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

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

Hanging In There!

Hello again. Well we are doing ok for the time being. Trinity seems to grow every day and getting more independent as the days go by. She is still trying to walk and she gets frustrated if she try's and falls down, then the alligator tears come!!! Just recently she notices as of last night she likes to knock things down, remote, toys, any thing that likes to come tumbling down! Well that's about all I have to say for now other than her blood work looks like it is coming down again! Till Next Time

Live,Laugh,Love

Chantel R. Conn

Happy Birthday Pictures!!!

Happy Birthday Trinity Anne Conn!!!

HI! Today is an awesome mile marker in my book. Trinity is 1 year old today at 8:07pm.
She has been through so much since she has come into this world , and with God by her side she is doing great! She now crawls really well, and screams when she is excited and most the time she says "Da Da" and sometimes "Ma MA" and she likes to pull her self up on anything that can hold her little 16 lb frame. Her labs are looking good her GGT and ALT and AST, but her Prograf level was a little to high and they called me yesterday to get her labs done at the Local Hospital here in my town. She did really well and hopefully the numbers will mellow out. On April 9th we have an appointment at Doernbechers just a check up to see how everything is going, and then on the 20th we have a Pentamidine infusion early in the Am. Other than that things are going smoothly and I am thankful for that. The longer we are out of the hospitals the better she is doing! Well I am going to get going here got lots of stuff to do for her party tonight. My parents have offered to let us use their house to host her party since my house is small and we are having pizza and the usual cake and ice cream. She even has her own little cake that I bought her! I will post pictures tonight or tomorrow depending on how tired I am after it! Well Till Next Time!

Live, Laugh, and Love

Chantel R. Conn

New Baby Pictures

Back Home Again ...

Hello there..Just an update on what is going on with Trinity. She was in the hospital over the weekday and had her liver biopsy and her Picc line put in on Tuesday so she did well and is home now. The liver results came back from Stanford on Wednesday before we left the hospital and they said that they assumed that it was her CMV virus that was making her liver numbers (the AST and ALT Numbers)high, but it was her liver going into faliure to make them high. She is doing well (don't worry) and the Dr's are keeping close tabs on her to make sure that she is getting her medication and getting her labs done weekly at my local Dr's office here in Mcminnville. We have a blood draw due on Monday and then one on Thursday. She also got a little more bit of donor blood while she was up there due to her Red Blood cell count being low. That also is one of the crappy things that happens with the CMV virus is anemia, and low red or white blood cell count. So other than that things are going ok. It's a beautiful spring day today and I think I am going to go outside and do something worth while. So till next time.
Live, Laugh & Love

Chantel R. Conn

Going Back To The Hospital....

Hello there. Just wanted to update you and let everyone know what is going on with Trinity currently. I had recieved a phone call from my Dr's. office letting me know that I had to be at Dorenbecher Hospital on Monday the 9th before 9 am. I was curious since there was nothing schedualed until the 23rd of this month for her Petamidine Infusion. The Dr called me back and informed me that Trinity's liver numbers have doubled and that the CMV virus was present again in her system, as the last test showed a negative. So the Dr called Stanford University and they want a Picc line placed yet again, blood tests though out several days and they also want a liver biopsy again. Also they want to run her Cytogam early since her CMV is back in her system. So this is all going to take place tomarrow and I am keeping my fingers crossed that everything will go smothly as it has been and that we will be able to be home again soon. I will post and let ya all know once I have all the information ready and everything is all sorted out. Well that is it for now.. Untill Next Time.

Live,Laugh & Love,
Chantel R. Conn

Finally !!! Another Update

Hello again! I have been busy spring cleaning and totally spaced to update this more often. Trinity is doing really good. I went out to Babies R Us a few weeks ago and I bought her a Bumbo chair to help her sit up with out any support, and in a week she is sitting up by her self and she is clapping and happy. Also what has happened is that her tooth popped though the same day. It was so exciting! Her liver numbers were looking very well then they kinda spiked, but she is still at home and doing well. At this moment Donny is taking her to get the blood drawn at Doernbechers, since they do a better job at drawing from babies cause they do it every day. Other than that nothing much is going on. We have my son's birthday coming up here on the 27th then we have Trinity's a week later! I can't believe that she is going to be 1 year old. To me she seems like she is 6 months old. Oh and another thing she did get past 6 kilos which is 13 lbs!!! WHOO!! Well going to go get busy, Till Next Time

