ABIGAIL'S BLOG SITE
UPDATED: NOVEMBER 2010
1. Another EEG showed that the spiking has returned in the front right lobe, please pray her seizure do not return
2. She continues to sit in tri-pod position for only 15-20 sec all by herself, please pray that her time will increase
3. She is having bowel issues, please pray this will resolve.. going on now for over a month
1. Back in July we lost nursing, I went to court to fight and just found out that we WON! This is a huge accomplishment as it is rare that families win against Medicaid!
2. She is healthy & happy!
3. She is growing up beautifully!
She was my 3rd pregnancy... All was completely perfect no complaints. A few months later a test revealed a 50% chance of down syndrome. We were given the option to terminate which was not an option for us.
On March 8th, 2005 Abigail Grace was born, 8lbs 12.4oz. She had multiple anomalies, dysmorphic features, mid palatal cleft, dysplastic heart valves, hypatomia, a coloboma in her rt optic nerve, duplex kidney, retognathia, failure to thrive & sever developmental delays.
April 2005: She had an emergency surgery for G-Tube and Nissen Fundolopication. Afterwards she developed pneumatosis, NEC and had a PIC line put in place. After testing we were told she was blind in her right eye due to the coloboma. The Genetics department could not give us any answers....
May 2005: Her blood sugars levels dropped to a dangerous low of 43 and found she had dumping syndrome. She was rushed from one hospital to another where she had to be resuscitated after a massive seizure. A MRI revealed a bi-lateral CVA stroke with greater effect to her left side which left her paralyzed and fighting for her life.
September 2005: She was diagnosed with West Syndrome (infantile seizure disorder) which results in epilepsy at the age of two.
December 2006: We found Dr. Orrin Devinsky and flew to NY for an EEG which revealed her brain was in mass confusion. He administered Sabril and on 12/07/06 Abigail's had her last seizure.
April 2007: We repaired her midpalatal cleft which created major breathing complications and she was sent to the PICU one again.
July 2007: We flew to NY again for another EEG which revealed that Abigail's brain was now 90% functioning right. She had some spiking in the right frontal lobe but Sabril continued to keep seizure activity under control.
January 2008: Abigail was diagnosed with Cerebral Palsy, and moderate hip disphalisia. To date Her seizures have returned, the Sabril is no longer working. Her hips are 1/3 of the way out of the sockets.
May 2008: Flew to NY again for another EEG which revealed that Abigail brain is constantly being irritated in the right front lobe and that we should consider surgery to remove this diseased area causing the spiking and seizing.
December 2008: We have decided to put the surgery off and continuing to pray that she hits that long awaited milestone of being seizure free once again! PHEW... And yes God is still on His throne, He is still in control, Abigail's life is in His hands and we love and trust Him even more now than we did before we took one step on this journey He designed just for us! THANK YOU ALL FOR YOUR CONTINUED SUPPORT IN PRAYING FOR OUR LITTLE ANGEL!
Jan- December 2009: Just cruzing right alone, growing up. Still ranging as about a 9 month old baby. We had a few hospitals visits for routine EEGs, and a few seasonal bugs. Faced with brain surgery as an only option to stop seizures, God one week later stopped em dead in their tracts! HE IS AWESOME!!!!!
Labels: Abigail Grace