Archive | March, 2013

Purple Day

26 Mar

Today, March 26 2013 marks the 1st official PURPLE DAY in Canada.

Purple Day 2013

Purple Day was first recognized as the official day for epilepsy awareness in Canada on June 28, 2012, in an Act of Parliament put forward by the Hon. Geoff Regan, M.P. for Halifax West. Bill C-278 met with resounding all-party support and became the only legislation of its kind in Canada. The Act demonstrates meaningful support to the 300,000 Canadians living with epilepsy and helps to reduce the stigma and discrimination that is often associated with the disorder.

You can read more about this amazing day in Canada here at the Canadian Epilepsy Alliance website.

For those of you who aren’t familiar with Purple Day, it was created by a young girl – Cassidy Megan from Nova Scotia, Canada in 2008.  Cassidy created the idea of Purple Day to share her own struggles with seizures and to get people talking about epilepsy.

Epilepsy affects over 300,000 Canadians and over 50 million people worldwide. My little ladybug is one of those people.

I’ve not really written much about her seizures, but couldn’t think of a better day than Purple Day to begin.  One of the characteristics of many children with Congenital Disorders of Glycosylation CDG is epilepsy. When most think of seizures they tend to think of what is known as a Tonic Clonic or Grand Mal seizure which is often depicted on tv and in the movies. Truth is there are dozens upon dozens of types of seizures.

Ladybug has what are known as Myoclonic Seizures. (myo meaning “muscle”, clonic meaning “jerk”) These result in an increase in muscle tone.   Those suffering from myoclonic seizures typically react as if hit by a single jolt of electricity.  Usually in Ladybugs case her arm or arm and legs stiffen up and go straight out and her eyes are wide open and look up and to the left side.  These “episodes” happen anywhere from 1 to 10+ times a day, every day.  As each person is different it is a big gamble as to which medication will work.  Initially the doctors tried one called Vigabatrin. We were told it would make her a little groggy.  That was a huge understatement.  Thank heavens she was in the hospital because after 2 doses she went into a coma like state and we were unable to wake her up for several hours. She has since been taking Keppra (Levetiracetam) and the dosage has been slowly increased over the past year and a half. Up until this past month I hadn’t really noticed a difference in the quantity or length of the episodes, I say this because with this last itty bitty med increase she is down to under 3 noticeable seizures a day.

Myoclonic seizures are often only one manifestation of a mixed seizure disorder, and they can be very serious. For this reason we see Ladybugs Neurology team every 4-6 months and monitor and record her seizure activity daily.

Along with the decrease in noticeable seizures, Ladybug is also healing very nicely following her port removal and Mic-Key insertion two weeks ago. I must also add, that as of today she is  a whopping 20 pounds and 28 inches in length!!!!  Even though her little princess diva attitude is becoming more prominent as days go by, I’m so happy for each and every one of these little milestones.

Ladybug in all her glory wearing a purple dress for Purple Day.


Pembe Bear

12 Mar

Tonight Ladybug helped me pack her very special hospital bag.  The bag was filled with necessities like diapers, wipes, pj’s, and a cuddly blanket. There was one more item in this bag that is by far the most important – it is a very special little bear known in our house as Pembe Bear.  Now Pembe bear has been with Ladybug since she was first-born, it is always by her side during each and every hospital stay, and even has its own medical bracelet to match Ladybugs.


Just in case you were wondering, Pembe is Pink in Turkish.  It was one of the first words I picked up when I lived in Turkey, well that and Otur which means sit down.  As a kindergarten teacher this came in very handy with a class full of 4/5 year olds.

Back to Pembe Bear – PB has never missed a hospital stay or surgery and tomorrow Ladybug is scheduled for surgery.  Her PEG G-Tube will be replaced with a “big girl” Mic-Key G-Tube, and if all goes well and they are able to find a good line Ladybugs Port-a-Cath will be removed completely. If they aren’t able to find a good line there is a chance a new port-a-cath will be put in its place. I’m obviously hoping for the first.

I will be sure to post updates after the surgery.