Wednesday, May 28, 2008
Monday, May 26, 2008
Tibits
It feels like forever since I've posted, but it's only been 2 weeks. We've been busier than usual, so maybe that's why it seems like more time has elapsed. Here's what's new and exciting in our world.
Our friends Kelly and Joelle came over last weekend (the 17th) and helped Steve install our new kitchen floor! It looks amazing, and so much better than the terrible floor that was there before. Steve and Kelly managed to get it all finished in one day, and then Steve and I spent one more day installing trim and quarter-round to finish off. We also got a new stove (nothing exciting, but better than the old one), and now we just need a new dishwasher to be done with the big stuff. We'll repaint in a few months (have to give the foundation work time to "settle" in case we need to do any patching) and finally be DONE with that room. Woo!
Memorial Day weekend I went to Beloit for a double-duty trip: I attended my 15-year (gasp!) class reunion and it was Mom/G-ma's birthday! Saturday was the main day for reunion activities, which consisted of a parade (complete with Class of '93 float) followed by a family picnic. The night's festivities included an adults-only dinner and barn party (complete with DJ and karaoke). It's a little hard for me to say this, but I actually had fun. We moved to Kansas when I was a sophomore, so I didn't bond with a ton of classmates (despite there being only 58 in our graduating class). I made some good friends and was friendly with about everyone, but it wasn't a"Remember back in Mrs. S0-and-so's first grade class?" sort of event for me. I must admit to a fair share of eye-rolling and cynicism prior to the first event, but I'm here to say I was wrong and that it was actually much more enjoyable than I'd thought it would be. I guess 15 years is just the right amount of time to want to see everyone again. My friend Julie, whom I've stayed in close contact with over the years, was there, and so were most of my other good friends, and that made it a good time. Anyway, I'm glad I went after all. Oh, and getting to show off Adele was worth the trip, if nothing else! Mom's birthday was Sunday, so after church we went to lunch and then A and I stayed and visited for a few hours. The plan was to leave mid-afternoon and make it back home around supper time. But the threat of bad weather and the fact that I was dog-tired enticed me to stay another night, and I'm glad I did. I don't get to Beloit often enough, and I was glad to have another evening to visit and relax.
As for Adele...she is unstoppable these days. She's crawling so fast now, and her new favorite game is when we act like we're chasing her, which prompts her to crawl as fast as she can, giggling and squealing the whole way. She'll do the same thing when she's chasing after the cat or dog, or making a beeline for the dog's water dish. We're forever trying to keep her out of that! She's also perfected the feat of pulling up to standing. She can now reach up to turn her crib mobile on and off, and will pull herself to standing using my legs when I'm standing up. I have a feeling cruising isn't too far off!
She's been eating well, and we've been implementing some of the feeding therapy plans we've received. Mostly they include providing plenty of stuff for her to chew on all the time and especially prior to feedings to help wake up her mouth before she eats. Did you know Slim Jims were considered a good food for therapy? Hm, yeah. Not sure that will be on our grocery list soon, but it was on the list of "good" foods. (Something to do with the flavor and saltiness helping to stimulate the nerves/palate.) We were notified that our insurance will cover some of the costs of Simply Thick, a gel thickener (and better than the powder we've always used). It will be better to use that kind when we start giving her more water and juices and things that need a more refined thickener. The gel won't be grainy and icky like the powdered stuff is. I'm sure SHE wouldn't care either way, but I couldn't stand to look at it using the powdered thickener. Yuck. I'm having enough trouble already thinking about thickened water without having it be cloudy and grainy too!
I guess that's about it for now. Here are a few photos!
Her new favorite toy, because she can stand up and play with it! (Check out the "Jolly Jill" Baby Legs legwarmers, a gift from Lindi!)
Kitchen before 1 (the strip of concrete is a result of the foundation work--it hasn't always been there!)
Kitchen before 2
Kitchen after 1: AAAAAHHHHH! So much better!
Kitchen after 2
Our friends Kelly and Joelle came over last weekend (the 17th) and helped Steve install our new kitchen floor! It looks amazing, and so much better than the terrible floor that was there before. Steve and Kelly managed to get it all finished in one day, and then Steve and I spent one more day installing trim and quarter-round to finish off. We also got a new stove (nothing exciting, but better than the old one), and now we just need a new dishwasher to be done with the big stuff. We'll repaint in a few months (have to give the foundation work time to "settle" in case we need to do any patching) and finally be DONE with that room. Woo!
