Nov 9.2011 APPOINTMENT AT JOHNS HOPKINS!!!!

AFTER CALLING WEEK AFTER WEEK, WELL MORE LIKE EVERY DAY, WE FINALLY HAD AN APPOINTMENT ON Nov. 9th.2011. FINALLY... FINALLY.... THE SQUEAKY WHEEL ACTUALLY WORKS!!!! NO KIDDING!!!!

I knew we were moving to the east coast and was in fear of traveling to a new setting where we would need to start from scratch especially now that I was starting to trust Dr.Joshi with Aliyah.

We FAXED EVERYTHING... LITERALLY EVERYTHING.. FROM ALL FOUR HOSPITAL THAT Aliyah HAS BEEN HOSPITALIZED IN AND HER PEDIATRIC CLINIC.

WE GAVE THEM EVERYTHING.... ALL of her video-EEGs, MRI, blood work results, IQ testing, reports from her occupational - physical - speech therapists. Anything that had to do with my baby I gave it to them.

The social worker from Johns Hopkins gave us flight vouchers and a free place to stay called "Believe in Tomorrow's Children's House" (Very similar to the Ronald McDonald House).

I cannot tell you the high hopes I had before coming to Maryland. Hoping Dr.Kossoff would tell us Aliyah's condition is "treatable" meaning manageable......... well more like fixable. Unfortunately that was not the case- not at all.

Basically he looked over Aliyah's history and told us we are doing everything we should be doing and is happy with the work Dr.Joshi is doing. And told us we were very fortunate with the work Dr.Alsayouth did on my baby when she was first diagnosed. He said we were fortunate we fought aggressively with the medications from the beginning.

He told us to go up on the Keto-diet to the 4 to 1 ratio. He told us NOT to do Nitrazapam and mentioned how most likely Vigabratin will not do much for her because of her age being 2. He told us we could go back to topomax or try depakote. That was basically our conversation. :( Nothing more we could do.

He let us know he has patients that are seizure free but have not progressed cognitively. I told him I want to move to Maryland and not to New Jersey because of his expertise. But he let me know there isn't much for them to do for Aliyah... again and again. I do believe Aliyah will be in great hands with Dr.Kossoff! As Aliyah was in GREAT CARE under Dr.Joshi supervision and guidance.

I didn't care we were still going to move. Just in case Aliyah's condition would be a life long one. I needed Aliyah to be seen by a highly recognized institution. Everyone is always telling me you can't go wrong with John's Hopkins. :)

I AM GOING TO DO THIS MOVE FOR MY DAUGHTER!!!!! WHO KNOWS WHAT HER INFANTILE SPASMS MAY LEAD TO!!!!!

I am not going to deny. I was devastated after the appointment . I felt that some well most of my HOPE was taken from me. But I was going to keep on being optimistic. Hopefully Aliyah's IS miraculously goes away... I don't know at that point I was leading more towards God and less towards her neurologists.

I really wanted this appt. so it could have been an easier transition from Dr.Joshi to Dr.Kossoff. Now we know who he is and he knows who we are once we established residency in Maryland.

Below is Aliyah's future neurologist Dr.Eric Kossoff once we move to Marlyland.