Don't we all know that one?!?
I was on the phone, again, with our insurance company this morning and I think I may have unearthed a new passion.
The "rules" really don't apply to NICU babies and special needs kiddos. Exclusions bite. I HATE getting transferred to a different customer service rep everytime I call. Hear me out, I'm not really here to bellyache today. I just had an epiphany after today's conversation with the insurance company.
There really isn't - nor should there be - a "one size fits all" kind of rule for insurance coverage. I think there should be exceptions noted on a case-by-case basis. One thing that our case manager said to me today really struck a chord. She said, "It's not that we discriminate against NICU babies, that just isn't covered."
And for the first time EVER in my life, I felt like my son was being discriminated against. Folks, I'm a girl who has two majors in agriculture, a girl who grew up in the construction business and I talk with a sweet, Southern twang. I've certainly had plenty of opportunities to feel like the underdog. But it wasn't until today that I felt like there was a wrong that needs to be righted. That conversation made me want to change the rules for the millions and millions of babies who are born premature and who don't fit into nice, little neat insurance categories.
I'm not really sure how to take on the beast, but I'll figure out a way. I recognize that Luke's challenges and insurance headaches are a small coin in the bucket compared to millions of other babies. So, if I feel like beating my head against the wall, I know those mommas do too.
Stay tuned for the "kicking hineys and taking names" storyline. I just bet it's gonna be good. They messed with the wrong momma :)
Thursday, March 31, 2011
Wednesday, March 30, 2011
2 Steps Forward, 10 Steps Back
I just don't have the top ten in me today. This week has been awesome and lousy.
AWESOME in that Luke "sortof" graduated from physical therapy. He's walking, squatting and pushing himself to stand on his own, without help from another person or object. We head to the pediatric orthopedist next week and find out a verdict on leg hardware. We are putting his PT on hold because of the "lousy" below.
AWESOME in that last night I was able to briefly share Luke's story and the amazing impact Hand to Hold has had on our family to a crowd of about 125 people, all directly affected by prematurity or infant loss. It was humbling and empowering to be among a group of so many fine people. And, after our setbacks this week, I found I really needed to be in the company of people who understood our struggles, because we all have them.
AWESOME in that I got to take homemade snickerdoodles up to Will's class on Monday and sing "Happy Birthday" to him, along with his classmates. When they found out I brought my famous cookies, they all cheered and Will even gave me a hug. In front of his friends, no less.
AWESOME in that we do NOT owe the government money this year!
But all those awesome's don't make up for this one lousy.
LOUSY in that Luke has officially given up all food. Every last stinking bite. No table food, no goldfish, no yogurt, nada. Zip. Zilch. The only thing he's "eating" is his supplement and probiotics, which he's drinking. Everytime we try giving him something to eat, if in fact he does actually put it in his mouth, he throws it right back up. I'm not talking a little gag and spitting it out. Nope. This is full blown, all over himself, the highchair and out his nose kind of mess. Just two days ago, he's started gagging just at the sight of food.
It pretty much sucks.
Our state-funded therapist is good, she just can't come out to the house often enough. Four times a month isn't going to cut it anymore. As fate would have it, we were at physical therapy on Tuesday morning when I shared our latest struggles with eating. Folks, I have been crying at every meal. Every one. It is excruciating and I hate every minute of seeing Luke struggle. So, when the therapists deemed our situation "emergent" I teared up right then and there. They called the occupational therapist (OT) who is a super fine Aggie and she rearranged some patients so Luke could be evaluated this morning.
It was empowering and eye-opening and disheartening, all in the same breath. Empowering because I finally feel like I have someone who can really help us. Ms. Lori is my new hero. Luke's first official appointment is this Friday. Let the bi-weekly therapies begin. Again. Eye-opening to read about where we are and where we need to be. We have some serious work to do. Disheartening because I am kicking myself wishing I had never given Luke that damn Tamiflu a few weeks ago. That marked our serious decline and it's been rapid ever since. He has some serious oral aversions and sensory issues.
I know. I know. I can't live in the world of "what if's". This IS our reality. Now I know better and will probably be unwilling to give Luke any medication unless it's life threatening. His belly and antibiotics just don't jive.
So...we're still throwing up at every meal, but I am leaning into that reality and starting to accept it. Mealtimes are going to be messy. It's a good thing we gave up eating out for Lent, because we won't be doing it for a long time :)
Pray for us. This is going to be a long road.
AWESOME in that Luke "sortof" graduated from physical therapy. He's walking, squatting and pushing himself to stand on his own, without help from another person or object. We head to the pediatric orthopedist next week and find out a verdict on leg hardware. We are putting his PT on hold because of the "lousy" below.
AWESOME in that last night I was able to briefly share Luke's story and the amazing impact Hand to Hold has had on our family to a crowd of about 125 people, all directly affected by prematurity or infant loss. It was humbling and empowering to be among a group of so many fine people. And, after our setbacks this week, I found I really needed to be in the company of people who understood our struggles, because we all have them.
AWESOME in that I got to take homemade snickerdoodles up to Will's class on Monday and sing "Happy Birthday" to him, along with his classmates. When they found out I brought my famous cookies, they all cheered and Will even gave me a hug. In front of his friends, no less.
AWESOME in that we do NOT owe the government money this year!
But all those awesome's don't make up for this one lousy.
LOUSY in that Luke has officially given up all food. Every last stinking bite. No table food, no goldfish, no yogurt, nada. Zip. Zilch. The only thing he's "eating" is his supplement and probiotics, which he's drinking. Everytime we try giving him something to eat, if in fact he does actually put it in his mouth, he throws it right back up. I'm not talking a little gag and spitting it out. Nope. This is full blown, all over himself, the highchair and out his nose kind of mess. Just two days ago, he's started gagging just at the sight of food.
