From: Kraig Warnemuende <ad6075@wayne.edu>

Date: Sat Feb 1, 2003 7:26:38 PM America/Detroit

To: Kraig Warnemuende <ad6075@wayne.edu>

Subject: 02/01/03 Update from Kraig, Loren and Keren

Hi all!

It seems like this past week has been packed with doctor appointments, though perhaps that's mainly because it was just the beginning of a whole slew of them in the upcoming weeks. Looks like right now we're in the "let's get all the facts organized and then make decisions" phase of things. Basically all the appointments revolve around Keren's eating/breathing/sleeping issues (which are pretty interconnected!).

Last Monday Keren had two appointments, an upper GI (gastro intestinal) study, and an ENT (ear, nose, throat) specialist appt. The upper GI basically just confirmed that she does have acid reflux. They weren't able to really see the extent, though, 'cause she couldn't drink enough of the barium to get a reading, and they couldn't get a feeding tube down her throat (she can't stand that anymore!!!). The other thing they could see, though, was that her stomach and intestines are all in good order. No "malrotation" as it's called (when things are twisted up). We were pretty sure of that, but it's nice to have verification.

The ENT was quite helpful and straightforward about some of the basics for Keren. She has, as we knew 'cause of the trisomy 18, very tiny nasal passages, and this of course makes it more difficult for her to breathe, particularly when there's any swelling or congestion. Those are two things she has mainly because of her reflux (nothing like a little acid up the nose at regular intervals). Unfortunately, it's kind of a catch-22. She has a hard time breathing because she has congestion; she has congestion because she spits up; she tends to spit up because she's having a hard time breathing!!!! So one of the questions is, how do we get the reflux under control? We don't have an answer on that one yet. The ENT also noted that her small jaw (another T18 feature) might cause breathing obstruction probs because her tongue tends to fall back with certain positions. To look into this more, he set us up to meet with the plastic surgeon who works next door on the same floor at the hospital. He was also going to consult with the ped. surgeon we met with the other week and will see again Monday to discuss some of the reflux probs and options for that.

To say the least, we were pretty much at the hospital all day Monday, and then got to go back Thursday for the plastic surgeon appt. That was a bit of a whirlwind!!! The plastic surgeon doc felt that Keren's jaw is probably not too small, and positioning is her best help for that rather than surgery to extend it. However, to take a closer look, she set Keren up for a "3-D craniofacial" cat scan--that will be Friday a week from now. She also set us up for a sleep study, which will evaluate Keren's sleeping patterns to see how much her sleep is disrupted due to breathing probs. This is something we've been wondering about, so that's good--except it means two more appointments next week, one an overnight (Saturday the 8th). The RN who works with her then talked to us for a bit about feeding issues. She was concerned about Keren's weight gain (Thursday she was 10 lbs, 22 1/2 inches) and wants to watch that closely. Keren's still not totally up on her eating (because of all the other issues). The RN wasn't panicking or anything, but I felt a bit overwhelmed. Fortunately when I talked to our pediatrician the next day about it he wasn't as concerned about the weight issue, and I've realized that while Keren's not gaining as fast as she should at the moment, she is gaining, and she's definitely not starving! That at least gives us enough time to try to analyze all the facts before taking more drastic measures (like a stomach tube).

So next week Monday we see the ped. surgeon again for follow-up, and also an occupational therapist about feeding techniques. Thursday we have a consult appt. with the "sleep doctor" and Friday the cat-scan. Saturday the overnight sleep study. Then the following week Wednesday we have a follow-up orthopedic appt and Thursday, a follow-up plastic-surgeon appointment (and who knows what after that!). Please pray for us that we'll be able to keep all this organized, that we'll have the wisdom to know which ones Kraig can miss out on, and most of all that Keren will remain healthy with all the schedule disruptions and exposure to other kids!!!!

Amidst all of these appointments and the headaches of "bad bottles", Keren's progressing really well with her physical therapy. She's smiling more and more, and her PT has brought in all kinds of neat toys for sensory stimulation. Keren has most recently been entranced by a set of sparkly "marti gras" beads (she gets her hands all tangled up in them), and a little squeeky caterpillar which has a prickly surface. It's so fun to watch her play! Just wish she had more fun eating :) .

Thanks again for all your support and prayer! We wouldn't make it without that!

Much love,

Loren for Kraig and Keren, too