Today is a great day!

Posted by Kat in Batten Disease, Birthday, Fundraiser, Halloween, Julie, Kat, Life, London, Rachel

Today is my 33rd birthday so I imagine my Mom is once again thrilled that she is no longer pregnant with me (I am mostly joking lol).  I was born over 3 weeks late and weighed over 10 pounds so I really can’t blame her.  Thank  you Mom, aka Eileen, for giving me life and putting up with my crap, foul language and obnoxiousness all of these years.  :)

I also want to thank my Mom for being the first to sign-up for Rachel’s road race which is in 2 months.  I can’t say I was outright nervous that no one had signed up because I know people are really busy with “back to school” whether it is their child or grandchild headed back in the next few weeks.  I guess my Mom had mental telepathy and for that I am so grateful.  We have one official walker!!!!

This week I am finalizing the Sponsor information for businesses who can give over and beyond the registration fee as well as walkers and runners who will ask their friends to donate on their behalf.  Plus the prizes and raffle items.  I have never done this before and got some really great ideas at the Batten Disease Golf Tournament I took John and the girls to yesterday.  They raised about $30,000!!!!  My goal is to raise $10,000 this year for our walk/run/raffle.

Have a great day today if you read this entry!!!

Photo: Rachel (6), Kat (?) and Julie (2.5).  Not really easily seen is London who was 8 days past his due date and born the next day.  We were at a pumpkin patch in Colorado.

Codzilla

Posted by Kat in Bucket List, Life, Summer

I have wanted to take the kids on codzilla for about 2 years.  Maybe 1 year.  I forget.

We are going on Codzilla this sunday and will then be able to cross another item off our bucket list.  So excited!

Here is codzilla info: http://www.bostonharborcruises.com/codzilla/

Xanax?

Posted by Kat in Batten Disease, Boston, Julie, London, Medical, Rachel

Taking Rachel into her Primary Care doctor this morning to talk about Xanax as a possible med to help Rachel with her anxiety and obsessive thoughts. Something to help her like Risperdal did but without the weight gain (WOW!).

This weekend I think we should take the kids to the beach. We live a block away from it but we never go because I hate the texture of the sand. Most people avoid swimming situations because they don’t like the way they look in a swim suit but frankly I don’t care about that. Its the sand that keeps me away.

12 more days unti school starts for Rachel and Julie!!!! 13 days for London and and 20 for Boston. London should get “THE” letter in the mail this week to let him know who he has for his Kindergarten teacher. So exciting!

Picture:  This was taken earlier in the summer when the pool looked like pea soup.  Nothing can keep Juliebean out of the water.

Childhood Dementia

Posted by Kat in Batten Disease, Kat, Life, Rachel

I came across a guide I hadn’t seen before detailing what its like to be a child with dementia.  This one was written by a Niemann Pick Group (Niemann Pick is like Batten Disease except those affected kids can’t metabolize cholesterol) but is fully applicable to Batten Disease and the kids who are affected.

http://www.nnpdf.org/documents/ChildhoodDementias-US-FINALVERSION.pdf

Many “bad” behaviors from dementia have trickled down to my younger children and there is no guide to fixing those… Hopefully as the little ones get older and mature certain behaviors and attention seeking issues will sort themselves out. Their big sister, their role model is losing her mind and we can’t stop it.

Here is the dementia guide that the BDSRA put out.  <link to guide>

Nearly 33…

Posted by Kat in Batten Disease, Life

I turn 33 next week which means the summer is almost over (woohoo).  Next summer I plan to drive the kids from the east coast to the west coast so we can see the pacific ocean!  My birthday wish is to raise a little  bit of money for the Batten Disease Support & Research Association so if you have an extra $10 to spare please consider giving to them.  Here is the link (and thank you!):  http://wishes.causes.com/wishes/352172

Meet John

Posted by Kat in John, Life

As punishment for being my husband and barely reading my blog, may I present to you this unflattering picture of him.

Meet Juliebean

Posted by Kat in Julie, Life

Meet Julie. She is a 7 year old 30 year old who is tremendously helpful and caring!

Meet London Jack

Posted by Kat in Life, London

He is nearly 6 and about to start Kindergarten. He is really excited!

Meet Boston Fenway

Posted by Kat in Boston, Life

He is my baby who is about to go to preschool full-time.

The Longest Summer

Posted by Kat in Life, School, Summer

I’ve been a Mom for 11 years now. 2 summers ago I spent a lot of it with Rachel at Children’s Hospital Boston and / or at a variety of doctors. Last summer me and the kids took a month long road trip visiting a pile of amazing places and doing other road trips. This summer we have spent a lot of it at home having days at the pool but not really doing a lot but having simply fun.

Simple fun apparently sucks! This has been the most difficult summer of my mothering career and it is a summer I plan to avenge. I know some of the difficulty surrounds Batten Disease and behavioral issues that trickle down to my other 3 children but that can only take so much blame.

School goes back in 3 weeks. All 4 of my children will be in school full-time! Rachel is going into 5th grade, Julie is going into 2nd (with the best teacher ever), London will be starting Kindergarten and Boston will be at Montessori Preschool. I have promised them their own individual “back to school” shopping trips for some new clothes / shoes and supplies. They are so excited for their turn to go shopping with “just Mommy” as opposed to dragging everyone along.

So the Back-To-School Countdown begins!