Moments with Moriah: Albert'a' Einstein

Saturday, June 13, 2009

Albert'a' Einstein

That's right. She's a genius. =)

9 comments:

Tanya said...: to cute! This is a sweet picture. She looks really good. Hoping all goes well.; June 13, 2009 9:09 AM
Kristi said...: Seriously?!
SO VERY CUTE!!!!
She really looks so good!
Continuing to keep positive thoughts and excitedly anticipating our Aquarium date (and others!) when you are able to return home... soon!
:-)
Kristi; June 13, 2009 10:49 AM
Mrs. Dan said...: LOVE IT!!!!; June 13, 2009 11:09 AM
hannah m said...: Moriah, you are just too cute for words! And you just keep upping the cuteness factor. We love you, sweet girl. *H+V+v; June 13, 2009 3:00 PM
Eva Nichole said...: Oh my gosh that is so cute!!!; June 13, 2009 5:15 PM
Tina:0) said...: Too Cute! Only thing missing is the mustache! (LoL); June 13, 2009 8:47 PM
Andrea said...: She's a very pretty genius!; June 14, 2009 8:41 AM
Free At Last said...: Too stinkin cute!! Loving that hair!!; June 14, 2009 7:23 PM
Catherine said...: now that is fab!!!!; June 16, 2009 10:18 AM

Moriah's Diagnosis and Medical History

Diagnosed in utero with a heart defect, Tetralogy of Fallot, Pulmonary Atresia, and Multiple Aorto-Pulmonary Collateral Arteries (Mapcas)

Open heart surgery at 5 days old to connect her pulmonary artery to her aorta (Waterston shunt) - they saw later that this was not even a pulmonary artery but a collateral

Clinically Diagnosed with CHARGE Syndrome
She has a mild coloboma in either eye, heart defect, delayed in growth and development, has a horse-shoe kidney, and failed her newborn hearing screen

Pyloromyotomy surgery to correct her pyloric stenosis.

G-tube Surgery

Gastro Esophageal Reflux Disease (so severe it lead to sleep apnea)

GJ tube placement: she is continuously fed through the jejeunem (small intestines) while g-tube continuously drains to gravity

Was thought to have a seizure disorder, but we saw that these "jerky" movements ceased after stopping her Reglan (a common motility drug that may cause severe side effects )

A total of 5 Heart Catheterizations

On continuous oxygen as of June 19, 2008

Nissen Fundoplication Surgery September 2008

A FULL REPAIR OF HER HEART on November 14, 2008 -Unifocalization Surgery performed by Dr. Frank Hanley at Lucille Packard Children's Hospital

Open heart surgery to fix a compressed lung on December 10, 2008

Diagnosed with Abdominal Migraines or what is also known as a variation of Cyclic Vomiting Syndrome . This is resolved with routine doses of Neurontin and if in case of a breakthrough, PRN doses of Ativan)

Right Diaphragmatic Plication after phrenic nerve injury from previous heart surgery January 2, 2009

Severe Septic Shock February 9, 2009

Tracheostomy surgery at 15 months old, April 2009

Has battled fevers and infections, the majority being of unknown origin, since December 2008. We have finally found that prophylactic antibiotics help, and we have gone 1 month infection-free, after not being able to go longer than 14 days without infection since December. She is diagnosed with an undefined immune deficiency

She is being tested for a mutation of the Digeorge Syndrome gene. She does not have the deletion of the gene.

Heart Status: Heart Fully Repaired. Although she does have pulmonary hypertension, which is being treated with Sildenafil (a.k.a. viagra!) We pray that this will subside as she gets stronger. Otherwise, she only has to have open heart surgery to have her pulmonary valve replaced every few years, and her heart caths every 6-12 months.

We finally found out that Moriah cannot hear out of her left ear, and has moderate hearing loss in her right ear.