Cant Come Up With A Title!!!

Hi there again. Decided it was time to write yet again and let ya know what was going on. Trinity had her Pentamidine infusion on June 15th last week and it went o.k but she was back to getting sick again for 4 days. I am not used to that anymore and boy was I in for a surprise! Well as she was being infused with the medication we were both eating lunch and everything was fine. She decided to lay down then "Bam" got sick.
We went home got some stuff done, then at about 10pm we got sick in our crib. Next day comes around we wake up and get sick again, (thank the lord i invested in a steam cleaner!!) Now she seems fine, I did take her up to Doernbecher to get her Prograf and her Valcyte and I decided to stop and see if her Doc could see us since I had no idea what was going on. She said that if it occurs that I need to take her to the Doc here in Mcminville and they need to run a urine sample to see if she has a bladder infection. (Um OK that does not make seance at all!!) But it stopped so that is good news. She is getting really independent and is about ready to walk here soon. She lets go of the couch and claps her hands! Scares me half to death but she is doing ok with it so far. Well running out of room.. Till Next Time!
Chantel R. Conn

It has been 1 year since Trinity's Kasi Procedure!

Hello there all. I know I haven't been keeping this current and I am sorry for that, just got really busy ect... Well as of June the 3rd it has been 1 year since her Kasi Procedure! I really can't believe it! I never thought that this time would go by so fast. When you are in the moment when you think your life is tumbling down you don't think you will be where you are now. Thank the lord for my faith and my Family keeping things together for me. Well other than that we had our appointment with the Stanford team on June 4Th and that went well. They said that everything went well and that everything seems stable at the time being. They are still kind of concerned for the CMV virus she still has but they don't want to get her Prograf levels out of wack then the CMV virus comes to take over or the other way around other than she would go into liver faliure. My Doc up at OHSU said that she can now get her lab work done 1x every 2 weeks so that is nice. We still need to go up for the Pentamidine infusions once every 3 weeks, and that is going good. Well other than that she is doing well and growing well. Well Till Next Time!

Live,Laugh,Love & Enjoy Life Chantel R. Conn