VeeGee Update

It's been a while since I posted anything, (I've noticed that many blog posts by many bloggers begin that way, as if the multitude of readers hadn't noticed, or, rather, as if they cared). Anyhow, we are careening into summer and really looking forward to the break from school, for both VeeGee and me. I just graduated with my MFA in creative writing, have been on the job market for a while, to no avail, and have decided to go ahead and enroll in the PhD program. Partly, that's because I want to continue to delay paying back student loans, and partly because, well, I'd like to be a doctor. In response to that lovely Commerical Appeal comment section dude who suggested I was selfish to pursue education, well, face palm.

Since the last post, and the hoo-ha surrounding the health care debate, I've been reluctant to share our story any further, at least in this context. But, so many incredibly lovely friends have asked about what's going on that I thought I'd go ahead and do an update. I really appreciate, can't even express how much I appreciate, the support and love we have received from our amazing community. We're so grateful to have so many lovely friends who've been so generous to us.

There is no doubt that this life we've got is difficult. But I have no delusions or suppositions that what we experience is really all that special. People tell me all the time that we're heroes and stuff like that. I feel very strongly that this is not the case. We're people who put one foot in front of the other. And we're fortunate in ways that so many are not. That fortune is not because we are specially gifted by God because of who we are. It's simply a result of the crapshoot of life.

On the Health Front:

Hmm, where to begin? In February, we noticed a pin-sized hole in her trach stoma and I pretty much freaked. Turns out it must have been there all along. The method that the doc used to close her trach was to simply pull it out and allow it to close on its own. Typically it closes up like any other wound would. Apparently, hers didn't close completely. She has a cough of unknown origin (pulmonary/gastrointestinal, we don't know for sure). It is an extremely high-pressure cough; I can't really describe it any other way except that it sounds like she's trying to get something out of her throat. We think that the frequent retching (a result of GERD, for which we had a nissen fundoplication performed) paired with her pulmonary issues (she has "dirty lungs," whatever that means) cause the cough, and further caused the hole to get large enough for us to see it. There's a tiny whistle that we can hear when she coughs now, and we've occasionally noticed droplets of water on her neck after she drinks.

When we took her to the doc (post haste!) to see about this, it was suggested that we needed to get a handle on the cause of the cough, and try to get it under control, as repairing the trach hole would be moot, and even dangerous, if the cough causes pressure to build up in her throat. It could cause further, and more serious, injury. So, her doctor (an awesome ENT out of Vanderbilt), ordered a battery of tests, including a sleep study and a genetic study.

The sleep study revealed serious apnea, in addition to frequent waking. Also, she does not go into REM for any length of time at all. The supposition is that the apnea could be the result of the pharyngeal flap that we had last April. It has since been confirmed through a nasal endoscopy that the air pockets created by the flap are extremely small. Also shown, and this relates to speech not as much to the flap, she has no coronal closure (sorry, I really can't explain that) and minimal palatal movement. All that means is that she's hypernasal on some consonants and hyponasal on others.

So, the bad news relative to that is that there is going to have to be a "revision" of the p-flap. And what THAT means is that she will lose some of her ability to speak. At first we were pretty distraught by that information, but then we realized that this little one is going to figure out how to communicate no matter what. (She's a champ!) The surgeon thought that, maybe, taking her tonsils out would help, however it appears that her tonsils are pretty much nonexistent. SO, we're waiting to find out when he's going to schedule surgery, and hoping it will be soooooon, since the recovery for this one is going to be significant. Unfortunately, we don't have another consult appointment until June 9th. Ugh.

After that, she will have the trach stoma repaired, or, as that surgeon says, "revised." What they'll do with that is cut open a larger hole into her trachea and place another tracheotomy. Then they'll take it out and allow it to heal like it was supposed to at first. I don't really understand why they do it that way instead of just stitching it up. He's the doc though.

