Been awhile since I have posted in Trinity's blog so decided before I leave to update those who still follow this blog. We have an appointment today for 3:50 to have the team talk to me and Mr. Conn and make sure that our daughter is on the right track still. Her numbers went low yet again and I hope and pray its just a small hiccup. I did see in fact that her EBV was trying to flare up and not really looking for that at anytime since the last it came into her system it was a month in the hospital. I am praying daily for things to go smoothly and that we can avoid the hospital visits at all. So will try and remember what they said today and if anything major comes up I will inform all.
Live, Laugh and Love
Chantel R. Conn
Wednesday, August 1, 2018
Sunday, April 29, 2018
Saturday, December 23, 2017
Saturday, April 15, 2017
HOLY GOODNESS!!
Been thinking about this lately and WOW.. I have really procrastinated this blog!!! I admit sometimes I forget I even have it on here still and some days I think.. oh Ill get to it .. like as a mother getting the laundry all caught up (lady's it is a daily struggle and I totally know how you feel!)
Ok back on track with Trinity. So we did in fact celebrate her 9th liver transplant birthday back in November and that was good times Just her , myself her brother and my husband at home. She also had a biopsy back I want to say October due to possible liver rejection due to change in her medication but good news is things are fine and she is still going strong. A few days ago she has 12 teeth pulled out due to them being cavity ridden and the dental team at OHSU did not want to take a chance on her getting an infection and having to deal with anything else that can arrive down the road so they got rid of almost all her baby teeth so that is hard to deal with. She is on a penicillin oral medication right now in case anything wants to rear its ugly head into her system. They wanted to start her on it not because she has an infection but in case one starts from all the germs in her gum line being wide open. Sooooo.. other than that she is doing well and growing like a weed. Still getting monthly lab work done at OHSU and she is not crying any more when she goes to have a poke put in. In all seriousness.. she is the most brave, strong wonderful little thing I have ever met. She has been through so much in her short little time of 9 years and for her to go thru all of that and literally meet it head on and pretty much say whats next is incredible and this little girl calls me "mommy"!
Anyways I am sorry for not keeping this current and I will try my best to at least up date every few months!
Till Next Time
Live like its your last
Love like its going out of style
Laugh daily its good for the soul!
Chantel R. Conn
Just Before Teeth Extraction April 13th 2017
Nap After Teeth Extraction April 13th 2017
Ok back on track with Trinity. So we did in fact celebrate her 9th liver transplant birthday back in November and that was good times Just her , myself her brother and my husband at home. She also had a biopsy back I want to say October due to possible liver rejection due to change in her medication but good news is things are fine and she is still going strong. A few days ago she has 12 teeth pulled out due to them being cavity ridden and the dental team at OHSU did not want to take a chance on her getting an infection and having to deal with anything else that can arrive down the road so they got rid of almost all her baby teeth so that is hard to deal with. She is on a penicillin oral medication right now in case anything wants to rear its ugly head into her system. They wanted to start her on it not because she has an infection but in case one starts from all the germs in her gum line being wide open. Sooooo.. other than that she is doing well and growing like a weed. Still getting monthly lab work done at OHSU and she is not crying any more when she goes to have a poke put in. In all seriousness.. she is the most brave, strong wonderful little thing I have ever met. She has been through so much in her short little time of 9 years and for her to go thru all of that and literally meet it head on and pretty much say whats next is incredible and this little girl calls me "mommy"!
Anyways I am sorry for not keeping this current and I will try my best to at least up date every few months!
Till Next Time
Love like its going out of style
Laugh daily its good for the soul!
Chantel R. Conn
Just Before Teeth Extraction April 13th 2017
Nap After Teeth Extraction April 13th 2017
Monday, October 26, 2015
Coming Up On & Year Liver Transplant Anniversary
Wow... where does time go. Just received the letter in the mail that Stanford Team is going to be up at Doernbecher Nov 18th 2015 . Seems like just yesterday I was changing her nasogastric tube and setting up her feeding machine so she could eat and nap... *shakes head* Nothing much is going on with her, she is loving 2nd grade and enjoying living out in the semi country. She had an awesome summer playing with dirt and bugs and salamanders. She loves fishing and for her being 7 she is very patient with waiting for one. That's about it for now. Till Nov 18th 2015
Live, Laugh , Love
Chantel R. Conn
1) The Conn Family Oct 2015
2) Donny & Trinity
3) Donny & Trinity being silly
4) Awesome Sky On The Way Home
Live, Laugh , Love
Chantel R. Conn
1) The Conn Family Oct 2015
2) Donny & Trinity
3) Donny & Trinity being silly
4) Awesome Sky On The Way Home
Monday, November 17, 2014
6thYear Liver Anniversary 2014
6TH Liver Anniversary 2014
Today we celebrated a 6th year liver transplant anniversary for Trinity and it was simple and lovely. She decided she wanted a Red Velvet Cake at our Cake store we always go to and then she wanted lasagna for dinner.. The lasagna didn't turn out too bad but the cheese burnt to the bottom thanks to me talking to her father too long right after he got home from work (OOPS!)
