Oral Surgery Update

Today we had a successful visit with the oral surgeon. While parking was still a PITA, everything else went smoothly. The Combeam CT showed that my son's supernumerary tooth was free and clear of the permanent tooth, and the subsequent extraction was relatively quick and easy. Since we got up a lot earlier than usual, so we're all smoked.

The bathroom is almost done, but I discovered a major problem with the function of the tub faucet that was installed. While the tub "looks" ever so inviting, I can only draw a cold water bath right now. It's only a problem because our water is heated in an unconventional way that makes the average single valve fixture dysfunctional in our home. The on-demand water heating requires separate controls for the temperature and volumes. So I've been back on the hunt for a fixture that is both compatible with the rough in valve (which thankfully is a universal model) and our current trim finish. Of course finding this ridiculously expensive fixture locally wasn't happening. While it was still expensive, the supposedly correct faucet type was available online for a little less and should arrive tomorrow. Till then, it's showers in the old blue bath.

I blog because I like talking to myself...

yeah that's it ;)

Na, I just need to share my excitement with someone... or nobody at all. I do miss the old days of blogger...before facebook ruined us all.

Bathroom update: Looks like all the tile is up and tomorrow they will begin grouting. We're all so eager to try out our new bathtub. I haven't had a bath in so long. The sooner I can stop using our "blue" bath shower the more relieved I'll be. As the last vestige of 1966 era tile work in the home, I'm constantly afraid the children will yank a towel rack off the "blue" bath wall as well. They just can't seem to not grab onto those things. This evening one of them was caught using the towel rack as a grab bar to climb onto the trash can in order to turn on the light. Usually we have these neat little light switch extenders on the switch so they can reach, but not in the "blue" bath, which they usually don't use. I don't think it's irrational to fear they could cause more irreparable damage to the integrity of the current tile finish, and destroy another bathroom in the house. As you can guess we're not installing anything that could be yanked off the wall into the new bathroom. Even the toilet paper holder is going to be freestanding. Anyone who moves in after we're done here can install anything they like (provided they buy the place).

Oral Surgery Update: With just a week to go before our next appointment with the Oral surgeon, my cold feet were beginning to freeze. After some research I learned that it's not always necessary to pull fused teeth. While a rare occurrence, in cleft affected individuals it can be much more common. There were a few research articles, mainly case studies, describing the successful sectioning and modification of a central incisor which has a supernumerary (extra) tooth fused to it. At our first consultation our Surgeon had stated his plan for a possible fusion would be complete extraction to follow up with an implant in a few years, the logistics for which would probably be a nightmare given our the possibility we won't even be living here in a few years. After explaining all this to my son (minus the logistical complications of course), he indicated he didn't want his whole tooth pulled and would rather keep his real tooth than have to have a fake one later. So over the last few days I've been tearing apart my bags trying to find the doctor's business card so I could contact him about our concerns ahead of time.

Serendipitously, a phone call this evening from the Oral Surgeon has brought us great relief. He wanted us to arrive earlier than scheduled so they can do a Com Beam CT scan to determine the exact status of teeth in question. This timely call was heaven sent, allowing me to express my son's wishes and getting a better understanding of all our feared unknowns. I can't explain how much better I feel about this up coming appointment.

No turning back now

The demolition has begun. By the end of the day the bathtub was also gone and all the drywall (or whatever walling was used back when this house was built) was gone. Much to our delight the studs and remaining structure look good (at least to our untrained eye). We didn't see any signs of water seepage or damage what-so-ever.

Though the day was not without a bit of drama. When the workers initially began work they mentioned that they thought we needed to completely removed the radiator piping for the demolition. The contract guy hadn't mentioned our radiator lines being a problem, so this threw me for a spinning loop. After talking to a representative from our oil provider, who also services boilers, we learned that removing and replacing radiator lines is no small task and one they wouldn't likely be able to get to for several weeks. It wouldn't be cheap either. So I told the contractor that touching those pipes was pretty much a no-go. Thankfully, the worker figured out a way to remove the tile on the wall without disturbing the pipes. What a cloud of doom that had been. I couldn't help but feel like such an idiot for not being better prepared. It was such a relief to get back to worrying about what paint color we should select for the wall.

I'm not sure how far they'll get tomorrow, but the original floor is still here, so I imagine there's more demolition to come. We weren't home when they finished today as our long awaited appointment to see the Oral Surgeon was this afternoon.

Should you ever need to get to Bethesda Naval Medical Center, please note that there's virtually no parking for oversized vehicles. Our family vehicle wouldn't clear most of the parking garage spaces, and so eventually my husband had to drop our son and me off at the front door and search for a spot in the NEX parking lot.

While we were ontime for our appointment we wound up waiting perhaps an hour before being seen, and by this point in time much of the staff had gone home, and nobody was available to run the 3-dimensional x-ray that would have been needed to determine the exact nature of the teeth my son has in cleft affected region of his gum line. Perhaps we'd like to schedule another appointment for another time?

