Re: Re: Re: Re: Feeling Overwhelmed!

I haven't been on the board for a long time, but wanted to respond back to you. My daughter, Lauren, is doing so much better now! Her muscle weakness is gone, and we got the news last month that we will be stopping the IV solumedral if her blood levels remain normal (she is now on every three weeks). We don't have all her blood results back, but her "NK level" has gone done, which might indicate more IV treatment - we're waiting to here from the doctor.

Ironically, Lauren is also an identical twin. Now people can tell them apart from her "puffy" face, which is of course hurtful to her. I am amazed though at her spirit and ability to handle this. How is Sienna doing? How old is she and where do you go for treatment?