From: Kraig Warnemuende <ad6075@wayne.edu>

Date: Fri Jun 11, 2004 11:50:21 AM America/Detroit

To: Kraig Warnemuende <ad6075@wayne.edu>

Subject: 06-10-04 Update from Kraig, Loren and Keren

Dear Friends and Family,

So, I was going to write an update about a month ago! Now that spring (and almost summer) is here, it seems like everything in life has sped up. Time for new news!

I hope these past two months have been good for all of you, and that you've had time to enjoy life (particularly spring flowers, for those of you in northern climes :) ). We had a very wet May this year, with one or two weeks of constant thunderstorms. The good news is it was wonderful for the plants, and everything is still lush and green, and right now the first roses and the honeysuckle are blooming on our trellis. I hope the green holds up for the remainder of the summer!

I won't send out a series of emails this time, so this will end up being another epic from the Warnemuende saga....

As I mentioned, it's been a busy few months and we're looking ahead at a hopping summer. Keren had a few checkups. We saw her cardiologist who did a thorough review of Keren's heart, said everything looked great and that we don't have to come back for a year! Yeah!!! (Except, we will miss seeing Dr. T!) We also got an all-clear on Keren's semi-annual abdominal ultrasound. We do this checkup because research has shown that in children with Trisomy 18 there is a higher incidence of liver and kidney tumors. The regular ultrasound helps catch these very early if they exist. The other checkup we had was with Keren's plastic/reconstructive surgeon who did her jaw surgery over a year ago and now sees her about every six months to follow up with sleep studies, jaw growth, etc. Oh yes, and we had a sleep study to check Keren's obstructive sleep apnea. She still has it, but she tolerates her c-pap mask very well at night, which is a blessing for all of us!

In new news, we've met with a therapist under one of Keren's doctors who helped us order a number of pieces of special equipment that will help us immensely in the next few years. These items are a specialized wheelchair, a bath system which will help with getting Keren in and out of the tub without much back strain on me, and a special carseat that will bear up to about 100 lbs. Keren's physical therapist, Francie, was able to come with us to this appointment and what a help that was! She has a lot of experience with the different types of equipment, not to mention what parents and special ed teachers in the school district like. The other good news is that even though much of this is not covered by our primary insurance (they're considered "convenience items"!), Keren's Michigan children's special health insurance will cover it. As Francie said, "Get it now while you have the coverage!" This is all equipment that will last Keren a number of years. We're hoping that all the red-tape gets taken care of within the next few weeks.

Keren has been doing so well over the past few months. She's had a couple very minor colds, but otherwise has been healthy. I think she's had some allergies this spring season, though it's hard to tell if it's that or more teeth that are working to come through (she has a mouthful already--ten!). She also is showing us new little developmental jumps. For one thing, she's continually more interactive. Her smiles make our moments :) . We've been working with a communications therapist through the school district who has given us materials for learning sign language and general communication concepts. I've realized how vast an area this is! I had the head knowledge that communication is more than words, but watching Keren has taught me just how much more. We've been working on little things such as getting her to give us some indication that she has heard and understood something. For instance, Kraig always tells her to lift her hands when he puts her tray on her booster chair (He says it, and also lifts his arms). She's beginning to get the idea--sometimes needs a little nudge on her elbow--but now and then she'll do it! Another example is her very bad habit of biting her lower lip--in the past she's managed to make it bleed. Recently, though, we've figured out some deterrents (the one that works best is a quick flick on the cheek) and now we almost always only have to shake our finger and say, "No!" and she'll stop. I hope that continues! Keren is responding more to songs (she started shaking a pom-pom to one of our playgroup songs that we sing each week), and she's reaching out more to take toys we hand to her. Cause and effect is something that she's getting the hang of, particularly when it comes to spinning a little flip-toy on her walker (over and over and over again). Her vocalizations are still just that, no hint of words, but she has various tones and consonant sounds. We also think she has just started to wave "Hi" in response to a wave (her whole arm goes up and down!). Next week we'll be starting a twice-weekly speech therapy for the summer which will be through the program at our children's hospital. It will be interesting to see what new doors this opens!

Physical development steps? She still loves to practice standing and especially likes to prop herself against our legs and work on balancing. She also enjoys standing in her walker (though unfortunately she's almost outgrown it), and when she's on a hard surface, she manages to move it a little. This is something she's not too sure of, though; she'd much rather be on the carpet where the walker won't move. She's still working on the crawl stance--it's hard to get her to try it over and over, but she can do it. No forward movement yet, but the possibility is there.