Live, Laugh, Love
Chantel Conn

Doing Fine

Hello again! Trinity is doing great! Went up to Doernbecher Hospital yesterday to get a Picc line placed for her because I was tired of her getting poked numerous times at the local hospital. So this is a line that can stay in for awhile and she doesn't even get poked for it. The GI doctor says that her numbers are looking well. She is where she should be. On Friday she is going in to get her CMV medication for a bit then back home. Then Stanford is coming back up to Oregon to check on their patients and Trinity being one of them. Still having problems with her eating. Been trying lots of things, baby food, etc and she just doesn't seem to be wanting to eat a lot of these things but when My Husband and myself eat food she seems to be very interested. She likes Cheerios I came to find out yesterday. She is really trying hard to crawl around on the ground. She gets up on all her knees and hands gets about an inch and then she flops down on the ground and gets mad sometime. It is cute to watch her grow everyday.
She loves to know what is going on every second, even if she is asleep and something makes a noise she wakes up and wants to be picked up. It is nice to have her home I just love it! Well anyways hope everyone is doing well. Have A Happy Valentines Day!!! Till Next Time.

Live, Laugh & Love

Chantel R. Conn

Doing O.k At Home!

Hello. Just a small update. We have been home since Sunday Afternoon and we are doing fine. She still isn't used to her play pen yet and Donny and I are thinking about buying her a crib since she is getting bigger. Just have to find the room!!!! Other than that she is babbling, and saying MA MA and here a few days ago I was feeding her in the hospital and I promise I heard her say MA MA NO, because she didn't want to eat. She has been getting sick on and off, which is probably due to us running out of her formula and we had to change her back to Pregestmil today because it is going to take a couple days for the office to get her cans of Neocate. Um lets see.. anything else.. She will have to go to get her blood drawn on Mondays and Thursdays, and she needs to have CMV medication and something else I can't remember once every 3 weeks. I just want her to have a hearty appetite so she can start growing faster again. She did though eat a full cup of sweet potatoes, but it really didn't settle in her stomach and she got sick this morning in her bouncy chair! Yep! When it rains it pours. Anyways got to go put dinner away and do dishes. So talk to ya all soon. Till Next Time!

Live,Laugh. Love,
Chantel R. Conn

SUPER TRINITY SUNDAY !!!!

Hello there! So is everyone excited about tomorrows game? Well I kinda am but I am really excited that Trinity gets released from the hospital tomorrow!!! WHOO! Hopefully they don't cop out at the last minute like they did to me just before Donny was leaving to Basic Training. I know it was all for the best but makes me kinda fume when the left hand doesn't know what the right hand is doing ... ya know what I mean? Well as for her scores Alt and Ast scores they seem to be steady as for now and that looks good. She is still on her Ng tube at the moment. The Doc said something about it being taken out before she leaves which would be awesome for me, since that is one less thing I have to worry about! I really can't wait to sleep at home! MAN THAT IS GOING TO BE ONE AWESOME SLEEP!!! Even though I am used to being here I still jump at every person that wakes me up.. and NOT being a happy morning person does not help matters either! SO WHOO!! I'd better get some sleep cause tomorrow is going to be one crazy day, hopefully I won't get stuck in traffic and get home in a timely manner! Well everyone take care, and see ya .. Till Next Time.

Chantel R. Conn

Live, Laugh and Enjoy Life!

Here We Go Again...

Update on what is going on. As of this Morning my Husband informed me that they are going to do an Ultra Sound today at 3pm, and that they are FINALLY going to put an Ng tube down her because they say that she is dehydrated so they are going to feed her at night through the Ng Tube and mix her formula and some Pedialite just for a couple of days so she can get hydrated. I had told the attending Dr's and the Dietitian about an Ng Tube here 1 week ago and they said that she would be going backwards. SOOO.. they obviously not listening to me... Finally they take action and do what needed to be done here last week. Then they are going to put her on an antibiotic 1x a week through her Picc line as well. Anyways that is all the information that I have as of now. When I learn something more I will update this as I go along. Till Next Time

Live,Laugh,Love,

Chantel R. Conn

Ok...I will break down the medical terms.. XD!

GGT-is a liver function test used int the diagnosis and monitoring of hepatobiliary diseases. Full name is Gamma Gluamyltransferase.

CBC-is a complete blood test, and it measures the concentration of white and red cells, and also platelets in the blood.

CMV-is Cytomegalovirus. (sight-o-me-galo-virus)Which is a common virus that either you or I have been exposed to. Well in Trinity's case since she is immune -o- pressed she got it and it infected her badly. It is a member of the herpes virus family and can be dormant for a while and then flare its ugly head again. It is not infectious by touch or anything like that and it is not associated with food, water or animals. It is possible she got it from her liver transplant also. Who knows.

