SO last week I had to speak to a different neuro because Jailynns (Dr Kossoff) was on vacation. SO this week i was on vacation but busy making calls too. When I caught up with dr kossoff he said if jailynn is doing okay in 2-3 weeks we could try to wean her from tegretol. He asked me if i ever scheduled her VEEG and i told him for December. He sounded confused and not pleased ( i could just tell) and he said we could just try to make due til december. well after much discussion betweeen my huband Jason and I we decided we wanted it sooner. I hate waiting and I want answers. I called the dr back and he said okay that it was up to me, I called diana pilas and Jerry in the EMU and rescheduled it sooner to SEPTEMBER 9th! it is sooo soon that I am kinda scared! I figure it is best sooner though because college classes will be starting monday aug. 25th and sept 9th is not too far away so I can just do my best to not get bcked up on school work.
Jason will stay with jailynn during the day and I will come after school and stay the night. They have dial up internet access so it will be slow but I can use the computer and study hopefully when she goes to sleep. I am trying to contact some friends and family members to arrange "relief" periods for Jason during the day. My husband is blind so he will pretty much be stuck in the room with jailynn, He says he will just pack a bunch of food. I am hoping his mom will agree to drop him off at the hospital in the mornings so I can leave and go to school and hopefully his mom or a family vistor can bring him home each night, since someone has to be there at all times. We only live 15 mins from Hopkins thank goodness.
I told them if she is still a surgery canidate after the VEEg that I was hoping to get surgery Decamber/ January while I am on break from college. I cannot and will not sit in class while my baby is in surgery or the ICU. So far it is pretty much a definate No from John Hopkins for december but I am praying they can do Jaunuary.
I want to to it sooner, so that way she can still have time left with Infant and toddlers therapy and she is not going through surgery while i am fighting with the public school system about her school/therapy situation when she turns 3. I figure the sooner before school age the better.
and every parent i have talked to says they wish they would have done surgery sooner.
thanks for letting me ramble... I pray god gives me strength through all of this!