Back from Springfield IL with GOOD NEWS!!!!

Hello Everyone
I have to apologize that it has taken me so long to update on Makhi's visit to Springfield but I swear things are just soooo busy around here. Between doctor visits which are like everyday and the the girls with all there activities I fine it hard to have the time to do anything.

Now off the the good news.... Dr Pranzatelli thoughts are that Makhi is doing great and has responded wonderful to the chemotherapy!!! He also feels that Makhi appears to be in neurological remission. Praise the LORD..

Now off to the scary part... Makhi is coming down off ACTH and there is the possible of a OMS relapse on our way down off the ACTH.... I am choosing to believe that this will NOT happen. He has come so far and I hate to see him any set backs. So we need alot of prayers right now that Makhi can continue to make progress WITHOUT ANY RELAPSES... If all goes well Makhi will be off ACTH by his 5th Birthday. What a wonderful gift that would be.

Dr Pranzatelli would like to continue Makhi on IVIG monthly and the taper of ACTH by 0.02 monthly.

Makhi had a IEP meeting at school yesterday and his teacher think that he is doing wonderful. It is nice to look at all Makhi progress on paper although I see it everyday. His speech is coming along nicely. About 80% of it is understood by an adult. He has all the words that a child his age should have but he still continues to struggle with articulation. Oh well it will come in time. His behavior is better also and he is requiring less cues as to what he is suppose to be doing next. He is sharing nicely with friends he knows his ABC's he knows all his colors and he is about to count to 15. He makes me so proud everyday.

I would love to share a story with everyone! When Makhi and I arrived in Springfield we were told that there was a 18 year old girl who was coming to see Dr Pranzatelli.
After meeting her I felt very sad. It was a rude awaking to just how far OMS treatment has come.See I guess 18 years ago they did not have the treatment that they do today. This little girl was never treated for her OMS until the age of 16 and there was soo much brain damage done. I will never forget this little girl. My heart goes out to her mother and her. So with that said I just find myself hoping for a cure but at the same time I am VERY thankful that we have the treatment that we do today. My worst nightmare is what that little girls mother has had to live threw. I have gained alot of strength from this mother.

Thank you for checking in on Makhi and I will update again soon
Tara