11.28.2010
Flat Daddies (and Mamas)
We needed something like this for Dan's sister's wedding while he was deployed last time. I'm glad someone is making them. Check out the website--you can order one for your own family, give one to someone you know, or donate one to a stranger's family.
11.13.2010
It's Time for Me to Retire
Alternately Titled: Clearly I'm Not Needed Here Anymore
Because of Elijah's challenging beginning, Dan and I have made the decision to let him start slowly in school. He's a curious fellow and we want him to learn--but we don't want to push him and have him get frustrated with school right out of the gate. We'd like learning to be a life-long and enjoyable process for him. So we're on our second year of the same pre-school program. We did half of it last year, a few days a week. And we're planning to finish it in the same leisurely manner this week. We do a little bit of work with a crayon in a workbook (simple mazes, circling things that rhyme, coloring the ones that belong, and so on) and we look at pictures of alphabet letters and talk about them. But we're nowhere near being ready to work on reading and writing yet.
At least, I thought we weren't.
Because of Elijah's challenging beginning, Dan and I have made the decision to let him start slowly in school. He's a curious fellow and we want him to learn--but we don't want to push him and have him get frustrated with school right out of the gate. We'd like learning to be a life-long and enjoyable process for him. So we're on our second year of the same pre-school program. We did half of it last year, a few days a week. And we're planning to finish it in the same leisurely manner this week. We do a little bit of work with a crayon in a workbook (simple mazes, circling things that rhyme, coloring the ones that belong, and so on) and we look at pictures of alphabet letters and talk about them. But we're nowhere near being ready to work on reading and writing yet.
At least, I thought we weren't.
Clearly ELi(backwards)JAH has a different opinion.
He was working quietly on a project in the living room (which turned out to be a letter for a friend) and when he came in to show it to me part way through, he said that he had written his name and now he wanted to know how to write his friend's name.
I glanced at it, prepared to be pleased by the scribbles that were meant to be his name. But he was right. He actually wrote his name.
Clearly I can stop worrying about teaching him, and just spend my time from now on watching soap operas and eating bon-bons.
11.12.2010
Lily Burana, "The Quiet Side of Being a Soldier's Other Half" (Thanks to Tucker for passing it along.)
Book
The book is available for pre-sale, and I have officially met my deadline. In the odd world that publishing seems to be, I still need to go through a final set of proofs in the next week or so. But to all intents and purposes, I'm done.
You may now throw confetti.
You may now throw confetti.
11.08.2010
11.03.2010
11.01.2010
The Big S
In August of 2009, I posted about Elijah's cleft-team evaluation, and mentioned that they had indicated a possible need for a scope (nasoendoscopic evaluation*) around the time he turned five. Since before he turned three, we've noticed hypernasality and audible nasal air emission when he speaks, both of which are indicators that his soft palate (which is what was essentially missing at birth and has since been reconstructed) is not closing all the way against his adenoids like it should. After his cleft-team visit earlier this fall, the team recommended going ahead with the scope.
I've been dreading trying to scope him since forever--not every moment or anything, but when I thought about it. Elijah's reaction to doctors near his face with tools in their hand has historically been sheer terror, with silent crying, gagging (he can't vomit or even burp because of his fundoplication, or he would) and the works. Even though his last two visits have been really good in that department, they've also been pretty non-invasive: just a quick look with a tongue depressor and that's it. So the idea of first spraying stuff into his nose, and then putting the camera well up into his nose, and then expecting him to have it together enough to talk? And since I was really concerned about it being a traumatic experience, I was also concerned about what effect that trauma might have on our very hard-won progress with oral feeding.
But we took him in to see the machine ahead of time and let him talk to a couple of people (including one of his grandmothers!) who have been scoped and play with the ridiculously expensive camera. We talked about what would happen, how it would feel, and why we needed to do it. One of his biggest obstacles was the sentences he had to say while the tube was in his nose: "Pet the pretty puppy," "five friendly fish," "buy baby a bib," and so on. He's embarrassed to have to say such ridiculous things with a bunch of strangers looking at him. So we explained that the sentences were silly because they needed to hear the repetitive sounds, and that even grownups had to say silly things like that, and that no one thought he was silly if he said them. It also made a big difference to our science-nut to explain that if he could sit still enough for them to get good pictures, he would get to see a movie of the inside of his body.
Anyway, today was the big day, and it went really well. The nasal spray tasted awful, but he endured. He started to panic and fight as they were putting the camera in his nose, but he listened to me when I told him they were almost done moving it. Once it was done moving, it didn't bother him as much and settled down and said his silly sentences like a champ. The surgeon and the speech pathologist were able to get a good look at what's going on.