Memorial Day weekend I went to Beloit for a double-duty trip: I attended my 15-year (gasp!) class reunion and it was Mom/G-ma's birthday! Saturday was the main day for reunion activities, which consisted of a parade (complete with Class of '93 float) followed by a family picnic. The night's festivities included an adults-only dinner and barn party (complete with DJ and karaoke). It's a little hard for me to say this, but I actually had fun. We moved to Kansas when I was a sophomore, so I didn't bond with a ton of classmates (despite there being only 58 in our graduating class). I made some good friends and was friendly with about everyone, but it wasn't a"Remember back in Mrs. S0-and-so's first grade class?" sort of event for me. I must admit to a fair share of eye-rolling and cynicism prior to the first event, but I'm here to say I was wrong and that it was actually much more enjoyable than I'd thought it would be. I guess 15 years is just the right amount of time to want to see everyone again. My friend Julie, whom I've stayed in close contact with over the years, was there, and so were most of my other good friends, and that made it a good time. Anyway, I'm glad I went after all. Oh, and getting to show off Adele was worth the trip, if nothing else! Mom's birthday was Sunday, so after church we went to lunch and then A and I stayed and visited for a few hours. The plan was to leave mid-afternoon and make it back home around supper time. But the threat of bad weather and the fact that I was dog-tired enticed me to stay another night, and I'm glad I did. I don't get to Beloit often enough, and I was glad to have another evening to visit and relax.
As for Adele...she is unstoppable these days. She's crawling so fast now, and her new favorite game is when we act like we're chasing her, which prompts her to crawl as fast as she can, giggling and squealing the whole way. She'll do the same thing when she's chasing after the cat or dog, or making a beeline for the dog's water dish. We're forever trying to keep her out of that! She's also perfected the feat of pulling up to standing. She can now reach up to turn her crib mobile on and off, and will pull herself to standing using my legs when I'm standing up. I have a feeling cruising isn't too far off!
She's been eating well, and we've been implementing some of the feeding therapy plans we've received. Mostly they include providing plenty of stuff for her to chew on all the time and especially prior to feedings to help wake up her mouth before she eats. Did you know Slim Jims were considered a good food for therapy? Hm, yeah. Not sure that will be on our grocery list soon, but it was on the list of "good" foods. (Something to do with the flavor and saltiness helping to stimulate the nerves/palate.) We were notified that our insurance will cover some of the costs of Simply Thick, a gel thickener (and better than the powder we've always used). It will be better to use that kind when we start giving her more water and juices and things that need a more refined thickener. The gel won't be grainy and icky like the powdered stuff is. I'm sure SHE wouldn't care either way, but I couldn't stand to look at it using the powdered thickener. Yuck. I'm having enough trouble already thinking about thickened water without having it be cloudy and grainy too!
I guess that's about it for now. Here are a few photos!
Her new favorite toy, because she can stand up and play with it! (Check out the "Jolly Jill" Baby Legs legwarmers, a gift from Lindi!)
Kitchen before 1 (the strip of concrete is a result of the foundation work--it hasn't always been there!)
Kitchen before 2
Kitchen after 1: AAAAAHHHHH! So much better!
Kitchen after 2
Sunday, May 11, 2008
Another Mother's Day
The internet blogosphere is atwitter with Mother's Day posts, I'm assuming. Just seems like all the moms like me who maintain blogs will be ticky-tapping their day's events into cyberhistory. :)
This is officially my second Mother's Day, as Adele was born 6 days before M.D. last year. It's old hat now. Ha! But seriously. This year's day was a billion times better than last year's. Oh my, yes. Last year was "happy." Sure, I was thankful for my daughter, and so very happy to be a mother, but at that point things were still pretty tenuous so it was hard to be happy about much of anything. But somehow, despite her precarious health and the fact she was attached to a ventilator, she managed to go shopping for my first Mother's Day present (a picture frame) complete with a hand-made card. How she climbed out of her incubator is still a mystery to me! ;) [Editor's note: Eventually I will stop with the "this time last year" notes and comparisons. I'm sure you're all tired of it by now! It's still so hard to stop thinking about this year in relation to last year, especially since "this time last year" (ugh) was so crazy.]
