myschyf: (Default)
Oh my ghods, is that progress I see? When we got back from the playground and IHOP, Sam said "Days when I don't argue and fight are better". We nodded and said "Yes, they are". I was thinking "YEAH! This is what I've been saying for *years*!". Let us hope it has actually sunk in. :)

~~~

We're having a mini-vacation starting tonight. Our landlord is coming to replace the tiles on the kitchen ceiling (there was a leak last year...that was fixed and the drywall (I think?) was put up, but he didn't have time just then for the tiles. I kind of like the green ceiling, but I'm weird. *grin*) so we were going to stay at a hotel for a couple days, 'cause it'll be loud. We decided to stay at the one my parents use when they visit, 'cause it has a very nice pool.

We haven't been on a "non crisis of some sort" time in a hotel in *years*. I think it was when we took Sam to Sesame Place...that was 2004 if I'm not mistaken. So, we decided to stay for the entire weekend, checking out Monday morning (I do love the flexibility working from home gives Jeff) instead of sometime Saturday night. We are going to relax and have fun...it feels like there should be a silent "Dammit!" at the end of that. It's probably just me. *grin*

Also, the first anniversary of the removal of Charlie's G-tube was Tuesday...if the promise family together time (with pool) isn't enough, I think that should tip the needle. ;)
myschyf: (Default)
Oh my ghods, is that progress I see? When we got back from the playground and IHOP, Sam said "Days when I don't argue and fight are better". We nodded and said "Yes, they are". I was thinking "YEAH! This is what I've been saying for *years*!". Let us hope it has actually sunk in. :)

~~~

We're having a mini-vacation starting tonight. Our landlord is coming to replace the tiles on the kitchen ceiling (there was a leak last year...that was fixed and the drywall (I think?) was put up, but he didn't have time just then for the tiles. I kind of like the green ceiling, but I'm weird. *grin*) so we were going to stay at a hotel for a couple days, 'cause it'll be loud. We decided to stay at the one my parents use when they visit, 'cause it has a very nice pool.

We haven't been on a "non crisis of some sort" time in a hotel in *years*. I think it was when we took Sam to Sesame Place...that was 2004 if I'm not mistaken. So, we decided to stay for the entire weekend, checking out Monday morning (I do love the flexibility working from home gives Jeff) instead of sometime Saturday night. We are going to relax and have fun...it feels like there should be a silent "Dammit!" at the end of that. It's probably just me. *grin*

Also, the first anniversary of the removal of Charlie's G-tube was Tuesday...if the promise family together time (with pool) isn't enough, I think that should tip the needle. ;)
myschyf: (Charlie)
Charlie is a year old today. She is my favorite early Yule gift and still the embodiment of Baby Delight.

She can clap now, and has added both Mama and banana to her vocabulary in the past few weeks.

Her store of words is still small, but she communicates *so* well. She puts things together so quickly. A while ago, she began waving for hello, goodbye and goodnight. She was sitting on my lap and leaned toward Jeff. I asked if she wanted to go to him. She waved at me and turned her whole body toward him.

She also shakes her head for no, and nods *emphatically* for yes. She got the concept of yes right away...we're still working on no, but she's pretty good at it. I know, teach the baby to say no and the baby will say no to you. Good. :) I want to know what she wants and doesn't. She'll still need to do some things she doesn't necessarily want, like have a diaper change or have her face wiped, but I try to give her as much control as possible.

She's been taking half-steps here and there. She's having a great time cruising (walking while holding onto the edges of things) and can almost stand up from a squatting position without holding onto anything.

She was the piece we didn't know we were missing. When I was still pregnant and she was moving and both Jeff and Sam could see her, there was an almost audible "Oh. It's you. I was wondering when you'd get here"...that's the only way I can explain it.

She and Sam have the strongest sibling bond I've ever seen. I was worried, because of the kid bans in the NICUs and the gap of two months in their relationship, but it was never a huge deal between them. Charlie things Sammy hung the moon, and Sammy things Charlie is the niftiest person she knows. I don't have words for how happy this makes me.

She absolutely adores us all. When Jeff comes home from work, she fairly flies into his arms, after squealing with joy.

Her birthday pictures are happening on Saturday...this is one of the phone-pictures I took while trying to decide which of the two looked best. We're going with this one, but taking the black dress with us, just in case something horrible happens.

There are days when I look at my big baby and can't believe we got here. This has been the hardest year of my life, but there's no doubt that it has all been worth it.
myschyf: (Charlie 6mo)
German artist Simon Schubert folds pieces of paper into beautiful pictures of, uh, stairwells. Each piece takes about a week's worth of work and can sell for up to $6,000.

Amazing stuff.

~~~

We were at Big Lots last week, and found a small cache of stuffed animals made by Carters for little kids. I offered a few to Charlie and she took to the bear immediately. We've named the bear Squish, 'cause when she comes in contact with the bear, she'll usually squeal, squish said bear to her and proceed to chew on it. We're thinking of getting a backup Squish, just in case.

~~~

Restless lately. Not quite mentally pacing, but getting close. Probably because I have a bunch of stuff I want to do and can't for various reasons, the biggest being my cold. The cold seems to be going away, so I have hope.

~~~

Oh, let me say, here and now, that the new Electric Company is *terrible*! It's like...a peanut butter and anchovy sandwich.

Why do they say they're going to revive something and then do something utterly different, keeping only the name? If you can come up with a new concept and script, you can come up with a new name.

~~~

W00t! The Chickenfoot album is being released on the fifth of June rather than the ninth. The site plays music/video at one, but it is easily turnoffable.

Chickenfoot is Sammy Hagar, Michael Anthony, Joe Satriani and Chad Smith. I'm *really* looking forward to this.

~~~

I do so love Rob Thomas.

The support of legalizing gay marriage is in no way meant to change the ideals of the section of Christians who believe that homosexuality is a sin. But we should refuse to let other people's ideals shape the way we live our lives. Each of us has a short ride on this earth and as long as we stay in our lane, and don't affect someone else's ride, we should be allowed to drive as we see fit.
~~~

Tony awards are on the Seventh of June. Musical geeks, mark your calenders!

~~~

We have calls in to Charlie's surgeon...I'd *really* like him to get back to us *now*, so we can schedule the removal of her port.

She's been taking all her food by mouth for more than a month now, and could not be more ready. I think it's more like six or seven weeks, but I was so busy counting ml. and oz. that I completely lost track of the date. Yay Charlie! I'm so happy that this is something she outgrew.

She's sort-of outgrown the Periform Aperture Stenosis as well. Her nasal canals are never going to be as wide as is average for her age, but as long as she gets the stuff squirted up her nose every morning, she's good. We have to remember to mention her pituitary gland at her medical appts, but so far it hasn't done anything odd.

Oh, and remember me asking about reflux meds? We cautiously took her off those quite a while ago, and she's had no problems at *all*.

To sum up, WOOO-HOOOOOOO!
myschyf: (Default)
German artist Simon Schubert folds pieces of paper into beautiful pictures of, uh, stairwells. Each piece takes about a week's worth of work and can sell for up to $6,000.

Amazing stuff.

~~~

We were at Big Lots last week, and found a small cache of stuffed animals made by Carters for little kids. I offered a few to Charlie and she took to the bear immediately. We've named the bear Squish, 'cause when she comes in contact with the bear, she'll usually squeal, squish said bear to her and proceed to chew on it. We're thinking of getting a backup Squish, just in case.

~~~

Restless lately. Not quite mentally pacing, but getting close. Probably because I have a bunch of stuff I want to do and can't for various reasons, the biggest being my cold. The cold seems to be going away, so I have hope.

~~~

Oh, let me say, here and now, that the new Electric Company is *terrible*! It's like...a peanut butter and anchovy sandwich.

Why do they say they're going to revive something and then do something utterly different, keeping only the name? If you can come up with a new concept and script, you can come up with a new name.

~~~

W00t! The Chickenfoot album is being released on the fifth of June rather than the ninth. The site plays music/video at one, but it is easily turnoffable.

Chickenfoot is Sammy Hagar, Michael Anthony, Joe Satriani and Chad Smith. I'm *really* looking forward to this.

~~~

I do so love Rob Thomas.

The support of legalizing gay marriage is in no way meant to change the ideals of the section of Christians who believe that homosexuality is a sin. But we should refuse to let other people's ideals shape the way we live our lives. Each of us has a short ride on this earth and as long as we stay in our lane, and don't affect someone else's ride, we should be allowed to drive as we see fit.
~~~

Tony awards are on the Seventh of June. Musical geeks, mark your calenders!

~~~

We have calls in to Charlie's surgeon...I'd *really* like him to get back to us *now*, so we can schedule the removal of her port.

