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!
Saturday, May 18, 2013
Thought It Was Time For An Update!!!!
Thought now was a good time for an update on Trinity Anne. She is doing swimmingly and just turned 5 April 3rd. We had an awesome Birthday Party for her and she wanted Minnie Mouse for her birthday theme. Just before her Birthday she decided to have her ears pierced and I went and got them and did them myself. She was and still is so excited! She keep bugging me for "dangle earrings" its too cute! As for her health, her labs are going OK at her local children's hospital and we are going 1x every 3 months. Her prograf level was kinda low and I didn't like it too much so I emailed her doctor and she said as long as she is not having vomiting or diarrhea she is OK no worries. So we will go at that. She has been going to Preschool regularly and enjoying everyday of it that she gets to go. Once in awhile she has to stay home and she gets ticked at me but I just reassure her it is for her own good and the other kids as well and she can see them next time she goes to school. Trinity is excited to start Kindergarten and wants to play soccer this fall. I am so thrilled that she is doing well and is growing and thriving and loving life. I am proud to be her mother and proud to say she is mine. Well until next time .. TTFN ta ta for now!
1)Pic is me and her being silly last summer
2)Is my fav from my IPhone !!
3) July 4th 2012 another fave pic!
1)Pic is me and her being silly last summer
2)Is my fav from my IPhone !!
3) July 4th 2012 another fave pic!
Thursday, February 3, 2011
The Month Of Love and Spending A Lot Of Money....
Hi. Been awhile since I got on here again so I decided to update! Trinity's lab work looks great! Here Prograf level increased to 3.5 so that is good to hear and then her EVB was negative this time so that is also good to hear. Haven't got a letter from the Docs yet but it seemed like chemicaly things were going well in her favor. Other than that not much going on with her. She is acting very onery lately and her new word is NO now which I don't like and am teaching her if she back talks and tells me NO then she goes to time out. So for now the past 2 days she says NO and then says " I don't want to go to the naughty chair!" Pretty hard not to laugh at her! She is getting smarter by the minute! Anyways that is all for now
Till Next Time
Chantel R. Conn
Till Next Time
Chantel R. Conn
Tuesday, January 18, 2011
Doernbecher Follow Up Thur
Well Wow. Thought I might take some short needed time to update this since it has been so darn long. Well Trinity grows each and everyday more and more and amazes me more and more also. Lately her new trick is taking all the dirty laundry out of the basket and turning it upside down as her step stool and turning on and off light swithches. New nickname for her is stinker cause that is what she has been lately.
I decided to keep a sharp eye on her now beacuse of yesterdays fiasco .. I needed to use the restroom and she in 2 minutes took her dolls hat off and decide the fish needed to be fed a plastic hat.. *sigh* I am defenatly purchasing a fish tank child lock A.S.A.P. As for her blood work goes last month they are not happy that her Anti Rejection medication is low but they can not increase it untill they get rid of the CMV virus she has had on and off since transplant so they are eye balling it closely.
They say she is growing ok, but now after all this time saying she is short and to "Big" for her height to weight. (Took forever for her to gain this weight, even was on Pedisure with meals) So they are keeping tabs on that also. Other than that nothing else but her sleeping routine lately is bothering me so I am going to talk to them about that Friday. So lab work and GI doctor visit at Doernbecher and we will see how that goes.
Till Next Time
Chantel R. Conn
I decided to keep a sharp eye on her now beacuse of yesterdays fiasco .. I needed to use the restroom and she in 2 minutes took her dolls hat off and decide the fish needed to be fed a plastic hat.. *sigh* I am defenatly purchasing a fish tank child lock A.S.A.P. As for her blood work goes last month they are not happy that her Anti Rejection medication is low but they can not increase it untill they get rid of the CMV virus she has had on and off since transplant so they are eye balling it closely.
They say she is growing ok, but now after all this time saying she is short and to "Big" for her height to weight. (Took forever for her to gain this weight, even was on Pedisure with meals) So they are keeping tabs on that also. Other than that nothing else but her sleeping routine lately is bothering me so I am going to talk to them about that Friday. So lab work and GI doctor visit at Doernbecher and we will see how that goes.
Till Next Time
Chantel R. Conn
Wednesday, November 17, 2010
2 Year Transplant Anniversary
WOW!! Where does the time go.. really. I mean I can remember just yesterday being down in California telling her good by as she got wisked away into a room and had her transplant done. She is doing fairly well, even though we have hit some bumps in the road just recently, but all in all she seems to be doing great. She does have mishaps lately like drinking to fast and then getting sick everywhere. But she is just being 2 and independent now more than ever. I am so proud to be her mom, even though she tosses her self down when she doesn't get her way and I get pretty frustrated. God has blessed me and our family and that I am grateful for. Well other than just a short write on the blog I have to go now. Time for the other meds to be adminsitered to her. 10 am and all is well..
Give, Hope, and Pray Hard
Happy Thanksgiving 2010
Chantel R. Conn
Give, Hope, and Pray Hard
Happy Thanksgiving 2010
Chantel R. Conn
Friday, August 27, 2010
Went To Primary Care Physican
Hello all again. Well yesterday at about 8:30 am we went to Trinity's physican here localy in our town and she checked out great with a clean bill of health. He read me a little bit of the synopsis of what they were thinking it was since 2 of the Dr's were not agreeing with one another. One thought it was Staph Infection and the other thought it was Chicken Pox. So really they still didn't know after all this time and 15x pokes and 2 blood draws later. So the Dr here just said to keep her on the antibotics and that she would be good to go, but if any more bumps showed up to give him a call immediatly and take her in to see him. So she is looking great and is back pretty much to her normal self. Just have to wait to get her re-adjusted to home life since she was up there for almost a week she wasn't sleeping good and that takes time for her to adjust back to her schedual at home. Well that is all for now.. till next time.
Live, Laugh, Love,
Chantel R. Conn
Live, Laugh, Love,
Chantel R. Conn
Monday, August 23, 2010
We Are Home For Now...
Hi all. We got released today at about 1pm from Doernbechers. They are still treating as Chicken Pox even though even today they still did not know what it was. She is finally eating more than what she was when we left. She is comming along well and they have her on an Antibiotic for 7 days 3x a day for her condition. Other than that we just have to call if there is going to be any more flare ups or if we have anymore conceirns at all. Well all thanks for the prayers and we will keep you informed as to what is going on.
Love,
Chantel R. Conn
Love,
Chantel R. Conn
Sunday, August 22, 2010
New Updates
Hey there friends and family. So far no news what so ever on what Trinity has. She is hanging in there and being such a big girl with getting poked daily ect. All we do know is still that they are treating her condition currently as Chicken Pox ( they do not know if it is still at this time) and have her on several antibiotics oraily. The bumps are going way and are looking better daily. I will try sometime late tonight to post a new picture of her. So I guess no news is good news.. *sigh*
Till next blog,
Love,
Chantel R. Conn
Till next blog,
Love,
Chantel R. Conn
Saturday, August 21, 2010
Some News Not Much Though!
Ok so far doing ok and hanging in there. She has had just 1 test come back negative for the herpes virus so that is awesome news but still do not know what she has as of yet. She has been poked so many times again today she is exhausted as all can be and is finally able to sleep since she kept Daddy up all night and all morning long. I will post as I go along and call imediate family members to keep them all updated.
Please pray for us if you can!
Love,
Chantel R. Conn
Please pray for us if you can!
Love,
Chantel R. Conn
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