The genetic testing revealed that she has "extra genetic material on the long arm of her 14th chromosome." There have not been any other recorded cases of this particular anomaly, and we do not know what that means for her in terms of development potential. The doctors do think that this explains the multiple layers of disability with which she presents. One thing we do know, and we're sad about this, is that it will impact her decisions on having biological children, though we know better than anyone that children come in different ways. So, we may have the joy of extending our line through adoption once again. Of course, this is SO FAR in the future that it's almost silly to speculate about such things.

At the same time as all of this, two other things are happening. First, we are still trying to manage the retching and the, um, pooping. So, both "ends" are being addressed by still another doc, a GI. The reason this is so serious is because she's not gaining weight, hasn't gained anything in about six months. The problem is that, because she retches so severely when full, and because she can't eliminate successfully (and is therefore ALWAYS full), she's at the limit of her daily volume intake. She gets about 1000 calories a day through her g-tube, and about 100 calories a day via baby food and juice. You'd never know she's not "thriving" though, because she's a pistol and is just the funniest thing ever.

The other, probably lowest on the totem pole, is her dental issues. Because of years of almost-constant vomiting plus years of antibiotics and other meds plus severe oral aversion (making brushing a nightmare), her teeth are in BAD shape. The dentist found at least three cavities yesterday, but was unable to continue looking because, well, VeeGee kicked him in the crotch a few times. She's going to have to be put under general anasthesia to do any cleaning or fillings, and, since the only anesthesiologists that will touch her are in Nashville, we've added another long-haul doc to our list. I feel better with her being in Nashville for anything involving airway stuff anyway, so I'm kind of glad that it's worked out that there's a dentist who's already worked with our otolaryngologist who's willing to take her on.

On the Insurance Front:

We lost the appeal through TN Care, but were approved for SSI, contingent on my not taking a job (K's income bumps up against the maximum amount for qualification). We get a whopping $16/month in SSI payments, but that's the only way we can keep her TN Care. We weren't concerned about the amount, just the qualification.

So, in some sense, it's really just a stay of execution. If I'm going to work, I have to find a job where the insurance group is big enough to not be devastated by Virginia Grace's addition. I would also need to make enough where the cost of the premiums + the co-pays, not to mention the continued multiple trips to Nashville per month, would not further devastate us. Which means, I'd have to make a pretty penny.

We're really grateful for the additional time at this point, though, as she's got three major issues that need to be addressed within the next three months or so (at least two surgeries). We're just trying to take it one day at a time, clinging to each other, and feeling so blessed that she's a part of our lives.

AND THE FUN STUFF!!!

• She was voted "Most Improved Student" at her school. She doesn't like school, though.
  
• She has learned how to administer her own meds, and is trying really hard to "help" put her feeding tube in. She's very helpful.
• She is still obsessed with dinosaurs, but her new obsession is Scooby Do, which we do not allow her to watch since she has now decided that there is a "Creeper" in her closet.
  
• She's decided that she wants to be a chef when she grows up. The irony of that is so huge that I can't stop laughing. A chef who doesn't eat. Awesome.
• She's also decided that it's my birthday. Every day for the last month. I'm now seven. As long as I don't have to repeat adolescence and my twenties, that's fine with me.
• She said to me yesterday, after I told her that she needed to go try to poop, "I'm very very sorry, sweetheart. We're all out of poo poo. Maybe tomorrow. I'm very very sorry."
  
• Her favorite book, that she carries with her everywhere, is Burt Wolf's Table.

Basically, she's awesome, or, as she likes to say AWSHUM!

This cake was made of cornmeal, sprinkles, sugar, and water. And, of course, a birthday candle. It did not taste good. Yes, she is almost always clad only in her underwear.