Today was definitely a HAPPY Mother's Day. We made it to early church, then headed for K.C. around 10:45. I'd decided I wanted my special day to involve a meal from Pei Wei, and the closest is in Overland Park. Also, Adele had a Toys R Us giftcard to use (thanks Grandparents Buren!), so we did a little shopping, too. We were home by mid afternoon, which gave us plenty of time for a nap. Ahhhhh.....
The next few weeks should be crazy as our kitchen floor is being torn up tomorrow. We're getting some foundation issues corrected, and they'll be fixing the crack in the kitchen floor (slab) at the same time. I'm glad it will be fixed, but I'm DREADING the condition of the kitchen in the interim. We're not sure how much of the floor they'll have to tear up, and the fridge is on the possible borderline. We will definitely have to move the dining room table and the deep freeze. Ugh. I hope we can just move it far enough to get out of the way, leave it unplugged and closed for a few hours, and then move it right back at the end of the day. I really don't want to have to find an out-of-the way place where we can also plug it in. Our dishwasher died last week, so we'll be using part of our stimulus rebate to buy a new one. We'll also have to put a new floor down in the kitchen, and then we figure might as well replace the stove too, so our rebate is pretty much spent. We're doing our patriotic duty to restore the economy, yessir. Anyway, hopefully the tear-up won't be too inconveniencing in the meantime. Of course the area of work is between the fridge and the sink, both places we have to have access to to fix and wash bottles. Things are always so much more difficult when you throw kids into the mix. But it will be so nice when it's done, and that's what I'm focusing on!
This is officially my second Mother's Day, as Adele was born 6 days before M.D. last year. It's old hat now. Ha! But seriously. This year's day was a billion times better than last year's. Oh my, yes. Last year was "happy." Sure, I was thankful for my daughter, and so very happy to be a mother, but at that point things were still pretty tenuous so it was hard to be happy about much of anything. But somehow, despite her precarious health and the fact she was attached to a ventilator, she managed to go shopping for my first Mother's Day present (a picture frame) complete with a hand-made card. How she climbed out of her incubator is still a mystery to me! ;) [Editor's note: Eventually I will stop with the "this time last year" notes and comparisons. I'm sure you're all tired of it by now! It's still so hard to stop thinking about this year in relation to last year, especially since "this time last year" (ugh) was so crazy.]
Today was definitely a HAPPY Mother's Day. We made it to early church, then headed for K.C. around 10:45. I'd decided I wanted my special day to involve a meal from Pei Wei, and the closest is in Overland Park. Also, Adele had a Toys R Us giftcard to use (thanks Grandparents Buren!), so we did a little shopping, too. We were home by mid afternoon, which gave us plenty of time for a nap. Ahhhhh.....
The next few weeks should be crazy as our kitchen floor is being torn up tomorrow. We're getting some foundation issues corrected, and they'll be fixing the crack in the kitchen floor (slab) at the same time. I'm glad it will be fixed, but I'm DREADING the condition of the kitchen in the interim. We're not sure how much of the floor they'll have to tear up, and the fridge is on the possible borderline. We will definitely have to move the dining room table and the deep freeze. Ugh. I hope we can just move it far enough to get out of the way, leave it unplugged and closed for a few hours, and then move it right back at the end of the day. I really don't want to have to find an out-of-the way place where we can also plug it in. Our dishwasher died last week, so we'll be using part of our stimulus rebate to buy a new one. We'll also have to put a new floor down in the kitchen, and then we figure might as well replace the stove too, so our rebate is pretty much spent. We're doing our patriotic duty to restore the economy, yessir. Anyway, hopefully the tear-up won't be too inconveniencing in the meantime. Of course the area of work is between the fridge and the sink, both places we have to have access to to fix and wash bottles. Things are always so much more difficult when you throw kids into the mix. But it will be so nice when it's done, and that's what I'm focusing on!