We're still feeding her via her feeding tube. I have been a bit bad about working with her on food by mouth. It's such a struggle when she doesn't enjoy it at all, and so often ends up gagging on whatever is given. However, now and then she'll kind of get the hang of it. She seems to do better with things that have a bit of texture. She also drinks well from a cup, and when she's thirsty she'll easily down a couple ounces of water or Pediasure (which is her main food source, now). The Pediasure is a little more tricky, though, since it has flavor! I must admit, the food challenge is one I still deal with. By that I mean, I still beat myself up now and then about our choice to feed her by tube. It's silly, I know, particularly when we look at how well she's grown and developed, and how we've all been able to go on with life because we can feed her that way, but there inevitably is the bit of guilt, and also the wondering, "Will she ever get it?" I mean, eating is such a "normal" thing, and if she did that it would be such a huge developmental leap! Anyway, that's that!

In family news....

Kraig finished up as a graduate assistant at Wayne State in April, so as of now he is officially job-searching. He's also still working on his dissertation, and it looks like he'll be able to finish that by the end of the summer. In the meantime, God has provided some unexpected financial helps that will keep us through the summer. Also, our insurance policy is covered till the end of the summer as well. Kraig is looking primarily at industrial engineering jobs (his degree is in structural engineering), and we'll see what comes. My greatest fear that I have to keep handing off to God is that we'll have to move out of this area. Kraig hopes to find something around here, but obviously there are no guarantees. For both of us, this area means a ton: we have lots of family, an awesome church home, great doctors, a wonderful school system, etc., etc., etc. I know that other places have great things, too, but the people here know us, and they know Keren! We'll keep you posted on that!

We're also keeping busy with house-projects. Spring brought lots of yard work. Then, with the extra rain this May we had the added special event of a flooded basement when our sump-pump failed :( ! The good news with that was that homeowners insurance covered it, and so we were able to call in friends who run a carpet cleaning/water damage repair company. They had all the equipment to extract the water (three inches in spots) and then dry it with tons of fans and dehumidifiers, not to mention clean the carpet afterward! We'll have to replace a bit of drywall and some panelling, but fortunately nothing of great value was damaged, and Kris and Katrina pitched in with us to do a very-much needed basement cleanup. Of course, a lot of stuff is still sitting in the garage..... Ah well, these things take time! This all happened in the middle of a planned project, which was getting another bathroom redone! When it rains, it pours!

Looking down the road to this summer: I mentioned the therapy that I'll be starting with Keren--that will keep our schedule tight. Also, next week Kraig's parents will be coming home from Mali for a whirlwind summer of visiting family and supporters. We'll get to see them a bit, though :) . Kraig's brother Kris and his wife Katrina just bought a house and are currently working through toward the closing (pray that that goes through!), so I'm sure we'll be helping them with the adventure of setting up their first home (a fixer-upper of course!). Kathy has been keeping very busy with work and school. She's just heard that Ryan has the possibility of getting leave sometime late in the summer (please pray that he is able to get it!!!). Kraig's folks will get to spend time with Kraig's brother Kevin, his wife, Mandie, and daughter Abby in Texas. Kevin and Mandie are still dealing with uncertainty in jobs, as is my sister Jessie's husband Brian. We'll get to see Jessie this week as she'll be up on business, and we're seeing more of my folks this summer since they're actually home! (In fact, Kraig, Keren and I got to spend a wonderful Memorial Day weekend with them up north--that's northern Michigan for those of you not from this state!) My sister Carrie is also keeping busy with work at SEND International, though she'll be going back to full-time support raising soon for her two-year ministry.

Hmmm, have I covered all the bases? Oh! There have been more special visits from friends and family! Last month Keren and I made a long-delayed visit to a group of women whom I tutored for a good year-and-a-half before Keren was born. It was so wonderful to catch up with them. Also, a close college friend, Rue Ann, was in Michigan last weekend on business and had an extra day to visit us. She was able to get some special Keren-time, as she babysat while Kraig and I ran to a wedding. We've also just spent a morning with a great-aunt and uncle whom we haven't seen since January, and we're looking forward to seeing one of Kraig's California cousins this evening! (And I'm sure I'm forgetting people....)

I think that's about everything I can cram in! I'll be updating our webpage very soon--I'll let you know when more pictures are up.

Talk to you soon!

Much love,

Loren for the family