Sunday, December 28, 2014

The Mad Scientist

My two boys are SpongeBob SquarePants fanatics.

They are maniacal about their obsession.

The dinner table is often the preferred arena for reciting lines from their favorite episodes.

This year, their bizarre behavior did not escaped the careful eye of Jolly Ole Saint Nicholas. So, the ever omniscient observer in the bright red suit, brought them this ingenious invention:

A life-like representation of Bikini Bottom

We had a blast setting up the "absorbent-and-yellow-and-porous is he, pineapple-under-the-sea" aquarium. It was very inexpensive and came with everything, except the fish. The boys loved it. It seemed to be, by far, one of my better finds for a cool and care-free Christmas present.

Or was it?

Yes, dear readers, I am sorry to report, this ingenious idea may not have been such a clever one after all. Let me explain.

When I was a kid, I took a trip to our local fair and won a fish from successfully throwing a ping pong ball into a small goldfish bowl. You may remember the game?

But the thrill of my victory was short-lived and poor Romeo was kept in his glass bowl where rarely, if ever, his water was changed. Despite a few failed attempts at "jumping-out-of-the-bowl" suicide, he was indestructible, living for many years, in stagnant and murky water.

 Perhaps it was the memory of that hardy, low-maintenance fish that made me believe an aquarium would be a more humane and easier environment to keep clean and display a few furless, finned friends.

I was wrong.

It appears that I am aquatically ignorant.

With the introduction of our new aquarium, I  have transformed into nothing short of a mad scientist.

Who knew, there were things like ammonia, nitrates and chlorine levels that need checking. Who knew that cycling a fish tank is the first step in preventing what's called New Tank Syndrome, a toxic form of cloudy water that can kill a fish as fast as you can say "love that dirty water"!

I have been doing my best to perform test samples of the water, checking the pH and ammonia levels. I have made frequent water changes. I have mixed unusual concoctions of powders, liquids and noxious chemicals. All of this to ensure a crystal clear environment that promotes the favorable well-being of our newest family member.

I have become obsessed.

My new lifestyle caring for this aquarium has become like a new mission in life for me, a lifelike microcosm and all-too-familiar representation of the role I play every day in caring for my children.

What on earth was I thinking?

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Lisa Peters writes about family life at

Wishing you all a very happy and healthy New Year!

Thursday, December 11, 2014

Baking Memories 4 Kids

I've had a secret!!   A big one!!!  And I managed to keep it from the kids and that is a pretty darn near unqualified miracle around here.

Let me backtrack a bit.  To about the summer/ fall before.  Our family was nominated by another awesome family for a trip to Disney World.  This trip is expenses paid and we stay in the Give the Kids the World Village.  It is an amazing opportunity and a very big blessing for our family.

Baking Memories 4 Kids is non profit and is an awesome organization.  You can lean all about them by clicking here.  They are also on Facebook and you can find them and like them there.

So how do they send kids and their families on these trips.  By baking cookies.  And they are darn good cookies!  So good this gluten free lady committed a big no no and ate one (or two I'm not telling!!).  They are yummy, home made, and every container of cookies people buy help send families with terminally ill children or children with life threatening medical conditions to Disney.

We are excited to go.  We go in February.  Today was the big reveal.  We were allowed to invite friends, family, and the mail man (she was busy though lol) to Panera in Charlottesville.  They have been so amazing in supporting Baking Memories and hosted our reveal party today.  They also gave us lots of yummy food!  Always a plus in my book!!

We arrived at the Panera and Frank was already there with the news!  We got to be TV stars:).  I don't think Marvin quite realized what was going on at first since I told him we were taking a day to celebrate my birthday and meeting our cousins.  Even bumping into my two friends didn't tip him off. Now that full realization has sunk in he's making plans on what he is going to do (and Amanda, I'm sorry to say he doesn't want to ride an alligator.  He's worried it will eat him, lol).  Here are some pictures of our day!

Here we are with Frank.  He lives to surprise the kiddos!!  It was worth keeping the secret for so long to see the look on their faces!!

