Timothy update

Here's what went down yesterday: Appointment with the geneticist went very well although very stressful and scary at times. They believe this calcification of his airway is either 1) a hormonal issue, 2) a disease known as Keutel ("coid-al" is the way it sounds) Syndrome, or 3) just something that's happened for no real medical reason. Blood was drawn yesterday (unbelievably horrible experience) and a urine sample taken to rule out the hormonal issues. We should know the results by Monday at the latest. All the hormonal issues it could be are not life threatening or even something that would affect his quality of life according to the geneticist. To determine if it's Keutel Syndrome, several tests have to be performed. Keutel is a "clinical" diagnosis meaning that there isn't any one test they can do that says he has it or he doesn't. They take a physical exam coupled with several other tests to see if all the pieces fit together for this diagnosis. The tests he needs are:
1) a neck x-ray (done yesterday),
2) a chest x-ray (done yesterday as well; both x-rays taken to look at the bone development as Keutel tends for bones in both places to be more calcified that normal),
3) an ultrasound of the heart and an EKG (I can't remember why this is necessary but I do know that he said -- several times -- that this isn't life threatening nor something that would require heart surgery; he said something about being "just another piece of the puzzle"),
4) a CT scan of the middle ear bones which requires sedation so they will do this the day of surgery (May 16).

Keutel Syndrome is not life-threatening or even very serious but is associated with moderate hearing loss. Once we have all the pieces of the puzzle and once his tubes are in his ears, then we will repeat a hearing test to see what, if any, kind of hearing loss he has. If it's Keutel, then we should expect hearing loss. If the hearing loss we know he has now is related to the fluid, then a hearing test after tube surgery should be normal. The geneticist didn't seem to think that any of these tests should delay or cancel the surgery. If there is something going on with his heart, however, he'll have to be "cleared" by a cardiologist for the anesthesiology department before surgery begins but he said he doesn't think that will happen. So, now, we wait. Wait for test results, wait for the EKG/heart ultrasound to be scheduled, and then wait to see if the ear, nose, throat dr wants to change or do anything differently as far as surgery goes. As of right now, we're on for surgery on the 16th as scheduled.



Busy days....here's a snip of what's been going on at the Stevens house:

Some great school stuff -- Nathan made a world map (we were studying earth/maps) and a volcano with our friend, Fionna. Volcano made out of air dry clay filled with equal parts baking soda and vinegar, a few drops of red food coloring (should have added a whole lot more!), and a few drops of dish detergent. It was neat!

Caleb's preschool class at co-op did a "tea party" and invited us moms (and, for us, Elizabeth, John, and Timothy, too). Caleb is in a "mood" lately and doesn't care for his picture being taken so he was acting up pretty good here.

Practicing for the little performance they put on the last evening of co-op.


Poor Elizabeth

That's what everyone always says when they hear she has 4 brothers....Well, I keep saying "don't pity her!" and now I have pictures to back me up! :) She can hold her own -- just look how dirty she is from playing in the backyard the other day!

Posing like a girl, dirty like a boy!


look at those dirty fingers!

New dates

Thursday, April 24th, 10:30 a.m. -- Timothy will see the geneticist for a consultation and/or testing

Friday, May 16th -- Timothy's new surgery date (we won't have a time for his surgery until the day before but they say they always take the littlest patients first so it'll probably be pretty early)


What on earth am I supposed to tell my children?

(this post not suitable for younger readers)

