Happy Second Birthday, Baby Girl!

Kathryn,

Your mom and I are so thankful for the opportunity to have spent another year with you!  Sometimes I still think about how very different our lives would be today if your first diagnosis had been correct.  To celebrate your birthday, we took you to Cold Stone for some ice cream.  You threw a huge fit because we wouldn't let you play in their restroom so we took you home, put you to bed, and ate your ice cream without you.  You can thank us later.  Your class at CSD made brownies to celebrate, and you and I started spending Saturday mornings together over chocolate milk and doughnuts (thank you, Brian Berry!).

You also got a name sign this week!  Your mom and I are pretty excited about it because "Kathryn Elizabeth Schlichter" takes WAY too long for us to fingerspell right now.  Your teacher, Maureen, gave you your sign because you always have a barrette in your hair to keep it out of your face.  We thought about just going with KB since all of your friends call you Katie Beth or shorten it to KB (especially in text messages and emails) but we liked the idea of something descriptive.  Your mom was adamantly opposed to using the sign for "cat" even though we chose "Kathryn" specifically because we liked the nickname "Kat."  Anyway, you go by "Barrette" now.  Good luck with that.  :)

It was a big week to finish up a big year for you—and for us.  The first six months were pretty uneventful but ever since your ABR in August SO MUCH has changed.  Most of our free time now is spent trying to learn ASL faster than you, which means classes, watching kids' TV shows like Dr. Wonder's Workshop (because kids' shows are about the right level for us right now), even making new friends so we can practice and, at some point, we'll be looking for a new church (that's going to be difficult for me).  At first I thought learning ASL wouldn't be that hard but it's a bigger challenge than we expected and, frankly, sometimes I just want to give up.  We went to a lecture on deaf literacy Tuesday where we learned it will probably take us around five years before we're conversationally fluent in ASL, and it'll be as much as 10 years before we're fluent in formal or academic ASL.  You'll be in first grade before I'll be fluent in your first language.  It feels like an unconquerable task and sometimes I don't think I'm up to the challenge.  I don't know how to tell you about God; I can't read stories to you; and I see other parents on the playground at school signing to their kids so fast I can't even understand what they're saying to a two-year-old!  There are two-year-old kids with better vocabulary than I have, baby girl.

I've been feeling pretty down about the whole situation recently, until breakfast today.  Today at breakfast you told me that you love me anyway; that none of that stuff matters.  You were sitting on the kitchen counter while I was cooking bacon and I put the box on your head.  You grabbed a spatula, I grabbed a spatula, and the Bacon Knight did battle with an evil warrior trying to steal all the waffles.

We're watching the Olympics on TV as I write this and what stands out to me this year, more than ever before, is how many people it takes to succeed in an event.  Even in the "individual" events, coaches, gear techs, family, friends, sponsors, and many more people are involved, even though you only see the person competing.  Behind the scenes of team Kathryn there are many people working hard for you too.  Your teachers at school (who take time out of their day to tutor us as well); our new friends who have helped us gain confidence and wait very patiently while we sign away with our two-year-old level vocabulary; our old friends who have prayed for you, babysat you while we take classes, and listened to whine and vent about how difficult things are right now; Teresa who has added ASL lessons for all the kids at your daycare; grandma Nancy who has entertained you for many weekends to give us a chance to relax; and your doctors who keep you healthy.  Life is a team sport and you have a lot of people on your team.

I hope you had a happy birthday, Kathryn.  Here's to your future successes!  

A New Adventure

Executive Summary: Kathryn’s ABR went well, and she was confirmed as deaf. Not really any other “new” news.

Well, at least THAT’S over, and—if my father was right when I was younger—we experienced some solid character development today (and put some hair on our collective chest). Kathryn developed a bit of a runny nose and then around 10:00PM a cough materialized. We arrived at the hospital at 6:00AM for an 8:00AM procedure. Each experience with Kaiser has been excellent, but the check-in process for today’s procedure was clearly not designed for toddlers that haven’t eaten in 12 hours and don’t understand the privacy needs of the guy in the half-gown in the next bed. You can’t just go anywhere you want, kiddo, and no you can’t eat anything.

