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.

NOV. 4, 2011 AS A MOM I FEEL USELESS....

I am so close to finishing my degree in Microbiology, and plan on moving from Iowa to Maryland so that Aliyah can be near Johns Hopkins and be closer to my family because we are in need of emotional support through this rough time. My mother- I feel is the one person who feels my pain, though my husband shows it in different ways. I need someone to help me get through this. My daughter's life has changed.

Some one once told me to lower my expectations for Aliyah, at the time I was furious and within myself was like: HOW DARE SHE!!!! WHO DO YOU THINK YOU ARE TO TALK TO ME LIKE THAT? I AM THE MOTHER OF THIS BEAUTIFUL CHILD. I WILL NEVER GIVE UP HOPE. I HAVE HOPE ALIYAH CAN OVERCOME THIS AND BEAT THIS. I BELIEVE IN THE LORD'S POWER. HE MAY "CURE" ALIYAH AND REMOVE THIS ENTIRE NIGHTMARE FROM OUR FAMILY.

From then on I knew I needed to move to the east coast to be closer to my mother so that she can help me keep my sanity!!! GOD, PLEASE HELP ME! I know I have been in the dark and have deeply envied other parents and their joyful times. Why Aliyah? Why? Why any child? Why? I hate it when I find myself asking that stupid question to which I will never find out.

I feel useless, a wreck, weak, beaten down, and shaken down. But Aliyah cries when I cry. She loves to cuddle with me. My little one is worth all of this pain and so much more. I just wish I could take her spot. I would do anything... anything for her. All I want is for her to get better! Damn I hate this WHY WHY WHY!!!

Ever since I was a child and played with my dolls I planned out my "future" daughter's life(now Aliyah). And now people are making me resign and rethink a different plan for Aliyah.... not this year... and possibly not next year.... When will we heal as a family? When will this pain ever end...?

I had no idea how much a mother could possibly love her children..... I am blessed to be the mother of my children~ Aliyah and Bruce

Aliyah with her feeding tube

Poor baby, she had no idea why she had a tube hanging out of her belly, she knew if she pulled it pain would struck.

At the hospital they taught us how to feed her, "gravity feeding", meaning no apparatus that calculated/monitored her feedings. The hospital helped us locate an agency that supplied the syringes and tubes.

Half of her meals were formula and half were her oral keto meals. The nurse told us we could tape her tube to her belly but it left marks and messed with Aliyah;s delicate skin, so now I attach it to her diaper and most of the time she wears onsies so her tube won't be in the air.

Her little brother, Bruce who at the time in november was 7 months, found her tube interesting and always wanted to pull on it so I would make sure he never had a hold of it.

I have hired someone to give her swimming lessons. We had to wait 2weeks after surgery until Aliyah's tube can be submerged in water. She loves the pool!!! Eventhough it hurts me to see her have the feeding tube at least I can say I am doing everything in my power to see Aliyah is getting the best treatment out there!

Dr. Joshi wanted us to stay in the 3.5 ratio until further notice during the time of her tube placement.