Tag: rachel

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. Continue reading “Rachel update July 2014” »

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. Continue reading “On that note” »

Rachel completed her first week at Massachusetts Hospital School.  Tuesday was a long admission process and she stayed at school until Friday night.  The school receives students (patients) on Sunday afternoon and sends the kids home on Friday afternoon.  The activities they offer to their student population cannot be compared at any other facility that I have ever heard of (swimming, horseback riding, water sports, bowling, cooking, music, PT, OT, ST, TVI and the list goes on… WOW!).  Over 90% of students are in wheelchairs and Rachel attended summer camp at the school.

The first week was hard on Rachel but Meredith and I visited her Thursday night for the monthly themed dinner (event) to check up on her and help her feel more grounded. As difficult as it was on her with her blindness and dementia, she did not get upset when I put her on the van today (Sunday) to return to school.

Rachel has a 1:1 person with her from the start of school until 9pm and it turns out that Gina (her 1:1 from public school) has been assigned to work with Rachel during the school week!! This made for a much easier transition on Rachel (and me).

This is not the best picture but I took it of her on Thursday night after I had tucked her into bed.  She doesn’t have a roomate (yet) and is quite pleased that the TV in her room has Sprouts (her favorite channel).

2014-02-27 20.10.11

Friends from all over the country wore their jeans to support Rachel for National Rare Disease Day. The idea is that you wear jeans to show support of rare genetic diseases because the disease is in our genes. I asked all of my friends and family (well, any of them on facebook) to tell at least 5 people about Batten Disease and my Rachel. Here are the ladies and gents who wore jeans for genes!

BECCA

becca

NICOLE

nicole

MEREDITH

meredith

MELISSA

melissa

KERRIE

kerrie

KATIE

katie

Me (Rachel’s Mom)

kat

Heather

heather

Cyrille

cyrille

Chris

chris

Tami

tami

The Brightson Family

brightson

Susie

susie

Apryl

Apryl

Kelly

kelly

rachel_snowboardFor the 4th day of spirit week at school (Olympic Day), I sent her in as a Gold Medalist Snowboard (complete with board and all). She won a prize and $5 to the book fair.  The smile on her face was priceless!

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