Back From Disney World

Hello Everyone! We have returned from Disney World last Tuesday and we had a WONDERFUL time!!! Thanks to Make A Wish and Give The Kids The World we had the vacation of a lifetime. Also Makhi got to celebrated his 4Th Birthday at Disney World!!! He got to spend his 4Th birthday at Disney World visiting all his favorite characters Mickey Minnie Tigger and Pooh. What a wonderful day that was and it was a Birthday none of us will ever forget. The girls really enjoyed there self they got to visit with Cinderella, Bella & Tinker Bell. We also got to go to Universal Studio's, Sea World, Hollywood Studios, Animal Kingdom. Let's just say it was something I denfinality could not have afforded to give to my 3 kids. We really are so thankful to Make A Wish and Give The Kids The World for the experience of a lifetime.

We returned home on Tuesday and Wensday Makhi returned to Hershey Medical Center for his 2nd round of Cytoxan(chemo). It went ok Makhi is still having a hard time sitting still that long. The older he gets the harder the time I have keeping him enterainted for the 8 hour infusions. We go back to the Med Center tomorrow for his monthly round of IVIG! That is also another 8 hour infusion that is another long day for him.

We are still really struggling with Makhi hyperactivity, and irritability levels. His behavior is still really off the charts. He is just unable to sit still for more than 2 mins without having to get up and run around. There is still alot of crying and whining which seems to be non stop! Before leaving for Disney I had talk to Makhi local Neurologist who thought maybe we should start him on Concerta to calm him down. I have chosen NOT to go ahead with that. I know for a fact allot of this behavior is steriod induced so I had ask could be come down off the steroids a little and I was advised they don't normally do that while treating a relapse of OMS. Since Makhi's 1st round of Cytoxan I have seen all of his OMS tremors stop.It's just his behavior that has been bad since we went from .17 (ACTH) back up to .25(ACTH) so we have taken him back down to .20(ACTH) and we will see how he is in 2 weeks.If his tremors are still under control we will try to get him back down to .17

I realize that Makhi will more than likely will have ADHD because most OMS children end up having it but I don't want to treat him for that until we can get him off steroids and know him true baseline.

On a good note Makhi speech is really coming along!!! He is talking so well. He was tested and he has as many words in his vocabulary as a ""normal" child his age it is just the articulation that he has problems with. He is talking in complete and full sentence.
He is also learning to count and can count the hole way to 15!!!

He also has found a new love BOOKS. Makhi always like to be read to but now he loves it. He love to have me and his teachers read to him. That is about the only time I can get him to sit still LOL.....

Well I have a long day tomorrow with Makhi so I will go for now.
I will update you soon
God Bless
Tara