T-Minus 44 Hours

In forty eight hours, VeeGee will likely be in the recovery room waking up from surgery. I had to take her to the doctor this morning because she's been hoarse the past two days and I was worried that there could be the beginnings of an infection that would knock her out of being able to have this surgery. And we've waited so long for this, agonizing about whether or not it is the right decision for her, agonizing about how the recovery is going to be different this time, since she's so much older and more mobile than she's been in previous surgeries. I'm dreading the time in the hospital primarily because I'm worried about how we'll keep her still enough to get better. She's so wonderfully active now.

The surgery, which is going to be a combination of two different surgeries, a pharyngeal flap and a velopharyngeal sphincteroplasty, is supposed to help her be able to have more productive speech by regulating the flow of air. I've read many accounts of how wonderful this surgery is and what incredible gains children have made after having it. And then I've heard the opposite. It's really hard to know how to choose these things. I mean, darnit, I'm not a doctor, Captain, I'm a writer!

Basically, our approach has been to hit at the problem from every angle available to us: oral motor, regular speech, occupational (feeding) therapy (which we also think has helped her speech), nutritional therapy (fish oil!!!!!), and surgery. I'm sure that at some point we'll have to start picking and choosing, or that we could get to a point of diminishing returns. But we're not there yet, and she's really thriving and her speech improvements pretty much stun everyone every time they see her (not just therapists), even from week to week.

I think that we special needs moms, like other moms, but more so, are kind of like general contractors. We have to kind of know what's going on in a global sense and then find people to execute different parts of the "project" as appropriate to each one's particular expertise. That's one of the problems (and advantages) with medical specialization (which is relatively new). Each doctor has his/her own little special interest, their own little (frequently very narrow) territory, largely to the exclusion of other possibilities. This puts us in a position of having to make decisions that sometimes pit specialists against each other. I just have to hope that it becomes an iron sharpening iron situation and that the one who can make the best, most accessible argument, is the right one.

Who knows what our path would have looked like if VeeGee had been living with us since birth. It's so hard to know those things, and it's almost too painful to think about them. There's a big part of me that looks at other children with the same disability profiles and feels sad. Could I have helped VeeGee be able to breast feed? Did she HAVE to have the trach and feeding tube? I really don't know. My gut actually tells me that both the cleft and the severity of the retracted jaw did, in fact, make those things necessary (though I think I would have certainly worked harder than her birthmom did to facilitate bfing because of the oral motor benefits that I'm sure, at the minimum, it provides).

I guess I say that to say that there are SO MANY ways to go about a treatment plan. And that, even if we make "wrong" decisions, like the ones that we had to pick up after, a kid can still thrive in the end. In most ways, you'd never know that VeeGee was/is as far behind as she was/is (until you lift her shirt and see that danged button). I know it's easy, and hard not to, agonize over every single decision. But I'm having to kind of give myself a break and let instincts do some of the work. Do I trust her surgeon? Yes. I trust him mostly because he's willing to sit down with me and treat me like an intelligent person. I don't know. Is that a good enough reason to go forward with this surgery? I hope it is. I trust it is. That's the best I can do.

Velopharyngeal sphincter reconstruction for VPI/VPD

We had our (I say "our" which is kind of funny, huh?!) nasal endoscopy yesterday (she was such a CHAMP!!!!!!). They found that VeeGee has an enlarged adenoidal pad, which actually works in her favor, strangely, because she is not closing the gap at all. Her soft palate is raising a bit, but the muscles to either side (I can't find the name for them anywhere) are not moving at all. SO, she is not going to be a good candidate for a pharyngeal flap because that would still leave gaps on either side of the flap. The SLP suggested a sphincteroplasty instead. Problem is, that would require removal of her adenoids, which are currently helping her.

I'm not finding much info on it at all. We're supposed to be meeting with the plastic surgeon again on Monday (ANOTHER 3 hour drive to Nashville) and I'm wondering if that's really going to be necessary since he's the flap guy and our other ENT/Otolaryngologist is the sphincteroplasty guy.