I guess it's been a while since I've done any basic updating, so let me give you those details. At her 12-month check-up Wednesday, she weighed 17 pounds, 15 ounces and was 28.5 inches long. Still on the small side, but she's gaining slowly, and that's all that matters. The exciting thing about the appt was finding out we don't have to come back for THREE MONTHS! This is the first time in a year we haven't had at least monthly doc appts. Of course, we will have to start having twice-monthly feeding therapy, but I'm hoping we can roll that into the early intervention appointments we already have, and we can avoid special trips to K.C.
Developmentally: Adele is crawling all over now, on all fours. She's ditched the army-crawl, for the most part. She's not always terribly fast, but she can get out of sight pretty quickly when she wants to. Just during the past week or so, she's really started pulling up on things. She's playing on her knees (both low (resting her bottom on her heels) and high), which is usually followed by her trying to pull herself to standing. She's been successful a few times, just depends on what she's balancing on. Just recently she discovered she could reach the buttons on her mobile in her crib, but that also meant she was mighty close to the top rails of the crib, so down the mattress went, to the lowest level. She should be safe for a while now. Walking doesn't seem to be anywhere in the near future, but I would expect her to show interest in cruising soon. The toy I linked to above and another one she got for her birthday should give her some help in that area, when she's ready. Also, I'm not sure, but I THINK she may be working on another tooth. She had a few fevers this weekend and has been drooling buckets, plus she's not been eating as well as she usually does. Since she doesn't have any other signs of illness at this point, I guess I'll just keep checking those gums for the tell-tale white poking through.
Okay, enough rambling. I hope all the moms and moms-to-be out there had a good day! You deserve it!Wednesday, May 7, 2008
A good day
Today was a good day. Lots to celebrate, lots to be thankful for. I won't lie--the day wasn't without some bittersweet feelings, and even a bit of anxiety thinking about last year at this time. I spent most of those first few weeks after Adele's birth in shock, I realize now, and I think it's finally wearing off. It's amazing how I can still feel that same tightness in my chest, the sadness and worry and dread, even with her sleeping in the next room. I'm sure it will be a long time before those feelings settle down.
It's been a long year, and yet at the same time it feels like only yesterday that we were scrubbing into the NICU and checking into the Ron McD's house. Getting up in the night to pump. Holding our breaths each time the phone rang. Rushing over to catch rounds. Endlessly watching monitors. It was the best of times, it was the worst of times. But we made it though--all of us!
I created a couple of slideshows commemorating Adele's first year. I hadn't planned on doing two shows, but apparently you can only do 30 images in a slideshow, and I couldn't narrow things down that much!
Anyway, without further ado, I present
Adele's First Year: The NICU Days
Adele's First Year: At Home
It's been a long year, and yet at the same time it feels like only yesterday that we were scrubbing into the NICU and checking into the Ron McD's house. Getting up in the night to pump. Holding our breaths each time the phone rang. Rushing over to catch rounds. Endlessly watching monitors. It was the best of times, it was the worst of times. But we made it though--all of us!
I created a couple of slideshows commemorating Adele's first year. I hadn't planned on doing two shows, but apparently you can only do 30 images in a slideshow, and I couldn't narrow things down that much!
Anyway, without further ado, I present
Adele's First Year: The NICU Days
Adele's First Year: At Home
Tuesday, May 6, 2008
Fun weekend
Whew! What a weekend! It was fun, definitely, but exhausting. We lucked out with great weather, and everything else went off without a hitch. Adele got way too much stuff, of course, but I guess that's what birthday parties are all about. We were so thankful to all our friends and family who came to help us celebrate Adele's first year of life!
Unfortunately, I was busy playing hostess and didn't get a ton of pics, but I'm hoping some folks will send me copies of theirs. I did manage to get a photo of the main cake before we cut into it (Adele's "smash" cake was decorated the same). For those of you who haven't been to the house, I had the store decorate it to match the nursery theme.
Adele and her cousin Edie share a ride on the stuffed duck rocking toy Adele received from the Fitznos.
Cake smooshery:
And this video is totally random, not birthday related, but it shows Adele's favorite new thing to do:
Did you like the wipeout at the end? Don't worry--no babies were harmed in the making of this film!
Sorry this post is pretty light on details. It was a long weekend, and tomorrow is a big day! I'll try to upload a link to an album with more photos soon, and there will be a post tomorrow.