She's been taking all her food by mouth for more than a month now, and could not be more ready. I think it's more like six or seven weeks, but I was so busy counting ml. and oz. that I completely lost track of the date. Yay Charlie! I'm so happy that this is something she outgrew.

She's sort-of outgrown the Periform Aperture Stenosis as well. Her nasal canals are never going to be as wide as is average for her age, but as long as she gets the stuff squirted up her nose every morning, she's good. We have to remember to mention her pituitary gland at her medical appts, but so far it hasn't done anything odd.

Oh, and remember me asking about reflux meds? We cautiously took her off those quite a while ago, and she's had no problems at *all*.

To sum up, WOOO-HOOOOOOO!
myschyf: (Charlie and Sammy)
Charlie is now a third of a year old. It sounds kind of extreme when I put it that way. *grin*

She's using her hands more now. She's getting quite good at reaching and grasping, and has even started to try putting the pacifier back in her mouth from time to time. I'd almost forgotten how much fun it is to watch a baby evolve.

~~~

The Beatles discography is being re-re-rereleased. I'm just not sure how many times we can be expected to rebuy these things. I mean, I love the Beatles...they were part of the soundtrack when I was growing up and it's just a lot of very good music. But there's a limit to just how good something can sound (even with an amazing sound system) and there's so much out there that I don't have yet. Though, I'm kinda happy for the person who just discovered sie loves them and is buying their stuff for the first time.

~~~

Ooh, here's something I missed. D.C. City Council votes to recognize same-sex marriages performed in other states. A big Yay for DC. :)

Progress. Isn't it marvelous?

~~~

The girls did beautifully at the photo studio. I can't wait to see the finished products.

If you've been thinking of having official pictures taken, Target's running a deal. 50% off on all packages...I'd brought a coupon, but the woman said it wasn't really necessary, 'cause they'd been told to offer it to everyone.

~~~

I know I had more I wanted to say...but those thoughts seem to be gone now. Charlie's no longer happy playing on her mat, so I'll post this and get on with the day.

Sooooo, how are you? :)
myschyf: (Charlie and Sammy)
Via [livejournal.com profile] bkwrrm_tx, Project Runway is finally coming back!

~~~

Last week, Jeff and I caught a PBS program that was nothing but Gershwin. If you get a chance, watch this. Rhapsody in Blue is the last piece, and it is remarkable to witness.

Also, if you're a Tom Petty fan and can catch his episode of Soundstage, I highly recommend it.

~~~

Hey look! Mrs. PiggleWiggle's house!

~~~

I don't like most April Fools' stuff, but I am fond of the goofy fake news stories. Not all of them, of course. The clever ones that took more than a moment's thought.

This is my current favorite:

Shocking Split Rocks Comics World: Alan Moore Abandoned by His Beard

It's more than just the headline...the article is great.

~~~

Damn but time passes quickly. I'm writing on Wednesday and all of a sudden, it's Friday.

Also? It was a month today that we brought the baby home. She'll be four months old next Friday.

Sometimes, quickly becomes warp speed.

~~~

Charlie gained enough weight and is thus no longer a patient of the home-visiting nurses (I can't remember the name of the place, only the name of the place that rents us her feeding pump). Yay!

~~~

I was nine when I started puberty (that's when the boobs started growing in, and probably the hips. The period gave me a break for a couple more years), so I wanted to get Sammy a good book to give her a solid foundation. Luckily, the boob fairy hasn't come to our house recently (if I'd ever had a chance to want boobs, I might not dislike mine the majority of the time), but better informed than weirded out.

We've talked about puberty and sex and periods and so on for ages, but it's always good to have a book to page through. And it may give her the language to ask some questions she wasn't sure how to form.

I remember taking out loads of puberty books from the library, both girl and boy versions, 'cause I wanted to know what was happening to them, too.

The one I found to start her off is It's Perfectly Normal which is perfectly marvelous. It's accessible without talking down, there are people of all shapes, sizes, colors, ages and ableness throughout the book and I think it's going to spark some interesting conversations. But even if it doesn't, she has the info now, and can either ask me to find her more or go looking on her own.

There were a few books I was thinking of getting, and the final reason I picked this one was the reviews on Amazon. The good reviews were wonderful.

The bad reviews? Were kinda scary. I have a feeling some people were sent there to make them, as a few of them mention the same things, such as "one of the only sections without cartoons is the one on abortion" and "the book was given away by Planned Parenthood (the largest abortion provider)". They also equated knowing about something to doing it, but that's pretty common.

My favorite thing about the book? Besides the section about sexual abuse ('cause we needed to have that conversation, but I didn't quite know where to start without scaring her to death. She knows that nobody's allowed to touch her without her consent, but this gives me a better jumping-off point) is the fact that they stress, in more than one place, that a person always has the right to say no, even if they're right in the middle of something. That alone is worth the price of the book.

And, in closing, I feel the need to yell "Nudity is not the same as pornography, you twits!".

Thank you.

~~~

I came up with a song for Charlie.

"Leap, leap, leap like a lemur
Leap, leap, up and down
Leap, leap, leap like a lemur
Leap all over the town"

With appropriate jumping where necessary. But, as with all things, I got kind of bored...so there are variations. We currently have "Marm like a marmoset", "Goo like a Charlie", "Photosynthesise like an Oak Tree"(that one's challenging) and "Gaboon like a viper". Yes, snakes still do creep me out, but Gabooooooon is a great word.

Sure, my brain may be turning to mush, but I'm havin' a good time while it happens.

~~~

Gotta go, baby's awake.
myschyf: (Diva of dandelions)
If Charlie gains six ounces between yesterday and next Thursday, she'll be discharged from the home health program. Woot! Then we'd only have her pediatrician and her surgeon, medically speaking. That would be nice.

Also? She's been home three weeks today.

~~~

Dear ghods. Tomorrow, I become the mother of a nine year old. What is up with *that*?!

I'm baking the cake today, and wrapping presents tonight. 'Cause it can't be a birthday if I'm not wrapping stuff till the wee hours of the morning.;) I'm currently putting music on the 4-gig mp3 player we bought her. I looked at a *lot* of them, and I still think this one's a bit small (size-wise, not capacity-wise) but it gets FM, so she can listen to XM Kids (her dad leaves his XM transmitter on during the day, so she can listen to XM Kids on her stereo) and I know she'll get a kick out of that.

This weekend will be hers. I've got a ballet dvd from Netflix, we're hoping to go miniature golfing (indoor course attached to the mall) and if the stars align just right, the theatre in Germantown may still be playing Coraline, so she and I can finally go.

She asked for some barbies about a month ago, and in my search I found Tattoo Fun Barbie (I'm not sure that's the real name, but you get the drift). I bought it and it got here with no problems. A week ago she says "I really hope I get a Tattoo Barbie for my birthday". I suspect her of peeking, but can't actually come right out and say that, so I ask where she heard about it, all nonchalant like. She saw a commercial, and she told me all about the doll and the tattoos and so on. I didn't get the feeling she was lying either. So, two yays, one for getting her a good present and two for no snooping. :)

~~~

I want to thank each and every one of you for the love, support and good thoughts sent during the saga of getting Charlie home.

Could we have done it without you? Well, yeah...not doing it wasn't an option. Would it have sucked even more than it actually did? Oh *hell* yes.

I've said it before, and I'm sure I'll say it again. I'm lucky and blessed in my friends and family.

~~~

I have "Well Respected Man" going through my head, over and over again.
myschyf: (Diva of dandelions)
If Charlie gains six ounces between yesterday and next Thursday, she'll be discharged from the home health program. Woot! Then we'd only have her pediatrician and her surgeon, medically speaking. That would be nice.

Also? She's been home three weeks today.

~~~

Dear ghods. Tomorrow, I become the mother of a nine year old. What is up with *that*?!

I'm baking the cake today, and wrapping presents tonight. 'Cause it can't be a birthday if I'm not wrapping stuff till the wee hours of the morning.;) I'm currently putting music on the 4-gig mp3 player we bought her. I looked at a *lot* of them, and I still think this one's a bit small (size-wise, not capacity-wise) but it gets FM, so she can listen to XM Kids (her dad leaves his XM transmitter on during the day, so she can listen to XM Kids on her stereo) and I know she'll get a kick out of that.

This weekend will be hers. I've got a ballet dvd from Netflix, we're hoping to go miniature golfing (indoor course attached to the mall) and if the stars align just right, the theatre in Germantown may still be playing Coraline, so she and I can finally go.

