jymani had another appointment in Rochester at St Mary's Hospital with the Mayo Clinic's Psychiatry and Psychology dept. Today was Jymani's first meeting with this new doctor! We had a pretty good first meeting and Jymani tried really hard to be on his best behavior! Dr. Koplin has decided to have a trial period of decreasing the Tenex (which he takes for behavior)to a half tab for 2 weeks. If we don't notice a significant change in his behavior we may very well just discontinue the med all together as it may not be helping anyway. Next week Jymani has another Neuro/Psych Evaluation and another sleep test as well. We are hoping to find some answers and get some relief for all of us when it comes to Jymani's behaviors. On the way home Jymani had a seizure in the car and it gave us all a scare. We pulled over until the seizure subsided and I immediately put a call into Jymani's Neurologist. (Still awaiting a response.) Jymani slept the rest of the way home, which is very normal after a seizure. He might sleep for a few hours, but we will keep a very close eye on him.
On another note, Jymani has mail waiting for him when he gets up he will see that his package from Hip Hop Harry has arrived!! He will be so happy!! (It is the t-shirt and one of the DVD's he wants, he definitely deserves it today!!)
Thanks for checking in!!

Another trip to Mayo!

2009-07-09T20:32:00.000-07:00

Jymani has adjusted well to our move to MN. Today we had another appointment at the Mayo Clinic with Dr. Renaud. The results from his EEG were significant with the seizures he has the developmental delay. We took him to Pizza Hut after his appointment because he was a very good boy for his doctor. Dr. Renaud scheduled several appointments for Jymani and we finally got a prescription for diapers!! YEA!! (It's amazing the things that excite me these days!)

EEG @ Mayo Clinic

2009-07-09T20:20:00.000-07:00

Jymani went for his first appointment at the Mayo Clinic on June 2, 2009! He is now 76lbs and 3ft 7' tall. His new Neurologist's name is Dr. Renaud and she seems very interested in Jymani's case. She was somewhat surprised by some of the treatment Jymani has been recieving and she has a good "game plan" set! We are very optimistic that we will find more answers and have improved health care! On June
18th he had an EEG and what a differnce it was to simply put a cap with all the wires connected versus placing each wire one by one. Jymani still had a couple of rough moments and they had to sedate him for the sleep part of the test, but overall he did well! The Mayo Clinic is amazing and I am so happy we made this move!

OMS relapse......

2009-03-31T06:58:00.000-07:00

Jymani was admitted to Childrens Hospital in Milwaukee on Wednesday, March 25 for numerous reasons, most importantly an OMS relapse. He had been sick since Sunday and he was continuing to run a high fever and have major conjestion issues along with ataxia and seizures on a daily basis. Many scans were conducted during Jymani's stay, CT, EEG, MRI and a Bone Scan, fearing a return of a Neuroblastoma. Thankfully, the scans were all clean! Doctors say everything was too much for Jymani's system especially since he is currently going through chemotherapy. He was put on 3 weeks of antibiotics and we have to come back in 2 weeks for a follow-up. Jymani is not showing the eye movements he displayed last week and doesn't appear to be too unsteady anymore. He is "acting" more "baby like" and whining that he is sick, but he seems to get a little better as the days pass. He is still quite stuffy, but the fever has subsided. We have opted to hold off on chemotherapy until he is well as requested by his neurologist. Thank you for everyone's well wishes and visits during this time!

Another Scare!

2009-03-23T17:06:00.000-07:00

Last night Jymani could not move his left arm! We rushed him to the ER and approximately 2 hours later he was using it as if nothing had happened! We spoke to his neurologist today because he had another seizure and they think he had temporary paralysis on his left side after having a seizure that we may have missed last night. Being that Jymani has "focal" (partial) seizures, this is not uncommon, but still makes his seizures more serious. Now we have to schedule another MRI. Jymani slept for 3 hours after his seizure today and he woke up coughing & sneezing with a 103.9 temp. I took him right in to his pediatrician and Milwaukee docs faxed over blood work orders. They were unable to get ample amount of blood after 4 tries and sent us home to come back in the morning. This is why I so much hate when he sees the docs here, I wish we lived closer to Milwaukee! Everything is up in the air right now, I have no idea why he has the fever, and this is so not good now that he is currently going thru chemo.

