JUNE 2011

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........

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

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!!

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

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!!!

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!!

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!!

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.....

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!!