She asked for some barbies about a month ago, and in my search I found Tattoo Fun Barbie (I'm not sure that's the real name, but you get the drift). I bought it and it got here with no problems. A week ago she says "I really hope I get a Tattoo Barbie for my birthday". I suspect her of peeking, but can't actually come right out and say that, so I ask where she heard about it, all nonchalant like. She saw a commercial, and she told me all about the doll and the tattoos and so on. I didn't get the feeling she was lying either. So, two yays, one for getting her a good present and two for no snooping. :)

~~~

I want to thank each and every one of you for the love, support and good thoughts sent during the saga of getting Charlie home.

Could we have done it without you? Well, yeah...not doing it wasn't an option. Would it have sucked even more than it actually did? Oh *hell* yes.

I've said it before, and I'm sure I'll say it again. I'm lucky and blessed in my friends and family.

~~~

I have "Well Respected Man" going through my head, over and over again.
myschyf: (Default)
I've been retagging all my mp3s (thank goodness for Magic Mp3 Tagger, or I'd have been cryin' by the time I got to the C's) 'cause my mp3 player has a problem with some of them, and it's easier to do them all then try to figure out where the problem is.

I've got several duet-type albums (though, not the one that (I think) started it all, Sinatra's Duets) and it's so interesting to look back and go "Oh right, so&so *was* famous around that time...I wonder if sie's still making music". One can (sort of) tell when it's a flavor of the month album vs. a making music with my friends album. Thing is, most of the time, that doesn't seem to affect the music. IMNEHO, of course.

~~~

Jeff & I caught the epsiode of Elvis Costello's Spectacle where he interviews Bill Clinton. It was so cool to watch him talk about music rather than politics. I'm pretty sure he felt the same way. :)

~~~

Spring is officially here...oh sure, the calendar says it's been here for a while, but it isn't *official* till I've had my first allergy attack. I'm currently giving thanks for Claritin.

~~~

For those of you with kids on reflux meds ([livejournal.com profile] jenny_evergreen, is Finn still on them?), how does one figure out that the kid doesn't need them anymore without taking the kid *off* them and possibly causing pain?
myschyf: (Default)
I've been retagging all my mp3s (thank goodness for Magic Mp3 Tagger, or I'd have been cryin' by the time I got to the C's) 'cause my mp3 player has a problem with some of them, and it's easier to do them all then try to figure out where the problem is.

I've got several duet-type albums (though, not the one that (I think) started it all, Sinatra's Duets) and it's so interesting to look back and go "Oh right, so&so *was* famous around that time...I wonder if sie's still making music". One can (sort of) tell when it's a flavor of the month album vs. a making music with my friends album. Thing is, most of the time, that doesn't seem to affect the music. IMNEHO, of course.

~~~

Jeff & I caught the epsiode of Elvis Costello's Spectacle where he interviews Bill Clinton. It was so cool to watch him talk about music rather than politics. I'm pretty sure he felt the same way. :)

~~~

Spring is officially here...oh sure, the calendar says it's been here for a while, but it isn't *official* till I've had my first allergy attack. I'm currently giving thanks for Claritin.

~~~

For those of you with kids on reflux meds ([livejournal.com profile] jenny_evergreen, is Finn still on them?), how does one figure out that the kid doesn't need them anymore without taking the kid *off* them and possibly causing pain?
myschyf: (Default)
TCM was so much fun last night. They had the Chuck Jones documentary along with a bunch of his cartoons (including The Dot & the Line and The Bear That Wasn't) and The Magic Tollbooth, which was lots of fun to watch with my girls. Charlie wasn't too interested most of the time, but every now and then, something would catch her eye and she'd be mesmerized. So, she's got a good start on the classics. *grin*

~~~

When Sam was a baby, I decided to make a onesie for her that said "Goes to Eleven". Never did get around to that. But, I think I can manage it for Charlie. :)

I have to do stuff as I think of it now, 'cause she's my last baby. And some of my ideas just won't work on a puppy. *grin*
myschyf: (Default)
TCM was so much fun last night. They had the Chuck Jones documentary along with a bunch of his cartoons (including The Dot & the Line and The Bear That Wasn't) and The Magic Tollbooth, which was lots of fun to watch with my girls. Charlie wasn't too interested most of the time, but every now and then, something would catch her eye and she'd be mesmerized. So, she's got a good start on the classics. *grin*

~~~

When Sam was a baby, I decided to make a onesie for her that said "Goes to Eleven". Never did get around to that. But, I think I can manage it for Charlie. :)

I have to do stuff as I think of it now, 'cause she's my last baby. And some of my ideas just won't work on a puppy. *grin*
myschyf: (Default)
The trip went off without a hitch. Charlie's stitches are out and she doesn't have to see the surgeon till June, when she'll have her port replaced. This is a non-surgical procedure that the doc said that, once we saw it done, we could do at home if we're comfortable with that.

Though, she's eating so well that there's a chance that she might not even need it in three months. We can but hope.

She's now twelve pounds, four ounces and twenty four inches long. She's rather hard to measure, and we've gotten so many differing reports on her length that I take them with a grain of salt. But, the nurse (who was really fabulous) laid her down and made a mark above her head, then stretched out her leg and marked where the bottom of her foot was. I picked her up and the nurse measured between the marks. Now why doesn't everyone do it that way? :)
myschyf: (Default)
The trip went off without a hitch. Charlie's stitches are out and she doesn't have to see the surgeon till June, when she'll have her port replaced. This is a non-surgical procedure that the doc said that, once we saw it done, we could do at home if we're comfortable with that.

Though, she's eating so well that there's a chance that she might not even need it in three months. We can but hope.

She's now twelve pounds, four ounces and twenty four inches long. She's rather hard to measure, and we've gotten so many differing reports on her length that I take them with a grain of salt. But, the nurse (who was really fabulous) laid her down and made a mark above her head, then stretched out her leg and marked where the bottom of her foot was. I picked her up and the nurse measured between the marks. Now why doesn't everyone do it that way? :)
myschyf: (Charlie)
From the "Why didn't I think of that" file, the Cupcake Safe Hack

No, not safe cupcakes, a safe way to transport cupcakes.

And now, I'd really like a cupcake, even a dangerous one.

~~~

Charlie weighs more than twelve pounds! Wow. :)

We're going to Charlottesville to get her stitches out and so the surgeon can look at her. The appointment is on Monday, but we're going to go on Sunday and stay at a hotel across the street from the hospital. Jeff's a member of the rewards program (and gets points when he's traveling for business as well as for hospital visits) so we're getting the night free. Of course, you have to stay in their hotels for like, a year to get one night free, but it's like the Pepsi Points program last year. We were gonna buy the soda anyway, so may as well get the mp3s too.

Anyway. I'm mostly calm about the whole thing. Logically, I know they won't keep her. I know she's doing *so* beautifully and that she doesn't need to be hospitalized at all. Now if only I could get the emotional section of my brain on board.
myschyf: (Charlie)
From the "Why didn't I think of that" file, the Cupcake Safe Hack

No, not safe cupcakes, a safe way to transport cupcakes.

And now, I'd really like a cupcake, even a dangerous one.

~~~

Charlie weighs more than twelve pounds! Wow. :)

We're going to Charlottesville to get her stitches out and so the surgeon can look at her. The appointment is on Monday, but we're going to go on Sunday and stay at a hotel across the street from the hospital. Jeff's a member of the rewards program (and gets points when he's traveling for business as well as for hospital visits) so we're getting the night free. Of course, you have to stay in their hotels for like, a year to get one night free, but it's like the Pepsi Points program last year. We were gonna buy the soda anyway, so may as well get the mp3s too.

Anyway. I'm mostly calm about the whole thing. Logically, I know they won't keep her. I know she's doing *so* beautifully and that she doesn't need to be hospitalized at all. Now if only I could get the emotional section of my brain on board.
myschyf: (Little Pookie)
I clipped the baby's nails. *Only* nails got clipped (and filed), and nobody cried. Win!

~~~

I just had an argument, with myself, about how old I am. 'Cause I just couldn't remember the number. I think I need more Ginko. ;)

~~~

This scrabble keyboard is bloody amazing. I think the fact that it lights up is the most impressive bit. First seen in [livejournal.com profile] murnkay's journal, 'cause he's just that cool.

~~~

When I woke up in the hospital, I felt as if my shell, that thing that stood between me and the world, had dissolved. I felt very raw. I kept that feeling while Charlie was hospitalized. And now, I have to figure out how to regrow it. Maybe not so thick, but people need shells and sheilds. So, it seems I've got some work to do.

What else is new? ;)

Oh yeah. One of my doctors was Dr. Jones, and *every* time she'd walk into the room, I'd think "No time for love, Dr. Jones" and would have to stop myself from saying it. Because I'm just that geeky.

~~~

Dear SciFi Channel,

You're changing the spelling to Syfy? Really? You honestly think that this will bring in the viewers? Huh.