It pretty much sucks.
Our state-funded therapist is good, she just can't come out to the house often enough. Four times a month isn't going to cut it anymore. As fate would have it, we were at physical therapy on Tuesday morning when I shared our latest struggles with eating. Folks, I have been crying at every meal. Every one. It is excruciating and I hate every minute of seeing Luke struggle. So, when the therapists deemed our situation "emergent" I teared up right then and there. They called the occupational therapist (OT) who is a super fine Aggie and she rearranged some patients so Luke could be evaluated this morning.
It was empowering and eye-opening and disheartening, all in the same breath. Empowering because I finally feel like I have someone who can really help us. Ms. Lori is my new hero. Luke's first official appointment is this Friday. Let the bi-weekly therapies begin. Again. Eye-opening to read about where we are and where we need to be. We have some serious work to do. Disheartening because I am kicking myself wishing I had never given Luke that damn Tamiflu a few weeks ago. That marked our serious decline and it's been rapid ever since. He has some serious oral aversions and sensory issues.
I know. I know. I can't live in the world of "what if's". This IS our reality. Now I know better and will probably be unwilling to give Luke any medication unless it's life threatening. His belly and antibiotics just don't jive.
So...we're still throwing up at every meal, but I am leaning into that reality and starting to accept it. Mealtimes are going to be messy. It's a good thing we gave up eating out for Lent, because we won't be doing it for a long time :)
Pray for us. This is going to be a long road.
Tuesday, March 29, 2011
Oh, I love you San Antonio
The last few trips to San Antone have been just Scott and I. I think Luke joined us on the last one about 8 months ago. It's been quite a while since we've loaded up the crew and headed south for an overnighter.
We left on Friday afternoon, just after golf camp concluded. About a half hour into the trip, we realized Luke needed a diaper change. No sooner had we taken him out of his seat, he threw up All. Over. The. Van. That was just a whole bucketful of fun. We got him cleaned up, changed and back in his seat. Then, we did the best we could with the van. Scott and I looked at each other with a "now what?" look - should we abandon ship or keep going? He just shrugged his shoulders and said, "Life's about living." So, we put the van in "D" and kept cruising.
I called my college roomie, Erin, and asked if we could borrow her washing machine before we met her and the fam for dinner. That's what friends are for, right? After depositing our 50-cents at her doorstep and a nice batch of nasty, we trekked down to our hotel on the Riverwalk. Remind me again to think twice before going to SA during spring break. It was crazy nuts! But, our hotel room was fab. It was a suite with a ginormous bathroom and two TVs, so we were able to space everybody a good arm's length apart. Thanks to my dad for scoring us such a great deal!
The kids were in Disneyland. They must've asked 10,000 questions about the room. Granted, it has been a long time since we stayed in a hotel. A good two and a half years. Trust me, when you have five kids, you don't just trip over yourself booking an overnight room for seven. After the 10,001 question, I decided to give the grand tour. It went something like this...
K: This is the front door. Do NOT open it even if someone knocks. Do NOT go out unless you are with a parent. The brick on either side is, in fact, real, so please do not scratch on it like you did ours at home.
JP: Can we lock it?
ALG: What's that tiny hole for?
K: This HUGE mirror to the right of the door is for looking at. Do not run behind it or trying punching it. It will break.
ALG: Can I dance in front of it?
C: Oh, yeah! Let's dance.
K: Focus people. This couch is a sleeper couch. It is awesome because it turns into a bed. But, if you jump on it enough it will break and then you have to sleep on the floor.
W: Ew, gross, the floor.
JP: Ha, ha. That's funny.
K: This TV is the kids' TV. It has all the same channels as home, but they are not the same numbers. I do not know what they are. That's why there's a remote. Use it. These are drawers on the dresser. Please do not stow your favorite clothes/socks/toy/animal/random trinket because you will forget it's there. Trust me.
W: Mom, look at all this food and water on the counter!!
K: Will, unless you value the money in your bank account, do not touch or eat that food. It costs more than you do. I've taken a picture and so has the hotel. If you eat anything they will know and they will charge us a bazillion dollars.
JP: {in shock} Really? {shrugs shoulders} Mom knows everything so you better not touch it.
K: This is the bathroom. All I ask is that you please refrain from peeing on the floor.
W/JP/ALG/C: {laughing hysterically}
All Luke did was stare out the window and get caught in the drapes :)
We finally finished the nickel tour, popped Luke in the stroller and took a walk along the River. I am always reminded of how much I love the Riverwalk after taking a stroll along its banks. Of course, I'm always reminded that one of my kids is likely to fall in at any given moment. We certainly kept a close eye on John Paul. It was great fun to see it on Friday, March 18, because one day earlier the City had dyed the river green in celebration of St. Patrick's Day. How fun is that?
After a lovely dinner with our college friends, the Blake's (how did we NOT get a picture of all of us??), we headed back to the hotel for some "sleep." Really that is an oxymoron. Scott and I put everyone to bed one at a time, and then scored two lovely chairs just steps from our room, overlooking the lobby area and enjoyed that $5 cerveza. Worth every penny. At 3am, Luke decided to play until 5am. It was nothing short of a miracle that the other four kids slept through that party and managed to get a decent night's rest.