Cary Lynn, the star of the show, got plenty of attention.  Amanda, my friend, whose family is going with ours the same week loves my little girl.  And Cary Lynn loves Amanda.  Just mentioning her name brings smiles to my little girl's face and that means a lot to this mama.  Grandma also got lots of cuddles too!  For a little girl who spent so much of the beginnings of her life in a sterile hospital with not a lot of attention she makes sure she gets it now!
Marvin is hanging out by the camera.  My little man who is so charismatic in small groups was a bit overwhelmed today with all the attention, but he did great!

I love my kids.  This vacation is a chance for our family to live a normal life for one week.  One that doesn't involve doctors, therapies, and all that jazz.  For a family like ours these moments are precious.  Because we don't know what's going to happen in the future.  Every moment we can spend together is precious and when you live with a medically fragile child it's something you don't take for granted.

Thank you Baking Memories 4 Kids.  You have given us an amazing gift.  I'm so grateful for this chance and we are so ready for this trip.  Marvin is packing a backpack as I write this:).  We are ready and so excited!  Thank you seems inadequate but you will never know how much this means to us!!  Look out Disney, here we come!!

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Amy Fields is ready for Disney!!!  While she is waiting you can follow her on her blog Many Kinds of Families.

Monday, December 1, 2014

Why having accurate medical records is important for family caregivers

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Parents need to make sure that the details of medical events occurring for their child with special needs are correct.  This is particularly important during hospitalizations, when changing health care providers, or transitioning to adult health care.   

How to keep records
Parents should keep brief notes of visits and especially bring a small spiral notebook or online if they have access during hospitalization.  They should also get “clinical summaries” after appointments and have their child’s PCP (primary care physician such as a pediatrician) copied.  Family caregivers can request copies of other records, such as hospitalization, from the department that cared for their child such as gastroenterology etc.  If the child has complex needs, families may have to get records from each department.  In addition, parents can request results of testing such as x-rays from radiology and any procedures from surgery.  It is important when getting surgical records to also request pathology reports (results.)  It may also be a good idea for the child to wear a medical id bracelet that has all of their basic information on a flash drive.

Making sure records are correct
Parents can compare the doctor’s notes with their own.  It is vital that any major events such as “coding” and needing to be resuscitated are documented correctly.  Correct records will result in better care and inaccurate records can have negative implications. 
What to do if records are inaccurate
Families can discuss the record with the appropriate department that treated the child.  Sometimes, older records can’t be changed in the computer system.  However, parents can ask to have the record “amended” which means an additional note will be attached to the record to clear up any confusion.  Families should request a copy of this additional record in writing.  They can use this not only for their child’s medical history file but also for new health care providers who are just learning about their child.

Why good medical records are so important
Inaccurate medical records can adversely affect a child’s health care.  For example, pulmonologists and neurologists would need to know if a child went into respiratory distress during a seizure.  Nursing staff would need to know of infections that the child acquired in the hospital such as urinary tract or c-dif (clostridium difficile) infections to which the child wouldn’t otherwise be susceptible, and take precautions.  Surgeons and anesthesiologists would need to know if a child had to be reintubated with a breathing tube after a procedure.  When children are have complex needs or are hospitalized, they may have many providers, so these details will help prevent adverse events. 
Families can ensure that the medical information being shared about their child is correct.  This will result in better health care and better outcomes for their child.  
American Academy of Pediatrics-Build Your Own Care Notebook
Washington Department of Health-Care Notebook 
For self-advocates - My Health Pocket Guide
Helpful Contacts:
Family Voices/ Family-to-Family Health Information Centers
*For more information on this topic, see Reviewing and Amending Medical Records” factsheet from the Statewide Parent Advocacy Network at
Remain Hopeful, 
Lauren Agoratus is a parent/advocate who works for the Statewide Parent Advocacy Network and serves as the NJ Coordinator for Family Voices (, a national network that works to “keep families at the center of children’s healthcare” at or FB  She also serves as NJ representative supporting caregivers across the lifespan for the Caregiver Action Network (formerly National Family Caregivers Association) in a volunteer capacity at or FB