*NEW TRINITY PICTURES*

1)Fishy Face

2Costco Horse

3)Dr's Office

4)Dr's Again

5)Striking A Pose

New Updates Again!

Hi there. Been awhile since I posted on here. Actually been a month. Anyways, so far here is the news on Trinity. Stanford came down last Thursday and they are worried about her EBV Virus. They said that if they cannot get it under control that they will need to scope her mouth. They said that this virus she has now can make them enlarge and cause major problems. They also said that she is way low on Iron in her body and today just picked up her Iron Supplement so she is on that now. She looks a little pale but she has a hearty appitite still which is good. Now we just have to get her broke of being spoiled (like that is going to happen anytime soon lol!)So other than that nothing much is going on with her, she enjoys watching Elmo a ton and carrying her baby doll around and patting it on the back. She also enjoys ticking off her brother by going in his room and carrying out the kittens.... ( I think it is funny really I do!) Well everyone enjoy Trick or Treating with the little ones here this Saturday and I will post more when I have more interesting things to type about!

Till Next Time...

Have A Spooktacular Halloween

Chantel R. Conn

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