After checking out of the hotel on Saturday morning, the Alamo was first on our 'to-do' list. Oh man. We totally forgot how nutso downtown SA is during the break. The line was ridiculously long, so we just snapped a few quick photos and grabbed some lunch. I promised Will we would return on a normal day and do the tour up right. In fourth and seventh grades, Texas History is taught and so this is a big year for him. In all honestly, he probably knows more than I do about our state this year!
When we planned the trip, we completely spaced that it would be Lent. We traditionally give up eating out for these 40 days. That didn't dawn on us until we were actually IN San Antonio. Sigh. Well, technically, we only ate out twice. And, we thoroughly enjoyed both meals. One at Tomatillos and the other at our infamous, Dough. During the Dough lunch, we learned that Guy Fieri from The Food Network, had been on-site just two weeks prior to film his show, "Diners, Drive-Ins and Dives". Our sweet little hole in the wall is about to be a hub of business. For the record, we found it first. So there FN. The show airs April 11 if you want to DVR it.
We made it back in one piece with five very tired kids and two even more tired parents. But, it was a welcome reprieve to get out of Austin. We haven't done that much as a family and it felt good to be free from the same 'ol, same 'ol.
Funny story coming Friday about Luke sporting his first toga.
We left on Friday afternoon, just after golf camp concluded. About a half hour into the trip, we realized Luke needed a diaper change. No sooner had we taken him out of his seat, he threw up All. Over. The. Van. That was just a whole bucketful of fun. We got him cleaned up, changed and back in his seat. Then, we did the best we could with the van. Scott and I looked at each other with a "now what?" look - should we abandon ship or keep going? He just shrugged his shoulders and said, "Life's about living." So, we put the van in "D" and kept cruising.
I called my college roomie, Erin, and asked if we could borrow her washing machine before we met her and the fam for dinner. That's what friends are for, right? After depositing our 50-cents at her doorstep and a nice batch of nasty, we trekked down to our hotel on the Riverwalk. Remind me again to think twice before going to SA during spring break. It was crazy nuts! But, our hotel room was fab. It was a suite with a ginormous bathroom and two TVs, so we were able to space everybody a good arm's length apart. Thanks to my dad for scoring us such a great deal!
The kids were in Disneyland. They must've asked 10,000 questions about the room. Granted, it has been a long time since we stayed in a hotel. A good two and a half years. Trust me, when you have five kids, you don't just trip over yourself booking an overnight room for seven. After the 10,001 question, I decided to give the grand tour. It went something like this...
K: This is the front door. Do NOT open it even if someone knocks. Do NOT go out unless you are with a parent. The brick on either side is, in fact, real, so please do not scratch on it like you did ours at home.
JP: Can we lock it?
ALG: What's that tiny hole for?
K: This HUGE mirror to the right of the door is for looking at. Do not run behind it or trying punching it. It will break.
ALG: Can I dance in front of it?
C: Oh, yeah! Let's dance.
K: Focus people. This couch is a sleeper couch. It is awesome because it turns into a bed. But, if you jump on it enough it will break and then you have to sleep on the floor.
W: Ew, gross, the floor.
JP: Ha, ha. That's funny.
K: This TV is the kids' TV. It has all the same channels as home, but they are not the same numbers. I do not know what they are. That's why there's a remote. Use it. These are drawers on the dresser. Please do not stow your favorite clothes/socks/toy/animal/random trinket because you will forget it's there. Trust me.
W: Mom, look at all this food and water on the counter!!
K: Will, unless you value the money in your bank account, do not touch or eat that food. It costs more than you do. I've taken a picture and so has the hotel. If you eat anything they will know and they will charge us a bazillion dollars.
JP: {in shock} Really? {shrugs shoulders} Mom knows everything so you better not touch it.
K: This is the bathroom. All I ask is that you please refrain from peeing on the floor.
W/JP/ALG/C: {laughing hysterically}
All Luke did was stare out the window and get caught in the drapes :)
We finally finished the nickel tour, popped Luke in the stroller and took a walk along the River. I am always reminded of how much I love the Riverwalk after taking a stroll along its banks. Of course, I'm always reminded that one of my kids is likely to fall in at any given moment. We certainly kept a close eye on John Paul. It was great fun to see it on Friday, March 18, because one day earlier the City had dyed the river green in celebration of St. Patrick's Day. How fun is that?
After a lovely dinner with our college friends, the Blake's (how did we NOT get a picture of all of us??), we headed back to the hotel for some "sleep." Really that is an oxymoron. Scott and I put everyone to bed one at a time, and then scored two lovely chairs just steps from our room, overlooking the lobby area and enjoyed that $5 cerveza. Worth every penny. At 3am, Luke decided to play until 5am. It was nothing short of a miracle that the other four kids slept through that party and managed to get a decent night's rest.
After checking out of the hotel on Saturday morning, the Alamo was first on our 'to-do' list. Oh man. We totally forgot how nutso downtown SA is during the break. The line was ridiculously long, so we just snapped a few quick photos and grabbed some lunch. I promised Will we would return on a normal day and do the tour up right. In fourth and seventh grades, Texas History is taught and so this is a big year for him. In all honestly, he probably knows more than I do about our state this year!
When we planned the trip, we completely spaced that it would be Lent. We traditionally give up eating out for these 40 days. That didn't dawn on us until we were actually IN San Antonio. Sigh. Well, technically, we only ate out twice. And, we thoroughly enjoyed both meals. One at Tomatillos and the other at our infamous, Dough. During the Dough lunch, we learned that Guy Fieri from The Food Network, had been on-site just two weeks prior to film his show, "Diners, Drive-Ins and Dives". Our sweet little hole in the wall is about to be a hub of business. For the record, we found it first. So there FN. The show airs April 11 if you want to DVR it.
