Tag: jncl

Look no further.  They exist and are made by a company called Access Unlimited in New York. Now I have to win the lottery or sell a kidney.  I don’t think organ sales are legal?

Here is a link to the pdf quote I got to have this made for our Jeep to suit Rachel. $6500

Not being able to do the things we used to do and go the places we used to be able to go is taking its toll on me and the kids. We have the van which was generously donated by our friends, family and wonderful strangers through GoFundMe but it’s 20 years old and not reliable enough to go long distances.

Does anyone out there have one of these? What do you think?

www.accessunlimited.com

In many places here in Denver we have community mailboxes. I like to call them mailbox trees (Rachel is photographed near one of the trees near our house).

Within these plastic boxes, (yellow and blue) are small USB books on tape provided to her by the library of Congress. Audio books. Books on tape. They come in the mail, for free, and this library has extensive content for all ages.

So imagine how ironic it is that these books are mailed, for free, to blind people all over the United States, yet the “outgoing” slot is too small to fit them.

Are blind people supposed to drive to the post office?

Just a morning WTF moment.

Rachel trying to mail her books on tape for the blind

Forgot to mention this on the blog (for the record) that Rachel suffered her first Grand Mal seizure on Sunday, February 6th 2011. It started off with her spinning our container of flour repeatedly after being asked to put it down (or it will spill) and she could not snap out of it. She slowly leaned back towards the kitchen counter and I grabbed her and laid her on the ground. She then started convulsing for about 2 minutes.

No diastat was used. No 911.

She woke up later on with a screaming headache and was irritable beyond belief. By the end of the day she was better (she slept most of the day away).

I feel so cool blogging on a Friday night.  🙂

I took Rachel to her monthly girl scout meeting tonight and she had a good time.  It was hard to watch her try and weave a bracelet (to raise $$ for Juvenile Diabetes) because she can’t see and has a hard time with mental processing activities that require sight. I promised her that I would finish the bracelet AND she could buy it off of me towards Juv. Diabetes.  Such a good kid.

She is on day 3 of the lamictal.  She is definitely more alert now that the risperdal is totally out of her system and her appetite is MUCH lower.  I wouldn’t say that she is totally under control (behaviorally) but I think even the baby dose of lamictal (25mg for the first two weeks) is helping somewhat.  She hasn’t been in school since Monday but I think she will go back next week.

There is a possibility that the Juvenile Batten Disease drug trial – the first one ever – will be starting soon.  There has been talk of it as long as I’ve know about Batten Disease so I’m holding onto a shred hope.  Hope, even if only a shred, is a good thing.

The drug trial won’t be for a cure, it it to test out the safety of using Cellcept (Mycophenolate) on JNCL kids.  Cellcept has shown that it can slow down the effects of the disease on mice that have been genetically altered to have JNCL (Juvenile Batten Disease). (jist of JNCL and cellcept usage in knockout mice)

Featured Picture:  That’s me (Kat), Rachel, Julie and Auntie Jacquie.  A park ranger took our picture on Peddock’s Island…  (wiki on Peddocks)