November 2011
1 post
Brady Co of San Diego rasies 32,000
Brady Co of San Diego on Nov 5th raised 32,000 dollars for Kourts krew. Kourtney herself was able to make it to the event and hold the giant check. Kourtneys mom was brought to tears. It was a day that durring the planing of Kourts Krew we had dreamed of. There are so many things that can be done to help the families in Kourts krew. Laura the founder of kourts krew was on hand to remind people of...
August 2011
4 posts
MAKING THE MOST OF LIFE
WOW…What a whirlwind of a weekend. I am so happy that kourt was able to have those 4 days out. She did have a good weekend and we did several of her to do things. She was pain free and happy. It was worth every minute to have her out. The tree outside of our Apt has a squirrel in it and she got to watch it run all over, she had Mikey (her dog) Her sisters spent the night and all we were...
THE RULES OF A TRANSPLANT KID
Transplant is amazing and while kourt is getting to do things she has never done before this is a treatment not a CURE. Most people think ….oh well she got her Transplant she is all better and ride off into the Sunset. Maybe in Hollywood where people come out of the OR with one IV and breathing their own. This is not how it really is. Transplant give you the chance to really FIGHT for your...
AMAZING!
In the words of sponge bob ( only allowed cartoons in hospital) It was the BEST day ever.
Well to start I cant wipe the smile off my face, I am so grateful, so excited, so amazed, so inspired by My daughter. Thank you kourtney for making me the Person and mother I am today. Today was the first day in over a year Kourt was without a IV pole . Then at rounds The amaing Dr Farmer said well” I...
SHOULD Laura be ALLOWED?
Really? I go home to straighten up and. spend time with the big kids only to have one of them be sunburned and not do anything, the other has a allergic reaction to shell fish and cant breath. I have to find beadryl and get her to breath, that plan does go over well and we are on to the next . the weekend was filled with cheer all weekend for the girls….the boy was still to sunburned to do...
July 2011
6 posts
Hello real world are you out there? Its me...
How do I do it? Is the question asked of me most…. I dont know how, I just do. The sad thing is that its Normal!! crushed ice ,pushing buttons for everything, chucks pads, and eating a meal in the same room a ostomy is been measured. Cath, labs, and output are the most used words of the day and when your child does a art project you use hospital suppiles. Where fun for them is getting into...
1 Year in the HOSPITAL today
A year ago today around 6pm I got a phone call…..It had been a very hard day for kourt her pain was getting worse and she was retching all day. We were going up on her fent patch and she was a beast that day . I had gone to my room to give myself a time out and I had just started to think …How can she go on like this? My phone rang and it was Transplant telling me they had a offer and...
RESIDENTS in JULY
I took two days off…well kind of. In those two days everything I did in the 3 days and 2 nights I was there non stop was lost….UGH!! Kourts G/J fell out 3 in and the J is snaked through her small bowel. The ballon that holds it in got a hole in it and it deflated. This happens this is something I cant control. In those two days kourt started retching …Feeds? I really just did not...
ALMOST A MONTH OUT
Kourt is almost a month out from transplant. It is so hard to remember the past few weeks. I have lost all account of time. We are trying to get back to the normal routine of me home on weekends but due to carmegeden I will not be heading home ( 405&101) in LA closed all weekend. Kourt is doing so much better. I spent two days and nights at the hospital non stop so I could watch everything...
From kourts mom
Thank you everyone for your support and caring so much for kourt and the rest of my family. I can not even express how hard this month has been. Yes, we did this a year ago, it should be eaiser? After spending the entire year in the hospital already exhausted then going into a transplant its just exhaustion on top of exhaustion …..June 15 was the best day of my life and the worst. I remember...
GOING in to CLOSE
kourt was going to be closed today her belly still open Gortex is covering her gift of life. Those amazing new organs that are giving her life. while this has had huge bumps in the road , we cheer at the sight of anything coming from her ostomy, when she shews me out of the way of the view from her TV, when she postest dressing changes or “fakes” sleep when the teacher stops by. I...
May 2011
4 posts
A promise
what is a promise? I promised not to Blog about something until I went to source to resolve the issue.
I made a promise that I would not blog, but ironiclly I want to blog about a promise that was made to me about the very thing I want to Blog about.
What are promises if only certain people abide by them? A threat? Interesting…..
Please
Today my goal is to make it through today,adovcate for kourt. This will be the only post for a while. The days nights and everyday life is just to hard to post and run kourts krew right now. The need to keep kourt strong and keep going and give everything to my other kids has taken every ounce of me. One mom, lots of places to be. Time to break before I do.
Pain
kourt had a really rough day. lots of pain. She had fun and made the best of it,the report from Mark was it was a very rough day.