So the upshot is that when Elijah is talking softly his soft palate is not closing against the back of his throat. When he is talking more normally and enunciating clearly, his soft palate closes almost completely but there is a "persistent small leak." At this point they don't feel that more speech therapy would be helpful, so the surgeon is recommending a sphincter pharyngoplasty to stop the leak. Rather than doing anything to the palate itself, this procedure takes from the sides of the throat to make the area that the palate goes up to meet a little longer, so that the soft palate doesn't have to get up as high to close.
There are two huge positives for this procedure (over the pharyngeal flap, which was mentioned as a fix at one point). First, because the affected area is so high up in the throat, he could start on liquids and soft foods almost right away and normal food in about a week and a half without compromising the repair. The less time off from eating he has, the better, I'm guessing. Second, the pharyngoplasty has a much lower incidence of causing sleep apnea and obstruction, which is always something I'm aware of with Elijah because of his history.
Downside number one is, of course, anesthesia. This would be his seventh round of general anesthesia. There are also the risks of an inadequate repair (which our surgeon has never had happen) and over-repair, causing hyponasality, or always sounding like he has a cold (which has happened to our surgeon once, and he was able to repair it with a second procedure). And of course, there is always the risk that making Elijah's mouth and throat hurt again is going to make him stop eating.
I am thankful that the scope went well this morning. I am ridiculously proud of Elijah for his self-control today. I am praying for wisdom as we approach decision making again. And now I need to go read the brand-new Richard Scarry book that Elijah picked out on the way home to celebrate his bravery at the doctor's office!
*Here's a video of a self-conducted nasoendoscopy, narrated by the doctor who is both giving and receiving the exam.
I've been dreading trying to scope him since forever--not every moment or anything, but when I thought about it. Elijah's reaction to doctors near his face with tools in their hand has historically been sheer terror, with silent crying, gagging (he can't vomit or even burp because of his fundoplication, or he would) and the works. Even though his last two visits have been really good in that department, they've also been pretty non-invasive: just a quick look with a tongue depressor and that's it. So the idea of first spraying stuff into his nose, and then putting the camera well up into his nose, and then expecting him to have it together enough to talk? And since I was really concerned about it being a traumatic experience, I was also concerned about what effect that trauma might have on our very hard-won progress with oral feeding.
But we took him in to see the machine ahead of time and let him talk to a couple of people (including one of his grandmothers!) who have been scoped and play with the ridiculously expensive camera. We talked about what would happen, how it would feel, and why we needed to do it. One of his biggest obstacles was the sentences he had to say while the tube was in his nose: "Pet the pretty puppy," "five friendly fish," "buy baby a bib," and so on. He's embarrassed to have to say such ridiculous things with a bunch of strangers looking at him. So we explained that the sentences were silly because they needed to hear the repetitive sounds, and that even grownups had to say silly things like that, and that no one thought he was silly if he said them. It also made a big difference to our science-nut to explain that if he could sit still enough for them to get good pictures, he would get to see a movie of the inside of his body.
Anyway, today was the big day, and it went really well. The nasal spray tasted awful, but he endured. He started to panic and fight as they were putting the camera in his nose, but he listened to me when I told him they were almost done moving it. Once it was done moving, it didn't bother him as much and settled down and said his silly sentences like a champ. The surgeon and the speech pathologist were able to get a good look at what's going on.
So the upshot is that when Elijah is talking softly his soft palate is not closing against the back of his throat. When he is talking more normally and enunciating clearly, his soft palate closes almost completely but there is a "persistent small leak." At this point they don't feel that more speech therapy would be helpful, so the surgeon is recommending a sphincter pharyngoplasty to stop the leak. Rather than doing anything to the palate itself, this procedure takes from the sides of the throat to make the area that the palate goes up to meet a little longer, so that the soft palate doesn't have to get up as high to close.
There are two huge positives for this procedure (over the pharyngeal flap, which was mentioned as a fix at one point). First, because the affected area is so high up in the throat, he could start on liquids and soft foods almost right away and normal food in about a week and a half without compromising the repair. The less time off from eating he has, the better, I'm guessing. Second, the pharyngoplasty has a much lower incidence of causing sleep apnea and obstruction, which is always something I'm aware of with Elijah because of his history.
Downside number one is, of course, anesthesia. This would be his seventh round of general anesthesia. There are also the risks of an inadequate repair (which our surgeon has never had happen) and over-repair, causing hyponasality, or always sounding like he has a cold (which has happened to our surgeon once, and he was able to repair it with a second procedure). And of course, there is always the risk that making Elijah's mouth and throat hurt again is going to make him stop eating.
I am thankful that the scope went well this morning. I am ridiculously proud of Elijah for his self-control today. I am praying for wisdom as we approach decision making again. And now I need to go read the brand-new Richard Scarry book that Elijah picked out on the way home to celebrate his bravery at the doctor's office!
*Here's a video of a self-conducted nasoendoscopy, narrated by the doctor who is both giving and receiving the exam.
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