We made it back in one piece with five very tired kids and two even more tired parents. But, it was a welcome reprieve to get out of Austin. We haven't done that much as a family and it felt good to be free from the same 'ol, same 'ol.
Funny story coming Friday about Luke sporting his first toga.
Monday, March 28, 2011
D.C. Sneak Peek
Look who's back! Will has been talking non-stop since they got home. When I can break away, I'll post more pictures and some sweet stories. Oh my, they had a blast!
Sunday, March 27, 2011
Top Ten: Happy 10th Birthday Will!
How did a decade of motherhood go by that quickly? If only the line at HEB would move as swiftly.
At exactly 4:56am ten years ago, Scott and I became parents for the first time. That just doesn't seem possible, you know, considering that we don't look a day over 25.
There are seriously so many things to love about Will. I'll do my best to fit it into a neat and tidy top ten. Here goes...
TOP TEN: THINGS I LOVE ABOUT MY BIGGEST BIG
1. He is so sensitive. Nearly four years ago, Scott and the oldest four were in a horrible car accident. I think it was before the blog's time, so I'll give you a quick recap. Scott had the day off and we planned a great family day—that is, until three other cars and an 18-wheeler rock truck reminded us that life is short. We'd need a diagram to explain it, but Scott and the four kids were struck by a car, who was hit by an 18-wheeler. The police officer on duty kept shaking his head, saying he couldn't believe everyone walked away with just bruises. Just after impact, Will jumped out of the carseat and ran straight to Clare's carseat to check on her. I love that he puts others first.
2. He is so thoughtful. Will always has a million questions and they are usually never easy to answer. I mean, we've talked about childbirth, Hooters, divorce, death and abortion here recently. It is amazing to me how my little boy is turning into a young man with each conversation.
3. He is a peacekeeper. Perhaps it's because he has clocked MANY an hour refereeing fights around here. Whatever the motive, he is a boy whom all his classmates admire. That makes me very proud.
4. He is loving. Just last weekend, he was down at a friend's house shooting hoops. I was heading to the greenhouse to pick up a few more flowers, when I stopped and told him I'd be right back. Without a second's hesitation, he stopped, ran over to the car and gave me a big kiss. In front of all his buddies. As a mom recently shared with me, "Don't ever forget that memory. Hold on to that one." Trust me, Suzanne, I already have that one banked in my reserve.
5. He is a reader. My favorite story about his love for reading was finding him in his closet, sound asleep, with the light on and a book about the saints in his hands. I mean, really. How can you get mad at that sweet scene?
6. He is a perfectionist. Poor thing, that's totally genetic. He has his books in a certain order, his shirts hung correctly in his closet and his backpack organized. Yet, this is also the kid who forgets to change his underwear everyday.
7. He loves sports. Especially the Colts and the Aggies. He cries everytime they lose. That's a lot of tears, folks. He studies the game and knows all the rules, all the players names and all the plays. I think Scott has finally found his partner in sports crime. Thank goodness, because I was doing a really poor job.
8. His laugh. When he gets really tickled, that is the best sound ever. Even better than baby giggles.
9. His love for legos, Harry Potter, Wii, playing outside with his friends and sneaking candy. Just last week I found some wrappers in his socks, to which he replied, "Man, Mom, you know ALL my secrets." Yep.
10. His quirks, his bad habits and his love for his siblings. Really, I love all things Will. Even the ones that drive me to drink that cabernet. I told Scott the other day that I'm going to be really bad in the "letting go" department. For now, we're just trying to squeeze every moment out of childhood that he will let us.
Some of my most favorite Will quotes:
"I want to be an altar server every weekend." When we asked him why (you know, because we were feeling all superior that we had done a really good job in the Catholic upbringing department), he replied, "Because it's quiet. I don't have to mess with all my brothers and sisters."
"When I am President someday, I will shut down all the Hooters."
"That dinner was lip smacking."
"Momma, you wearin' your ship-shops?"
"Oh, look it's the shiretruck."
"Dad, you goin' shishin'?"
Will had a bad habit of replacing the "f" sound with an "sh" sound. I miss that slip :(
And, a few of my favorite Will photos... you knew I wouldn't let you leave without seeing some of this, didn't ya? Ok,maybe more than a *few*. Guess I should've made a video. I'll get right on that.
Happy birthday, Will. I never knew it was possible to love your Dad more, that life could get any sweeter, that I could so instantly fall in love with another human being...until you arrived. Welcome to double digits!
At exactly 4:56am ten years ago, Scott and I became parents for the first time. That just doesn't seem possible, you know, considering that we don't look a day over 25.
There are seriously so many things to love about Will. I'll do my best to fit it into a neat and tidy top ten. Here goes...
TOP TEN: THINGS I LOVE ABOUT MY BIGGEST BIG
1. He is so sensitive. Nearly four years ago, Scott and the oldest four were in a horrible car accident. I think it was before the blog's time, so I'll give you a quick recap. Scott had the day off and we planned a great family day—that is, until three other cars and an 18-wheeler rock truck reminded us that life is short. We'd need a diagram to explain it, but Scott and the four kids were struck by a car, who was hit by an 18-wheeler. The police officer on duty kept shaking his head, saying he couldn't believe everyone walked away with just bruises. Just after impact, Will jumped out of the carseat and ran straight to Clare's carseat to check on her. I love that he puts others first.
2. He is so thoughtful. Will always has a million questions and they are usually never easy to answer. I mean, we've talked about childbirth, Hooters, divorce, death and abortion here recently. It is amazing to me how my little boy is turning into a young man with each conversation.