I hate the idea of another surgery, but, at the same time I do want to keep pushing ahead with the things that are going to increase her speech abilities. Also, I'm uncertain about our future insofar as jobs/insurance/location go and I'd really like to take care of as many things as I can as soon as is feasible/desirable in case we don't have access to these doctors and this hospital that we love so much in the future.

Okay, that was a total ramble . .

Uphill Battle

Last night wasn't so great. I think she was too tired and over stimulated - we'd been at the funeral home for a visitation for K's uncle and VeeGee was in rare form (head-butting form, to be specific ). The meal when we got home consisted of more persuasion than we'd been having to do, but we pushed on through. It actually got better toward the end, but she was not very happy.

This morning started out rough too, but she rallied and finished her six bites without protest.

It feels like two steps forward three back and so on, but I am still convinced that we're doing the right thing. When I told her OT what we were doing, she was visibly relieved (I think they think she's kind of spoiled at her therapy clinic and this is the replacement OT for the one I fired for putting VeeGee timeout during a session ). She also likes the idea of not letting her wipe her face off with a napkin during the session. I'm back and forth on that one. I know I'd be stressed with apple dripping off my chin!

The OT also suggested ramping up in other sensory areas so that this isn't such a blip on the screen during the day (does that make sense?). We're brushing more, join-compressing more, etc. etc. It feels as if VeeGee is really in a growing spurt, and I hope that all of this will help her cope.

I'm letting her wipe some. But I am waiting until she asks for it - so that it might increase her body-awareness (which is a HUGE issue for her). It's rather pitiful because she wants to wipe with the back of her hand, but then freaks because there's stuff on her hand. I feel for her - I'm pretty freaked by this stuff too.

But that's the thing: it's about letting her integrate these sensory experiences, about helping her process them in a way that will allow her to more productively navigate her world. There are things that, because of my own sensory issues, I simply cannot do, that are WAY TOO STRESSFUL for me because of my inability to handle certain sensations. I really don't want that for her and I hope that I'm able to help her overcome it, to the extent that she can.

Onward

I wanted to mention (at the risk of sounding defensive), that this isn't sudden. We've been working toward this for a long long time now. Also, she used to eat a tiny bit. We discontinued that once she came to us, under doctors' advice, because of the severity of both her aspiration and GERD, which caused her to throw up every single time.

We just believe, along with her therapists, ENT, GI, and Ped, that she is ready cognitively as well as anatomically, to ramp it up a bit. I most definitely will not force anything - but in this short time she has gone from shaking an crying to just opening her mouth and swallowing. It's pretty amazing, and I have to keep reminding myself that it has been appropriate to NOT do this before now. I actually am feeling more guilty about not pushing her previously than I am about pushing her now.

She has always mimicked eating, tried to feed us, wanted to sit at the table. We just haven't made any issue of her food avoidance. It's not that I think I was wrong to have been "easy" on her, I can't help but wonder if, as soon as we got the go ahead (which was months ago), we'd be so much further along.

So, it's kind of funny (though I totally understand where y'all are coming from!!!!!) that this has kind of come off as if I'm pushing too hard - because my greatest concern was that I hadn't pushed hard enough.

ICkeyU

First night in ICU went relatively smoothly. VeeGee is truly a redhead, and that fact is FREQUENTLY noted by all who try to touch her! She's not a big fan of, well, pretty much any of the things attached to her. The one that seems to freak her out the most is kind of interesting

to me. The pulse-ox monitor is attached to her finger with a little band-aid looking thing and it has a little red light that puts me in mind of E.T. Well, she really, really hates it. Always has. I feel for her, I want to convince her how really cool it actually looks. We've gotten a good look at her mouth now. It's pretty interesting looking. I'm glad that the doctor warned me. It looks like there's a second tongue in there! The palate that he create has not completely adhered yet - that'll take a few days - so it really looks like a tongue up there. There's a fair amount of bleeding and her face/eyes/lips/tongue are all pretty swollen. Still, she's as pretty as a picture. We're hoping to be in a regular room by this evening. As always, thanks for your sweet notes, and your prayers.

