...are here again!
Its been a full week since we got the go ahead to stop giving Ashley Kate the drug Rapamune for her immunosupression and since the day we stopped life has changed for her and for us. Our baby is not sick, not vomitting, not miserable, not stooling out, not TPN dependant, not anything but...HAPPY.
She has advanced from 2cc of formula an hour to 70cc in a week's time. The goal is 80cc. In a day or two she will be on NO TPN and back to full feedings. We will watch her for a few more days to make sure she adjusts and tolerates it all and then we will remove this central line from her body and give her a chance to be well, hopefully stay well, and just enjoy her summer. Our hopes are high and we are feeling more confident about her status then we have in over 8months. I realize things can change so quickly and that every day that this line is inside of her is a day that we run the risk of infection returning, but if you could see the smile in that face and the twinkle in her eyes then I imagine you would understand why we are feeling hopeful.
To think that something we gave her daily over the last 8months caused all of this heartache and struggle for her makes me sick inside. Dave and I KNOW that drugs are not good. We live, breathe, stand by, defend, and practice it daily in our lives. With Ash we have no choice but to use some of them to keep her organs safe, but look at what has happened to her with the use of this medication. Praise God we didn't lose her during all of this time. He protected her and now we have been allowed to stop using it and she is getting stronger every single day.
Currently she is only on Prograf and Prednisone(which you already know how much I HATE this drug) for her immunosuppresion. We are running her Prograf at the same levels we ran it last summer when she was doing so well. If the suggestion ever comes back up about cutting that dose back in half you can bet there will be a discussion over it. We've battled rejection 2 years in a row from cutting back that dose, then we've tried to add both Cellcept and Rapamune to her Prograf to keep her out of rejection with disastrous results. I realize those two drugs may work for some transplant patients, but they DO NOT WORK for Ash. We now know and will not be making the same mistakes. The concern with Prograf is the toxic results it has on her kidneys. The drug has a history of destroying kidney function and so monitoring of her kidneys is something the team will always do. Many of the transplant patients end up with kidney transplants later down the road and that is something we pray does not happen with Ashley Kate.
Its been a busy week for us. Blake is busy, busy ,busy with baseball. I'm running around town getting estimates, taking measurements and choosing materials for the new house. Ash is playing with her Nan. Allison Brooke is out of town at church camp(and we are missing her silliness. I can't wait for her to get home.) We leave Friday for another ball tournament. Really looking forward to it after last weekend. We didn't get home until 2:30am Monday morning from the state tournament. Our Tarheels had an AWESOME weekend at the ball park, but feel just shy in the last inning of the championship game of earning their 5th state title. I don't think they were disappointed in the way the played though. They knew they had given it all they had and by the time the 6th game began at 9:30 Sunday evening we had no pitching and no catching left. Blake had already caught 4 games and couldn't pull out another one. He pitched the first 4 innings of the championship game and when he left the mound we were winning 3 to 2. The last couple of innings are kind of a blur because we were so tired, but at the end of the game the other team was at bat, the bases were loaded, the next kid hit a triple and the final score came out to be 8to4. We lost to the team we beat last year at the state tournament. So I guess that's ok. It was some of the best baseball I've seen us play all year long and it was so FUN!
Happy days are here again for our family and we are feeling so blessed. The big move is approaching and I still can't bring myself to pack up the main rooms of the house. Its going to be a busy end of the month if I can't get over the emotional issues of leaving this house! Then a few weeks after the move we will celebrate Ashley Kate's 4th birthday at the new house. Preparations are being made for a huge summer party and we are so excited!
Just wanted to check in with everybody. The internet is still hit and miss around here. Sometimes I have it sometimes I don't. Thanks for being here today. God bless. Trish