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

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.........

THE BOYS!!!!!!!!

JYMANI LOVES HIS FAMILY!!!!

My future Packer players!

Valley Scare 2009

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

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"!

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....

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!!

Appointment Day

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!

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

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......

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!

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!

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!)

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!

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!

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!!

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!!

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!!!

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!!!!!

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!

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!!