Trinity Anne News

Hi! Yes I know I posted the last post in the Conn Family blog. Oops! Nothing much has changed since I posted last. Still waiting on what is going to happen with her Prograf level. I think they need to wait to see what Stanford has to say. I am thinking about going down there in September to celebrate the 30th year of the Ronald Mcdonald house down in Palo Alto, Ca. We will see what happens. It would be fun though. She now walks all over the house and she is DaDa's little girl. She only wants me when Elmo is over and wants me to put another one on. She adores Elmo and we take her Elmo doll with her when she is getting an infusion plus her Elmo phone as well. She is trying to talk a little bit, but it doesn't make sence at all, but I just agree with her and say " Ya is that right?" She loves to eat, but ya think we could get her to gain weight ... heck no. She is getting some more molars now one on the top right and one on the bottom left. Well that is it for now. I will post some more pics of her soon.
Till Next Time.

Chantel R. Conn

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

Doing Fine

Hello again. Been ages since I posted something so I will update ya all. Trinity is growing like a weed. I know it doesn't seem much but in a month she gained a pound!! WHOO! So we are up to 17lbs 8oz. That is awesome for me to hear since she is progressing so well, especially a baby that had B/A. She does babble a lot more now and is really doing well with her eating skills. We are slowly trying to train her into using a sippy cup so that transition will be smooth as can be. Other than that no more updates that I can think of off the top of my scrambled brain! I will post some new pictures when I get the time and or when I think of it! Till Next Time.

Live,Laugh,Love

Chantel R. Conn

New Pictures Of Trinity!!!

These are super cute and I could not resist putting these up. Also is a short movie from my camera phone of her just a little bit ago in her crib. Enjoy!!1

A Day In It's Own

Hello again. HA! For those of you that read my last insert for this blog I promise I know how to spell Spring... guess I was just typing way to much and didn't proof read it to the best of my abilities. (Laugh's Out Loud) LOL! Anyways Trinity was being a handful today. She was helping Mommy "Unfold" laundry and was helping make the carpet wet with Mommy's orange pop that I was drinking. She is fast and is being really independent lately. She really was hollering and wanting to feed her self and I let her and she had it all in her hair and all over her clothes etc. She definitively got a bath at the end of that tonight, that was fun also since she has been in and out of the hospital and with her Picc line and all she really hasn't got used to a regular bath so the screaming begins. I have been helping her be calm and I just tell her "Look Splash Splash', then she calms down for a nano second then gets instantly mad. She does the hands up thing when she's done though, I ask her Up Up, then she stretches out her arms to me. We got the lab work back today, and its going up again. Her GGT is great but the rest like her white blood cell counts and her AST and ALT are kinda high. They are in the upper 100's. We are going back up to Doernbechers again on Monday for lab work since my PCP is gone for 2 weeks on Vacation. (Sighs) That would be nice huh! Miami, California, no maybe Arizona.. naw to dry. HA! Ok getting off track here. Well I'm going into la la land here so better get off here and get some more laundry folded. Till Next Time.

May God Bless You,

Chantel R. Conn

Sping Has Sprung!

Hello all. For those of you that live here in Oregon, it sure was nice weather this week! To hot for me during that 1 day of 80 deg but was nice to not see the rain for a few days! Trinity is doing great, she is getting her bottom right tooth in and both of her top teeth in at the same time as well. She is letting go of stuff and is trying to walk. She is very active now and hard to keep up with! She crawls and I swear she leaves a dust cloud behind her since she is so fast. Her labs look well and she is happy and getting very plump and gaining weight well. Other than that there is nothing that has changed much. Oh and she likes to scream out loud a lot! Well that's it.. Till Next Time.

Live,Laugh,Love

Chantel R. Conn