Guess who woke up at 0300???? It's ok, though, because he was in such a FANTASTIC MOOD!!! He helped himself to a bath and kept the bed dry, so I really can't complain. He was a joy to put on the bus and we are off to a GREAT DAY!!!
Where life began for this handsome guy was at National Naval Medical Hospital, Bethesda, Maryland. He came on his due date with complications (blood glucose was at 19 and his APGARS were 3/3/9) that kept him in the NICU for approx 3 weeks until the doctors could diagnose him with Panhypopituitarism with Septo-Optic Dysplasia. Not only do newborns look....ummm...."funny" (I'm trying to be kind here), but Miguel looked like a MONKEY!!! Just the positioning of the little monkey and, apparently, the poor guy wasn't blessed with the best DNA from me and his father. Being obtuse Jarheads that we are, there wasn't much hope for him in the I.Q. department, either, if you know what I am saying... ;) However, he manages to defy the genetic odds because he is RIDICULOUSLY SMART!!!
During his 3 week stay, he was seen by pediatric neurologists, endocrinologists, high risk neurodevelopmental pediatricians, a geneticist, opthamologists and received a battery of tests (2 lumbar punctures, MRI on his brain, ultrasound on his brain, passed radium through him in x-ray, he was under bilirubin for jaundice, etc.). The poor guy had four different IV sites because his veins kept blowing out and he had more leads than a baby should ever have or need. The doctors took good care of him and Miguel had quite the entourage of MD's jockeying for the role Primary Care physician because 1 in 10,000 children are diagnosed with this, aka DeMorsier Syndrome. He was quite the phenomenon among the specialists.
Jose (my ex) and I left Bethesda with Miguel and a FIRST CLASS EDUCATION in the brain, the formation of Miguel's brain, his deficiencies, implications, vague prognosis, genetics, Endocrinology, endocrine failure, signs and symptoms of failure, medication, dosages, purpose of, signs and symptoms, how to administer all meds, how to triage and the chosen Primary Care Physicians HOME NUMBER, CELL and work number. This woman, Dr. Cydney Fenton, pediatric endocrinologist, is PHENOMENAL!!! She is just amazing and she impressed us from the beginning. We were so glad we chose her!
We discharged the sweet guy with his Winnie the Pooh outfit and matching beanie in his car seat and a garbage bag (literally, it was a 13 gallon, clear garbage bag) of medications and supplies. There had to have been 6 sharps containers, boxes of insulin syringes, 3 mL syringes, blood glucose machine, boxes of alcohol swabs and whatever other medical supply necessary to sustain this little monkey day-to-day. What we didn't receive was a visit from a SOCIAL WORKER!
BOOOOOOOOO!!!!!!!!!
What the HELL is a social worker? Why would I need one? What can they do for me? For Miguel? I don't even know what they do, well, when I was in high school I'd get in trouble and have to go see my counselor, the social worker or the police liaison....so what does a social worker have to do with a newborn? Maybe I need to remind you that we were obtuse Marines...
Miguel was jilted by the social service field. None of the medical professionals, out of the BAZILLION that we saw, no one mentioned Social Security (because members of the military are paid crap), early intervention therapy that he is automatically entitled to based on his diagnosis, local social service agencies that could provide this service or any insight to his education or what we can do with him at home to help him adapt to his surroundings, being a blind child. We didn't find any of this out until he was nearly two and we were about to rotate out of Quantico, Virginia and home to the Chicago area.
I can only imagine how he could have developed if these supports were in place...
"By three methods we may learn wisdom:
First, by reflection, which is noblest;
Second, by imitation, which is easiest; and
third by experience, which is the bitterest."
-- Confucius
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