She's Out!

Well, well, prayers, good wishes, and ordering food (true to restaurant worker tradition) seemed to work wonders y'all! The surgery only took an hour and a half!!! And it was a HUGE success!!!!

!!!!!!!!!!!! K had gone to get something to eat at what we thought was the (safe) halfway point, and they called our names - I couldn't believe it. The doctor was so, so pleased. There was enough tissue there to create an entirely new palate (soft and hard) and they did not have to do a pharyngeal flap. Yahoooooooo. He said it will look like she has two tongues for a few days (ick!), but that will heal fairly quickly. She'll be in recovery for about another hour before we can go see her, and then she'll spend the night in ICU. The doctor said that she'd then stay in a regular room for five to seven days (I'm hoping for less, though, because of her feeding tube which will help to prevent dehydration - cross your fingers!). I'll sign off for now.

Big Day

Today was an amazing day for our family. Early this morning, we went to court to finalize the adoption of our daughter, VeeGee. We are so proud to have her in our lives and look forward to all that is to come. We do feel sorrow at the loss that this means to VeeGee's birth mother, but our prayer is that she will heal and be able a rewarding position in VeeGee's life. We also buried my uncle today. We literally drove from court to the funeral and walked straight in to the family procession.

This, too, was a bittersweet experience. My Uncle B had suffered for a while with an unknown illness, had been treated dismissively by doctors because of his (admitted) obesity. He was in intensive care for fifteen days - an incredibly exhausting and emotional experience for my family, who are all very close. In the end, as he was unconscious and on a ventilator, the doctors in ICU were able to drain off over 150 pounds of fluid from his body - fluid that was not fat. He'd been telling people for a long time that it wasn't just fat, and we were so hopeful that he would wake up and be able to give those doctors a tellin' to. But that was not to be.

We're off tomorrow to Nashville for another surgery for VeeGee. This surgery is to repair the cleft palate which is caused by her disorder, Pierre Robin Syndrome, and is the sixth surgery for her since September. We'll be in ICU for a couple of days and then in a regular room for 4 to 7 days. In our case, for once, VeeGee's feeding tube is a plus. Because we won't be waiting for her to be able to eat post-surgery, we may not have to stay as long as we might otherwise. Silver Lining! Thanks so much to everyone who has supported us in this very interesting endeavor!

Update

I's been a while since the last post, so I thought I'd give y'all some updates. VeeGee has just blossomed since the trach removal in February. Her language has exploded and she's saying full sentences (mostly only and I can understand her, but that's okay). She's LOVING playing with the dogs - this seems to be a relatively new passion for her. She's also having a GREAT time with her good friends L and J.

She's finally moved into her own room. The separation was really hard for me, but she seems to be all "here's your hat, what's your hurry?" about it. It's nice having a grownup room again after a year, but I'm still missing waking up to watch her breathe in the middle of the night.

Next week we're headed back to Nashville to consult with a new craniofacial specialist, who will be taking over her care relative to her cleft palate fissures. The repairs are going to take time, but we feel like the doctors at Vanderbilt are both more proactive about her treatment and much more team-oriented than what we've been experiencing here in Memphis. We're also going to be seeing a pulmonologist, a GI doctor, and an allergist. She's been dealing with a rattly chest for quite a while, despite twice a day inhaled steroid treatment; as well as some developmental issues with her digestion that we are thinking might be relative to food allergies. We'll see.

She is still 100% tube fed, though, with her feeding therapy group, she's 'entertaining' the idea of touching some foods with her fingers. Occasionally, something makes it all the way to her mouth, but we've yet to see any intentional swallowing action. She will drink water though, lots of it! I think that's about all for now. We hope you all are well and that this update finds you as happy about the sunshine and spring weather that we are!

Trach's Out!!!!!!!!!!!
Dr. G. removed it at 8:30 this morning. And she's doing really great.

