From: Kraig Warnemuende <ad6075@wayne.edu>

Date: Sun Mar 28, 2004 7:47:17 AM America/Detroit

To: Kraig Warnemuende <ad6075@wayne.edu>

Subject: 03-28-04 Addendum Update from Kraig, Loren and Keren

Dear Friends and Family,

I know, you thought you were done with us for a while! :)

I got this note and question from a friend this week, and after answering her, I realized it was probably one many of you have wondered, but not known how to ask (Thanks for opening the discussion, Kathy :) ). It seemed like a good idea to share this with all of you:

The Question:

I don't really know how to ask this. Your updates are very positive, but I know that originally Keren's prognosis was a very limited lifespan. Do things look different now, such that she could have a more normal life? I keep wondering if I'm going to get an e-mail that says she took a turn and the Lord has taken her home. I'm sorry this is crass but not being around I really don't know what you are dealing with.

Thanks for asking good, open questions, Kathy! You aren't being crass at all--I forget that those of you who aren't nearby don't see the daily steps we've taken. You get the lump sum and I tend to forget a lot of the struggles we've had! (They blur in light of the good things!) My January update (tune in tomorrow) will share some of my doldrums that month, but that's me, not Keren.

Yeah, Keren's original prognosis was negative, mainly due to the information out there on trisomy 18. Even though she had relatively few health problems, the doctors couldn't say if there would suddenly be a turn for the worse. At this point, well, there is still that possibility. I've heard of situations like that from people on the listserve support group we're a part of. On the other hand, though, there are folks who have children with T18 who are 3, 6, 10, 13, 20 and even a 29 year old! My feeling, and probably Keren's doctors would back this up, is that with her health as it is now, there's no reason that she can't live healthily for a good long while yet. In other words, I can't see something happening with dramatic suddenness. She's never had pneumonia or even a serious illness, and the longer she goes without something like that, the more strong she becomes. I realize now and then that I hardly think about her dying. It crosses my mind, but flits out again quickly. I'm not sure if this is denial, or that because of God's hand and the continuous prayer of friends it has ceased to be a worry (I think I'll lean toward this latter explanation!). I've also realized how life is so completely in God's hands--every life. There are no guarantees that any of us will live another day, so why should I worry about Keren? I just learned last month that the 20-some son of our pediatrician was hit by a car and killed in February. It hit so hard, 'cause our pediatrician (a strong Christian) has been one of Keren's greatest advocates and marveling at how God has extended her life beyond anything we imagined....

Dunno if that answers that question! In terms of her living a "more normal life," I've found that my definition of "normal" has changed a ton in the past year-and-a-half. Keren will always be delayed, probably severely if she follows the typical T18 pattern. However, there's so much potential and unknown quantity there! We originally thought she'd never walk, but after meeting other families who have kids with varying ranges of mobility, and hearing her physical therapist say, "Looking at what Keren is doing now, I have no doubt that she will walk some day. She may need some assistance, but she will walk," who are we to limit what God can do? I'm not sure if she will be able to talk much, but I already know she can communicate, and I know a lot of the kids "talk" using pictures or sign language. Will she ever eat completely by mouth? Will she ever really enjoy food? Not sure, but I'm not going to beat myself up about it. She's such an incredibly happy little girl and every smile brings us joy. I'm totally spoiled by her good nature--sometimes I wonder what I'll do if we have a "normal" child who will inevitably defy me at a very young age!

I think that's about all on those thoughts right now. Thanks for asking those questions--I've been needing to write this out and you gave me a wonderful excuse. These are the types of thoughts I should be sharing in my email updates, too!

Back to all of you!

I think that sums it up pretty well--please do feel free to ask questions like that when you need too. In some ways, we need to think through them now and then. We get so involved with the daily life that we forget to look at the big picture--the goals and plans we should have in place--kind of like life! But then again, we never know the whole picture with certainty--and personally, I like to leave it that way!

Well, that really is it for a while--I'll work on getting an update out end of April :)

Love you all and thanks for being a part of our lives!

Loren for the fam