Despite her runny nose, cough, and at least a dozen warnings over the phone and in e-mail to postpone the procedure if your child displays any signs of a cold, we forged ahead. This morning brought three more warnings from nurses as well as separate conversations with her anesthesiologist and the MD on duty about the increased risks of undergoing general anesthesia with a cold which ranged from pneumonia to cardiac arrest. We’re pretty sure her airway was just dry from having a breeze through her room last night (some of you know we lost our AC during this summer’s heat wave and can’t afford to replace it) and we decided to forge ahead. Besides, with an 18 month-old you can postpone these things forever waiting for various colds and runny noses to pass. So, after two and a half hours of checking in, her sedative kicked in and we had a little drunk person on our hands.

After the procedure the audiologist came out and explained her findings from the ABR which basically reconfirmed what we had learned before. We don’t have the final report in front of us, but she said that Katie Beth’s ear passages are nice and open (which probably means there’s no issue with her brain swelling). Physically, she says, KB’s ears look perfect. However, there’s no hearing in the left side at all, and on the right side she has minimal hearing at some frequencies above 95db. That’s about as loud as a jackhammer or subway train. It’s also the volume at which sustained exposure will result in hearing loss. The audiologist—who was VERY patient with all of my questions—also spoke to us about what some of our next steps will be. Katie will be fitted for hearing aides in both ears (even though the left is completely useless) for at least the next six months. Around two years of age Dr. Roya Souza says Kat will make an excellent candidate for a Cochlear Implant—if we decide to do that. Reading through the comments on that YouTube video I linked to should give you a taste of how controversial Cochlear Implants are in the Deaf community. There are good but strongly charged opinions on both sides of the debate. At best, the Cochlear Implant might restore her hearing to a level that would enable her to have conversations, but she’ll never hear very well. What we still don’t know is whether this recent change in her hearing (remember, she passed her ABR at birth and was even talking until a few weeks ago) is due to calcification in her brain. If she has calcium building up in her brain, it’s likely that we’ll see even more drastic changes in the future.

For now, it looks like some American Sign Language classes are in our near future, as well as some new friendships in the Deaf community, possibly schooling at California School for the Deaf (which is conveniently located in Fremont, not far from where Kevin works), and possibly attending the deaf church in Fremont (which shares a building with our old church).

Finally, we’d like to thank everyone again for your prayers and for your patience while we type up the Care Page and blog updates. We know it isn’t easy for some of you to wait so long for news, but it’s a little overwhelming to deal with all of the text messages, phone calls, emails, and Facebook messages from everyone individually. If we didn’t get to your message, sorry; we hope you understand.

P.S. If you are the person that was setting off fireworks in Max Baer Park behind our house last night, I hope that last one at 1:30AM blew off your fingers. Get a job and get some sleep.

In Case You Haven't Heard…

In case you haven't heard, Kathryn hasn't either. But we'll get to that in bit. Katie Beth has just recently finished her “one year” follow-up appointments. She needed to stay in physical therapy for her first year and then until she was walking. She just graduated from PT last Wednesday by standing up on her own without assistance from a wall or chair, and she took 10 steps in a row. She has been on the verge of walking for around five months but hasn’t really progressed since March. We’re very excited that she’s now finished with PT.


Her one year follow-up neurology appoint in May, on the other hand, was a mixed bag. We were hoping to get a follow-up MRI to confirm that Katie Beth was totally healed and her brain had stopped swelling, but that didn’t happen. Her neurologist strongly recommended that, since she had no symptoms of vision loss, hearing loss, or seizures, we skip the MRI so that we wouldn’t have to sedate her (which is risky with small children). It’s great that we didn’t need the MRI, but we didn’t get the closure we were hoping for either. May 14th we had her vision tested, and she passed without issue. We’re thankful that her vision is good and she’s developing normally physically.