3. He is a peacekeeper. Perhaps it's because he has clocked MANY an hour refereeing fights around here. Whatever the motive, he is a boy whom all his classmates admire. That makes me very proud.
4. He is loving. Just last weekend, he was down at a friend's house shooting hoops. I was heading to the greenhouse to pick up a few more flowers, when I stopped and told him I'd be right back. Without a second's hesitation, he stopped, ran over to the car and gave me a big kiss. In front of all his buddies. As a mom recently shared with me, "Don't ever forget that memory. Hold on to that one." Trust me, Suzanne, I already have that one banked in my reserve.
5. He is a reader. My favorite story about his love for reading was finding him in his closet, sound asleep, with the light on and a book about the saints in his hands. I mean, really. How can you get mad at that sweet scene?
6. He is a perfectionist. Poor thing, that's totally genetic. He has his books in a certain order, his shirts hung correctly in his closet and his backpack organized. Yet, this is also the kid who forgets to change his underwear everyday.
7. He loves sports. Especially the Colts and the Aggies. He cries everytime they lose. That's a lot of tears, folks. He studies the game and knows all the rules, all the players names and all the plays. I think Scott has finally found his partner in sports crime. Thank goodness, because I was doing a really poor job.
8. His laugh. When he gets really tickled, that is the best sound ever. Even better than baby giggles.
9. His love for legos, Harry Potter, Wii, playing outside with his friends and sneaking candy. Just last week I found some wrappers in his socks, to which he replied, "Man, Mom, you know ALL my secrets." Yep.
10. His quirks, his bad habits and his love for his siblings. Really, I love all things Will. Even the ones that drive me to drink that cabernet. I told Scott the other day that I'm going to be really bad in the "letting go" department. For now, we're just trying to squeeze every moment out of childhood that he will let us.
Some of my most favorite Will quotes:
"I want to be an altar server every weekend." When we asked him why (you know, because we were feeling all superior that we had done a really good job in the Catholic upbringing department), he replied, "Because it's quiet. I don't have to mess with all my brothers and sisters."
"When I am President someday, I will shut down all the Hooters."
"That dinner was lip smacking."
"Momma, you wearin' your ship-shops?"
"Oh, look it's the shiretruck."
"Dad, you goin' shishin'?"
Will had a bad habit of replacing the "f" sound with an "sh" sound. I miss that slip :(
And, a few of my favorite Will photos... you knew I wouldn't let you leave without seeing some of this, didn't ya? Ok,maybe more than a *few*. Guess I should've made a video. I'll get right on that.
Happy birthday, Will. I never knew it was possible to love your Dad more, that life could get any sweeter, that I could so instantly fall in love with another human being...until you arrived. Welcome to double digits!
Friday, March 25, 2011
QOTW: March 25, 2011
"Wow, YOU did that Mom? That's really surprising. I didn't know you had it in you."
Will, in reference to me laying a few squares of sod on a dead patch in our yard. Gee, thanks buddy.
"Thanks K, I didn't know you were actually going to plant it."
Scott, again about the sod. Clearly my image is tainted.
"San Antonio sure seemed a lot more relaxing the last few times we were here."
Scott and I about our recent trip with all the fam. The last few trips we were solo mio.
"Are you sure it's ok with school?"
Will, wondering if it was legit that we were taking him out of school for two days for his 10yo trip. Yes, big man, it is a-ok. I don't think two missed days of fourth grade is going to derail you from being valedictorian someday. He IS our rule follower :)
"I only pee."
Clare is fascinated with all things bathroom. She's convinced that she only needs to go #1. Um...no. Sorry for the TMI. I guess you just had to hear her say it, complete with arm gestures and shoulder shrugging.
When we all yell, "Who wants ice cream?" Luke raises his hand. So. Stinkin. Cute. Oh, and NO, he doesn't want a bite, he just wants to raise his hand. Too bad, because according to my hips, that Blue Bell has some serious calories.
Clare: "Where is the sun?" (it was a cloudy day)
Me: "It's not up yet."
Clare: "Oh, it must've stayed up all night."
I seriously almost drove off the road from laughing so hard.
As you can tell from yesterday's post, I know two boys who are going to have a spectacular weekend. The rest of us can't wait to hear all about it. On Sunday, not only is it Will's birthday, but my dad's as well. It will be a fantastic celebration. Make it a great weekend.
Will, in reference to me laying a few squares of sod on a dead patch in our yard. Gee, thanks buddy.
"Thanks K, I didn't know you were actually going to plant it."
Scott, again about the sod. Clearly my image is tainted.
"San Antonio sure seemed a lot more relaxing the last few times we were here."
Scott and I about our recent trip with all the fam. The last few trips we were solo mio.
"Are you sure it's ok with school?"
Will, wondering if it was legit that we were taking him out of school for two days for his 10yo trip. Yes, big man, it is a-ok. I don't think two missed days of fourth grade is going to derail you from being valedictorian someday. He IS our rule follower :)
"I only pee."
Clare is fascinated with all things bathroom. She's convinced that she only needs to go #1. Um...no. Sorry for the TMI. I guess you just had to hear her say it, complete with arm gestures and shoulder shrugging.
When we all yell, "Who wants ice cream?" Luke raises his hand. So. Stinkin. Cute. Oh, and NO, he doesn't want a bite, he just wants to raise his hand. Too bad, because according to my hips, that Blue Bell has some serious calories.
Clare: "Where is the sun?" (it was a cloudy day)
Me: "It's not up yet."
Clare: "Oh, it must've stayed up all night."
I seriously almost drove off the road from laughing so hard.