SOOoooo.. she decided to finish up her night with a game of Go Fish with her father while stealing tiny bites here and there while the movie Ice Age was playing in the back ground. She lost but she did gain a sense of how to act when you lose a game...Now we are trying to wind down and head to bed after a huge sugar high from the cream cheese frosting (UGH). Stanford team did come up and do a yearly check up on her and she is still doing well with her labs (still 3 x a month and Liver Visits to OHSU 1x a year, being no complications) Good news is that she decided since she is taking an acid reflux medication in a capsule that she wanted to give up her liquid form of her medication and go to pill form. The doctors did not have any problem with that so now she is taking 1 prograf pill in the morning and her cellcept pill is only once a day and she takes 2 tiny pills of prograf at night. She is transitioning wonderfully and she feels like she has more control and enjoys not having to take the chalky cellcept. So that is that for 2014 for now puplis...
Till Next Time :
Chantel R. Conn
Pictures
1) Growler Boys Room
taken by Mrs. Fitzgerald
2) Home with Mom
making silly faces
3)November 13, 2014
Waiting for Liver Team
from Stanford to come
and visit @ OHSU
Today we celebrated a 6th year liver transplant anniversary for Trinity and it was simple and lovely. She decided she wanted a Red Velvet Cake at our Cake store we always go to and then she wanted lasagna for dinner.. The lasagna didn't turn out too bad but the cheese burnt to the bottom thanks to me talking to her father too long right after he got home from work (OOPS!)
SOOoooo.. she decided to finish up her night with a game of Go Fish with her father while stealing tiny bites here and there while the movie Ice Age was playing in the back ground. She lost but she did gain a sense of how to act when you lose a game...Now we are trying to wind down and head to bed after a huge sugar high from the cream cheese frosting (UGH). Stanford team did come up and do a yearly check up on her and she is still doing well with her labs (still 3 x a month and Liver Visits to OHSU 1x a year, being no complications) Good news is that she decided since she is taking an acid reflux medication in a capsule that she wanted to give up her liquid form of her medication and go to pill form. The doctors did not have any problem with that so now she is taking 1 prograf pill in the morning and her cellcept pill is only once a day and she takes 2 tiny pills of prograf at night. She is transitioning wonderfully and she feels like she has more control and enjoys not having to take the chalky cellcept. So that is that for 2014 for now puplis...
Till Next Time :
Chantel R. Conn
Pictures
1) Growler Boys Room
taken by Mrs. Fitzgerald
2) Home with Mom
making silly faces
3)November 13, 2014
Waiting for Liver Team
from Stanford to come
and visit @ OHSU
1)
2)
3)
Wednesday, August 27, 2014
Has been Way Too Long....
Sitting here today with my parents going through pictures of how far Trinity has gone in these short but long 6 years.... Gosh how time fly's! It's faint but I can remember bits and pieces of her transplant and begging God to just give me on miracle and a Christmas wish that all I wanted was my daughter to have a fighting chance to survive
. Broke my heart a couple of days ago as a mother and her sister were talking to me about her daughter needing a heart transplant and my heart broke for her, regardless of it being a heart,liver,lungs or kidney I can relate to what the mother is going though. Months of waiting, labs after labs after more labs etc. I told her she was in my positive thoughts ( since I didn't want to offend) but I silently prayed while checking out my next customer "please lord give her strength and watch over her & her child"...
Trinity is doing pretty good ,she is starting the 1st grade. On September 2nd and is very excited since her best friend is in her class! I can't wait! No tears I hope for me though! Well until 1st grade pics are taken ...
TTFN
Ta ta for now!
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