See, now if you'd asked me, I'd have told you to keep the name and get rid of those ridiculously shitty movies.

There are a lot of reasons I don't watch you often, and I think this decision illustrates the majority of them.

Not much love at all,

Me

~~~

A month or so ago, I saw this book, What's Wrong, Little Pookie? and fell in love (hence the icon). I bought it for Charlie a couple weeks ago (along with Let's Dance, Little Pookie and That's Not My Dragon). And have started calling her Little Pookie. Which I should probably stop soon...because Pooky Bear was a nickname my Nan and I had for my dog way back in the mid-eighties. No, I'm not sure why...yes it is the name of Garfield's teddy bear.

Okay, I probably *won't* stop calling her Little Pookie from time to time...but I'll make sure to think of it as being spelled with an ie, so that it isn't the same name. *grin*

~~~

Oh, well thank ghods. There's gonna be another useless sequel to The Lost Boys. Because last year's was so...good?

~~~

"Project Runway" finalist Kenley Collins was arrested today after assaulting her fiance with their cat, authorities said today.

Y'know, after watching her on Proj. Runway, I'm just not surprised that she threw a cat at someone. Luckily, cats are quite resilient and I'm sure it's fine.

~~~

I feel really bad about Natasha Richardson dying. I'm not sure why. I mean, I liked her as an actor and I liked her public persona as well as her SO, but her death has no real effect on my life. My heart definitely goes out to her family.

~~~

Interview with Dave McKean

~~~

There will be more pictures very soon. I mainly need to find the time to process them.
myschyf: (Little Pookie)
I clipped the baby's nails. *Only* nails got clipped (and filed), and nobody cried. Win!

~~~

I just had an argument, with myself, about how old I am. 'Cause I just couldn't remember the number. I think I need more Ginko. ;)

~~~

This scrabble keyboard is bloody amazing. I think the fact that it lights up is the most impressive bit. First seen in [livejournal.com profile] murnkay's journal, 'cause he's just that cool.

~~~

When I woke up in the hospital, I felt as if my shell, that thing that stood between me and the world, had dissolved. I felt very raw. I kept that feeling while Charlie was hospitalized. And now, I have to figure out how to regrow it. Maybe not so thick, but people need shells and sheilds. So, it seems I've got some work to do.

What else is new? ;)

Oh yeah. One of my doctors was Dr. Jones, and *every* time she'd walk into the room, I'd think "No time for love, Dr. Jones" and would have to stop myself from saying it. Because I'm just that geeky.

~~~

Dear SciFi Channel,

You're changing the spelling to Syfy? Really? You honestly think that this will bring in the viewers? Huh.

See, now if you'd asked me, I'd have told you to keep the name and get rid of those ridiculously shitty movies.

There are a lot of reasons I don't watch you often, and I think this decision illustrates the majority of them.

Not much love at all,

Me

~~~

A month or so ago, I saw this book, What's Wrong, Little Pookie? and fell in love (hence the icon). I bought it for Charlie a couple weeks ago (along with Let's Dance, Little Pookie and That's Not My Dragon). And have started calling her Little Pookie. Which I should probably stop soon...because Pooky Bear was a nickname my Nan and I had for my dog way back in the mid-eighties. No, I'm not sure why...yes it is the name of Garfield's teddy bear.

Okay, I probably *won't* stop calling her Little Pookie from time to time...but I'll make sure to think of it as being spelled with an ie, so that it isn't the same name. *grin*

~~~

Oh, well thank ghods. There's gonna be another useless sequel to The Lost Boys. Because last year's was so...good?

~~~

"Project Runway" finalist Kenley Collins was arrested today after assaulting her fiance with their cat, authorities said today.

Y'know, after watching her on Proj. Runway, I'm just not surprised that she threw a cat at someone. Luckily, cats are quite resilient and I'm sure it's fine.

~~~

I feel really bad about Natasha Richardson dying. I'm not sure why. I mean, I liked her as an actor and I liked her public persona as well as her SO, but her death has no real effect on my life. My heart definitely goes out to her family.

~~~

Interview with Dave McKean

~~~

There will be more pictures very soon. I mainly need to find the time to process them.
myschyf: (Charlie waving)
Charlie's laying on the floor, on a play mat with dangly things that the people in Jeff's office gave us. And, she just rolled onto her side and back again.
myschyf: (Charlie waving)
Charlie's laying on the floor, on a play mat with dangly things that the people in Jeff's office gave us. And, she just rolled onto her side and back again.
myschyf: (A-okay)
Poor Charlie. She is teething badly and in the middle of a growth spurt. Have teething tablets, but they're not 100% of course.

However, when she's in a good mood, she's in a very good mood, which is lovely.
myschyf: (A-okay)
Poor Charlie. She is teething badly and in the middle of a growth spurt. Have teething tablets, but they're not 100% of course.

However, when she's in a good mood, she's in a very good mood, which is lovely.
myschyf: (Default)
The Boppy? Oh yes, it rocks and is worth every cent.

~~~

I used to be somewhat addicted to Flixter's Never-Ending Movie Quiz. But I got over that.

Now, I'm somewhat addicted to the Never-Ending Book Quiz at GoodReads (I'm Myschyf there).

Oh well.

~~~

Charlie seems to have outgrown her lactose intolerance. Cool. :)

~~~

What she said.

~~~

I'm sitting here, typing, while my baby daughter sleeps in her Moses Basket (with stand) behind me. Hell yes.

Especially since I was wondering if she'd get home before she outgrew the basket.

Yesterday, she turned three months old. It was also exactly a week after her surgery.

She's doing so very well. I kind of expected her to freak out a bit in the first days she was here, because it's so different than what she's used to. But she didn't. She's pretty laid back most of the time. I do think that her being in the pediatric ward rather than the NICU helped immensely. Jeff, Sam and I were able to be there together, and so she got used to us *together*...and used to Sam in the first place, as the last time they'd been together was Christmas day (flu season began in earnest and the NICUs closed to kids under twelve. Because cold germs don't stick to people that age and older ;).

Sammy is so good with her, and does a good job of treating Charlie like a *person* rather than an interesting toy. Yesterday, I was rawther exhausted and Charlie was awake. So, Sam came in and sat on the bed, to hang out with Charlie while I dozed. She read to her and talked to her, and even got her back to sleep. I was highly impressed.

It has been a bit difficult to get into the rhythm of a new baby in the house. If we'd brought her home straight away, there wouldn't be any problems, but the gap between her birth and her homecoming have upset the...natural progression. Oh, it isn't horrible in *any* way, it's just taking a bit of time to find all the steps to this dance. We're getting there. And, I think we're still all amazed that she's finally here, with us.

She's the most vocal infant I've ever been around. Last night, we were repeating "oh" back and forth, and she actually says Goo. I'd always thought that was a myth.

Her doctors aren't worried about apnea any longer. YAY!

She's eating more by mouth now than she ever has, and is very enthusiastic about the whole thing. I dislike feeding her via the tube, but I'm getting very good at it (it really isn't difficult), and we have mountains of faith that she won't have it too terribly long. It isn't really the tube I don't like, it's the constant worry that I'll do something wrong and hurt her while she's connected. We've done very well so far, and I don't see any complications in our future. That's really not going to make this worry go all the way away though. Oh well. At least it's a *real* worry.

~~~

I would love to know why the software that transfers music from my computer to my mp3 player takes at least twice as long to do so than just opening the player *on* my 'puter and copying things that way. It isn't changing the files, just moving them, so it really makes no sense. But, it's a good reason not to use that program any longer.

~~~

The last time I had an infant, my keyboard was the standard kind. I've the split kb now and can attest that it is far easier to type while holding her. I'm not sure why, as the keys are in the same places, and there are the same number of them.
myschyf: (Default)
The Boppy? Oh yes, it rocks and is worth every cent.

~~~

I used to be somewhat addicted to Flixter's Never-Ending Movie Quiz. But I got over that.

Now, I'm somewhat addicted to the Never-Ending Book Quiz at GoodReads (I'm Myschyf there).

Oh well.

~~~

Charlie seems to have outgrown her lactose intolerance. Cool. :)

~~~

What she said.

~~~

I'm sitting here, typing, while my baby daughter sleeps in her Moses Basket (with stand) behind me. Hell yes.

Especially since I was wondering if she'd get home before she outgrew the basket.

Yesterday, she turned three months old. It was also exactly a week after her surgery.

She's doing so very well. I kind of expected her to freak out a bit in the first days she was here, because it's so different than what she's used to. But she didn't. She's pretty laid back most of the time. I do think that her being in the pediatric ward rather than the NICU helped immensely. Jeff, Sam and I were able to be there together, and so she got used to us *together*...and used to Sam in the first place, as the last time they'd been together was Christmas day (flu season began in earnest and the NICUs closed to kids under twelve. Because cold germs don't stick to people that age and older ;).