ALT- is alanine aminotransferase. It is a blood test to measure if your liver is damaged or not. ALT are chemicals that the liver cells release when they are damaged or sick. ALT is not a perfect test for liver damage, but it shows only the liver cell damage taking place the day when the blood was drawn. And no one really knows how much damage is taking place unless a sample of your liver(Liver Biopsy)is examined.




AST- is another blood test to just be used primarily to diagnose and monitor the course of the liver disease. And the ALT is usually one blood test to go with this one as well.



Ng Tube- is called a Naso Gastric tube. It's just a small tube that goes through your nose down to your stomach. Then you are hooked to a machine that has a formula or food bag off of an I.V pole and it feeds you 12 hrs in a day or 24 hour period.

Him- yes I am slept deprived and I did not say my Husband "Donny", until the last bit of my blog! So yes him is my husband Donny... XD!

Still Up At Hospital....

Hello again! Well as of tomorrow Trinity will be a Doernbecher Hospital for a month straight. I can't believe the time has gone by so fast. Well so far as of what happened last week I had a really crazy time with what was going on with Trinity and got told so many different things. The week before last she went under another Liver Biopsy to get 2 more samples to see what is going on with her. Then here last Wednesday they told me that the Pathologist at OHSU said that they were sure that she was rejecting her liver. WOW! So then I had to call Red Cross to have them get a message to him letting him know what was going on. ( He is in the Army National Guard and was in South Carolina at Fort Jackson going to basic training.)Then he finally got home on Friday. Then before he came home they finally got the slides down to Stanford University and there Pathologist said that she is not rejecting her liver, and that they are going to run more tests to see what is going on with her. They are also concerned about her gaining weight and since she has been off the steriod Prednisone her apatite has dramatically decreased... The most she will take is 4 oz every 3 hrs, and that is just some of the time. Before they took her off the steroid she was taking 6 oz every 3 hours. I still have no idea when she is going to get better to be sent home. I just feel like they are scratching their heads and don't know what to do. Her CMV virus that she was hospitalized for here 4 weeks ago, the majority of it seems to be going away, but her ALT and AST scores have jumped sky high compared to what they were when she was just starting to have CMV virus. Her GGT scores are O.K and they have settled down, and her Biliruben levels and CBC are fine. Before she had the liver biopsy though, she did have a blood transfusion of 0+ blood beacuse her white blood cell count was low and she was getting mild anemia. She looks great now it's just getting her to eat. I really want them to go back to the NG tube but the Dietitians said that would be putting her a step back and they changed her formula to Neocate now instead of Pregestmil. I think it smells and I'd bet it tastes worse. Then they just added here this week Polycose to her formula to give her more calories. I just wish I could make her better so she can come home and we can all be in one place instead of us being here and going there and so on. But such is life I guess... Other than that she is doing fine. Donny let me kinda have the night off and I have our son here at home so he can go to school tomorrow, and I need to tidy up the house a little. So we will take turns till she gets to come home. Cause up there you don't get much sleep at all. Well I need to get some rest. Sorry it's been so long since I updated!! I will try and work on that!
Till Next Time.

Live..like it's your last day
Laugh..till your stomach hurts
Love..like you have never been hurt

Chantel R. Conn

I am Seeing You Next Year!

Hi there pupils... Well we are back at it, back to the hospital we went on Monday December 29th 2008, up here at Doernbechers at OHSU. So far what is going on is that she had to be admitted because her liver enzymes were high and they did not know if it was early rejection, so they wanted us to get in here as soon as possible. So we did that and had to wait until the next morning for an ultrasound to see her bile ducts. Those turned out fine and then they did some blood work to see how her Prograf (pronounced Pro-gr-af) levels were and those are kinda hay-wire. so they think that she now has a virus of CMV (Cytomegalovirus, it is pronounced Cyto-megal-o-virus) that is one of some viral infections that occur most frequently in transplant patients. It shows is ugly rear end in the first months after transplantation. She will now also have this to deal with for the rest of her life also. She is being treated for it now as we speak and looks like her liver enzymes are going down 2 points and we will get a better picture as the days go by. This treatment could make it go away and only show this one time or it could stay around for the rest of her life, at this time the Liver Team does not know this. Only time will tell. This virus is also in the family with the herpes virus as well. Also to note this happened also because she is immune suppressed due to her having the medicine Prograf so she will not reject her liver. Just some more mountains to climb for us but the way that I am handling it is that " The lord only gives you what you can handle". So I am dealing with it doing OK for the most part, just really not looking forward to Monday when Donny leaves for Basic Training. Going to be a really hard day. 4 months to me is going to seem like decades... anyways I'm going to sign off here I really need to eat and get some rest. Till Next Time.

Live, Laugh , Love,
Chantel R. Conn