Come on ORGANS!! We need you
Superheros
Well we have a full house of Superheros. They have been playing with each other all week in each others rooms. They kick the parents out and they just are Kids playing. Today Kourt was and Angel and Jesus played Wii , and pirates , Peter Pan, The playrrom may not have been open but it was on in room 41 today.
Kourt has been complaining about back pain since monday with walking and has had some...
April 2011
29 posts
WatchDonate online now
www.kourtskrew.com
GRATEFUL
I am so Grateful for the amazing people that Kourtneys illness has brought into our lives. While I HATE her illness it has brought so many people into our lives that we would have never met. I have met some of the most amazing people due to it. People who really care love, put up with and inspire. when someone is sick for this long and this sick,people dont know what to say . what not to say,...
EGGS, IV POLES, SERVICE DOG, PUMPS
Good Easter ..it really was . headed to LA from SD and got to the hospital around lunch. Kourt and the girls had our version of a egg hunt. Kourt would point and Kacee would run and get it. Like fetch but making your big sister do all the work. It was CUTE. kacee very good sport. kam was a Diva today she was tired from the “tramatic” (for me) Cheer overnight. They fell asleep on the...
HOLIDAY HOSPITAL STYLE
Last night was good for the girls …good for their soul! Ty was a good sport and only went downstairs when he needed food. ii am glad I pushed through the night to give the Girls so much needed normal fun.
Tomorrow is Easter and we are going to rock this Holiday HOSPITAL STYLE…..Looks like several of the Superheros have chosen to have a Hospital Holiday. We will hide plastic eggs ...
HOW? WHY?
My number 2 asked for a team party …..She being the one who knows just when to hit me with the question …I agreed to it…Out of guilt, under stress, in a insane moment…..All of the above. So yes I am crazy and there is no help for me.
I woke up at 5 am to drive home today because the Presidents trip to LA shut down roads and freeways on and off most of the day. It does not...
kourt doing well
Kourt is doing well and is having good days. She is having pain in the morning and is waking her up early. I have been getting up really early and today I fell asleep at the hospital. Kourt was not happy when she could not wake me up. Seriously Everytime I sit down she wants something. Its time for her to call n the nurse or get up and get it herself. My back is killing me!! Its not olny kourt who...
The Visit
Kourt and I have been lucky enough to have fun visitors. Peter Pan came to visit kourt and Sue came from vegas to see her daughter and came by to see Kourt and I. It was a nice visit. Kourt is spunky and sassy and feeling good. She is talking up a storm and the minute I sit down I am right back up because the princess needs something. I will take this over bleeding anyday. She has been earning all...
STEADY
Kourt is doing better her bleeding has stopped for now but with such a damaged bowel it will be back. It has been determined that this bleeding is internal , which I knew. GI had thought maybe it was superfical but that therory was squashed when blood came squirting out of her Fistulia. Being up all night just kicks my butt , I do it when I have to,need to. After this long of being on high alert...
BLOOD AND PAIN
Kourt has had pain since last friday on and off. It has gotton worse every day. Yesterday she told me “I am sick,very sick” I am worried , very worried. She started bleeding tonight at shift change and it has not stopped. She is nleeding from her belly and her Gtube. TX came to look at her and when he took off the dressing Blood poured ot of the fistulias …NOT GOOD! Right now her...
HARD TO WATCH
The hardest thing ever by far is watching your child have pain and not be able to do anything to help. I think I tend to freak out a little when she is pain. Maybe on the outside I look okay, but in the inside I am freaking out! Well maybe these days I demand and want it taken care of. I was told today by the resident “were trying to get her off daludid” Why? She clearly needs it and...
The day must be soon
Its just has to be after this weekend .its time for a break and time for that perfect transplant. I will accept nothing else…come on DR F…bring on the organs.today was tough but kourt did school and showered and did a special project in the playroon with sarah.it was just on of those days. Good night
Wish I Could
I really wish I could split myself in 4 and give each one of my kids a piece of me. I try to be everywhere and everything,to all of them. The last 10 months have been the hardest in my life. 300mi RT between my two lives. It’s almost like automatic pilot, do my kids really get me? Or a empty verison of me. I am there but not really? I find joy in being with all of them, they make me strong,...
NEED NEW ORGANS
Kourts belly is bleeding again. She is uncomfortable and asking to have her dressing changed more frequently. What she needs is a little more pain meds when she is bleeding and uncomfortable. I am still worried about Ty his pain is better but his nasuea is worse. If he is not better, tomorrow he is going to the Dr monday first thing. He had some labs that were off in a healthy kid it is alarming...
YAY for a another good day
Kourt had a good day she was happy and was very easy going and has been doing a amazing job cathing. She is just so on it now and such a different kid when it comes to cathing, getting poked for blood sugar. I am so proud of her. These are momentous things in kourts life. These two things a year ago would send her into panic mode. I am so glad she is able to cope with these two things. Kourt got...