I grew up in the heart of the Bible Belt in northeastern Tennessee. My Dad was saved when I was very young and I don't remember any time before he became a preacher. I went to public school but public school back then was very, very different from what it is now. Most of the people I went to school with at least went to church on Sunday mornings. It was the "popular" kids that were into the "bad" stuff -- but most of what I heard of was a little bit of drinking. I can honestly say that I remember only one incident in high school of hearing about a couple my age having sex and that story in retrospect sounds like a good urban legend (the couple supposedly being caught in the dugout of the baseball diamond). College wasn't that different of a story -- now, bear in mind, I was never a popular kid (too fat to be so), I was a band geek, and most everyone knew of me as a Christian (or, at least a preacher's daughter) and I never went to the mall or any dances so it's not exactly much of a stretch of the imagination that I just didn't hang out in the right circles, even in college. I met Jonathan within days of landing at Carson-Newman and, well, never really looked for very many other friends! :) And, even though we couldn't stand each other that freshman year, by the time we were sophomores, I was best friends with my roommate and a handful of her friends and consumed with singing in Foundation and Jonathan. Jonathan and I were engaged in January 1998 with a wedding date set for June 20 (almost 10 years -- yay!). In April (or was it May?) of that year, we rented our first apartment practically on campus. Once school was over, he lived in the apartment and I stayed within walking distance with some other girls until our wedding. As scandalous as it sounds, I even spent the night in our apartment with Jonathan a couple of times when the girls from the other apartment were going to be gone (can't stand being alone at night). BUT, and here's where I'm going with this -- we made it to our wedding day WITHOUT having sex, even though we slept in the same house several nights just weeks before our wedding! There was a time that I just assumed we were the norm. I was FLOORED to find out close friends both who were recently married -- friends who are Christians, who I would have thought were "just like us" -- had premarital sex with their boyfriends when they were JUST boyfriends (not fiances, in other words), one of them slept with her boyfriend on their first date! (Don't misunderstand, I'm not passing judgement on them!) While I'm not passing judgement, make no mistake that I AM saying that sex outside of marriage is wrong, plain and simple. It's not the way God intended it to be. How do I give my children something strong enough to get them to persevere in the face of such overwhelming temptation and perhaps even ridicule? Obviously this is something that needs great prayer but I can't just pray about it without praying for Jonathan and myself to have the right words -- what I mean by that is I can't just pray about it but not take the time to educate my children about it. And I'm not saying that sex is the only subject that I need to educate my kids on, either, don't misunderstand. This just seems to be such a biggie. If premarital sex is assumed as normal, especially in Christian homes, then we as Christian parents are missing the mark. Sure, I still have young children, but I believe that parents can do more than have a little talk and then just pray that the outcome comes out right. I don't see how this can be a one-time-conversation-and-done or a "they're going to do whatever they want to do and there's nothing I can do to stop it" deal. Sure, there's nothing we can do as parents of teenagers to stop our teenage children from having premarital sex. I agree with that statement. But there is a lot we can do when they're young, when they're mold-able. I think about Nathan -- he's learning an awful lot about marriage and family simply because he has a married Mom and Dad, right? And while we haven't had "the talk" with Nathan about sex, we have already had "talks" about how it takes a Mommy and a Daddy to make a baby and about how God intends for only a married man and his wife to have babies (and, for that matter, how God intends only for men to marry women) so we're not that far away. Just the other day, there was commercials on about an Oprah show featuring a "man" who is pregnant. Nathan asked me how that was possible and I explained to him (after having to find out myself!) that "he" was born a girl but decided as an adult that he didn't want to be a girl (at least on the outside) so he found doctors to help him become a man on the outside. Several minutes passed and Nathan said "Isn't that a lie?". I thought he meant that I was lying to him and I tried again to explain it and he said "No, I mean wanting to change from a girl to a boy, isn't that just like a lie? I'm sure God isn't happy with that". Right on, my boy, right on! While praying that we're building some good foundations and for the future to come, I encourage anyone reading this who is a Christian parent with children still at home to do the same. Let us be found faithful in teaching our children God's design for marriage, sex, and family.


4 months old

(as of yesterday)....

This month has been rough with all the new medical stuff going on but you'd never know it when you look at Timothy! He's just an overall happy baby! He's starting to giggle and laugh and starting to make attempts to turn over but hasn't yet. Because of his congestion, we choose not to let him sleep on his back so it's hard to learn to roll over when you're in a bouncy seat or swing all the time. But now that we think his "congestion" has nothing to do with a cold, we plan on asking the doctor about letting him sleep on his back. He goes for a check-up on Saturday and I'm very curious to see what he weighs. According ot our scale, he's over 16 pounds already. He's definitely starting to have a sort of schedule which happily includes sleeping about 9 hours at night. He goes to bed around 9:30 and will sleep sometimes as late as 7:30. He's still a funny eater -- almost like a grazer at times. He's a joy to be with and thinks that having his diaper changed and especially his clothes changed is just hilarious as he laughs nearly the entire time. He's also very ticklish on his feet and ribs but sometimes under his chin, too. We'll post the official stats next week after his dr's appointment but here's some new pictures!