Wedding Day for Mommy & Daddy!

2009-03-21T22:00:00.000-07:00

Jymani was part of a magical day today as his daddy and I were married! He had so much fun dancing to the music! He was a very good boy and entertained many of our family and friends! He is so loved by everybody!!

Cytoxan (AGAIN!)

2009-03-02T18:41:00.001-08:00

Today Jymani started Chemotherapy again today! It is the first infusion of three this time around. We got to Children's around 8 am and started the day off with labs. Then we made our way down to the Oncology Clinic where everyone always greets Jymani with such love! Auntie Denise and DeNaeza came to visit him! He was so happy! During the infusion, Dr. Jogal ordered Jymani to have Pentamadine, which is an antibiotic inhalant, because Jymani is allergic to Sulfa (and Bactrim is usually given as a precautionary measure during Chemo). Jymani absolutely hates it as the mask has to stay on his face and it has a horrible taste! He screamed and cried the entire time, he kept telling me he was a good boy and he wanted to be done. It just breaks my heart! So we got through it and then Jymani's breathing became very labored! His O2 dropped to 75%, he was wheezing and coughing and just could not seem to catch his breath. The nurse called Dr. Jogal and he immediately ordered a breathing treatment. Well, they ended up needing to give him three! They were contemplating having him admitted, but Dr. Jogal gave him a steroid through his IV and sent us home with an inhaler and steroids. I swear, never a dull moment with Jymani, he just loves to keep us on our toes! We have never had this type of reaction from the Pentamadine, I stood by his side the entire day and watched his O2 stat like a hawk! As if there isn't already enough to worry about, but we got through the day and left the hospital around 6pm. Jymani's voice is still raspy and he sounds a little gurgly. He is sleeping now, I bought him a bed for my room so I can keep a close eye on him, especially during these next 3 months of Chemo!

Good News!

2009-02-24T17:51:00.001-08:00

Today I received an email from Governor Doyle's office with the Proclamation that he signed declaring February 28th "Rare Disease Day"! I was so excited! Hopefully we will raise enough awareness in the years to come, so other children won't have to suffer as long and hard as Jymani and the other OMS children in the world!

Rare Disease Day!

2009-02-19T20:34:00.000-08:00

Wisconsin has not yet declared February 28th "Rare Disease Day", so today I emailed our governor and this is what I wrote:
Hi my name is Lisa Evans, I have spent countless days since September 16 2006 searching for answers to my son's rare disease called Opsoclonus Myoclonus Syndrome (OMS). I need you to understand that my son is my hero, the things he has had to endure for more than half of his life now is truly heartbreaking. Tonight, I became aware of "Rare Disease Day" which is recognized on Feb. 28th in about 19 states so far. Unfortunately, WI has not yet declared Feb 28th as Rare Disease Day. I feel that it is very important to be able to spread the word on rare diseases as this would truly help children be correctly diagnosed sooner making prognosis possibly more positive. My son Jymani went misdiagnosed for 3 months and by the time he was diagnosed correctly, he was in the severe stages of OMS, making treatments less effective and brain damage more likely to be irreversible. I know my email alone may not make a difference, but I am hoping I am not the only one contacting you in regards to Rare Disease Day. I am not a Rare Disease Partner, I am just a mother devoted to raising awareness and hopefully finding a cure so another child will not have to suffer like my son has. Thank you for your time.

....another day of twists and turns!!