Since at that moment we were being seen by a 4th year resident, not the doctor we were suppose to be seeing, I requested that he at least come in, look at the x-rays I had (taken by our awesome dentist) and give me an opinion, as we've already wasted spent two months waiting for the chance to consult with an oral surgeon.

To be perfectly honest, if I were willing and capable of paying 100% out of pocket, we could have consulted with a civilian Oral Surgeon months ago. I was kind of mad at myself for not being more prepared to just go elsewhere. I've got a few names, but no clear path to utilizing our insurance to cover this. When our orthodontist wrote up the consultation request, I contacted the Cleft Team and asked them for a referral. To which the response was, "who said they (The Bethesda Cleft Team's Oral Surgery) couldn't see you?" Then, the cleft team coordinator promised to bring our case up at their next team day meeting. After which I heard nothing for several weeks. Actions, or in this case, inactions speak louder than words.

So in the mean time I ask our dentist to take a look and see if he could pull the "extra tooth." He'd already pulled a tooth from this exact same spot, perhaps all we needed was another simple extraction and the third tooth could descend?  However, his x-ray couldn't guarantee that these teeth weren't fused together, which can happen in cleft cases. So we tried again to get a consultation. After my husband made the call, scanned and sent the consult request, they scrounged up an appointment a month later.

So, after all this waiting, first the couple of months, and then today in the office, to hear "oh perhaps another time" was just a touch aggravating. However, I'm quite proud of myself for not having to drop the "I'm a nurse card" and was able to negotiate some sort of plan out of the doctor today. I suppose I probably come off as over-invested mom, since I didn't use all of the proper terminology, but had essentially verbalized comprehension of the possible scenarios before the surgeon stated them in his terms. Thus, he got right to business in formulating a plan. Either there are two separate teeth and he will extract one, or they are fuses and the whole "deformed" tooth would be removed.  While I'm not sure of the soundness of this plan, and if there might still be a better solution (save if the teeth are fused, could they perhaps shave it or something), at least we have made some forward progress, and have a date (in less than a month thanks to a cancelation). In the mean time I can research this further.

The thing that was most insulting was the whole time we were waiting to be seen, the staff could be heard making jovial idle chit chat in the hall ways. They didn't seem to be very busy at all. Had someone been tracking us from the beginning, they could have been running that x-ray while we waited. Of course nobody was attending to my son's case at all until they'd all gone home. By time we were done consulting with the doctor, the whole place was deserted, building lights out. My impression of the department is it didn't seem very efficient. If I think about it much more I'll be too nervous to allow them to work on him. What if they're this idle and inefficient when my kid is under sedation and his airway could become compromised? Do I trust them with his life? Seriously, while rare, children do sometimes die while undergoing routine procedures all too often because someone was being complacent and neglected to attend to the basic oxygenation needs of the patient... Joan River's being our most recent tragic example. Oy... I'm not feeling very reassured now am I?

Braces: soon it will be two in metal

and we will be so broke!

This week has ben B U S Y. Apart from our regularly full schedule, we had a bunch of additional appointments and Dad had to go out of town for a few days. I signed a contract to have our damaged bathroom fixed and spent a copious amount of time reading reviews on various bathroom accoutrements. I think I've looked at nearly everything in the bathroom sections online and in store at both Lowes and Home Depot. All the kids (except the baby) saw the dentist for the bi-annual dental check up and cleaning. Yes, all in the same day, because our dentist is 1. either crazy    and/or   2. really sweet and understanding. I pick number two.

The following day we had back to back orthodontist appointments for the oldest two children. The eldest is currently in full metal gear, receiving full treatment. While his sister has just finished being evaluated for the necessity of a stage one orthodontic treatment plan. She has quite a few baby teeth in the upper jaw that don't seem to be coming out as quickly as they should. Though the first four permanent teeth are in on the top front, the canines and bicuspids (I think that's it) are so large and crammed in that they aren't descending as they ought, and so they aren't doing a very good job pushing the baby teeth out like they normally would. Meanwhile, one of the front permanent is showing signs of wear from the poor alignment. Everyone is in agreement that we need to start work on her teeth now. So very soon we will have two in braces. The kids have been strongly encouraged to consider becoming orthodontist when they grown up, as it seems to be a very promising and lucrative career.

Our week of the mouth isn't quite over, as Monday the oldest will see the oral surgeon to assess the maloccluded tooth/teeth in the cleft affected region of this gum line. Our dentist couldn't be sure if the x-ray was depicting one giant tooth, or two individual teeth trying to descend into the same spot at the same time.  This appointment will be all the way up in Bethesda and I suppose we should count ourselves lucky we've only waited two months for it.

Go ahead and ask me about bathtubs! Our current, 1966 pink bathtub is cast iron and likely weights a whopping 300-400 lbs. They're going to take a sledge hammer and break it apart before removing it. Many still hold the classic cast iron as the pinnacle of timeless quality, but nobody wants to lug one up a flight of stairs, so we're going with a inexpensive metal cast-iron -want-a-be tub that is hardly half the weight, and I pray equally as nice. My hope is that a white enameled tub will remain undated and timeless. I also picked out the nicest, cheap, porcelain tile I could find at Home Depot, and decided it won't be necessary to tile the entire bathroom wall as it currently stands. We'll save at least $400 by only installing tile floor and bath surround. Pray there aren't any surprises waiting for us behind those walls. The contractor didn't think we had anything to worry about, but you never know. It might take as much as two weeks to complete. I sure hope it goes faster.

