Posted by 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:

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Posted by 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.


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Childhood Dementia

Childhood Dementia

Posted by 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.

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>

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Nearly 33…

Posted by 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!):

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Meet John

Posted by in John, Life

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


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Meet Juliebean

Posted by in Julie, Life

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

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Meet London Jack

Posted by in Life, London

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


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Meet Boston Fenway

Posted by in Boston, Life

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


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The Longest Summer

Posted by 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!

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The trial begins!

Posted by in Batten Disease, Life

The Juvenile Batten Disease’s one and only trial that they have been talking about for years has finally been opened! I found it yesterday at and have emailed the folks running the trial to ask them to consider Rachel. It will require that she takes a liquid medicine everyday as well as ranitidine (antacid). The trial is double blind which means she will definitely get the medicine but she will also get the placebo. We’ll have to visit New York 4 times and work with Dr Sims (Rachel’s Neurologist at Mass General) for clinical evaluations. This won’t be a cure but if this medicine does anything, and is safe then maybe we’ll be able to get her this medicine after the trial. Here’s hoping!

Trial Medication: CellCept (Mycophenolate Mofetil)

What does this medication do? It’s an immunosuppressant

Side Effects: See also Warnings section.Constipation, nausea, headache, diarrhea, vomiting, stomach upset, loss of appetite, gas, tremor, or trouble sleeping may occur. If any of these effects persist or worsen, notify your doctor or pharmacist promptly.Remember that your doctor has prescribed this medication because he or she has judged that the benefit to you is greater than the risk of side effects. Many people using this medication do not have serious side effects.Because this medication weakens your immune system, you are more likely to develop infections which may be serious. Tell your doctor immediately if you develop any of the following signs of infection: persistent sore throat/fever, night sweats, flu-like symptoms, painful urination, vision changes, a sore or wound on the skin that feels warm/tender/painful and appears reddened.This drug increases the risk of a rare and possibly fatal brain infection (PML – progressive multifocal leukoencephalopathy). Tell your doctor right away if you have any of these symptoms: clumsiness, sudden change in your thinking (such as confusion, difficulty concentrating), difficulty moving muscles, seizure, difficulty speaking.Tell your doctor immediately if any of these unlikely but serious side effects occur: unusual tiredness, fast/irregular heartbeat, muscle weakness, easy bleeding/bruising, swelling of the feet or ankles, mental/mood changes, weakness on one side of the body, unusual change in the amount of urine.Seek immediate medical attention if any of these rare but very serious side effects occur: chest pain, stomach/abdominal pain, black/tarry stools, vomit that looks like coffee grounds, shortness of breath/rapid breathing.A very serious allergic reaction to this drug is unlikely, but seek immediate medical attention if it occurs. Symptoms of a serious allergic reaction may include: rash, itching/swelling (especially of the face/tongue/throat), severe dizziness, trouble breathing.This is not a complete list of possible side effects. If you notice other effects not listed above, contact your doctor or pharmacist.In the US -Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.In Canada – Call your doctor for medical advice about side effects. You may report side effects to Health Canada at 1-866-234-2345.

Warnings: Mycophenolate decreases the body’s ability to protect against illness and infection, and may also increase your risk of developing lymph node tumors (lymphoma) and other types of tumors. Therefore, this medication must only be given under close medical supervision. Discuss the risks of taking mycophenolate with your doctor. Notify your doctor immediately if you develop signs of infection (such as persistent sore throat or fever) or other symptoms such as weight loss, night sweats, enlarged lymph nodes, or skin growths.

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