Sammy is so good with her, and does a good job of treating Charlie like a *person* rather than an interesting toy. Yesterday, I was rawther exhausted and Charlie was awake. So, Sam came in and sat on the bed, to hang out with Charlie while I dozed. She read to her and talked to her, and even got her back to sleep. I was highly impressed.

It has been a bit difficult to get into the rhythm of a new baby in the house. If we'd brought her home straight away, there wouldn't be any problems, but the gap between her birth and her homecoming have upset the...natural progression. Oh, it isn't horrible in *any* way, it's just taking a bit of time to find all the steps to this dance. We're getting there. And, I think we're still all amazed that she's finally here, with us.

She's the most vocal infant I've ever been around. Last night, we were repeating "oh" back and forth, and she actually says Goo. I'd always thought that was a myth.

Her doctors aren't worried about apnea any longer. YAY!

She's eating more by mouth now than she ever has, and is very enthusiastic about the whole thing. I dislike feeding her via the tube, but I'm getting very good at it (it really isn't difficult), and we have mountains of faith that she won't have it too terribly long. It isn't really the tube I don't like, it's the constant worry that I'll do something wrong and hurt her while she's connected. We've done very well so far, and I don't see any complications in our future. That's really not going to make this worry go all the way away though. Oh well. At least it's a *real* worry.

~~~

I would love to know why the software that transfers music from my computer to my mp3 player takes at least twice as long to do so than just opening the player *on* my 'puter and copying things that way. It isn't changing the files, just moving them, so it really makes no sense. But, it's a good reason not to use that program any longer.

~~~

The last time I had an infant, my keyboard was the standard kind. I've the split kb now and can attest that it is far easier to type while holding her. I'm not sure why, as the keys are in the same places, and there are the same number of them.
myschyf: (A-okay)
Best. Day. Ever.
myschyf: (A-okay)
Best. Day. Ever.
myschyf: (A-okay)
Charlie is coming home today!

WOOOOOOOOOOOOOOOOOO-HOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO!
myschyf: (A-okay)
Charlie is coming home today!

WOOOOOOOOOOOOOOOOOO-HOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO!
myschyf: (Looking Up)
Two very important updates.

First, the doctors say that if everything goes as it should, they'll be releasing her to us on Friday.

I asked if this was going to be another transfer or if they were going to give her to us, and they said no transfer. Woo! The baby's finally going to ride in her car seat. *grin*

This is the first time we've ever gotten a date for release. I'm carefully thrilled.

The surgeon came in around noon yesterday and said that the site looked very good and that he was pleased. This bodes well.

And the second thing?

Charlotte is teething! She was fretting yesterday and her pacifier had fallen. Jeff was washing it off and I had stuck my finger in her mouth...one of her bottom front teeth is coming in. This is the same tooth that Sam started on, but Charlie's a couple weeks early. That's my little overachiever. ;)
myschyf: (Looking Up)
Two very important updates.

First, the doctors say that if everything goes as it should, they'll be releasing her to us on Friday.

I asked if this was going to be another transfer or if they were going to give her to us, and they said no transfer. Woo! The baby's finally going to ride in her car seat. *grin*

This is the first time we've ever gotten a date for release. I'm carefully thrilled.

The surgeon came in around noon yesterday and said that the site looked very good and that he was pleased. This bodes well.

And the second thing?

Charlotte is teething! She was fretting yesterday and her pacifier had fallen. Jeff was washing it off and I had stuck my finger in her mouth...one of her bottom front teeth is coming in. This is the same tooth that Sam started on, but Charlie's a couple weeks early. That's my little overachiever. ;)
myschyf: (Charlie's smile)
She's out of surgery and doing well.
myschyf: (Charlie's smile)
She's out of surgery and doing well.
myschyf: (A-okay)
Charlie just went in for surgery.

I like the staff here *so* very much. They're so clear when they talk to us, and so understanding at how frazzled we are. They put our minds at ease, as much as that's possible.

Will update when she's done.
myschyf: (A-okay)
Charlie just went in for surgery.

I like the staff here *so* very much. They're so clear when they talk to us, and so understanding at how frazzled we are. They put our minds at ease, as much as that's possible.

Will update when she's done.
myschyf: (Charlie)
Charlie's surgery is set for seven-thirty am tomorrow.

I'll let y'all know when she's out and fine.
myschyf: (Charlie)
Charlie's surgery is set for seven-thirty am tomorrow.

I'll let y'all know when she's out and fine.
myschyf: (Charlie)
UVA is about a million times better than JHU. The doctors not only stay in contact with us, they are in to see Charlie all the time.

Which is why we found out this morning that they are going to place the G-Tube. She was eating really well when she first got there and there was a possibility that they'd just give her to us. But she's only taken 25% of her food by mouth in the past twenty-four hours, which helped them make up their minds.

The surgery is tentatively scheduled for Tuesday.

I know this is a good thing...I know that we're not rushing into it and that we're not being pushed into it. That this really is what's best for Charlie and what will get her home.

I'm just not dealing well with the reality of the situation at all. All my fears about her being in surgery have returned (they never really left) along with the knowledge that we're going to let people hurt her. That's pretty much what surgery *is*, causing pain now to prevent it later. And we can't even explain it to her.
myschyf: (Charlie)
UVA is about a million times better than JHU. The doctors not only stay in contact with us, they are in to see Charlie all the time.

Which is why we found out this morning that they are going to place the G-Tube. She was eating really well when she first got there and there was a possibility that they'd just give her to us. But she's only taken 25% of her food by mouth in the past twenty-four hours, which helped them make up their minds.

The surgery is tentatively scheduled for Tuesday.

I know this is a good thing...I know that we're not rushing into it and that we're not being pushed into it. That this really is what's best for Charlie and what will get her home.

I'm just not dealing well with the reality of the situation at all. All my fears about her being in surgery have returned (they never really left) along with the knowledge that we're going to let people hurt her. That's pretty much what surgery *is*, causing pain now to prevent it later. And we can't even explain it to her.
myschyf: (Default)
Important stuff that just happened first, then the rest of the post.

Charlie's being transported to UVA as I type. I'm...a lot more emotional than I was last time, probably because surgery is pretty much a given this time. Or maybe I'm just still dealing with everything from last time. No idea, but I finally stopped crying. Hey, I can always go back to it later.

We are packing and putting things together, stopping mail, all that sort of thing. Unless it comes today, we're going to have to ask one of the neighbors to keep an eye out for the dvd player, which is coming via UPS. Well, at least we won't have to worry about losing it...

~~~

I've started to use tags in my journal. Mainly to help anyone who's new to Charlie's saga, but I've been thinking about using them for a while. I don't know if I'll go back and tag everything in my journal. That's a lot of years, especially going through by hand. Of course, the whole enterprise would be simpler if I remembered to tag the *new* entries rather than having to go back and do it...

~~~

I got one of the two pair of fingerless gloves I ordered today, and they're perfect. My hands (especially my right, for some unknown reason) tend to get chilly while I'm using my computer, but besides the fact that typing in gloves is inconvenient at best, I hate having my fingertips covered for any length of time. I don't know why, I just flat out do. So, I got a pair of black and grey striped fingerless gloves to keep by the 'puter (those are the ones that arrived) and a pair of fleece fingerless gloves with a removable mitten cover (there's a button on the back of each glove so that the cover doesn't flop around) for outside. I've been thinking about this for a while, but never remembered to search for them. Till now.:)

~~~

Damn. A Craven County couple are in the Guinness World Records book.

The two did nothing outlandish such as sky-diving upside down, dancing for days, taking the longest lawn mower ride or having the most tattoos.

No, Herbert and Zelmyra Fisher of the Brownsville community have been married for more than 84 years.


Great article. And so much *awwwwww*.

Though, I hope people don't start holding them up and going "See? They've been married for eighty-four years, you should totally stay in your sucky marriage". 'Cause, from what I can tell, the reason they've stayed together so long is 'cause they *don't* have a sucky marriage.

~~~

Oh look, a meme.

Grab the book nearest you (the NEAREST, not your favorite book, the coolest, or the most intellectual).
Turn to page 56.
Find the fifth full sentence.
Post that sentence along with these instructions in your LJ:

Figuring out which is the nearest was difficult. But I did it, for you guys. ;)

The Android's Dream by John Scalzi

"Howdy Ben", Creek said "fancy meeting you here".