As you can tell from yesterday's post, I know two boys who are going to have a spectacular weekend. The rest of us can't wait to hear all about it. On Sunday, not only is it Will's birthday, but my dad's as well. It will be a fantastic celebration. Make it a great weekend.
Thursday, March 24, 2011
The 10-Year-Old Trip
Several years ago, we were inspired to take our children on a 10-year-old trip. Two families, from completely different paths of life, do something similar. They are families we greatly admire - they are Catholic, they are faithful and they are focused on raising children with integrity. To the Aitchison and Thoman families, thank you for helping us start a really awesome tradition in our own family.
When Scott and I first started planning Will's 10-year-old trip (to be fair, it was like four years ago that we started dreaming and saving for this day!), I was reminded of my trip to Las Vegas on my 21st birthday with my grandfather and its many life lessons. That is definitely another blog post!
We have what the secular world would consider a large family. With five children under the age of 10, three of whom are enrolled in a Catholic school and a husband who works for a non-profit, we don’t have many “extras.” We don’t eat out often. The kids are allowed one extracurricular activity. We don’t vacation in Europe. Shoot most of our vacations are spent pretty close to home! We send the kids outside often and tell them to “get creative.” We don’t have credit card debt that can’t be paid off every month. We have a mortgage. We have one paid for and one almost paid for cars. There is no fancy high graduation trip in the works or a blowout Sweet 16 birthday party brewing. We live life intentionally, with purpose.
The 10-year-old trip only has two requirements: 1) you must travel on a plane to get to your destination and 2) you must choose only one parent to accompany you. It’s likely that this will be the only trip our children ever take with us on an airplane. We recognize that our children don’t get uninterrupted, one-on-one time with us all the time, and certainly not for days at a time. We also recognize that at age 10 we are still somewhat cool and we pray that the door of opportunity to engage in meaningful, heartfelt conversations is opened and strengthened during our time together. Will's middle school experience is just two short years away. He’s already lived more than half his life in our home. This trip is about spending precious time with a parent in a place that has significant meaning for that child.
Nothing about the way we live says “expected.” Just ask my children to show you their chore charts! I doubt any of our children will come home with a bag full of overpriced souvenirs. Rather, I pray they come home with a full heart, love and respect for their mom or dad, thankfulness for their Creator and more sweet memories than any bag could ever hold.
Washington, D.C. or bust :)
When Scott and I first started planning Will's 10-year-old trip (to be fair, it was like four years ago that we started dreaming and saving for this day!), I was reminded of my trip to Las Vegas on my 21st birthday with my grandfather and its many life lessons. That is definitely another blog post!
We have what the secular world would consider a large family. With five children under the age of 10, three of whom are enrolled in a Catholic school and a husband who works for a non-profit, we don’t have many “extras.” We don’t eat out often. The kids are allowed one extracurricular activity. We don’t vacation in Europe. Shoot most of our vacations are spent pretty close to home! We send the kids outside often and tell them to “get creative.” We don’t have credit card debt that can’t be paid off every month. We have a mortgage. We have one paid for and one almost paid for cars. There is no fancy high graduation trip in the works or a blowout Sweet 16 birthday party brewing. We live life intentionally, with purpose.
The 10-year-old trip only has two requirements: 1) you must travel on a plane to get to your destination and 2) you must choose only one parent to accompany you. It’s likely that this will be the only trip our children ever take with us on an airplane. We recognize that our children don’t get uninterrupted, one-on-one time with us all the time, and certainly not for days at a time. We also recognize that at age 10 we are still somewhat cool and we pray that the door of opportunity to engage in meaningful, heartfelt conversations is opened and strengthened during our time together. Will's middle school experience is just two short years away. He’s already lived more than half his life in our home. This trip is about spending precious time with a parent in a place that has significant meaning for that child.
Nothing about the way we live says “expected.” Just ask my children to show you their chore charts! I doubt any of our children will come home with a bag full of overpriced souvenirs. Rather, I pray they come home with a full heart, love and respect for their mom or dad, thankfulness for their Creator and more sweet memories than any bag could ever hold.
Washington, D.C. or bust :)
And...they're off!!
At exactly 4:40AM, my better half and my biggest big jumped on a jet plane to...
WASHINGTON, D.C. Baby!!
Will is officially celebrating his 10-year-old trip (birthday is Sunday) with his Dad. Oh my, so many fun memories await. I totally promise to blog and post a bazillion pictures next week when they get back. They have a White House tour, so who knows, maybe Will can tell President Obama to shut down all the Hooters. HA. HA.
We completely surprised Will last night at dinner. His reaction was so priceless. If I could be a stowaway on that plane, I would do it in a heartbeat. I have some great quotes tomorrow. Oh wee..
Blog post later today about "the trip" and what it all means.
WASHINGTON, D.C. Baby!!
Will is officially celebrating his 10-year-old trip (birthday is Sunday) with his Dad. Oh my, so many fun memories await. I totally promise to blog and post a bazillion pictures next week when they get back. They have a White House tour, so who knows, maybe Will can tell President Obama to shut down all the Hooters. HA. HA.
We completely surprised Will last night at dinner. His reaction was so priceless. If I could be a stowaway on that plane, I would do it in a heartbeat. I have some great quotes tomorrow. Oh wee..
Blog post later today about "the trip" and what it all means.
Wednesday, March 23, 2011
Guest Blogging and the Top Ten
Today, I'm guest blogging over at Catholic Mothers Online about my Lenten sacrifice. Very excited.
