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 bleeding when walking. She does not walk a whole lot but its getting less and less because of the bleeding. She strated bleeding a lot more today then she had been the past two days. Not as much as she bled a week ago with me. She is stable and they are watching her numbers. I am hoping that may brings fresh flowers and new organs.

I am really sorry the everyone has to be in the hospital but so greatful for the moms and dads and just the amazing kids they have raised they are all so much fun with larger then life personality all of them are a the same!! Not one shy one in the bunch and so smart …they tell you what their meds are and when they need them.

AMAZING Simply AMAZING!!

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, whats okay to say everyone is different. WE use humor and “well at least” and then find the best. Thats how we get thorough. I treasure and value the friendships that have been created. It takes a strong person someone who knows how to be a friend to stick around durring all of this.

For this I am grateful, Thank you for being Our friend.  Thank you for supporting Kourt and and the family. All the cards, notes , Texts, calls, emails,coffee, lunches, stealing me away for “gossip” ,Making me look at the blue sky and the trees and just loving living the moment…..they help us make it tough the day. We keep on all of the TX kids and families we keep on:-) Look what this illness has brought? FAMILY we never knew we had!!

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 way home from LA. Everyone had a good weekend, its just so jam packed. It was good Someday I hope to rest….Mothers day is soon, Kourt asked me what i wanted , I told her a NAP!! All day!! She informed me that I may get something better . What? I thought dare I ask? So I did…What is better then a Nap Kourt?  kourt quote ” Well I might get you something that cooks dinner in 2 minutes” …I just laughed ….great just what I need something else to do now I am making dinner.  Better yet she saw it on TV so it must be good! GOOD NEWS she cant remember the name of it ..WHEW!!

Mikey came up the Dog was the best behaved out of them all . They were all good just the dog was the easy…Goodnight …please Organs soon …I might get something that cooks dinner in 2 minutes ..LOVE THAT GIRL!

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  Same stuff just different location, thats how we roll Mobile Holiday.

It is just a beautiful day today I hope tomorrow is the same so we can have a picnic lunch on the grass or at least the tables outside. This is time for the family to just hang out. I am not sure if Ty can come he is is hurt again and does not know if he can sit for 2 hours in the car. He really wants to go, I told hime its okay do what you need to do because school is monday and you cant miss anymore.

This Holiday and all others…. What do they mean to us? We were raised very religous and the big kids were even in private school for many years. We as parents are just not there anymore and we have chosen to let the kids chose how they wish to look at things. Things have changed we have changed and until you have a child that you look at everyday and think how could anyone make her suffer? There is no reason, I respect everyone for what they celebrate, who they are and what they believe. For us its up in the air. Kourt is not sick because my faith is not strong enough, she is so much stronger then anyone I know. I do know where she will end up someday and there will be no pain…While she is here on earth why must she suffer?  We are who we are and our family is strong and we support each other right now thats all we have. 

Respect thats all we have for each other and  how we chose to live.

Keeping on!

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 seem like rocket science to me but lets leave the roads open and take a dang helocoptier? Traffic in LA is bad enough without his visit…Stay in DC!!! I did send the white house a email last time he was here to stop by and talk heathcare the next time he was in LA. I guess he was not interested.

Number 1 tried to go back to the Gym to early and re injured himself. SIGH!!! 

Number 3 and her need to be perfect and the best at everything may make me even more insane.

Number 4 well she has stopped bleeding for now and I hope that everyday is the day she gets the gift of life. When I am so exhausted that I cant move and I am over 100 miles away is when she always gets the call…I am exhausted tonight

Taking everything in stride thats the only way we all can right now. If I was to sit down and really think about everything I might just lose it.

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 does this ..I guess all of the kids do. The minute we sit down…that is after we ask if they need anything else….They need something!!  I have to laugh but sometimes I am just so tired. This week has been exhausting to say the least.

I am really gald that kourt is doing so well :-)

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 her star and has been having very good behavior and is doing with the cathing and all of her stuff that she needs to deal with. She had a yucky morning but is so much better now. She is tired tonight she was up late and woke up early. I am exhausted as well. Kourts krew filed our first 990 with the IRS, which is good and we ar off to a good start. I am very proud of what it has become, I hope i did it right. If not I am sure the IRS will let me know, It seemed easy were not that big and its nothing compared to the medical stuff I have had to learn. The big kids had a good weekend, no one had to go anywhere and there was much cleaning , yardwork and swimming going on. There was only one extra kid there, the neighbor who thinks he is a najjar. :-) which is fine! Waiting for that Perfect TX please let it be this week!

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 I just so hard to rest well that and the residents waking me up.   Intern quote:”I cant see, so I am going to turn on the light” …..FLASHLIGHT!! So I think that intern wont be turning on lights again for a while. Then Next night head resident comes in and wakes me up ,where to tell me what they are going to do. I tell her “no your not, there is not one reason why you should… wait for the team.” So irratating ummm she is there because she needs a TX not because she has a stomache ache. Turns out I did make the right choice.,TX team agreed with me.