It's Actually Happening!

I'm starting to get excited now! VeeGee for almost three hours and her sats never dropped below 96%!!!!!! This is really, really great news. She's just singing and dancing - what a super champ! If only we had a drumset in the hospital room, everything would be perfect.

Here We Go

Well, we eventually got a room on a regular floor late last night (sigh of relief!) and we had a "regular" night's sleep in preparation for today. They blocked off her trach at 11:30 (3 hours ago) and her sat levels have been in the upper 90s. She's beginning to fall asleep right now, so now the real test begins, as, apparently it's during sleep that it's the most critical and most likely to not do okay. Just in last few minutes the sats have gone down a bit, but not too alarming.

News!

Lots of news from our family!

We are so happy to let y'all know that A is becoming VeeGee. The adoption process is moving along, and we're hoping to have it finalized within the next couple of months. Our hope is that VeeGee's birth mother will continue to be a part of VeeGee's life, and that, though this will be a difficult transition, peace will, nevertheless, abound.

And in other news, VeeGee began her several day process of decannulation today at Vanderbilt, which means, they're starting to wean her off of her tracheostomy tube. This first day (today) was a bronchoscopy, during which her otolaryngologist looked down her airway to assess for viability. Tomorrow he will insert a modified tracheostomy tube which will force her to breathe through her mouth. They will monitor her for twenty-four hours, watching for signs of desaturation and labored breath. If she is able to breathe normally, the doctor will simply remove the trach and apply a dressing. They'll observe her one more night and then we'll come home. The hole should heal within a month, but if it doesn't, she'll have to have surgery to close it.

During the bronchoscopy, though, Dr. G didn't like the condition of her airway, saying that it was pretty narrow (made him "unhappy"), and that there had been some collapse of the airway above the tracheostomy tube, known as "suprastomal tracheomalacia." This may cause her to be unable to be decannulated without another surgery called Laryngotracheal Reconstruction. In this type of surgery, the narrow areas of the glottis or subglottis are opened up, and carefully shaped pieces of the VeeGee's rib cartilage are placed to widen the narrow areas. The recovery from this procedure is fairly lengthy.

Dr. G said that he had seen a few patients with airway's as small as VeeGee's who had done well enough to avoid further surgery, but he wasn't overly confident that she would be able to do so. There are also complicating factors, he thinks, with her lungs, which we already knew to not be in the best condition. So, there may need to be a pulmonologist pulled in to the team.

She's just woken up from the anesthesia and is very active, so I'll sign off. We're not getting a room tonight because the hospital is full, unfortunately. Pray that we can get one tomorrow morning! Thanks, as always, for your love, encouragement and support.

A New Life

So, home for a couple of days and A's still recovering well. We have hit one little bump in that she's having trouble with retching when her stomach gets overfilled.

Basically, we're having to relearn how to feed her. So, wish us luck with that. I'm concerned that her stomach is still not processing as well as it should (only one bm since we've been home, and just not able to push all of the formula that is required). However, I have faith that this will get better. I'm a member of a mothers' message board for special needs kiddos and the feedback that I've gotten is that the retching might not ever get better. I'm trying to be okay with that, and, I guess, the retching is actually better than full-on vomiting. We're still waiting to hear from the otolaryngologist about scheduling decanulation (trach removal). Hopefully that will be very soon, though we don't want to push it too hard. Thanks, again, for all of your prayers, good wishes, and friendship. It is really meaningful to have so many wonderful people offering support. We truly appreciate it!

No Food Yet

We have not been able to start the bolus feedings yet, as there is still fluid in her tummy (from last night, I guess). The docs now just have her on a drainage tube to see how much is coming out. This complication is going to extend our stay a bit.