Her hearing tests have been a different story though. We’ve seen the audiologist twice, and I now have her official test results sitting next to me. Live voice: no response. 500Hz: no response. 1000Hz: no response. No response; no response; no response. The first nine test results yield “no response” from Katie. In fact, the only positive result was a DPOAE test of her inner ear which shows a “reduced response” on the right side for tones ranging from (turn your volume down for these) 750Hz to 1500Hz. So she can only hear high whistles and really high whistles, but it’s something. I’ve already filled out a subscription on Amazon.com for a helium tank to be delivered every few weeks so I can talk to my daughter.


The big question now is why she’s hard of hearing. We know she doesn’t have anything blocking her outer or middle ear on either side, so maybe the sounds aren’t getting to the brain (that’s bilateral sensorineural hearing loss, or SNHL if you’re taking the class for credit), but we don’t know the cause. It’s possible that her brain is swelling again and pinching the inner ear. A shunt to drain the fluid might fix that and restore her hearing in this case. It’s also possible that the calcification in her brain, caused by the HCMV, now prevents her brain from interpreting the sounds when they arrive, rendering her deaf even though everything is fine mechanically. This could eventually lead to blindness as well. For now, however, only her hearing is effected so career opportunities in heavy construction equipment, big rigs, and ninja are still on the table.


In the next few weeks she’ll have more appointments which should help us determine why she’s losing her hearing. First up is an auditory brainstem response where she’ll be sedated and connected to an electroencephalography (EEG) machine. Tones will be played into her ears and they’ll be able to determine whether or not sounds are getting to her brain. This won’t tell us if her brain can interpret them so she can “hear” the sound; it’s just whether or not they’re getting there. If they’re not getting to the brain, I think an MRI is the next step. If they are getting to her brain, and we already know she can’t hear them, the next step is to enroll in a family American Sign Language class.


As always, we appreciate your prayers for Kathryn and for us. We know plenty of families that have much bigger challenges, but we’re disappointed and a little overwhelmed nonetheless. It’s not as bad as it could have been, but it wasn’t what we thought just a few months ago.

Nine Month Update

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.

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/ 

March 29th, …And the survey says?!

We finally received the results of Kathryn's genetic tests! In case you missed the first half of season one, let's review. Most of Robyn's pregnancy was fine—even boring with hardly any symptoms—then one day they said she had stopped growing and wanted to induce labor because they didn't know what was wrong. A few days later they said "no, she's still growing so we aren't going to induce, but she has brain damage." Soon they decided to induce anyway, because they didn't know what was causing the brain damage and decided that she was, after all, a little small (though, they didn't know how small). Then they told us something was definitely wrong, but they didn't know what it was. A day or two later they were saying "wow, she looks normal" and didn't know how that could possibly be. Then it was a brain storage syndrome, but they didn't know which one, and then there was the time she had HCMV—although the brain damage caused by HCMV didn't typically look like this, so "this is confusing," and "we aren't sure what it means." Then she was totally fine, except for this brain storage syndrome that she may or may not have, and was sent home. The long-chain fatty acids looked okay though, and the first half of the tests came back clean so it probably wasn't a storage syndrome, but they still didn't know and said we needed to wait 7 – 21 days for the tests. Forty-two days later they didn't know what was taking so long with the tests and, by the way, the numbers from first half of testing all look good but the ratios are wrong. "What does that mean," I asked, and was told—you guessed it—"I'm not sure." That pretty much wraps up the first half of "As The Kathryn Grows" and I know a lot of you have been waiting for this—some of you rather impatiently, I might add—so without further adieu, let's open the envelope and see what new thing we don't know today!

