Well, I haven't had a chance to update the journal in a long time but Alexis is doing very well since the horrible stay in Seattle.  She has regained all her strength and is so cute.  Since the Seattle visit she has endured one more procedure.  Here bladder kept getting colonized with pseudomonas bacteria and she had to have her stent removed.  We did this at the end of May.  We also had some Chest X-rays completed for the pulmonary department in Seattle.  Pulmonary is currently holding up Transplant until her lungs are cleared.  I have not heard from Seattle in Two weeks.  They keep saying they will speak with the Surgeons and plan a date, but they never call me back.  I guess we should consider this a good thing.  Maybe they have sicker kids that need to be done first.  I worry that one day Alexis's small little kidney will just call it quits, and we will have to rush to the hospital and start dialysis.  We really want her to make it to transplant without Dialysis.That all being said, she is such a good girl.  We came home with yet another machine called a Bi-Pap.   This is a breathing machine that helps her Trachea stay open at night.  At first I didn't make her wear it, then I talked to my friend Nicole whose son uses one and she said it was great.  I started her that night and it was great.  She woke up smiling and with loads of energy.  I had never seen her heart-rate so low at night.  It was actually normal and her heart was doing much less work to achieve REM sleep.  Apparently this was something that Alexis really couldn't achieve without the help of O2 or Bipap.  Well she wore the thing for about 3 weeks straight before she started to not tolerate it anymore.  It's a battle but we are still trying.Besides all that Alexis is talking up a storm and is just so smart.  She plays her Mom and Dad all the time.  We just love her so much.

Well that's all for now

Barb