2009-02-09T17:40:00.000-08:00

Well,today we went to the hospital expecting to start our third round of chemotherapy! We checked into the clinic as scheduled and had all necessary lab work done. Thank God the nurses had not yet accessed Jymani's port, because the Chemo was canceled due to the fact that Jymani had another bed seizure last night! I kind of figured that would happen as I called the hospital late last night to speak to the Oncologist on call and the Neurologist on call. Its so hard when there are so many doctors with their hands in on his care, I just don't know who to talk to! Nonetheless, the Oncologist on call told me to come in and the Neurologist told me to call his actual Neurologist in the morning. Well, that was little help because we were do to be at the hospital at 8 AM and we have about an hour and a half drive! So we went knowing that the docs would want to see him anyway, because his seizures have been so uncontrolled! Dr. Joseph ordered another EEG instead and also raised his Topamax (again). So we checked into Neurology by 9:15 and were done by noon. So it wasn't too hard of a day for Jymani, although he HATES, when they glue all the wires to his head. He just cried and said, "No mommy, I'm a good boy!" Talk about breaking my heart!! I am anxiously waiting for the results.........

Jymani's 4 years old now!!

2009-01-21T18:17:00.001-08:00

As most of you know Jymani celebrated his birthday in Florida this year, thanks to the Make-A-Wish Foundation, he was able to eat breakfast with Mickey and friends on his actual birthday! And to make things extra special for him we had a birthday party for him the Saturday after we got home so he could share his special experience with friends and family! Unfortunately, after the party guests left Jymani had another seizure and now we have gone up again on the Topamax (as well as continuing the Trileptal). Jymani's neurologist is also ordering yet another EEG that will be done during another Sleep Test as Jymani is not sleeping well again and has been crying & whining more the last few months. If you notice in these pictures his cheeks are very flush and were warm to the touch, that was an indicator to me that he could possible have a seizure as when he gets too hot he seems to have seizures. Approx. 1 hour after these picture were taken he seized for about 1 minute.

Back from Florida!!!

2009-01-19T13:10:00.000-08:00

HI EVERYONE!! WE ARE BACK AND WE HAD AN AMAZING TIME!! YES, JYMANI COULD HAVE BEHAVED BETTER, BUT NOW THAT IT IS OVER I MUST SAY YOU LEARN TO TAKE THE BAD WITH THE GOOD! I AM GLAD WE ARE HOME THOUGH AND THANKFUL FOR THE WONDERFUL EXPERIENCE!! WE HAD BREAKFAST WITH THE CHARACTERS ON JYMANI'S BIRTHDAY AND THAT WAS SO MUCH FUN! JYMANI TOLD LILO "YOU SO PRETTY" AND NOW HE TELLS US SHE IS HIS GIRLFRIEND!

HAIRCUT!!!!!

2009-01-07T17:16:00.000-08:00

Jymani was such a naughty boy at the barbershop today! His barber had to get out her "paddle"! This isn't the best pic but hey he was so tired! He looks so different now that his curls are gone! Tomorrow is a big day, his Neurologist ordered an MRI because he has been having so many seizures and we have to go thru day surgery because he cannot be sedated. I hope we get some good news and then Friday we leave for Disney!! Wow, what a busy week we've had, I swear it's never ending!

2009-01-01T15:45:00.000-08:00

HAPPY NEW YEAR EVERYONE!!!!
Well the good news is we leave for Florida in 9 days!!! The bad news is when we get back we start chemo again! :( But while we are in Florida we will not be thinking about the stresses back home. Jymani's wish granters came over the day after Christmas and had a very special "Wish Day Party" for Jymani! It was very exciting for all of us and Jymani was very lucky to have such special wish granters, so a big THANK YOU to the Make-A-Wish Foundation and lots of HUGS and special thanks to Dick & Alice for making Jymani's wish come true!!

Merry Christmas!!!

2008-12-25T10:17:00.000-08:00

We have had an amazing holiday!! Jymani and his siblings have had so much fun with all of there new things, but our best gift today and everyday is the gift of life & love. This family has endured so many hardships, but we continue on and thank God for our strength!! Merry Christmas to everyone who stops in to check in on Jymani and thank you for keeping him in your hearts............

Jymani loves his sister Jyacia............

