Posting information

// July 28th, 2009 // Boston, Kat, Life, Rachel

In the weeks leading up to her diagnosis, I did a lot of research looking to see how other Batten Disease kids present.  What their eye symptoms were, previous testing, bloodwork, etc.  One site in particular I found myself going back to a lot even although this family is touched by a different form of Batten Disease.  Looking at Nathan’s medical reports was so helpful to me, I have decided to put the same type of information online.  In the coming weeks I am going to have a column on the right hand side (you’ll probably have to scroll down to the bottom to get there) but I plan to make the medical stuff available in the interest of helping other parents in my shoes (with a child who has language, memory,  visual problems and probably a cognitive decline) try and pinpoint if they should talk to their Dr about being tested for NCL (aka Batten Disease).

I’ll start by sharing the fax report of her diagnosis.  Click here for the diagnosis PDF

Rachel was a little irritable today and very excitable.  I have finally settled them in for a little while with Ice Age.  I am about to start dinner in a few and then head to a nighttime Dentist appointment.  Tonight I am meeting Lulu and her friend for a drink after the kids go to bed.

I also wanted to announce that London (who is turning 4 in October) is FINALLY POTTY TRAINED!  Now we just have to convince Boston to lose the diapers and I’ll be a happy Momma.

2 Responses to “Posting information”

  1. jyfkqe says:
    8/2/2009 at 12:42 am

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  2. hayley says:
    8/2/2009 at 3:24 pm

    Hiya i just wanted to post you a message to wish you all the best with Rachel i know kinda how you feel as my ex brother in law has this. He is about 20 now and leads a remarkable life he rides the streets where he lives on his bike (single and tandem) his mum’s never moved so he know’s the layout like the back of his hand he skateboards too. He is in college at the minute learning to be a bike mechanic i have actually seen him fix his bike and it was amazing scared me to death though watching a blind man saw parts off his bike but he did it better than i could. He’s doing amazingly well for his age they told his parents that he wouldnt’ live much past his 6th birthday and he’s now about 20 his family swear he’s doing so well because he doesn’t know what’s wrong with him as they’ve never told him the extent of his condition he just thinks he’s blind. I wish you and your family all the best and i’ll continue to read your blog…

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