04/27/05 - All is well at home

	Lexi weighed in at 9lb 10oz Monday - she keeps gaining
	Still on oxygen The professionals want to wait before taking any interventions on her pulmonary veins The hope is that she will soon grow out of the problem
	Lexi is starting to 'talk' a bit, her sounds are weak and raspy, but she is making them
	She has a new toy she lays in, when she kicks her feet she turns on and off the music and moving items, she loves playing in it pic

04/17/05 - Lexi is home, and seems happy

	All is well, Lexi got the final ok to move home Thursday morning She is 3 months post transplant At this point more then 1 hour away from hospital is ok She is out of 'Acute Rejection' danger
	The professionals tell us she is still sick, so we still need to keep an eye on her, and watch for any rejection signs
	Lexi will now go to transplant clinic only once per week
	She is not eating as well, but it could be the change of location
	Lexi still on oxygen, decision to cath or not should come next week

04/14/05 - Ready to move HOME!!!!!!

	Lexi will be moving home Thursday if all goes well at her check up Thursday morning She is 3 months post transplant and has shown no rejection She is allowed to be more then 1hr away from hospital We can't wait to get out of the apartment and into our regular home
	Lexi is doing very well, she weighed in at 9lb 5 oz on Monday She is becoming quite the chunk She eats/drinks/inhales about 3 oz every 4 hours or so She seems quite normal
	One problem, she is still on oxygen, the pros think her pulmonary veins are causing some problems She is on oxygen to keep her flows and pressures in these veins down No one is really sure why she needs this When the oxygen is 'turned up' the pressures go up, when the oxygen is turned down the pressures go up, really odd The thought was that she would grow in to the veins, or grow out of the problem, they still believe that, but wonder if that is best - the are not 100% sure what the problem may be possibly a 'thin' spot causing an hour glass effect on her blood flows They may 'cath' her heart and veins next week to get a better peek Options to repair 'expected' problem Balloon angioplasty procedure to stretch the veins a bit Place a stent to stretch the veins Surgical repair  (we hope not)

04/04/05 - Lexi is now 8 lb 8oz - Ready to move home to Larkspur!!

	Things are going well, Lexi has a cold that just won't go away Unlike regular kids her colds last a long time Her system cannot fight colds well since she is so suppressed with anti rejection drugs
	We are planning to move to our 'Regular' home in 2 weeks, out of the apartment!!!
	Her pulmonary pressures are still high the professionals believe the problem is related to her anomalous pulmonary veins, an additional problem she was born with (which helped to make her 'extra sick' prior to transplant) The veins were repaired during transplant The veins may be too thin, causing too much flow/pressure Her oxygen volumes will be adjusted the next week or so to see how this can be controlled If oxygen changes do not make a difference, catheterization may be done to help adjust the size of these veins (similar to angioplasty) More information later - as we know more
	Lexi was examined by Neurology last week, follow up to seizure activity earlier in the year Keeping Lexi on Phenobarbital for a few months to be sure Will want to look at her again in 4 months to do EEG and check for development delays and any other seizure activity FWIW, we have not noticed any seizure activity