The results of Kathryn's genetic tests came back CLEAN. God has answered our prayers, and there's no brain storage syndrome. She's expected to live a perfectly average amount of time. By the way I do know the average life span for a female in the United States is 80.8 years which estimates her death on December 8th, 2092. But let's not get morbid here, folks. So anyway, "what DID cause the brain damage", you ask. Well, Kathryn's MRI was taken to a conference of neurologists for show and tell. I suppose that's a normal thing for them to do, but if it's anything like the conferences I go to, they're mostly eating at the fanciest restaurants they can get reservations at and swapping neurology jokes. That reminds me, did you hear the one about the guy who needed a brain transplant? He was told the brain of a top-notch mathematician would cost him $10,000, and that of a world-renowned astro-physicist would run $20,000. If he wanted the brain of a politician, they said, he needed to fork over $40,000! He says to the doctor, "Why on earth does the brain of a politician cost so much more than those of people who are clearly much cleverer?"

Oh, right the MRI. I get distracted easily; sorry about that. Okay, so the neurologists at the conference decided that the HCMV was the likely cause of the damage shown on the MRI. If you remember, we were told that a viral infection in the brain would have calcifications that weren't symmetrical and evenly distributed like hers are, but the conference consensus was that it isn't so unlikely. According to ostispregnancy.org (PDF), "eighty-five to ninety percent of babies that are born with a CMV infection (congenital CMV) will not show any symptoms at birth. Most of these babies will not develop problems from the disease later on. However, 10 – 15% of babies with congenital CMV that do not show symptoms at birth will still develop some of the long term effects such as hearing loss and learning difficulties." So in six months we'll have her hearing tested again, and around two years of age, if she's falling behind in her development, we'll do another MRI. In the mean time, we'll continue to pray and wait. There's nothing the doctors can do at this point, except observe and test, but we've seen God do amazing things for Kathryn already and look forward to watching our little miracle grow up and develop into whoever she's going to be.

So what about that politician's brain? The punchline is… OH LOOK, shiney things!

Hey, did I ever tell you about the time I stole a baby?

Baby Thievery

Robyn and I had come to visit with a friend who was waiting to deliver at Valley Care Medical Center and we had Kathryn, our three week old daughter.  When Robyn delivered at Kaiser in Walnut Creek we were told children under 12 were not allowed unless they were siblings and, if I had thought about it, I would have assumed this would be the same at VCMC.  However, our friend hadn't mentioned this rule, so it didn't cross my mind and we brought her along.  Of course we were stopped immediately at the front desk and I was sent home with Kathryn to feed her while Robyn visited with our friends.  That's how I ended up in the elevator, alone with my daughter, and almost found myself in a rent-a-cop prison (which doubles as the hospital's janitorial supplies closet).


As the doors to the labor and delivery elevator were closing a nurse who happened to be walking by paused to ask, "Did you sign your baby out?" and just as they closed, I replied with a casual, "nope."  I knew what she was really asking me though, since Kathryn had just been released from the NICU two weeks before and the process for taking your baby home was still fresh in my memory.  She thought I was stealing a baby, and might have been especially sensitive since a baby went missing in another local hospital just a few weeks before.

I actually made it all the way outside with my "stolen" baby as booty before they ran me down with shouts of "sir, please stay where you are," "do not move," and "we need to inspect your baby."  I briefly thought about running just to see how far I could get before they gave up, but on the off chance the gun in his holster wasn't just the squirt kind, I decided to stop.  It wouldn't be my first time in police handcuffs, but I hadn't done anything wrong this time so I turned around to face the badged man with the gun, a hospital administrator with a whistle, and a nurse calling in a "code pink" on her walkie talkie.  They told me that my baby had a bracelet on her leg which needed to be removed before she left the hospital, and were a little flustered when I explained to them that my girl had been born three weeks prior at Kaiser in Walnut Creek.  I told them I was pretty sure she didn't have an alarm bracelet, but they were welcome to check.

I've since thought about going back to test their procedures.  I had gotten all the way out to the parking lot before they stopped me and, since there was a blanket over the car seat the entire time, I was pretty sure they had never actually seen a baby.  Next time I'll load it with a sack of potatoes and toss it in the bushes as I dive into the getaway car.  Anybody wanna drive for me?