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.........