Ella modeling one of the auction's head-bands

Friday, August 27, 2010

The Reasons I Started Heather's Heart-Made Gifts

Of course, the MAIN reason that I started this mini-business is because of Ella, my one year old, who has Microcephaly (see below for her story). Yet the other reasons are to raise awareness about Microcephaly (small brain due a root cause, which for many families is never discovered) and to raise money for the Foundation for Children with Microcephaly.

Ella's Journey with Microcephaly~ Written by Me ~ Heather Leigh Tuttle Sklar

It is really hard to put Ella's journey in a cliff notes form, but I will try. It all started before she was born. She was thought to NOT have her Corpus Collusum (connectors that join the left and right hemispheres of the brain) for about 3 weeks. We had some any tests prenatally, mostly second stage ultrasounds. After they "found" her Corpus Collusum, they noticed that her brain ventricles were on the large size of normal and we continued monitoring her ventricle growth prenatally.

So, when she was born, we continued to look into the larger than normal ventricles. Her (former) pediatrician referred us to a Hopkins to see a Neurosurgeon, because large ventricles can indicate ventricular-megaly and/or hydro-cephaly, and can be helped through surgery. Everyone was pleased with her head size, because it was NOT abnormally large, which is indicative of the two neurological disorders that she was being monitored for.

Yet, for the first 6 months of her life, no one mentioned that her head size was not only small for a child with hydro-cephaly, but for a child her age. Also, she was developing fairly normally for the first 3 and 1/2 months. Yet around that time, I was noticing that she was not tracking consistently, not reaching for me or objects and wasn't very mobile. Her development was at a stand still or was slowing down. I mentioned it to her Ped. at the time and she just sent me a paper of things to work on to help in development. For that reason, and other reasons, I started searching for a new pediatrician for Ella (and Rylee).

At around Ella's 5th month, I found Dr. Wax and went in for an interview; he was amazing and saw her eczema and diagnosed her by sight as having a milk allergy. We went to Ella's 6th month well baby visit at his office and our world was crushed by Microcephaly, which is the EXACT opposite of what her former ped and neurosurgeon were monitoring. Micro means small and cephaly means head. Dr. Wax looked blind-sighted by his discovery and was AMAZED that no one had diagnosed her for 6 months, because when he looked at her chart it showed that she had the disorder at birth.

So, we had a crash course through Dr. Wax and the internet of what we could "expect" of Ella. Dr. W. also filled out a form that showed all of the blood tests that she would have to undergo and he said the quicker the better. : ( We started the quest of trying to find the under-lying cause of Ella's micro. by going back and forth to Quest Laboratories about 11 times. They can only take about 10 ml of blood from a baby of 6 months.

In the midst, of all of this blood-work (not because of the blood work), Ella developed Infantile Spasms, where she would just go stiff and almost fall backwards. I described this to Dr. W and he said she probably had Infantile Spasms (constantly chaotic brain waves that when stressed causes one spasm or a series of spasms called a cluster). She had her first EEG in January of 2010 and the Epilepsy doctor on - call (Dr. Hartman) called us that very day, hoping that we could check in to the hospital that night. That wasn't possible, so we checked in the very next morning. She was in the hospital for three days and they put her on a steroid to "treat" her spasms.

The steroid took all of Ella's infamous "fight" away and she was a porky little lump for about a month and 1/2. Her personality was taken away. Dr. Hartman and Dr. Kelley have switched her meds. many times and finally Ella is on Vigabatrin, which has done away with her IS.

Meanwhile, Ella has shown her beauty, courage, and grace and answered all of our prayers by making many strides in her development, some of which was stripped from her when she started having the spasms and on the steroid. We have acquired a large team of therapists and doctors, who have lovingly helped her and us through the discovery stage of Microcephaly. She is a fighter, my mini-hero, and an amazing child. I am blessed to have her and want to travel this journey with her for many moments. We still have no diagnosis of what caused her micro. and no prognosis. Yet, many things have been ruled out. I live in the moment and love every moment that I have with her.

No expectations, just hope and prayer and love.