On August 29th, 2009, at 12:30am, James was born via emergency c-section due to lack of movement and the doctors thought maybe he was in distress. When James was born, he didn't cry, had a two vessel cord, low muscle tone but was shaking his arms. He went to the NICU for further examinations.
James spent 2 months in the NICU (8/29/09-10/29/10) and while he was there we found out that he:
- Had a stroke during my 1st trimester
- No suck/swallow reflexes; he has a g-tube to eat
- He has a blood clotting disorder called Factor V Leiden;
- His optic nerve in his left eye never fully developed and he is extremely far-sighted
- He has a chromosome disorder called 22q11.2 duplication which means he has an extra copy of a small piece of chromosome 22.
- He has severe reflux and had a surgery called Fundoplication to prevent severe reflux
Since October 2009 he has been…
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- Diagnosed with Infantile Spasms; a catastrophic form of Epilepsy
- Has been on 10 different anti-seizure meds; nothing has worked so far.
- Diagnosed with Quad Cerebral Palsy in September 2010. This means all 4 limbs are affected.
- James still cannot hold his head up, sit, stand, walk, eat by mouth, is always hooked up to a monitor to show us his O2 levels and heart rate. James' brain is consistently seizing, and due to the increase of seizures, he needs frequent suctioning.
- James will always need someone with him 24/7 but does not qualify for nursing assistance
- He had been admitted to the hospital every November for pneumonia since birth
- He had a VNS implanted into his left chest cavity in September 2012