Nissen News

A's surgery lasted over four hours. The otolaryngologist also scoped her airway to see if it is viable - which, wonderful news, he say it is! That means that the trach can come out as soon as we finish healing from this surgery (a nissen fundoplication). The recovery is going to be longer than we thought because they had to do it "open" instead of laproscopically, which means she has a three to four inch incision running vertically between her bellybutton and her nipples. Still, trach removal is within sight!

Since the surgery, A's had a bit of a hard time. Her stomach has been unable to empty. We've done two rounds of pedialyte infusions, which were still in her stomach after eight hours - causing her a fair amount of discomfort. We drained the stomach twice (that's fun!), and have just left her empty since midnight last night.

This morning the doctors (not the primary surgeon, though) decided that we would try bolus feeds of pedialyte to see if she can process smaller amounts. The anesthesiologist said that if she can do that, then she will try to take the epidural out tomorrow afternoon.

Our big concerns, obviously, are, first, that she's not tolerating the feeds. Next steps for that, if the bolus doesn't work, are x-rays and ultrasounds, and, ultimately, surgery. We're hopeful that it won't go that far. Second, she is showing some signs of respiratory infection - we're waiting on cultures for that. This is typical for her, as you know. And, finally, the epidural site is showing a tad of redness, which, if it increases, would mean pulling that out and going to IV pain meds - which make her groggier.

She's really a fighter and is cheerful between the sticks and pokes that are routine in the hospital. She pulled her IV out a bit ago while fending off the white-coated-meanies, so I'm anxously awaiting the arrival of the picu team to re-insert. Yuck.

Structured VS. Child-Led

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So, for the third time in two weeks one of dd's therapists gave as "homework" 10 minutes of structured time about 8 times a day.

Somehow I'm supposed to add one more hour of "structure" to the day of a child who already spends 5 hours hooked to a feeding pump, at least 2 hours in therapy, and approximately 2 hours buckled in a car seat heading to therapy . . . . OH, and then, because she's two she's gotta take a nap. And how about family time in the backyard playing with the doggies and daddy?

Please tell me how this is supposed to work.

What the therapist is ten minutes on a start-to-finish project like stacking and playing with blocks, then cleaning up. Or matching colors on a peg-board or putting the appropriate face parts on a Mr. Potato Head. I don't know if I have the attention span for that!!!

Problem is, A is so, so independent. I like that about her, but I do see (as I'm peering through the therapy and school windows) that she's more easily distracted than other little ones her age. She doesn't like to finish stuff - a whole book is too much most of the time.

Best I can do, right now, at least, is read to her while she in the bath (after the screaming bathing part). I can *almost* "command" her attention then.

Typical?

A. has Pierre Robin and, therefore has an atypical cleft palate (is there actually such thing as a typical c.p.?). Anyhow, yesterday we went to see her craniofacial surgeon to discuss her upcoming jaw distraction in September. We also asked about the time-line for getting her palate repaired and were told that the tissue on her palate is in bad condition due to poor previous attempts to repair. He said that the only option at this point (beyond an obturator) is to sew her tongue to the roof of her mouth for (I think) 3 months and then slice off the part that has adhered to the palate to create a new palate.

Has anyone had this done, or even heard of it?????? Doc says it's pretty awful. And when a doc says it's bad, I worry. Would it be better to just leave the obturator in forever??? Anyone have experience with obturators?? With jaw distraction??

We're Pregnant, Sort Of!

Hi Friends,

K and I want to introduce you to A.M., who is, hopefully, about to become a member of our immediate family. She is our niece and has some medical issues that have made it difficult for K's sister to care for her adequately. We have already begun the process, but still have to undergo a home study by the Department of Children's Services. A is in foster care in Knoxville at this time, so we really hope that the home study can be done speedily.

Say a prayer for us as this is really going to be a life-changing experience. A has Pierre Robin Syndrome, which has caused her to have to have a feeding tube and a trach.

We are feeling overwhelmed, as you might imagine. But, more than that, we are feeling very blessed to have this opportunity to share our blessings with this sweet little girl.

Can't wait for you to meet her in person!