2008-12-10T19:10:00.000-08:00

************AND SHE LOVES HIM TO PIECES****************

2008-12-10T19:01:00.000-08:00

Today Jymani had the necessary bloodwork done. We are waiting to hear what his neurologist wants to do next. We did go up on the morning dose of trileptal though. So let's hope that makes a difference!! No seizures today! HOORAY!!!!

Bad day........

2008-12-09T17:59:00.000-08:00

Jymani has been having seizures today! We are unsure why we have not been able to control his seizures, but we contacted his neurologist and she wants us to have a blood draw tomorrow to see what his Trileptal levels are at. Then he will go up to 750mg of Trileptal in the morning and continue at 750mg at night. Dr. Joseph is considering adding Topamax back to Jymani's medication regimen. (He was recently taken off Topamax as that was not controlling his seizures either.) She feels the Trileptal may not be enough to control his seizures. Today was the first day that I was not right next to him for an entire seizure. I noticed it at the very end, I heard him coughing and by the time I got up to him his lips were coming back to color and he became postictal. My heart ached for him as I know how scared he is when he is seizing. I have never missed a seizure! God, I almost feel guilty!! Then about an hour later, he seized again!! He told me he wanted to lay down afterward, but before he went to sleep he said, "I'm sorry dad, I'm tired, I wanna lay down." His dad told him he didn't do anything wrong and that we were just worried about him. My poor baby, he slept for almost an hour after the second seizure. He did not seize again tonight, thank god!! I hope we can get this under control, it's so scary, as if he doesn't have enough to deal with!

December 8th 2008

2008-12-09T17:36:00.000-08:00

Jymani received a package from Santa today!!! What a surprise!! He was so excited and he even received a picture of Santa Claus himself!! Jymani is so thankful!!

...waiting for Santa!!

2008-12-07T09:28:00.001-08:00

Christmas is right around the corner!! Jymani is looking forward to opening his presents and spending the day at home with his siblings. Shortly, after Christmas we will be leaving for Florida, as Jymani had his wish granted through the Make-A-Wish Foundation!! It will be double fun for him as we will be there during his birthday!! Today we took some pictures in front of the Christmas tree. Jymani says "Boo-Boo Chicken!" during each picture, it's adorable!! We aren't looking forward to starting Chemotherapy this month, but we got to do what we got to do!! We are actually waiting to hear from Jymani's doctors to see if we can start the infusions after we get back from Florida. So we are keeping our fingers crossed!! Thanks for checking in!!

......alot of time has passed!!!

2008-11-29T19:22:00.000-08:00

Wow!! It's been over a year! Well, where do I begin? Jymani is now almost 4 years old and my how he has grown! He has come such a long way and overcome many obstacles!! Since Jymani was diagnosed with OMS in 12/06 our lives have changed drastically!! We take several trips to the hospital and Jymani has many doctors overseeing his care. Not only is he fighting OMS, he has a seizure disorder, sleep apena and he was most recently diagnosed with ODD. I don't know why and if I question that on a daily basis I think I would go insane. All I do know is that Jymani is a trooper. I couldn't imagine having to go through all the tests, infusions, the poking and the prying that is done on his little body on a regular basis. I know that if I could..... I most definitely would take his place. I wish I could take his pain away....Lord knows I do!!!

2008-08-08T10:26:00.000-07:00

Jymani was 20 months when we was diagnosed with Opsoclonus-Myoclonus Syndrome. He was admitted to Children's hospital on December 7, 2006 and had several surgeries before his second birthday.

It's amazing how much time flies when you are so preoccupied with something!! I look at this picture now and I am completely amazed!! This picture was posted almost 2 years from the date that it was taken!! It is actually from December 2006!! I can't believe it! I wish I would have known about this site then, because I really would have added more pictures and updates when when this horrible nightmare started! I am going to try my hardest to keep this updated form here on out and then my friends and family can follow his story!!! Thanks to everyone who takes time out from their day to check in on him!!