→BATTEN DISEASE

Thank you so much to all of the GoFundMe donations toward Rachel’s van. I found a van only a few minutes away with low mileage and a great price. I am still working on raising a bit more money to purchase a fold up hoyer lift. Meet Cartman:  

Rachel is getting worse, much more difficult to physically manage and cognitively she can’t be held accountable for half of the things she does.

After a long day of doing Mom stuff, Mom of dying kid stuff and working on websites, I came home to this. A ramp into the airstream for Rachel, built by my friend Christopher. Good friends are hard to come by and I have been very lucky in the friend department.

So my name is Kat (Kate) and I have four children. My oldest is Rachel. She is 14, blind, developmentally disabled and can’t eat, toilet, bathe or do very much on her own. She is unable to maintain her temperature on her own and is having a harder time walking and will yell multiple times throughout the day until you figure out what she wants to get her needs met.

Taken August 2007. I miss this. This girl is still in my daughter but the disease is taking over. I took Rachel to see a primary care doctor here in Denver and she is willing to treat Rachel both as a person and a person with a neurological disorder. This is a big weight off of my shoulders. As she is still having breakthrough bleeding despite the pill and extra estrogen I decided to try her on the depo shot and so far so good. She weighed 186 at the doctor and I am still getting her in and out of the bath with minimal help from her. As long as I can physically care for her I am keeping her endlessly chatty, yelling, hungry, sometimes irritable self at home (which is still an airstream – so cool). I hate what this disease is doing. I absolutely hate it. Taking her abilities and making it hard to do things as a single-parent family. I won’t give up but unfortunately, Batten Disease doesn’t give up, either. My arms hurt from my muscles ripping to grow larger as her muscles give out more and more each week. Being built like a brick(read the rest)

Rachel was supposed to come to the gun range with me back in Boston several months ago, but the day I had planned to take her she had a seizure. Yesterday we went up to Spring Creek which is just outside of Idaho Springs in Colorado. With the help of multiple, legal gun owners, Rachel was given the opportunity to handle an unloaded rifle and with assistance she was able to shoot it.

The weeks after the road race have been super busy for Rachel, me and her siblings.  Rachel finished up her home schooling with several weeks of seeing Anneliese the awesome TVI (Teacher of the Visually Impaired) at our home and baking.  Once school was out I loaded up the kids, pets and the Airstream and we drove out to Colorado.  Rachel had a hard time over the 4 day journey as it was very disorienting for her but once we arrived she has been doing much better.  I sent her IEP (education plan) to the school district here and they started her in summer school the Monday after we got here.  She likes going to school as much as she ever has (says she hates it but has a good time when she is there).  A huge difference for me was putting her on a big yellow school bus when I am used to putting her on a 13 passenger van.

My last post was about following my gut and taking Rachel out of her residential school, which I did.  Tonight I will briefly write about the last few weeks and the immediate future.

I’m watching Rachel stuff herself a few feet from me with some pancake donut holes that you can buy at Trader Joes.  It’s a Tuesday morning at 8:40 and my triplets (my other three children who are unaffected by this disease (I call them the triplets) are all at school. A little over a month ago I sent Rachel off to a new residential school and we lasted a month.  They offer some amazing activities there for kids who have a wide range of disabilities and I highly recommend the place. But the place just wasn’t for us. She’s home for now while we figure out the next step.  If the decision were hers she would return to the Middle School she was attending but we have to consider another option as well before she (hopefully) gets to return to her old school.  She is sitting in her recliner under an electric blanket and listening to Sesame Street on Sprouts.  Happy as a clam.  I followed my gut and I’m happy about my decision to bring her home. My favorite part about her being home?  She is walking up and down the stairs and sleeping in her old bunk bed(read the rest)

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