Withdrawl.....

This could mean a few things in Princess Lindsay's world.......when I don't post for a few days, this is what her stalkers go through and this also means that Lindsay is going through this because of her drug addiction! Yes, she is showing signs of withdrawal by having spiratic fevers, throwing up and being very agitated. She is FINALLY off all sedation medication as of yesterday and is just being given single doses intermittently. So far so good and she had a fantastic day of rest. The only time that they gave an extra dose was tonight around 9pm. What was even better about that is that this time it didn't come with a fever. The last few have, so that is also fantastic! She is getting there and hoping to start the Rituximab early next week. She has also kept down most of her feeds and is up to 65 cc's every two hours. Will probably have to increase soon because she is really starting to get her appetite back. It is so nice to have our baby back again. She is smiling and starting to play a little. She has physical therapy 3 times a week now because she has been in bed for 7 weeks! YIKES! However, the therapist said that she is actually doing very well and isn't overly concerned that she will have a problem progressing with her motor skills. What a tough little cookie!

I have included some pictures of her from the last few days and also one of Meg, the nurse for transplantation services. This is when she was calling UNOS to list Lindsay for transplant. I know, kooky, but I had to have that picture because it was a huge deal! Andrea, and for those of you who might understand, she is listed as a 1A. This is the highest category because of her being in the hospital and on a milrinone drip. So, that increases her odds but will really matter is that we get rid of the antibodies. So, next step, Rituximab next week.

Love to each and every one of you!

Love, Suzie

PS Carlee and Connor are stable and came through surgery very well. The both had their hemi-fontan's today....Connor's was waaay unexpected at only 2 months old!!! But Dr. Bove thought about it overnight and decided that that was what Connor needed. So far so good. The next few days are critical, so please keep them in your prayers.