Another update

Talked to the ear dr's secretary today....she said that while the dr is okay with operating on a Friday (which was previously questionable), he is saying that he is not okay with operating before we've seen genetics. The genetic dr can't see him until 5/6 but they agreed to look at T's information and either offer a suggestion and/or work him in sometime soon to where he can keep the 4/25 surgery date....

On a much brighter note, our pediatrician called today. He wanted to know if the ear dr had contacted me and I told him what all I had been told. He said that he did agree that we're taking the right steps with checking things out with genetics, but that he wanted to be a "voice of reassurance" for us -- these disorders we might be testing for usually carry "pretty significant symptoms that we haven't seen in Timothy thus far" (his words as I remember them). He assured me that the chance of T having one of these disorders is very slim and that he would be floored if we found out that he has something along these lines. I asked him if this is common and he said that he believes it is. However, they can't back that up with statistics because the way drs know that this calcification is happening is by doing an airway flurosocopy like they ran on T. Obvoiusly they don't run those tests on babies who aren't having issues. What that means, he said, is that if it is as common as they think it may be, then all the babies they suspect who has this, outgrow it and it never becomes a problem. So....all that to say -- our pediatrician really thinks that 1) we should run the tests to make sure we're not dealing with something severe, 2) it's highly unlikely that we are dealing with something severe, and 3) it's very likely (in his opinion) that this is something T will outgrow and might not need any kind of intervention.

I hope that makes sense....if I haven't heard from our ear dr's secretary and/or genetics by Monday afternoon/Tuesday morning, then I'm to call them to see what's going to happen with the surgery date. Of course, I'll keep everyone posted.


Prayers for Timothy....again

Rec'd a call from Timothy's ear dr this morning (about 5 minutes before I should have been walking out the door for co-op -- lovely timing). It appears that once they pulled the x-ray film of T's airway fluoroscopy from last Friday, that there is something there that needs attention, although it could still turn out to be something he can outgrow. Our airways are made out of cartilage like our ears and the tips of our noses....according to the x-ray, T's airway is starting to calcify. That is, it's starting to turn hard, like bone. While it doesn't appear to be causing any serious issues as of now, this is something that we must pay attention to. There are a handful of genetic disorders that cause cartilage to turn to bone. The only way to find out whether or not T has one of these disorders is to take him for genetic testing. They are supposed to be calling me in a day or 2 with an appointment to take him for that. If he does not have one of these disorders, then they will watch him carefully as he continues to grow to see if he outgrows this. If it begins to worsen or affect his breathing, then they will need to intervene surgically. He said one of the common ways they fix something like this is to put a little slit in the airway, remove the calcified cartilage, and replace it with healthy cartilage from a different part of the body. However, if he has one of these disorders, then they would have to pursue something else as they wouldn't want to put cartilage there that would eventually harden (does that make sense?). What that would entail, he did not say. He did end on this note: "I'm not telling you that there's something horribly wrong with your son. What I am telling you is that we found something unusual and we need to pursue it to make sure we're not dealing with something severe. I wouldn't loose any sleep over this. I think he's going to be just fine." As of now, his tube surgery is still scheduled for 4/25 at which time they will still do a bronchoscopy. One of the reasons for doing that now is to see just how bad his cartilage is calcifying and to determine future treatment, if necessary. Unless we get into the geneticist and have test results by that date (highly unlikely), then they will not be doing anything to try and correct this problem on that date until they know for sure what we're up against (or not up against).

On a totally different note, this blog that I've been following (cfhusband.blogspot.com) about a woman named Tricia who has cystic fibrosis and delivered a premature baby at 25 weeks gestation in January -- she endured a double lung transplant during the wee hours of the morning today. As of this writing, she is out of surgery and in ICU but obviously has a long road ahead of her. I know you don't know them -- I don't even "know" them even though I've been faithfully reading their blog every day -- please join me in praying for them.