06/25/05 - No news is good news

	We have not snapped a single picture of Lexi in the past 2 weeks (SHAME ON US), we will get some in this weekend.  We updated main pic on this page with one Luwana sent us Thanks!
	Little princess Lexi is now 9 months old and a little bit more then 5 months post transplant
	Still growing - official weigh in last week was at 12 lbs!!!!! (we think there may have been a mistake, that is higher then we expected)
	Lexi's pulmonary pressures are still coming down!!
	Physical therapy seems to be doing her some good, she can now tolerate being on her belly for few minutes, and has rolled over  couple times, we expect to see lots of improvement over the next 30 days, if we think of her a s 5 month old, she is where she should be
	Lexi enjoyed her first visit with her new transplant coordinator, she misses Flori though
	The Donor Awareness Council awarded us with the Donate Life Award: Donate Life Ambassadors This has come as a surprise for us, we have been trying to get the word out Apparently Lexi's story and media appearances has helped to get the word out and the Council has noticed Click Here to see the Donor Awarness Council's web site
	Mackenzie updates are back...for a while at least, many folks have asked about her.

06/08/05 - Growing like a weed - this is a long post, sorry, I can be a bit emotional

	Lexi is now at 10 lb 14 oz and growing She is catching up to the growth curve She has started to nibble on 'regular' food from the jar
	Her pulmonary pressures continue to come down Each week her pressures decrease steadily If she keeps this up she will be in the 'normal' range within 3 weeks Once in the 'normal' range, she will be weaned off the oxygen
	This past weekend we finally celebrated Lexi's coming home with a small party There are very few pics from the party Lots of friends and neighbors attended - we wanted to say thank you to all of you helping us throughout the past year By the end of the evening Lexi was very tired Everyone who attended got one of the new Donor Awareness T-Shirts, they are bright green this year Thanks for coming everyone!!!
	Since Lexi is a bit behind on her physical development (DUH!!!) she recently started twice weekly Physical Therapy to help catch up She has an 'In Home' therapist that is coming in twice weekly Hopefully she will quickly catch up From what we can tell, she is catching up but...we have never had a 'normal' child, so we really cannot compare
	So far, no rejection issues!!!!  YAHOO!!!!! Knock on wood No 'problems' other then the pulmonary pressures
	FL is leaving the team at TCH, BOO!!!!   No, not just BOO,  but a double or a triple BOO BOO BOO!!!! She is our #1 support person and primary medical professional contact Lexi's recovery is going very well.  Looking at the timing of this...it is as if FL's departure from the team at this time tells us that Lexi is 'out of the woods' and on to the next chapter of her life: a normal childhood.  Something we did not think possible one year ago when we first found out about Lexi's heart.   It feels like Lexi was FL's final triumph (a bit selfish of us, but it just feels that way) FL, we want you to know, you mean so much to us and Lexi Not just on a profession level, but personal as well FL, you listened to our gripes and complaints, you have been more then a shoulder to cry on, you have be come a cherished friend FL, you have been so kind, especially when you took so much heat from us when things were going bad FL, you were there when we struggled, when we questioned if there would be another day for Lexi, you hoped with us, you hoped for us FL, you helped to shield us from the worst of the bad (things were worse then we knew most of the time, ignorance is bliss they say) and you celebrated the good with us (but not enough celebration) FL, we are so sorry that you were not the one to get that very special 'page' that heart was available FL, we look up to you like no other, we have so much respect for you and those who do what you do...you have spent so much time and energy with families like ours.  We can only imagine how difficult your job is, we are but 1 family.  The lows are very low and very often, and the highs are very very high, but come to infrequently FL, you deal with so much daily heart ache, we cannot ever understand.  It takes more then a special person to do what you have done for us and families like ours FL, thank you for always being there FL, thank you for being you FL, thank you. Lexi will continue to seek out and visit 'Aunt' FL as often as possible We will miss her day to day support and instruction We promise to never give Lexi Ibuprophen or Sudafed without calling FL first - we will find her, wherever she may go When we finally get to show Breck to Lexi, FL, we hope you can be there - or perhaps for her first Super-G race?