Hey look! No spoilers. *grin*

~~~

The Portable Bluetooth Rotary Phone. I kind of, sort of *really* want this. Sad, I know. And if it weren't two hundred and fifty dollars, I might have talked myself into one someday.
myschyf: (Default)
Important stuff that just happened first, then the rest of the post.

Charlie's being transported to UVA as I type. I'm...a lot more emotional than I was last time, probably because surgery is pretty much a given this time. Or maybe I'm just still dealing with everything from last time. No idea, but I finally stopped crying. Hey, I can always go back to it later.

We are packing and putting things together, stopping mail, all that sort of thing. Unless it comes today, we're going to have to ask one of the neighbors to keep an eye out for the dvd player, which is coming via UPS. Well, at least we won't have to worry about losing it...

~~~

I've started to use tags in my journal. Mainly to help anyone who's new to Charlie's saga, but I've been thinking about using them for a while. I don't know if I'll go back and tag everything in my journal. That's a lot of years, especially going through by hand. Of course, the whole enterprise would be simpler if I remembered to tag the *new* entries rather than having to go back and do it...

~~~

I got one of the two pair of fingerless gloves I ordered today, and they're perfect. My hands (especially my right, for some unknown reason) tend to get chilly while I'm using my computer, but besides the fact that typing in gloves is inconvenient at best, I hate having my fingertips covered for any length of time. I don't know why, I just flat out do. So, I got a pair of black and grey striped fingerless gloves to keep by the 'puter (those are the ones that arrived) and a pair of fleece fingerless gloves with a removable mitten cover (there's a button on the back of each glove so that the cover doesn't flop around) for outside. I've been thinking about this for a while, but never remembered to search for them. Till now.:)

~~~

Damn. A Craven County couple are in the Guinness World Records book.

The two did nothing outlandish such as sky-diving upside down, dancing for days, taking the longest lawn mower ride or having the most tattoos.

No, Herbert and Zelmyra Fisher of the Brownsville community have been married for more than 84 years.


Great article. And so much *awwwwww*.

Though, I hope people don't start holding them up and going "See? They've been married for eighty-four years, you should totally stay in your sucky marriage". 'Cause, from what I can tell, the reason they've stayed together so long is 'cause they *don't* have a sucky marriage.

~~~

Oh look, a meme.

Grab the book nearest you (the NEAREST, not your favorite book, the coolest, or the most intellectual).
Turn to page 56.
Find the fifth full sentence.
Post that sentence along with these instructions in your LJ:

Figuring out which is the nearest was difficult. But I did it, for you guys. ;)

The Android's Dream by John Scalzi

"Howdy Ben", Creek said "fancy meeting you here".

Hey look! No spoilers. *grin*

~~~

The Portable Bluetooth Rotary Phone. I kind of, sort of *really* want this. Sad, I know. And if it weren't two hundred and fifty dollars, I might have talked myself into one someday.
myschyf: (Charlie waving)
We had a really good meeting with Dr. Clawson yesterday. After getting stuck in traffic for two hours (overturned tractor-trailer, but no fatalities. Just dellllaaaaaaaaaaaaay). At least it was all on the news so they knew we weren't lollygaggers.

Okay, we *are* lollygaggers, but not yesterday.

Long story short? Charlie is getting a G-Tube. BUT it was still a bad idea when she was at JHU.

Remember the list of reasons I had for her not getting a G-tube? The fact that she was gaining weight, wetting her diapers, not dehydrated (I'm not sure if I listed that one, but it's important), that sort of thing? Well, since she's been back at Winchester, she's been gaining a little then losing a little, then gaining a little, then losing again. Nothing terrifying, but she hardly ever loses weight. And she's been throwing up lately, for no reason they or we can discern. So she's getting even less nutrition, and they can only give her so much at night (she gets food on demand during the day, then over the pump at night, to make up what she didn't take). And she hasn't been wetting her diapers as much, meaning that she's heading toward dehydration.

Why not just keep her on the OG(oral-gastric)tube? Well, for one, she absolutely hates it and has hated it from the moment she noticed it. She fights when it's put down, she tries to pull it out, she always pushes it as far out with her tongue as she can. It isn't torture, but it's pretty damn close, given that this has been down her throat (as her nasal passages are too narrow) pretty much since birth. It's irritating her throat, possibly causing her reflux and could be one of the reasons she's throwing up. Because when she throws up, the tube comes out with everything else (and it may not be. It might be a total mystery forever if there's no firm medial reason, 'cause she's two and a half months old, so it's not like she'll remember once she's old enough to talk).

We were going to have her on the tube at home, but there's a very real chance of the tube moving up (or Charlie pulling it partially out) and her aspirating the food into her lungs, which will cause pneumonia. Talk about the *last* thing she needs.

But she simply won't eat enough by mouth. Dr. Clawson hypothesizes that having the tube down her throat the majority of the time (though now they take it out during the day, so half of the majority of the time) is making her not wanting to have *anything* in her mouth at all, period. She'll still take some from her bottle, but usually not much. And the later it gets, the less she takes. Apparently, she won't eat at night anymore. As in *refuses*. And none of us know why. Sure, sometimes it's 'cause she's sleepy, but not all the time.

If she could start solids, this would be so much easier. But she's at least a month and a half from that, and that's just using the time Sammy started experimenting with solids.

I hate this idea. Jeff hates this idea. The doctors hate this idea. But, it's the best of a small handfuls of ways to get nutrition into this child.

The meeting was amazing in its difference from JHU. There was the doctor and two nurses who knew Charlie well. We each got a chance to talk, and nobody tried to talk us into *anything*. This was presented as the best option, but Dr. Clawson said that if we wanted to continue with the tube feeding, she would certainly do that.

She said that when she was trying to decide something like this, she treated the case as if the baby were her own child. I was thunderstruck. Because one of the things my mom had said was that, when my Boomps was meeting with a doctor to figure out what to do wrt his lung cancer, the doctor offered an option and my grandfather said "If I was your father, would you still think {option} was a good idea?" The doctor said yes, and so Boomps did it. The fact that she said this before I'd even started to ask this question helped me so very much.

I still don't want my "doesn't even weigh as much as the sack of potatoes we buy at Costco" sized baby to have surgery. And if I think about it for too long, the idea of them cutting into her makes me cry, just like the idea of her having the surgery to correct her stenosis made me cry.

But, this doesn't feel WRONG the way it did at JHU. I am humiliated by the fact that Jeff and I were talked into this at JHU, even if it was for less than an hour. I don't know that I'll ever forgive myself for that, even if we didn't get to the point where we signed a consent form. But this time? It's big and it's scary but it's also okay.

Right now, this is what she needs. Partially to get enough nutrition into her so that she doesn't get uber-dehydrated, lose weight and be generally miserable. And partially because if we keep ramming that tube down her throat, the oral aversion she has now is going to grow to the point where she'll pretty much refuse to take *anything* by mouth. That would suck so badly for her (and wouldn't end in babyhood). It wouldn't be a picnic for us either, but this is so very much about Charlie. She's gone through so much in her short life, and if this will help her eat, help her *want* to eat and bring her home, then this is what we're going to do.

The plan is, once she's got the tube, that she'll eat by mouth whenever she wants and we top her up at night. Once she doesn't have to deal with the tube down her throat, we're hoping she increases what she takes by mouth, and eventually, she won't need the G-tube any longer.

So. Sometime this week or possibly next week, we're off to UVA. Dr. Clawson & the hospital have a really good relationship with them, she trusts them and she's going to tell them, flat out, that we've pretty much tried everything to get her to eat and if they want to try for a day or two, fine, but *Only* for a day or two at the most. That she's there for surgery, and if they don't plan to do it, don't accept the transfer.

Have I mention how much I like Dr. Clawson? Dr. Lee rocks as well, but I've had more contact with her. Oh, and she knows the pediatrician we picked out and says she's really good. Yay. :)

Also, both the doctors have expressed their frustration with JHU. But, at least they didn't return *their* calls either. So it wasn't just that they hated us...apparently they hate everyone. ;)
myschyf: (Charlie waving)
We had a really good meeting with Dr. Clawson yesterday. After getting stuck in traffic for two hours (overturned tractor-trailer, but no fatalities. Just dellllaaaaaaaaaaaaay). At least it was all on the news so they knew we weren't lollygaggers.

Okay, we *are* lollygaggers, but not yesterday.

Long story short? Charlie is getting a G-Tube. BUT it was still a bad idea when she was at JHU.

Remember the list of reasons I had for her not getting a G-tube? The fact that she was gaining weight, wetting her diapers, not dehydrated (I'm not sure if I listed that one, but it's important), that sort of thing? Well, since she's been back at Winchester, she's been gaining a little then losing a little, then gaining a little, then losing again. Nothing terrifying, but she hardly ever loses weight. And she's been throwing up lately, for no reason they or we can discern. So she's getting even less nutrition, and they can only give her so much at night (she gets food on demand during the day, then over the pump at night, to make up what she didn't take). And she hasn't been wetting her diapers as much, meaning that she's heading toward dehydration.

