Hello all,

We are back from NIH again.  We are going every four weeks now for I do not know how long.  I am meeting some wonderful families each time I go.  I am not so good at keeping in touch but find that everyone of you are warm and caring.  Michelle, I am saying hi as I said I would.  Maybe I will be there when your husband and Keiren are there.  I will let you know the dates when I have them.  I really enjoyed talking with you.  You are very clever in your approach to all this.  I would love to be able to meet up with you again.  I talked quite a bit with Gabby's Mom and sister(I am so bad with names).  They are going through a lot right now.  Isaac really took to both Keiren and Gabby.

We are still at the cautious wait and see with Isaac.  They are not able to taper the steroids because he has lost weight and we must find out why.  He is only 2 years old and is so tiny anyway, he cannot afford to lose weight.  He also is showing some liver involvement with the blood work, so we will be doing further testing when we go back in four weeks.  I am so humbled when I go there and see so many others with so much more to go through, but this is my child and my heart breaks for him.  He cries so hard that they cannot get tape to stick to him to hold his IV in from all the sweat.  The nurses are so great and care so much.  I know they were upset to have to poke him again because his IV slipped right out.

I feel so fortunate to be able to take my son there.  We were feeling so desparate for too long and now feel hope.  I cannot imagine what it was like for the families before.

Hoping you are all having a great season.

Kathe