Unfortunately, I was busy playing hostess and didn't get a ton of pics, but I'm hoping some folks will send me copies of theirs. I did manage to get a photo of the main cake before we cut into it (Adele's "smash" cake was decorated the same). For those of you who haven't been to the house, I had the store decorate it to match the nursery theme.
Adele and her cousin Edie share a ride on the stuffed duck rocking toy Adele received from the Fitznos.
Cake smooshery:And this video is totally random, not birthday related, but it shows Adele's favorite new thing to do:
Did you like the wipeout at the end? Don't worry--no babies were harmed in the making of this film!
Sorry this post is pretty light on details. It was a long weekend, and tomorrow is a big day! I'll try to upload a link to an album with more photos soon, and there will be a post tomorrow.
Friday, May 2, 2008
Gulp
Things I should be doing
And just so the title of this post makes some sense, I wanted to update everyone on the swallow study Adele had this week. Unfortunately, it didn't go as well as we hoped. They didn't even ATTEMPT unthickened liquids, as she showed problems with even some of the nectar-consistency stuff. So for those of you interested in the short version, we will have to continue to thicken all liquids (formula for now and any juice, water, cow's milk, soup, etc. when she gets there) to syrup consistency for the next 9-12 MONTHS, the soonest they'll do another swallow study (because of the radiation exposure). Bummer. The good news is that she can have any baby foods above Stage 2 (as they're usually thicker already) and any table foods that are age-appropriate. And since it's very necessary she has the thickeners, we'll get our Letter of Medical Necessity from someone with a bunch of letters after their name, which should be enough to get insurance to cover a portion of the cost of the thickener. AND we'll request the kind that works for breastmilk, so maybe we can finally use that up. I'd like my freezer space back now, please!
For those interested in the long story, or if you just like knowing about anatomy and the "whys" of things, keep reading.
So some of you may wonder "Why thicker? Wouldn't that make her more apt to choke?" Logical question, and one I had to ask the OT myself. They explained it this way: Think of the liquid going into Adele's throat as a waterfall, one that is constantly flowing because the liquid just keeps coming in via bottle or cup, etc.. At the bottom of the waterfall (which is sort of in the middle of the throat, near the Adam's apple) is a dam caused by the natural make-up of the throat/neck bones and muscles. In normal swallowing, the waterfall liquid collects and pools for very smallest amount of time (we're talking miliseconds) before the swallowing reflex kicks in and the liquid is forced into the esophagus. Adele's swallowing reflex is delayed (she gets the lazy reflex gene from me, I'm sure), which means that the liquid collects TOO much (because it's still flowing in, remember) and it actually runs over that "dam". There are only two places the over flow can go: into her esophagus or into her windpipe. Unfortunately, too often it is going into the windpipe, which is what they call penetration. (I could actually SEE this happening during the study. It was pretty hard to miss.) As you can imagine, this is very dangerous. The OT said that when she reviewed the film in slow-mo, she actually saw the liquid touch the vocal cords. The point where penetration becomes aspiration (when the liquid actually goes INTO the lungs) is when it goes past the vocal cords, so Adele missed aspirating by thismuch. Needless to say, that's not a chance we can take. So, basically, by thickening the liquid we slow it down just enough to give her reflex time to catch up and swallow before it overflows.
You may be asking yourself, "Self, is this a muscle tone/strength issue? Is it just a matter of her building up the tone in that area?" Well, not exactly. Since it's a reflex, it's a brain, or more precisely, spinal cord, issue. The neurons just aren't firing fast enough to send the message to swallow sooner. Could it be a lingering side-effect of her prematurity? Possibly. Probably. Is there a chance that reflex will quicken over time? Probably. Possibly. Since she doesn't have any other spinal issues, such as cerebral palsy, it's quite possible she'll just outgrow it. But there's also the possibility that she won't, and this is just the way she's made. That's kind of a yucky thought, but definitely not the end of the world. And since all of her motor skills/development are completely on track, we have no reason to believe this condition should linger. Still, I say, if this is the worst prematurity side-effect we have to deal with, well, then we have it pretty dang easy.
So that's the story. More than you ever wanted to know, probably! On the bright side, Adele was good as gold the whole day, she ate when she needed to, even the nasty barium, didn't fuss or fight--she was her usual charming, smiley self. She's learned to wave, so she was more than happy to show off her new skill to anyone who spoke to her. Such a sweetie! Can't ask for a better kid, that's for sure!