And, your top ten has been rescheduled for Sunday for a very important reason. My #1 son turns 10, T-E-N on Sunday and I'm reserving this week's top ten for him!! He has an exciting weekend ahead. More on THAT tomorrow.
Look at me all suspenseful.
And, your top ten has been rescheduled for Sunday for a very important reason. My #1 son turns 10, T-E-N on Sunday and I'm reserving this week's top ten for him!! He has an exciting weekend ahead. More on THAT tomorrow.
Look at me all suspenseful.
Tuesday, March 22, 2011
Luke Update 3.22.11
Here we are again. It's been a rollercoaster of emotions and milestones with Luke these past few months. I know it's been a while since I've given the "master" udpate, so here goes. For those new to the blog, click HERE for a quick rundown. For those that have been around a while, keep on readin'. Let's start with the biggies and most exciting news.
1. Luke is walking!! He mastered that skill just shy of his 17-month birthday and I totally broke into tears. He's been in twice weekly physical therapy since last September. We've been hard at work on many physical developmental milestones, mainly gross motor, and he has done remarkably well. In fact, this week, we moved from twice a week, to once weekly therapy. That was really fantastic news. For a kiddo who has had four surgeries, three to the belly and one to the spine, his core strength is worse than mine! We've learned how pivotal that is to his walking success.
2. Luke is gaining weight which means, we've put surgery on the BACK burner for a while. YES! In May we have Luke's final (I hope) visit with his pediatric surgeon, Dr. Meyer. Luke is drinking his supplement with no complaints and is gaining weight beautifully. We are so grateful that g-tube surgery has been pushed back in the corner for now.
3. Luke is catching up to his "age appropriate" milestones. He's starting to say a few words, point to things in books, give kisses, wave bye-bye. He's still below average in almost every major category, but the progress he's made in the past six months has been remarkable. I look forward to seeing what he accomplishes from now to age 2. Whoa. Age 2!
Our biggest challenges.
1. Even though Luke IS walking, he's not pulling his feet to center as we had hoped once he became weight bearing. Meaning, he sort of waddles like a duck when he walks, using the inside of his feet to push off, rather than doing the traditional heel-toe manuever. We are meeting with his pediatric orthopedist at the end of April and I strongly suspect he will be sporting some ankle and leg braces in the very near future. Not a fan of the hardware, but I know how key early intervention can be. Again, this might be something that we never forget, but he never remembers. Here's hoping.
2. Strengthening his core. We've come a long way, but still have a ways to go. Right now, we're doing baby sit ups with him, using balls and balance activities. John Paul has found his therapy niche. He is fantastic at doing this with Luke. God love that kid.
3. Eating. Yes, I know #2 above talked about how great his weight gain was progressing. But, he's drinking his calories, not eating them. In fact, Luke doesn't really know how to eat. He has once a week occupational therapy and we are seeing nominal progress. Just to give you a clear picture, Luke's table food intake in one day includes: 4 goldfish, two pinky-sized bites of cheese, 5-8 cheerios, 2 kernels of corn and 1/4 cup of yogurt. Spread over three meals and one snack. That's it. I hope that puts a picture on how frustrating and exhausting mealtime is with him. Sometimes we can get him to eat a few small bites of avocado or mashed potato. Sometimes, we can sneak in a small bite of chicken or sausage. Many times, though, when we push too much he throws up as an involuntary reflex. Luke's biggest challenge is that he doesn't know how to chew, so he "pockets" the food in his cheek, starts to gag because he doesn't know how to swallow, then he gets mad and throws everything off his tray. Quite honestly, I should've made this our number one challenge. It is a constant struggle. The day he eats an entire meal of table food, I know I will break down in tears and fall on my knees in thanksgiving. Someday. Some. Day.
4. And the remaining biggies are the "wait and see" surgeries. In September we will make a decision on his open heart surgery to correct his VSD (heart defect in the upper chamber) and in August we will assess how the fontanelle on the back of his head is closing. His neurosurgeon is giving us until age 3 for that to close before he closes it surgically. Clearly, we are hoping for a natural resolution to both, meaning that we are doing are darndest to pray them closed. We'll just have to wait and see :)
5. In May, we meet with the long put-off pediatric geneticist. I'm not really sure Dr. I will be able to tell us anything. Perhaps there's a "syndrome" that captures all of Luke's quirks, but I suspect it's called: CL. Crappy Luck. But, at least we can check it off the to-do list and I can get all the specialists off my back for not calling earlier.
So. That's alot of progress and alot of unknowns. To be really fair, there are many other unknowns with his kidneys, spine and blood levels. Those probably won't make themselves known until Luke hits puberty. I've got some time to ease into that phase :) My apologies for the information overload. More than anything, I needed to write it all down and get my head around it. Someday, I'll be glad I wrote this all down to remember.
Luke, buddy, we love you to the moon and back. Everyday you remind us that your life is a miracle.
Monday, March 21, 2011
Finding the Light
Some days, especially lately, we are starting to see glimpses of light at the end of a very long tunnel. In tomorrow's post, I'll explain what the glimpses of light are and what challenges still lie ahead.
But, today I'm just really, supremely perturbed with medical bills. That, and absolutely exhausted. You see, I've been poring over bills, EOBs (explanation of benefits), our insurance coverage and what IS and what ISN'T covered, our bank statements - all of it - for So. Dang. Long. Just when I think we've finally hit the end, I get two bills in five days that have way, way too many zeros at the end. With eight specialists, five surgeries, a bazillion therapy appointments, follow-up visits and hospital stays, it was bound to catch up to me.