I took a break yesterday and just relaxed. It was so needed, I made my way back to to be with the big kids and Mark is on kourt watch. Lets hope I get called back because they have organs.

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 labs are stable but I want them to recheck them at midnight and 6am if she is still bleeding. I will not do a another Hem of 3 and dialysis again. I knew something was up with the pain she has been having.

I will be staying at the hospital tonight and my BACK is killing me but I think the worry I am having will keep my mind of that… Nothing compared to the pain kourt is dealing with.

Good stuff …I passed out Disney posters to all the kids in the hospital and brought some smiles

Kacee did roundoff, back handspring ,back tuck ,back handspring, layout,

kam got her roundoff back tucks

Ty is feeling better but still not back to the gym

and everyone is excited that Aunt Courtney is satying over tomorrow night.

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 if you can find some organs and get her a transplant we will get her off the Dauldid. As kourt is retching and crying in pain. Just give her the Bouls!!! Dont make me take you outside the door and yell at you. My poor kourt!! Once I got her past the pain the day got better she took a shower and went to the playroom. I will take it!! She was retching so much that school for the past few days have been short and just some reading. Kourt likes school and she like that she is like all of her siblings. Going to school, Hospital school. I feel so bad for kourt.  My back was hurting so bad today that It was hurting to stand and sit and move at times. I cant even complain kourt has it so much worse. I am sure it is stress, It happens to me every once in a while. With Kourt and  then Ty I just have been so worried about both of them. Ty is still having pain and came home from school again today. He cant even sit in the chairs. I think we have it figured out it looks like a pulled muscle by his last rib,or a cracked rib. He needs to rest and heal. If he is not better he is getting a CT if its the last thing I do. Mark took him today and I am not sure How demanding he was. I think I might switch him to a sports med doc. 16 yr old boys think they are invincable and tonight the 16yr old boy is getting advice from his 8yr old sister about nasuea and pain . There will be no more cutting weight the way he was doing it. Injury is part of sports that we will deal with as it comes.

ENOUGH!! Time for a Break and a TX

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

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, they keep me young, they are my true joy in life. I will do anything and everything for them no matter what it takes. I could not be prouder of them and who they are…..I am grateful for the future and look foward to the sucessful TX that will give kourt a long and happy life, I am grateful that I have all of our needs met and somehow “things”are just there when I need them. Money, people, housing, support, I am grateful everyday who would have known we would be doing this for so long..? I will not give up ever. I put a smile on my face and remember how it could be worse. Keeping positive is how I get through that and xanax, diet coke , and starbucks Keeping on!!!!

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 to me.  Kacee has her last Cheer comp of the year in Anaheim and Kam has a B day party….This is how it goes I will get everyone everywhere. My sis is on Ty watch , kacee and I cheer comp, kam went early to party,  mark hospital….Keeping on

DONATE LIFE!!!

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 to chat with Dokota Fanning today she was cute and very down to earth. Sweet girl and just chatted with kourt.

We are all waiting for that perfect transplant!!!!

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 and I will take it! i am tired she was playing just dance 2 and I was player 2 Fun but I am exhausted but I guess its good for me did a hour of cardio. She does it sitting I look like a fool dancing around …but whats new? keeping trying to stay strong!!

Tonight is rachel night need I say more? It will be bye mom dont let the door hit you on the way out …I will take it!!

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 waiting who the Dr’s felt deserved it more would get the organs. First of all child organs are to small for a adult. Second, the Dr’s have nothing to do with where your organs go. UNOS is what all hospitals are registered with and so are kids like Kourtney. They call the Dr’s and offer them the organs and tell them about how this person passed there is much thought and a ranking  that goes into this. So many things have to match. Blood ,tissue, antibodies, size, weight, the fact is this if you were in a car accident and you were close to death and you have a donor sticker on you ID they will not let you die. They will do their best to keep anyone alive but if you are a donor and you do pass they have to keep your organs alive and viable for a certain amount of hours. If you were to wake up during the time for some amazing reason,they actually kept you alive longer and saved your life. Children need child size organs and adults need the right size also. There are so many misconceptions, becoming educated on Organ donation is the best thing to do you can save a life and be a part of something greater . You will live on ,part of a new family and always being loved for what you have given. I really hope that the parents of kourtney’s first donor contacts me . I want them to know how much we love them and their child that has given kourt a amazing pancreas. How blessed are we that we have a second family to love.

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 ORGANS!!!

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 same page. Kourtney knows what to expect.

Exhausted and I have a sinus infection. My head and eyess feel like they will explode. I cant complain after what I see Kourt go through. She is cathing twice a day and she has to get poked to check her blood sugar. They are compressing her TPN.  Kourt is doing do well she just is doing it all. I know this stay has taken a toll on her , I am trying so hard to help her make the best of this for her and do everything I can to make it all better….Even though that is out of my reach right now.