Okay, now for REAL I'm off to clean and prep. Enough fiddling around! I will be sure to take lots of pictures, so look for those next week.
- Cleaning the house in preparation for a houseful of guests
- Grocery shopping for the party tomorrow
- Preparing food for tomorrow
- Laundry
- Blogging
- Watching Game Show Network
- Any other form of procrastinating
And just so the title of this post makes some sense, I wanted to update everyone on the swallow study Adele had this week. Unfortunately, it didn't go as well as we hoped. They didn't even ATTEMPT unthickened liquids, as she showed problems with even some of the nectar-consistency stuff. So for those of you interested in the short version, we will have to continue to thicken all liquids (formula for now and any juice, water, cow's milk, soup, etc. when she gets there) to syrup consistency for the next 9-12 MONTHS, the soonest they'll do another swallow study (because of the radiation exposure). Bummer. The good news is that she can have any baby foods above Stage 2 (as they're usually thicker already) and any table foods that are age-appropriate. And since it's very necessary she has the thickeners, we'll get our Letter of Medical Necessity from someone with a bunch of letters after their name, which should be enough to get insurance to cover a portion of the cost of the thickener. AND we'll request the kind that works for breastmilk, so maybe we can finally use that up. I'd like my freezer space back now, please!
For those interested in the long story, or if you just like knowing about anatomy and the "whys" of things, keep reading.
So some of you may wonder "Why thicker? Wouldn't that make her more apt to choke?" Logical question, and one I had to ask the OT myself. They explained it this way: Think of the liquid going into Adele's throat as a waterfall, one that is constantly flowing because the liquid just keeps coming in via bottle or cup, etc.. At the bottom of the waterfall (which is sort of in the middle of the throat, near the Adam's apple) is a dam caused by the natural make-up of the throat/neck bones and muscles. In normal swallowing, the waterfall liquid collects and pools for very smallest amount of time (we're talking miliseconds) before the swallowing reflex kicks in and the liquid is forced into the esophagus. Adele's swallowing reflex is delayed (she gets the lazy reflex gene from me, I'm sure), which means that the liquid collects TOO much (because it's still flowing in, remember) and it actually runs over that "dam". There are only two places the over flow can go: into her esophagus or into her windpipe. Unfortunately, too often it is going into the windpipe, which is what they call penetration. (I could actually SEE this happening during the study. It was pretty hard to miss.) As you can imagine, this is very dangerous. The OT said that when she reviewed the film in slow-mo, she actually saw the liquid touch the vocal cords. The point where penetration becomes aspiration (when the liquid actually goes INTO the lungs) is when it goes past the vocal cords, so Adele missed aspirating by thismuch. Needless to say, that's not a chance we can take. So, basically, by thickening the liquid we slow it down just enough to give her reflex time to catch up and swallow before it overflows.
You may be asking yourself, "Self, is this a muscle tone/strength issue? Is it just a matter of her building up the tone in that area?" Well, not exactly. Since it's a reflex, it's a brain, or more precisely, spinal cord, issue. The neurons just aren't firing fast enough to send the message to swallow sooner. Could it be a lingering side-effect of her prematurity? Possibly. Probably. Is there a chance that reflex will quicken over time? Probably. Possibly. Since she doesn't have any other spinal issues, such as cerebral palsy, it's quite possible she'll just outgrow it. But there's also the possibility that she won't, and this is just the way she's made. That's kind of a yucky thought, but definitely not the end of the world. And since all of her motor skills/development are completely on track, we have no reason to believe this condition should linger. Still, I say, if this is the worst prematurity side-effect we have to deal with, well, then we have it pretty dang easy.
So that's the story. More than you ever wanted to know, probably! On the bright side, Adele was good as gold the whole day, she ate when she needed to, even the nasty barium, didn't fuss or fight--she was her usual charming, smiley self. She's learned to wave, so she was more than happy to show off her new skill to anyone who spoke to her. Such a sweetie! Can't ask for a better kid, that's for sure!
Okay, now for REAL I'm off to clean and prep. Enough fiddling around! I will be sure to take lots of pictures, so look for those next week.
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