It was my husband's turn to bring home the St. Joseph statue from his Covenant Keeper's meeting last week. I wonder if that's a sign for me to drop in a prayerful request to the Holy Family household protector. Sure seems like a good idea, don't it!

One tooth, two teeth, three teeth...Ah Ha, Ha, Ha!

Think back to your childhood, when you used to watch Sesame Street, when The Count came on to reveal the number of the day. It's with this jovial and almost sinister voice I think with when I consider all the teeth my son has in his left numerary bicuspid area, directly beneath the area of his now repaired cleft lip. Today the orthodontist asked me if I had gotten that tooth pulled as he'd asked before we began treatment. To which my response was, "we sure did," the memory of my son sucking on a blood soaked piece of gauze for half a day fresh in my mind.

Well, the tooth growing in it's place doesn't look right. In my mind I was responding "well of course it doesn't" before I verbally stated, "these seem to be tooth fragments." Some questions arose about his past x-rays, as this office doesn't appear to have all the ones I presented to them on file (eye roll please!) If they had they would have known this was not a normal tooth currently erupting and a larger, more fully formed tooth is lodged up in the upper jaw. At this revelation our (Tricare appointed) orthodontist stated we needed an oral surgeon, as he was "just a lowly orthodontist," and this was beyond his expertise. The thought of trying to get authorization for this through Tricare sent my head into a tizzy that's for sure. Since I'm not alone in this journey and I called upon a friend who has been there and very recently done that, and she eagerly agreed to help me walk through this one. She's got connections who are in the know...and I ain't ashamed to ask for her advice.

And I thought my day was going to be challenging because it seems time to get Number 2 evaluated for orthodontic care and I had planned on beginning the paperwork for that during our appointment...which I did. Never time to get comfortable, as once you've mastered some little trial in life, along comes another hurdle to recon with. Despite all that I felt like I've accomplished a lot today, fresh and ready to take it on!

Up to today I was thinking that the smartest thing to do would be to have both children see the same orthodontist (booking appointments at the same time seems all to convenient). However, perhaps I should seek out a few different opinions for my second child because according to her regular dentist (and though she is not cleft affected) her teeth crowding and overbite are much more severe then her big brother. He always makes such a big deal about how amazingly (messed up) her teeth are, but thinks our cleft affected child isn't all that bad...ironically. That worries me some.

Oral cleft orthodontic implications

My eldest son was born with an incomplete, unilateral cleft lip with no initial appearance of palate involvement. However, as teeth began to erupt it was clear his gum line was somewhat disturbed by the cleft defect as well.

Honestly, aside from the initial two lip repair surgeries (one at 2 months and another to fix the botched first surgery at 2 years) the cleft has been the least of our concerns when it comes to our firstborn. While having a cleft made him a shoe in for speech therapy services, his needs weren't particularly articulation intensive. Rather his needs were more complex with deficits in comprehension and language formation. My inclination for quite a long time was that he had an Auditory Processing Disorder, however, it was much easier to diagnose him with PDD NOS (now considered to be part of the Autism Spectrum) then it was to have someone confirm my suspicion of APD. Either way, the therapy options available to us were pretty much the same, speech therapy.

Unlike other cleft affected children my son hasn't had to contend with multiple complicated surgeries. Even before his initial repair he had little trouble breastfeeding and thus has never had any ear infections (also a rare feat in the cleft affected world). Perhaps most importantly, nobody ever notices he was born with a cleft and I've never heard him once say anything about it. Most days, we never even think about it.

However, now that he's in the orthodontic phase the couple of malocluded teeth are requiring some strange and uncomfortable orthodontic applications. A month before braces were placed he had to have one tooth removed, which he tolerated very well. Then to move the largest malocluded tooth, they had to put it under traction of sorts and add "turbos" (sort of like tooth stilts) to prevent him from closing his mouth into a tight bite and leave clearance for the turning tooth. The turbos change the way he's used to resting his jaws and (as I can only imagine) make one uncomfortable with a constant strange sensation of a pencil always stuck between your teeth. Finally the day for the turbos to be removed came and we were all much happier for it.

Unfortunately, today they decided that they needed to place turbos again when they discovered that this second tooth (previously unable to decent as it was being blocked by the first malocluded tooth) is also twisted 90 degrees from who it should be oriented. Thus, he's back to having the dreaded turbos and that weird mouth sensation again. While he's lucky to have a full mouth of teeth (many cleft affected folks are missing quite a few) to work with, days like today are annoying reminders of his birth defect.

On the way home a show on Ave Maria Radio was talking about the concept of offering up your suffering for the sake of others. So I tried to explain to my son that perhaps he could devote his discomfort to the good of others. I don't think he quite grasped the concept, but he is being a trooper so far. I pray they can take those turbos off next time, as they really are quite awful, making eating more difficult than it need be.