Why not just keep her on the OG(oral-gastric)tube? Well, for one, she absolutely hates it and has hated it from the moment she noticed it. She fights when it's put down, she tries to pull it out, she always pushes it as far out with her tongue as she can. It isn't torture, but it's pretty damn close, given that this has been down her throat (as her nasal passages are too narrow) pretty much since birth. It's irritating her throat, possibly causing her reflux and could be one of the reasons she's throwing up. Because when she throws up, the tube comes out with everything else (and it may not be. It might be a total mystery forever if there's no firm medial reason, 'cause she's two and a half months old, so it's not like she'll remember once she's old enough to talk).

We were going to have her on the tube at home, but there's a very real chance of the tube moving up (or Charlie pulling it partially out) and her aspirating the food into her lungs, which will cause pneumonia. Talk about the *last* thing she needs.

But she simply won't eat enough by mouth. Dr. Clawson hypothesizes that having the tube down her throat the majority of the time (though now they take it out during the day, so half of the majority of the time) is making her not wanting to have *anything* in her mouth at all, period. She'll still take some from her bottle, but usually not much. And the later it gets, the less she takes. Apparently, she won't eat at night anymore. As in *refuses*. And none of us know why. Sure, sometimes it's 'cause she's sleepy, but not all the time.

If she could start solids, this would be so much easier. But she's at least a month and a half from that, and that's just using the time Sammy started experimenting with solids.

I hate this idea. Jeff hates this idea. The doctors hate this idea. But, it's the best of a small handfuls of ways to get nutrition into this child.

The meeting was amazing in its difference from JHU. There was the doctor and two nurses who knew Charlie well. We each got a chance to talk, and nobody tried to talk us into *anything*. This was presented as the best option, but Dr. Clawson said that if we wanted to continue with the tube feeding, she would certainly do that.

She said that when she was trying to decide something like this, she treated the case as if the baby were her own child. I was thunderstruck. Because one of the things my mom had said was that, when my Boomps was meeting with a doctor to figure out what to do wrt his lung cancer, the doctor offered an option and my grandfather said "If I was your father, would you still think {option} was a good idea?" The doctor said yes, and so Boomps did it. The fact that she said this before I'd even started to ask this question helped me so very much.

I still don't want my "doesn't even weigh as much as the sack of potatoes we buy at Costco" sized baby to have surgery. And if I think about it for too long, the idea of them cutting into her makes me cry, just like the idea of her having the surgery to correct her stenosis made me cry.

But, this doesn't feel WRONG the way it did at JHU. I am humiliated by the fact that Jeff and I were talked into this at JHU, even if it was for less than an hour. I don't know that I'll ever forgive myself for that, even if we didn't get to the point where we signed a consent form. But this time? It's big and it's scary but it's also okay.

Right now, this is what she needs. Partially to get enough nutrition into her so that she doesn't get uber-dehydrated, lose weight and be generally miserable. And partially because if we keep ramming that tube down her throat, the oral aversion she has now is going to grow to the point where she'll pretty much refuse to take *anything* by mouth. That would suck so badly for her (and wouldn't end in babyhood). It wouldn't be a picnic for us either, but this is so very much about Charlie. She's gone through so much in her short life, and if this will help her eat, help her *want* to eat and bring her home, then this is what we're going to do.

The plan is, once she's got the tube, that she'll eat by mouth whenever she wants and we top her up at night. Once she doesn't have to deal with the tube down her throat, we're hoping she increases what she takes by mouth, and eventually, she won't need the G-tube any longer.

So. Sometime this week or possibly next week, we're off to UVA. Dr. Clawson & the hospital have a really good relationship with them, she trusts them and she's going to tell them, flat out, that we've pretty much tried everything to get her to eat and if they want to try for a day or two, fine, but *Only* for a day or two at the most. That she's there for surgery, and if they don't plan to do it, don't accept the transfer.

Have I mention how much I like Dr. Clawson? Dr. Lee rocks as well, but I've had more contact with her. Oh, and she knows the pediatrician we picked out and says she's really good. Yay. :)

Also, both the doctors have expressed their frustration with JHU. But, at least they didn't return *their* calls either. So it wasn't just that they hated us...apparently they hate everyone. ;)
myschyf: (Charlie and Sammy)
Sam's spelling? Kind of exploding, in a really good way. Why, you ask? Would you believe the chat feature in Dizzywood, and talking to her dad and I via Windows Messenger?

There is a rule that she can't use an abbreviation or acronym if she can't spell the words involved. And we're talking about the difference between "your" and "you're", that sort of thing. It's really, really nifty. It was what I was hoping would happen, and I'm so glad it did.

~~~

I miss Charlie terribly. I haven't seen her since the day before V-day. I know I did the right thing, but it's still utterly depressing.

I know that she's at the good hospital now and that they're working with us to get her home asap, but it still feels like she's never gonna be here. It's been so bloody long. And I work so hard not to think about that part of it, because I'm tired of crying and I'm tired of feeling so hopeless.

Who's have thought bringing my baby home would be so difficult?

On the good side, still not my fault. The stenosis was something that could only be discovered once she was born, and nothing I did/didn't do could have created or prevented it. Well, okay. I could have not gotten pregnant, but that seems drastic.

The whole "I'm to blame for all the problems of the world, especially those in my family" thing? Yeah, so not new. I can't actually remember when it started, but I wouldn't be surprised if it turned up when I was thirteen or fourteen. And then, when I woke up in the ICU, it was gone. My extreme guilt about the universe had vanished.

I think it was because, when I woke up and found out Charlie was alive (and was Charlie, rather than Danny) and I was alive, even though (some of) The Worst Things had happened, then all my guilt and all my superstitions seemed ridiculous. And amazingly, they haven't come back either.

~~~

I finally got my mp3 player recognized by my computer! I've only had it for two (maybe three) years now. I appreciate Jeff being so kind in letting me hijack his to put music on my player, but it's so nice to be able to do it myself. And now that I can reliably change stuff as I like, I can finally use it for audio books. Yay!

~~~

A week or so ago, [livejournal.com profile] popfiend (who is truly nifty) asked for love stories. I told him one, and have been thinking it belongs here. So...here.

A short love story.

Charlie was born mid-afternoon on December 10. I woke up around five in the morning the next day. Jeff was at the hospital from the time he took me (and Sammy, but she went home with my mom sometime on Thursday) to the ER to the time we were both awake (he slept in the waiting room) and he saw me. He came by later, so we could watch CSI together.

About twenty minutes after the poor guy went home to finally get some sleep, I started to have one hell of a time breathing. I'd had breathing problems all day. Part of it was the anesthesia leaving my body and part of it was the fact that I couldn't stand the oxygen masks. They eventually gave me a cannula (the little clear tube one wears in the nostrils) and I got used to that. But on Thursday night, it felt like my entire inside was swollen (that's the best description I've got). I told the nurses and they said it was the anesthesia and that it would get better eventually.

But right then, I wasn't able to take a deep breath, and the oxygen wasn't helping. So, I called Jeff, waking him up (we live fiveish minutes away from that hospital) and asked him to please come back, because I was scared and panicking.

He did. Which was so kind. I mean, I would have understood if he didn't or couldn't. But he did.

And once he got there, I was able to breathe deeper and stop feeling like I was going to die. It didn't fix everything, but him sitting at my bedside, holding my hand and talking about goofy stuff helped me breathe better.

I knew he loved me, but that was amazing.

~~~

Oh, in other news? We lost the dvd player. Seriously.

When we were putting stuff in the van for the trek to B'more, I implusivly grabbed the dvd player (and remote), 'cause I figured we could hook it up to the tv in the room. We did that in 2002 with our vcr. Unfortunately, the back of the tv had a cover on it, and we couldn't get to the connectors, and there weren't tvs in the rooms at the Children's Home (which totally sounds like an orphanage).

When we were moving out of the hotel, we almost forgot it, but I grabbed it when I was doing the last scan of the room (it was on the top shelf of the entertainment center, easy to overlook) and I remember bringing it down. I either gave it to Jeff to put in or put it in myself. I *think* I put it in the van myself, but I'd put so many other things in that it might not be a real memory.

When we were bringing stuff into the new place, we decided to leave it in the van, in the cargo section, which was cavernous and difficult to see from outside the van, even if you were looking right in the windows. And when we got home, it was gone. Nowhere to be seen The van had a very good (and loud) alarm and there were no signs of it being broken into. If they'd managed to get into the van without setting off the alarm, why close it back up? And why not take the whole thing, not the hard-to-see dvd player?

