Thursday 7/9

Posted by Kat in Kat, Rachel

Our weekly trash day is Thursday (today).  Easily my favorite day of the week.

I have spoken with different people at Children’s since writing on 7/7 and really need to figure the best way to communicate.  I like a nice bulleted list but that seems really cold and unfeeling.  Let’s try it without the bullets:

I found out today that the EEG on 7/13 will be “sleep deprived” meaning that on Sunday night she is to have no more than 4 hours of sleep, preferably from about midnight until 4am.  I imagine that they are hopeful that she will get sleepy when she is having the test because a lot of “not known about” seizures occur when a child is trying to fall asleep and they want to capture that.  Let me state that Rachel, to my knowledge, has never had a seizure.

Rachel has been cleared to have her MRI on 7/23 under sedation (not anesthesia).  I was a little surprised that she was cleared given all of the concern surrounding the idea of general anesthetic and the ERG but we are clear and I am grateful because I *REALLY* want to see if there has been any noticeable change.   The MRI she had 16 months ago was without contrast and the new MRI will have contrast.

I did some looking into the lab that is doing the testing of her DNA for Batten Disease and depending on the type of testing they are doing it says that it will take anywhere from 3 weeks to 3 months.  If only we could pee on a stick for every ailment, much like a store purchased pregnancy test.

Ryan, my nephew that is the same age as Rachel is on his way from Connecticut right now to come and spend some time with us.  I think it will be good for Rachel to be around another child her age and have a buddy.  Let’s just hope he doesn’t eat a lot, right?

I’m trying to keep smiling but its a very up and down battle.  One minute I am convinced that she has something really horrible and then the next minute I have myself convinced that there is absolutely nothing wrong with her (and that she can see fine).  Mostly I am just keeping on top of my life, my children, Rachel’s care, the web business and crossing my fingers that she is ONLY going blind.

Who would ever thought that a parent would be hoping beyond hope that their child was “merely” going blind.  I never knew that a child could have normal vision and then go blind in childhood until  this year.   We’ve all heard of the firework accidents, the rare infection causing blindness and children being born blind for whatever reason.  What else don’t I know about?  I don’t think I wanna know.