Not much to say....Other then
It was a good day she got up and had a full day. nothing like the other days of pain and retching . They went back up on the bolus demand on the PCA and she is so much better. I may be that she was having pain from the bleeding or her fistulas were clogged but when she was having so muc pain. I dont care at this point what it was or is . I just dont want her to be in pain.
Today was a good day...
Arpil is Donate life month ...myths and facts
I was on the web and read a article that talked about organ donation and the question was asked Pro or Con? Most people post, I cant take it with me so save a life or something to that effect. There was one person who claimed to know people in the “medical field” and said that they would kill you for your organs if you were a donor. It also said if a 11yr old died then a 24 yr old...
A LONG DAY
Kourts belly started bleeding at 4am she woke up screaming in pain. It bled for most of the day. She did take a shower today that was all she could do. She was very quiet and did not say much most of the day. Kourt did not much and did not even do school because she just was in to much pain. They switched up her pain meds, she fell asleep at 6:30. I really hope this is a better night. We need...
Poor kourt
She was very good today. She earned her star fr the day. when she has 5 from the day and night shift she gets to pick a treasure from the treasure chest. I will take a pic tomorrow of how its set up. it is very cute! The nurse is the one who gives the Stars not me and at the end of shift they come in and put their name and date on it. She is excited and everyone has the rules and we are all on the...
cnn i report →
LIFE SHARING KOURTS FEATURED →
NATIONAL NEWS NETWORK →
NBC NEWS STORY →
ALANA'S ACHIEVERS EVENT →
Daisy rock gutairs news →
Jamye and daisy rock gutairs →
KOURT INTERVIEW MONDAY MORNING HOLLYWOOD →
Bored...Kourt is bored
Today kourt was bored and used her medical supplies at toys. She use the batidine sticks as face paint and then out a stick in her nose…Whatever it takes to make her happy. I laughed so hard. We were skyping when she did it. She talked to all her sibs today and her Aunt and her boyfriend and the dogs and the cat . It was the fun. We had planed a BBQ becuase it was 80 here yesterday today it...
APRIL..Its TIME
Its Time for kourt to get the gift she has been waiting for …she is so deserving of the GIFT OF LIFE!!
This girl will do great things she has to much fight not to have the best life new organs have to offer her!
TANGLED
Today was tangled movie all day. She played with all her tangled things and she took a shower and she sang tangled songs and wore tangled PJ’s to bed.Kourt is so funny evertime she watches the movie at the end she always gets mad that she cuts her hair…She is so funny . As if it will change? HAHA!! We are having issues with her portable suction machine and getting a working one. She...
March 2011
17 posts
TODAY....its not over yet
kourt has had a great day. She is happy ! Today was a BIG day for her . She is now cathing twice a day. She was retching this morning but she is doing so much better this afternoon. She is excited to sell her art work and it gives her something to do while she is in the hospital. She needs to make sure she makes enough for people to buy. I heard her talking to her nurse and she was tell her,...
I don't even know what to say.
So I wont….
Kourt is okay had a decent day, I am hanging tough…with a few tears
PLEASE
Please let them wake me tonight to tell me they have organs for Kourt, if that cant happen please let her have no pain , bleeding, a day of joy tomorrow. Walking with no pain and without her belly leaking poop on her feet. Please let her have good days until her gift of life gets here…..Thats all I want then I WANT TO TAKE HER HOME;-) hanging tough
5 Top things said to parents of TX kids and what...
THESE ARE EVERYDAY QUESTIONS FROM PEOPLE WE DONT KNOW
1) Did you know before they were born?
2) Their going to be okay right? (in front of sibs etc)
3) So? they were born like this?
4) Oh thats so sad, they dont look sick.
5) How do you do it? We will pray for you….whats your name?
WHAT WE WISH PEOPLE WOULD SAY
1) I would like to learn more about transplants
2) Organ donation is...
I think I should trademark the Kourt A Tude..
It could be a dance or a song or just a wide spread way to discribe the kind of day you have had. Kourtney in one day has so many emotions. Happy, excited, frustrated, mad, sad, happy, mean, nice , fierce, amazing and one of a kind…this girl has them all in one day. I want so much more for her. she needs to experience so much more in life then what living in the hospital has to offer she came in a...
This is kourts NEW BLOG CB site no longer the BLOG
After 9 months in the hospital kourt is just grumpy and bored. Its hard to see her not happy but even harder when she is so rude and mean. I spend the day wonder what is going to come out of her mouth. This is not how I raise my children but can I blame her ? NO! Does she have to behave? YES! Sick or not I will not let her be disrespectful. She needs this transplant physcially and mentally....
