BiographyAfter a unremarkable pregnancy noah was born but at birth he was found to be growth restricted and only weighed 2.3kg (about 5 lbs) even though he was one day short of term. Noah's fighting a rare condition that has not been diagnosed as of yet. He spent a total of the first 3 months of life in NICU, (having all sorts of tests LP, bone marrow etc etc done) and also suffered from apneas. however at 7 wks he was discharged because they thought he was good to go home, he hadn't had any apnea for 2 weeks. However, on the second day home he had an apnea that needed me (mum) to stimulate him to breath. Back to hospital we went and we finally got to take him home again when he was 3 months old. He suffered from severe Apneas and requires home oxygen (and finally the apneas resolved few months before he turned 1). He also has neutropenia - low white blood cells that fight bacteria (has since birth, so every time he has a fever we have to take him to ED), genetic testing has come back negative. He has developed a very rare type of seizure thats hard to control at 6 months old. (he still has them daily). He is currently on the Ketogenic diet. He's had lots of tests done. LP, bone marrow, MRI's, bone scans.. You name it Noah's prob had it. We are constantly in the hospital for blood test and appts. In 2013 he was admitted over 11 times in 3 months due to fevers. One occasion spent 28 days in ICU/ ward.
Noah is a beautiful gentle soul that loves cuddles and fights hard everyday!
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