Hey, all! I know it has been a really long time since I've updated this page, even though I've been asked to do so several times, and many of you read Melissa's blog so I'll try not to duplicate content here.
Kathryn continues to do well. She's doing really well, actually, and that's why I haven't posted anything in such a long time. She's nine months old now, and there just hasn't been much to say. I guess that in itself is worth saying though. Her screaming bouts, which would often last for several hours, stopped the day she received her two-month shots and she has been a very happy kid ever since. I guess she gets that from Robyn, because I'm not generally known for my sunny disposition. KB has two teeth now, in front on the bottom, and they're as sharp as razors. She wakes up with a smile, babbling to herself and plays until you come pick her up (as long as that's within 10 – 20 minutes). This week, Kitty started pulling herself up to a standing position and she can even walk a little bit if you hold her hand. It's more of a controlled fall-stumble thing and she doesn't recognize it as a valid means of transportation, but she'll get there. Also this week, she started sleeping through the night, and I'm ecstatic not to be getting up at 3:00AM any longer. Sorry, Chris, I know that's probably hard for you to read. We've posted a few pictures on a Shutterfly share page for those of you who aren't friends with Robyn on Facebook. I've also copied all of the updates out of here to a blog in case you're tired of logging in. I doubt I'll be updating more often than I have been; it's not really my preferred method of communication. We'd much rather have you over for a cup of coffee to see and play with her yourself. I hope you're all having a happy Thanksgiving and, as I wrote in Melissa's blog, we're thankful for all of you.
Friday, November 23, 2012
Thursday, November 22, 2012
You Think It'll Never Happen to You… and Then It Doesn't!
Last February Melissa wrote an entry on Upstream Swimming about our daughter, Kathryn, and asked all of you to be praying for our family. Perhaps you've been wondering how that all turned out, so here's a Thanksgiving update on her situation.
To recap, a few weeks before birth Kathryn Elizabeth (heretofore known as Katie Beth, KB, Kat, Kitty, Katie, or The Reason I've Been Super Angry and Not Sleeping for Nine Months) was diagnosed with ventriculomegaly, then born with congenital defects in her ears, nose, and mouth, and a couple of days later she was unofficially diagnosed with Zellweger Syndrome and tested positive for Human Cytomegalovirus (HCMV). Off the record we were told by one of her specialists that she had no more than six months to live—at the absolute longest. That's when word started to spread. First our friends started to pray and word quickly spread to others in our church, then relatives, and then their friends and churches started pray. We were getting cards and flowers e-mails from people we didn't know all over the country telling us they were praying for us. And I don't know why—I don't know why He does anything that He does—but God answered those prayers in a way we didn't expect.
Three days after she was born her ears had moved into a normal location and, although we had originally been told to expect difficulty, she was breathing and eating on her own. After a lot of blood samples, an MRI, and two months of waiting for genetic testing at the Mayo Clinic, her official diagnosis was made: Katie does not have Zellweger Syndrome—or any other known genetic defect. We had been praying for strength to get through the trial, hoping that the loss of a child wouldn't ruin our marriage and that we'd be able to try again, but He had healed our daughter instead. She still has some brain damage and there may be other long-term effects from the HCMV, but so far she is doing well. In fact, she has been developing perfectly normally. She excels in her intelligence and fine motor skill tests at physical therapy (yeah, infant physical therapy) impressing her doctors with her ability to manipulate a pacifier into the correct position before putting it in her mouth, and her ability to hold her own bottle to feed herself. Kitty has been doing both of these for several months now. Her strength continues to lag, but not by a concerning amount and Robyn and I aren't muscular anyhow. KB's head is even a normal size—it was supposed to be disproportionately small as a result of the HCMV.
So this Thanksgiving we're thankful for our daughter. We're thankful that she's here with us, but also for the experience—we grew as a couple and our relationship was affected positively by it. We're stronger as a team; have a healthier perspective on certain things; opened up to each other and gained a level of intimacy we've never shared before. I wouldn't wish an experience like this on my worst enemy, but I wouldn't trade it for anything. Like everything else we do with God, it isn't easy but it's very worth while.
