What will happen when all the pink cows die?

I haven't posted for almost a week so I need to catch up on things. We went to Salt Lake last weekend so that Josh could spend some time with his family. We also needed to get our taxes done and Kayden had transplant clinic so we made it a weekend trip. We got to stay at the University Marriott because the University Guest House was full. I have stayed at the Guest House every month for over a year now. I like it there because they have big rooms, refridgerators in the rooms, and it is close to the hospital since we have to be there at 8 a.m. for blood draws. We also get a good rate staying there because of our appointments. So with the Guest House being full we called the Marriott and they had rooms. We didn't get as good of rate as the Guest House, but we did get a good rate. The rooms however are smaller and they have no fridge and they are fairly close to the hospital. With that being said I think we will continue to stay at the University Guest House.

Kayden's clinic visit went well. His creatinine is staying stable at 0.3 which is WONDERFUL considering prior to transplant it was almost 3.0. He is healthy and he even gained two pounds in one month! Thanks to Strawberry milk (as Kayden calls it Pink Milk). We asked Kayden what will happen when all the pink cows die and he got really upset. So I guess for now they need to stay alive. Our dietician told us that if he drinks about 4 glasses of the Strawberry milk, but it has to be carnation and it has to be in whole milk, then we won't need to feed him any formula during the night and we just have to make sure he is getting enough water. Can you believe that. My son who has been hooked up to a feeding pump since he was 3 months old can now go to bed without being fed during the night! I was so happy to hear that. He has been eating more during the day also. He likes to eat peanut butter and honey sandwiches which is also helping him gain weight since he eats one for breakfast lunch and dinner along with the strawberry milk. Overall he is doing great.

The only down side is that his prograf level (Prograf is the medication he takes for anti-rejection. It has to be at a certain level so that it won't harm his kidney as fast. We have to get blood drawn 12 hours after taking this med in order to get the correct dosage since that is when there is the least amount of this level in his blood.) is almost undetectable so we are needing to play with his meds in order to get them so that they are the correct amounts. So he is needing to go to weekly blood draws until we get it taken care of. But he does so much better than most adults do with blood draws. He definately is a strong kid.

I am going to post about my opinion on health care in a bit, but let me just say this I do not enjoy being talked to by both the insurance people and the doctors or pharmacy as if I know absolutely nothing and their attitudes about how they are right so just deal with it. I worked for an insurance agency and I have a child with special needs. I know the ins and the outs and what things are and nobody is going to pull anything over my eyes. I will fight both of you until I get what I deserve. I am now stepping off of my soap box on this issue until a later time.

Can you believe that tomorrow is Valentines Day. I need to get Josh something but I don't know what. I want it to be something good since he didn't get anything for Christmas and I want him to know that we are so glad that he is back home with us. I am thinking of taking Lexi and going shopping with her to get him something. I am also planning on making Valentines cookies with my kids. Wish us luck with that.

I also want to mention and say good luck to Ty Ty, my nephew, who is going through some type of tests. We want him to know that we are thinking of him and that we hope that he is doing well. We also want him to know that we love him and hope to see him soon. (we wouldn't mind seeing his parents either if it means anything) Good Luck.