I am so frustrated. And so tired. This is the really, really horrible reality of a having a child with special needs. The scarier part is I wonder how long it will last. The even scarier part is nobody knows. I recognize and rarely forget that there is mom crying in her office today not because of the mounting medical bills, but because she has no baby to kiss. No baby to love. No baby to play peek-a-boo and read books to every evening. That is a reality I need to be reminded of on this day.
Yes, I'll fight the good fight. I've made huge headway on my medical billing knowledge, I've hung up on creditors, gone through boxes of Kleenex, negotiated payment terms, talked to supervisors and held out for what I know is right. It's just that some days are hard.
Today is that day.
But, today I'm just really, supremely perturbed with medical bills. That, and absolutely exhausted. You see, I've been poring over bills, EOBs (explanation of benefits), our insurance coverage and what IS and what ISN'T covered, our bank statements - all of it - for So. Dang. Long. Just when I think we've finally hit the end, I get two bills in five days that have way, way too many zeros at the end. With eight specialists, five surgeries, a bazillion therapy appointments, follow-up visits and hospital stays, it was bound to catch up to me.
I am so frustrated. And so tired. This is the really, really horrible reality of a having a child with special needs. The scarier part is I wonder how long it will last. The even scarier part is nobody knows. I recognize and rarely forget that there is mom crying in her office today not because of the mounting medical bills, but because she has no baby to kiss. No baby to love. No baby to play peek-a-boo and read books to every evening. That is a reality I need to be reminded of on this day.
Yes, I'll fight the good fight. I've made huge headway on my medical billing knowledge, I've hung up on creditors, gone through boxes of Kleenex, negotiated payment terms, talked to supervisors and held out for what I know is right. It's just that some days are hard.
Today is that day.
Golf Camp
Last week, the "bigs" enjoyed Golf Camp down in South Austin. We've done several of the summer camps with the boys and they've always enjoyed it. This year, Anna-Laura was old enough to join in the fun. There are many reasons I love Lonny's camps, but most importantly, I love that he teaches them life skills, in addition to the game of golf.
At the end of the week they earned their beloved medals. Truly, they earned them. Anna-Laura is learning how to address the ball and proper course etiquette. John Paul is learning control in his swing (shocking, I know) and Will is perfecting his swing. As Coach Lonny said, "Will had the best balance in the camp. He's going to make a fine young golfer."
Dad, Papa and Uncle Daniel are surely proud of that statement. I'm pretty sure Will knocked it about 130 yards on his first drive. I guess momma needs to start taking lessons. Scott's got his foursome! I was equally proud of how much improvement I saw in John Paul and how much fun ALG was having. We're already looking forward to camp this summer.
At the end of the week they earned their beloved medals. Truly, they earned them. Anna-Laura is learning how to address the ball and proper course etiquette. John Paul is learning control in his swing (shocking, I know) and Will is perfecting his swing. As Coach Lonny said, "Will had the best balance in the camp. He's going to make a fine young golfer."
Dad, Papa and Uncle Daniel are surely proud of that statement. I'm pretty sure Will knocked it about 130 yards on his first drive. I guess momma needs to start taking lessons. Scott's got his foursome! I was equally proud of how much improvement I saw in John Paul and how much fun ALG was having. We're already looking forward to camp this summer.
Friday, March 18, 2011
QOTW: March 18, 2011
LUKE IS 18 MONTHS OLD TODAY! Wow, we have come a long way. Next week, after we visit his gastro doctor, I'll give you the full report and a big update. With pictures. It's been a while.
"That dinner looks lip smacking."
Will, after strolling through the kitchen one night. Who knew homemade calzones would be so popular?
"We don't have to practice those (respect and courtesy) at home, only at golf camp."
ALG, oh my.
To which Will replied, "Oh YES we do Sisty." So there.
"You know..."
The beginning of all of Clare's sentences these days. So cute.
Make it a fantastic weekend. We have lots of fun things in store. Blog, next week, deets. Until then, enjoy your spring break!
"That dinner looks lip smacking."
Will, after strolling through the kitchen one night. Who knew homemade calzones would be so popular?
"We don't have to practice those (respect and courtesy) at home, only at golf camp."
ALG, oh my.
To which Will replied, "Oh YES we do Sisty." So there.
"You know..."
The beginning of all of Clare's sentences these days. So cute.
Make it a fantastic weekend. We have lots of fun things in store. Blog, next week, deets. Until then, enjoy your spring break!
Thursday, March 17, 2011
NICU Parents Rock
If YOU are a NICU parent, or you KNOW of one, do me a favor and consider passing along this 4-1-1. Many of you know just how much Hand to Hold helped Scott and I on our steep learning curve about Luke and all things NICU. Invaluable doesn't really sum up the support we received. Our mentor, Kelli, is the founder of H2H and I consider her a very dear friend.
I mean, really. How many people can you call up in a mall parking lot, blubbering about the latest medical challenge and not have to explain everything you just said? Kelli just knows. And that is worth a bazillion buckaroos (probably more) in my book.
If you don't live in Austin, send along the web link (click on it above). That website is a wealth of information, resources and people that just "get it." I love how one woman's passion has ignited a whole population of mothers I never knew existed. That is empowering. That is awesome. That is of God.
See you at the reception!
I mean, really. How many people can you call up in a mall parking lot, blubbering about the latest medical challenge and not have to explain everything you just said? Kelli just knows. And that is worth a bazillion buckaroos (probably more) in my book.
If you don't live in Austin, send along the web link (click on it above). That website is a wealth of information, resources and people that just "get it." I love how one woman's passion has ignited a whole population of mothers I never knew existed. That is empowering. That is awesome. That is of God.
See you at the reception!
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