We're thankful for our church family, friends, and relatives who supported us in very material ways. We fed not only ourselves, but at least one other family with the food that was brought to us at home and in the hospital. Our dogs were cared for, and we almost had our yard re-landscaped as well. Being around people like the Felkers pushes us to live our lives for God in tangible and meaningful ways. We're thankful for the example you've all demonstrated for us.
Finally, and this is last because I want it to be remembered first, we're thankful for your prayers. I don't know why He healed Kathryn and not the other kids in the NICU, but seeing the People of God care for each other always encourages me immensely and provides the best witness I know of. So thank you for taking the time out of your day to pray for us, whom you've never met. You can't fix everything, but you've made a difference to us.
http://kathrynelizabethschlichter.shutterfly.com/
To recap, a few weeks before birth Kathryn Elizabeth (heretofore known as Katie Beth, KB, Kat, Kitty, Katie, or The Reason I've Been Super Angry and Not Sleeping for Nine Months) was diagnosed with ventriculomegaly, then born with congenital defects in her ears, nose, and mouth, and a couple of days later she was unofficially diagnosed with Zellweger Syndrome and tested positive for Human Cytomegalovirus (HCMV). Off the record we were told by one of her specialists that she had no more than six months to live—at the absolute longest. That's when word started to spread. First our friends started to pray and word quickly spread to others in our church, then relatives, and then their friends and churches started pray. We were getting cards and flowers e-mails from people we didn't know all over the country telling us they were praying for us. And I don't know why—I don't know why He does anything that He does—but God answered those prayers in a way we didn't expect.
Three days after she was born her ears had moved into a normal location and, although we had originally been told to expect difficulty, she was breathing and eating on her own. After a lot of blood samples, an MRI, and two months of waiting for genetic testing at the Mayo Clinic, her official diagnosis was made: Katie does not have Zellweger Syndrome—or any other known genetic defect. We had been praying for strength to get through the trial, hoping that the loss of a child wouldn't ruin our marriage and that we'd be able to try again, but He had healed our daughter instead. She still has some brain damage and there may be other long-term effects from the HCMV, but so far she is doing well. In fact, she has been developing perfectly normally. She excels in her intelligence and fine motor skill tests at physical therapy (yeah, infant physical therapy) impressing her doctors with her ability to manipulate a pacifier into the correct position before putting it in her mouth, and her ability to hold her own bottle to feed herself. Kitty has been doing both of these for several months now. Her strength continues to lag, but not by a concerning amount and Robyn and I aren't muscular anyhow. KB's head is even a normal size—it was supposed to be disproportionately small as a result of the HCMV.
So this Thanksgiving we're thankful for our daughter. We're thankful that she's here with us, but also for the experience—we grew as a couple and our relationship was affected positively by it. We're stronger as a team; have a healthier perspective on certain things; opened up to each other and gained a level of intimacy we've never shared before. I wouldn't wish an experience like this on my worst enemy, but I wouldn't trade it for anything. Like everything else we do with God, it isn't easy but it's very worth while.
We're thankful for our church family, friends, and relatives who supported us in very material ways. We fed not only ourselves, but at least one other family with the food that was brought to us at home and in the hospital. Our dogs were cared for, and we almost had our yard re-landscaped as well. Being around people like the Felkers pushes us to live our lives for God in tangible and meaningful ways. We're thankful for the example you've all demonstrated for us.
Finally, and this is last because I want it to be remembered first, we're thankful for your prayers. I don't know why He healed Kathryn and not the other kids in the NICU, but seeing the People of God care for each other always encourages me immensely and provides the best witness I know of. So thank you for taking the time out of your day to pray for us, whom you've never met. You can't fix everything, but you've made a difference to us.
http://kathrynelizabethschlichter.shutterfly.com/
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