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!!