So, yeah. Don't think it was stolen, but also can't figure out where it was lost. It just kind of vanished, 'cause the van was never left open when bringing things in without one of us there, doing stuff *with* the van contents. And nobody was in the room besides us.

It is a mystery for the ages. But, we bought a new one (refurbished, from Overstock for less than the original. Small yay) and it should be here soon. And now we have two remotes for it. So that'll be fun. ;)

~~~

As you know, Bob, Sammy is very into the Harry Potter books. She's read the first two and we're waiting on the third to come from Paperbackswap (I've got them all, but the first three are in storage. The fourth might be as well, I'm not exactly sure).

I'm getting her some Harry Potter stuff (including a deluxe Wizard's kit with robe and wand), and find myself working really hard to *not* get her anything that spoils the books for her. I've read them so often than they kind of meld together for me into one long story.

I don't know if she'll go beyond book four right now or not. She'll certainly be allowed if she wants to, but it might be a bit daunting. We'll see.

I'm also looking at Bella Sara stuff for her...it's a fairly new obsession, but one we're doing together. Mainly 'cause she and her dad play Disney's Toontown and are really enthusiastic about it, but I'm not into that particular game. So, I figured this would be nice...and so far, it doesn't look like it can become all crapped up like Neopets. We'll see about *that* too. I was sure I'd seen a Bella Sara board game somewhere, but can't find it for the life of me. Oh well, we'll live without it somehow (especially if it doesn't exist).

~~~

I've missed just writing here. It felt wrong to go on about goofy stuff while Charlie was in the hospital. But, not doing it didn't get her out of the hospital, so may as well core-dump from time to time. That may even help. :)

~~~

Gotta go. Meeting with Dr. Clawson at four.
myschyf: (Charlie and Sammy)
Sam's spelling? Kind of exploding, in a really good way. Why, you ask? Would you believe the chat feature in Dizzywood, and talking to her dad and I via Windows Messenger?

There is a rule that she can't use an abbreviation or acronym if she can't spell the words involved. And we're talking about the difference between "your" and "you're", that sort of thing. It's really, really nifty. It was what I was hoping would happen, and I'm so glad it did.

~~~

I miss Charlie terribly. I haven't seen her since the day before V-day. I know I did the right thing, but it's still utterly depressing.

I know that she's at the good hospital now and that they're working with us to get her home asap, but it still feels like she's never gonna be here. It's been so bloody long. And I work so hard not to think about that part of it, because I'm tired of crying and I'm tired of feeling so hopeless.

Who's have thought bringing my baby home would be so difficult?

On the good side, still not my fault. The stenosis was something that could only be discovered once she was born, and nothing I did/didn't do could have created or prevented it. Well, okay. I could have not gotten pregnant, but that seems drastic.

The whole "I'm to blame for all the problems of the world, especially those in my family" thing? Yeah, so not new. I can't actually remember when it started, but I wouldn't be surprised if it turned up when I was thirteen or fourteen. And then, when I woke up in the ICU, it was gone. My extreme guilt about the universe had vanished.

I think it was because, when I woke up and found out Charlie was alive (and was Charlie, rather than Danny) and I was alive, even though (some of) The Worst Things had happened, then all my guilt and all my superstitions seemed ridiculous. And amazingly, they haven't come back either.

~~~

I finally got my mp3 player recognized by my computer! I've only had it for two (maybe three) years now. I appreciate Jeff being so kind in letting me hijack his to put music on my player, but it's so nice to be able to do it myself. And now that I can reliably change stuff as I like, I can finally use it for audio books. Yay!

~~~

A week or so ago, [livejournal.com profile] popfiend (who is truly nifty) asked for love stories. I told him one, and have been thinking it belongs here. So...here.

A short love story.

Charlie was born mid-afternoon on December 10. I woke up around five in the morning the next day. Jeff was at the hospital from the time he took me (and Sammy, but she went home with my mom sometime on Thursday) to the ER to the time we were both awake (he slept in the waiting room) and he saw me. He came by later, so we could watch CSI together.

About twenty minutes after the poor guy went home to finally get some sleep, I started to have one hell of a time breathing. I'd had breathing problems all day. Part of it was the anesthesia leaving my body and part of it was the fact that I couldn't stand the oxygen masks. They eventually gave me a cannula (the little clear tube one wears in the nostrils) and I got used to that. But on Thursday night, it felt like my entire inside was swollen (that's the best description I've got). I told the nurses and they said it was the anesthesia and that it would get better eventually.

But right then, I wasn't able to take a deep breath, and the oxygen wasn't helping. So, I called Jeff, waking him up (we live fiveish minutes away from that hospital) and asked him to please come back, because I was scared and panicking.

He did. Which was so kind. I mean, I would have understood if he didn't or couldn't. But he did.

And once he got there, I was able to breathe deeper and stop feeling like I was going to die. It didn't fix everything, but him sitting at my bedside, holding my hand and talking about goofy stuff helped me breathe better.

I knew he loved me, but that was amazing.

~~~

Oh, in other news? We lost the dvd player. Seriously.

When we were putting stuff in the van for the trek to B'more, I implusivly grabbed the dvd player (and remote), 'cause I figured we could hook it up to the tv in the room. We did that in 2002 with our vcr. Unfortunately, the back of the tv had a cover on it, and we couldn't get to the connectors, and there weren't tvs in the rooms at the Children's Home (which totally sounds like an orphanage).

When we were moving out of the hotel, we almost forgot it, but I grabbed it when I was doing the last scan of the room (it was on the top shelf of the entertainment center, easy to overlook) and I remember bringing it down. I either gave it to Jeff to put in or put it in myself. I *think* I put it in the van myself, but I'd put so many other things in that it might not be a real memory.

When we were bringing stuff into the new place, we decided to leave it in the van, in the cargo section, which was cavernous and difficult to see from outside the van, even if you were looking right in the windows. And when we got home, it was gone. Nowhere to be seen The van had a very good (and loud) alarm and there were no signs of it being broken into. If they'd managed to get into the van without setting off the alarm, why close it back up? And why not take the whole thing, not the hard-to-see dvd player?

So, yeah. Don't think it was stolen, but also can't figure out where it was lost. It just kind of vanished, 'cause the van was never left open when bringing things in without one of us there, doing stuff *with* the van contents. And nobody was in the room besides us.

It is a mystery for the ages. But, we bought a new one (refurbished, from Overstock for less than the original. Small yay) and it should be here soon. And now we have two remotes for it. So that'll be fun. ;)

~~~

As you know, Bob, Sammy is very into the Harry Potter books. She's read the first two and we're waiting on the third to come from Paperbackswap (I've got them all, but the first three are in storage. The fourth might be as well, I'm not exactly sure).

I'm getting her some Harry Potter stuff (including a deluxe Wizard's kit with robe and wand), and find myself working really hard to *not* get her anything that spoils the books for her. I've read them so often than they kind of meld together for me into one long story.

I don't know if she'll go beyond book four right now or not. She'll certainly be allowed if she wants to, but it might be a bit daunting. We'll see.

I'm also looking at Bella Sara stuff for her...it's a fairly new obsession, but one we're doing together. Mainly 'cause she and her dad play Disney's Toontown and are really enthusiastic about it, but I'm not into that particular game. So, I figured this would be nice...and so far, it doesn't look like it can become all crapped up like Neopets. We'll see about *that* too. I was sure I'd seen a Bella Sara board game somewhere, but can't find it for the life of me. Oh well, we'll live without it somehow (especially if it doesn't exist).

~~~

I've missed just writing here. It felt wrong to go on about goofy stuff while Charlie was in the hospital. But, not doing it didn't get her out of the hospital, so may as well core-dump from time to time. That may even help. :)

~~~

Gotta go. Meeting with Dr. Clawson at four.
myschyf: (Charlie and Sammy)
Here's an example of why we were so happy to get her back to Winchester.

They already have a plan in place to *get her home*. Jeff went by last night to see her and have a meeting with one of her doctors (which, I must repeat, Dr. Lee *called to set up*). She's going to come home with the stuff for the tube, including a medicine pump to push in the leftover food and a monitor akin to the one she wears at the hospital.

She'll only need the monitor for the times when she's not *right* with us and being watched. So, maybe five minutes a day.;)

Jeff's got an appointment tomorrow morning to learn how to use the monitor. And if my bloody stupid cold would go all the way away, I could learn too. *grump to the nth power*

So...yeah. Mega-progress, and she's in a place where her dad gets stopped in the door to the NICU, 'cause one of the nurses wanted to tell him how glad she was to see Charlie again. Rock on.

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