Dear Word FM Network friends,

I have long wanted to write a note to share what's going on with our family, specifically our beautiful daughter Victoria Joy (born January 23, 2006). Her ongoing situation is very time-consuming, but thankfully I have a few minutes today to paint a picture for those who have asked and let you know how you can pray.

Tori has a condition called "polymicrogyria" (which means "many little folds"). Basically, the surface of her brain has too many folds and is not forming properly. The first obvious sign of her PMG was seizures. She has had them almost since the beginning and is on medication to keep them to a minimum. Ideally we'd like her to not be on the medication because while it curbs her seizures, the medicine also "dulls" or "slows" her brain growth. We are in a bit of a Catch-22 there and have discussed weaning her off the medicine at some point.

Overall, Tori is simply a weak child with low muscle tone and low body weight. Tori nurses "OK" but definitely needs additional food and has a feeding tube in via her nose to help with that (when it's in, that is . . . Tori isn't particularly fond of the tube and tries to swat it out whenever possible). Although the feeding tube greatly speeds up her supplemental feedings (from an hour down to about 20 minutes), Tori also has difficulty keeping any formula down (regardless of the type - and we've tried a half dozen of them including soy and organic). Of course, keeping her supplemental feedings down would not only allow her weight to increase but likely help her brain to be nourished and in turn help Tori grow cognitively, so there's a lot at stake.

Tori also does not hear or see well. If we bang two pots together or shine a bright light in her eyes, she does respond. However, she does not generally respond to anything else, even things like loud hand clapping or calling her name, even if we speak right into her ear. At one time she did have fluid behind her ears, and we thought if / when that fluid went away she'd be able to hear us better, but although the fluid did go away, she remains partially deaf.

The ride has been up and down since Day 1, with perhaps the most difficult time being July 21 when we were on a family reunion / vacation camping trip in New Jersey. Tori just started shutting down that day for some still-unknown reason and had to be rushed by ambulance to Atlantic City Hospital and then airlifted to CHOP (Children's Hospital Of Philadelphia). She was in the hospital for 4 days and improved enough to have her come home, but the doctors could not explain what happened. The best guess we could make was that the environment of being on a campground (bug spray, being near a lake, the smell of an outdoor fire, etc.) overwhelmed her, but that was not confirmed. We took a CPR class and took an apnea monitor home. Tori stopped breathing 3 more times in the following few weeks but has since not had another episode (although she does seem to stop breathing for 5-7 seconds at a time sometimes). The bigger thing, however, was that she seemed to lose function after that July 21-24 weekend and has not regained much of it at all. She used to recognize us (both with her eyes and ears) occasionally, would track fairly well, and in general make some connections with her surroundings. Nowadays she barely responds to her environment at all. If we poke at her with a pencil or somehow try to get a rise out of her, she'll respond, but as far as normal stuff you'd do with your baby, Tori does not respond. We are guessing her shutdown July 21 may have deprived her brain of oxygen and caused some damage, but whether it's reversible or not we do not know.

On the outside she looks beautiful and normal, but cognitively and physically she has a lot of problems. We do have a lot of kind doctors and therapists involved in Tori's life, but they are puzzled about what's going on and where to from here. We do regularly interact with one of the night show's sponsors - Family Hope Center in Blue Bell, PA (www.familyhopecenter.org) - for how to help stimulate Tori's brain growth as well as how to help her physically (nutrition, etc) and have been very thankful for their support and loving approach.

Tori has had other problems ranging from an enlarged spleen, enlarged liver, enlarged adenoids, enlarged tonsils, thyroid issues and possible Lyme's Disease-related parasites in her system. Some of these things have been successfully treated and some are still being treated or are a question mark.

On a personal level, God is at work in our own lives too. He can heal Tori anytime He wants, and since He hasn't, that must mean He is up to other things as well . . . so we are trying to let Him simply lead us wherever He wants and not try to figure it all out. In the end, He calls us to know Him, not necessarily know what He is up to . . . so we pray for our daughter's health but we also are praying to have eyes and ears that are sensitive to His leading. He is our hope, and He is good and loving.

Prayer requests, then, would be for Tori's physical and mental development . . . for our family to be united in Him (our kids have been great in supporting their younger sister) . . . and for the energy to be faithful in caring for all of our kids, especially Tori. Her treatment is very demanding and takes up a lot of the day (and night) and keeps us on a fairly short leash. Honestly, sometimes it's rather "claustrophobic," but we are reminded that the Lord never gives us anything that He won't give us the strength to go through as well, so we are holding on to His promises.

Thanks very much for your interest, support and prayers. God is good all the time.

Timmy D. (for wife Tina and children Timmy, Toby, Tessa and Tori)