My Little Chipmunk....

How do I start out.. hum. Well little miss Trinity is back at Doernbechers again. This time it is not for her liver *thank the lord* but she broke out in little red bumps and spiked a huge temp (104.1) over the past few days so back to the hospital we went on Friday at 8pm. Went in to the children's emergency room (which is very nice) and got back there in a hurry. Took her temp gave her some Motrin and her fever went down nicely. They poked and prodded her a few times trying to get a vein for her I.V fluids and finally got that dealt with. Then took some swabs of the bumps to see what is contaminating this little girls body. The Docs do not have the lab results back yet to what this is but they do know that her white blood cell count is pretty low. Other than that everything is working smoothly. They did have a heck of a time trying to get her fluids back in the same I.V port to day so they had to take it out and start all over again poking her 5x today and finally got a vein that is flushing well and is steady at the time being. I am at home currently taking a break from lack of sleep (Daddy is taking over for the night) and will be back up there in the morning to talk to the Docs to see if they have pin pointed what this is. She is exhausted tonight and fell asleep on Daddy since pretty much all day she has been screaming from getting poked or getting vitals done (which she dislikes a ton). The team is doing the best they can to try and figure this one out. I had at least 25 Doctors come in and out looking at her since they have not seen a case like this at all and if perhaps it is Chicken Pox they wanted to see what it actually looked like since it has been years. So for now they have her in a isolation room where we have to wash our hands and put on surgical masks,gloves and a gown to keep it away from other patients in the Hospital till they can figure this out. Well anyways I am off to bed to try and catch some ZZZZ. Will update as we learn what is going on with my toddler. Blog ya all later!

Sincerely,
Chantel R. Conn

1 Year Anniversary of Our Daughters Transplant

Hello all. Just wanted to take this time to say that as of tomorrow my daughter was undergoing her liver transplant down in Palo Alto Ca at around 12am. I am shocked to say that it has been 1 year since that time, and as the saying goes yes time does fly. She is still doing great other than her Iron being low and she gets more and more independent every day. I am overflowing with God's love that he gave our family the miracle for us to have this gift of life. We still have one more infusion to do this month on the 19Th and after that it is just going to be 1x a month blood draws to make sure everything is OK. She is loving life, getting into things,loves taking a bath with Elmo Bubbles, loves watching Elmo anything, playing with the cats, and the list goes on and on. To watch her is amazing from where she was last year. They thought she would be slow in learning from being in a crib 3/4 of her life, but to every ones amazement she is mentally and physically able to do tasks for her age. I will pray for the family's going through this now. Thank You for taking the time to read this, and to all of you who prayed,helped,visited,called,drove,ect, I can't thank you enough from the bottom of my heart how much that means to our family. Gods Blessings to all of you! Have a Happy Thanksgiving!

Sincerely,
Live Laugh, Love

Chantel R. Conn

*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