A Taste of when the kids go away

Today was a Clinic day and it was interesting. You go at 730am and get blood work done and then at 8am you take all you meds and go upstairs and sign in. Then you wait to see a nurse and then you go for breakfast. The doctors come in at 10 or 11 and you go and wait your turn to see them. His creatine was up today to 148. It was 130 so they are watching this very closely. When you are active your creatine goes up and they just increased his dose of TAC so that is toxic and can cause it to go up. They will watch and if it stays consistent it is okay. If it goes up and up then we have to go in for a biopsy again. His blood pressure is amazing so they will ween him off the Adalat and other one they have him on. He is still on Prednizone (20mg) daily. It is causing him to not sleep. He isn't in pain just laying there wide awake. He will be off that steriod eventually. At 6 weeks post he has to have a shunt removed. It is a plastic piece that holds the urethra in place. That will be a day surgery. For now he goes to Clinic on Tues and Fridays. Dec 1 it will be once a week and Dec 23 once every 2 weeks. So eating is back to normal except we have to be careful of anything raw or unpasturized. Washing food and canning has to be exact! We will have hand washing rules and stations in our house from now on! Masks will be mandatory if you have any kind of anything. They want us all to have flu shots. Cynthia tried to get shots for the kids today but they said no. Tues there is a clinic to line up at. I have thought about it and decided to give us all the H1N1 shot. It can kill J. So really...... that is the issue. Today is Raanin's 7th birthday. I am trying not to be emotional about it. I know they are having fun and Nic and Great Grandma are throwing him a great party. Ivy made him a rocket cake and he will have fun. I miss all my kids. I am nervous and unknown about when I should be headed home. J has mentioned many times as he hugs me. "I do better when you are here." I am torn between him and my kids. Well things are really good. We are trying to enjoy time.