1 year since coming home

25th May 2010 1 year since Noah came home from hospital and ironically we were back again today to see his pediatrician Dr Conway. His kidney scan from last week had come back clear. His brain scan had showed increase swelling of the ventricles and lining. Diagnosing him with periventricular leukomalacia or PVT in other words brain injury of prem babies. His head has swollen to double his size and is now a worry about needing a shunt to decrease the fluid on the brain before is causes more damage. He is due for another scan in 3 months and head measurements. With his fontanel open will mean the brain can swell more and not make huge problems but once that is shut can be life threatening so need to follow it up. The scan showed increase ventricle size and extra ventricle swelling and ‘white matter’ dead spot lining. Also that this is not related to PPS is a prem baby thing. That makes me feel worse! Due to the structure of the brain and Noah's PPS means could be due to structural abnormalities which I kind of hope. Its suppose to affect his learning but his motor skills seem fine so far but I guess it is just a waiting game. Conway also referred Noah onto respiratory clinic for his breathing issues. They will check his adenoids and might refer to CPAP for sleeping to help with his breathing at night and snoring. Another referral also went out to Endocrine. They will look into hormones and see if growth hormones will help Noah. Genetic saw hi yesterday and for him to be diagnosed the blood test causes 1400Euro or $2000AUD we can pay for it ourselves or apply for a grant to get the WCH to pay. This would mean tho if I was to fall pregnant again we would test the baby to see if it had PPS too. This would also confirm both Aaron and I are carries of the syndrome. Not sure what were going to do have till next week to work it out. He has also been seen by speech pathology this week to help with his eating. Her ideas seem pretty straight forward so will try them. As for his lack of talking I swear he said ‘Mum’ today. They think the brain injury might affect his speech so got games and songs to sing to him. I don’t think the lady got the fact there are 4 kids in the house he is very stimulated with noise. He is going to have another hearing test later. So lots more happening really hoping all works out. The idea my baby has a brain injury scares me even more that the fluid isn’t reducing but increasing.