Today is your first birthday! I've been thinking about this day last year and how wonderful it was to meet you for the first time after praying and wishing for you so long. I remember the doctors saying they could barely deliver you because you were grabbing onto surgical tools and your cord and anything you could find to put up a fight! Your first few seconds were a great indication of your personality, dear.
I have cherished getting to know you this year. You've been the baby doll I've dressed up. We have loved showing you off to family and friends and strangers. Sometimes you're very serious and so determined, and I think you are stronger-willed than I am. In fact, right now you are in bed beside me with Daddy and will. not. give up and go to sleep already! You have been trying to catch up to your big brother since you first saw him. You were practicing standing on our laps by 3 weeks old, and you were so focused on kicking and rolling and whatever it took to get you mobile. You did it! You're a walking machine now, and you're so cute doing it!
I'd always wanted a daughter, and I've had so much fun with you already and look forward to all those special mother-daughter moments. It's humbling for me to think that you are going to learn to be a wife, mother, and woman by watching me. I'll do my best to set a good example for you.
Happy birthday, baby girl. I love you very much.
Saturday, July 31, 2010
Wednesday, July 28, 2010
Team Nate the Great!
The Spina Bifida Association of Kentucky is having its second annual Stroll & Roll on Sept. 18, and Team Nate the Great is getting ready! Last year our team consisted of me, Nate dressed in his Thomas costume, and 3 month old Georgia, who slept through the whole thing, but we raised $450 for SBAK! This year my goal is to raise $1,000 and have some family and friends join us.
Now that I work at SBAK, I see even better all the good things we do for families! We have playgroups where the kids can play in a safe and accessible space and motivate each other, but more importantly the parents are sharing ideas and supporting each other. We are having classes about how to get a Medicaid Waiver (very important for us peeps with enormous medical bills), how to get kids socially continent, and other important topics in the SB world. We have a financial assistance fund that helps pay medical bills, buy equipment, make homes more accessible, and send people to the SBA National Conference. We have fun social events for people of all ages with SB and their families. And we talk one on one with parents and individuals with SB to help them work through challenges, find resources, and empower them. All that with a staff of three and a small budget. So it's a great cause, and your contribution really makes a difference.
All you have to do is go to our fundraising page (secure and easy to use), and make whatever donation you want. Even if it's just $5, I really appreciate it. And if you're free Sept. 18, come be a part of Team Nate the Great!!!!!
Team Nate the Great Fundraising Page
Now that I work at SBAK, I see even better all the good things we do for families! We have playgroups where the kids can play in a safe and accessible space and motivate each other, but more importantly the parents are sharing ideas and supporting each other. We are having classes about how to get a Medicaid Waiver (very important for us peeps with enormous medical bills), how to get kids socially continent, and other important topics in the SB world. We have a financial assistance fund that helps pay medical bills, buy equipment, make homes more accessible, and send people to the SBA National Conference. We have fun social events for people of all ages with SB and their families. And we talk one on one with parents and individuals with SB to help them work through challenges, find resources, and empower them. All that with a staff of three and a small budget. So it's a great cause, and your contribution really makes a difference.
All you have to do is go to our fundraising page (secure and easy to use), and make whatever donation you want. Even if it's just $5, I really appreciate it. And if you're free Sept. 18, come be a part of Team Nate the Great!!!!!
Team Nate the Great Fundraising Page
What's going on besides birthdays ....
Because we are doing other things besides partying here! :)
For one thing, I'm so proud of our new porch! I've been scared to death of someone (especially a little someone) falling off our porch ever since we moved in. GrandBob came to help Blake put a railing up on the porch, and Memaw brought pretty hanging baskets! I bought an outdoor loveseat on clearance (I NEVER catch things at the right time of year to get a good price, so I was so excited about this) and a new doormat, and it's like a new house!
Georgia is walking all over the place now. When we walk down the street and back (the cul de sac is about 10 houses down), she walks on her own most, if not all, the way! She can now crawl up steps too--look out! I have two top of the line baby gates in the garage waiting for a spare minute for us to install them. :) Sometimes I find myself carrying 42 pound Nate up the steps, and I just follow Georgia crawling up like a little speed demon.
Today I went to Nate's PT appointment for the first time since I started work back in April! It has been so hard not being at his therapy appointments, especially since I had missed maybe 3 therapy appointments his whole life before that. Partly because of my need for control :) but I also love seeing his progress and knowing what we need to work on at home. Blake takes him now, and he tells me what they did and what we need to work on, but dads just don't get all the details, ya know. I'm glad I went because the PT showed me some new exercises to do at home, and we talked a lot about his new braces we've ordered. Nate wears very short braces called SMO's. They come up around his ankle and stick just out of his shoe. Well, his new braces will come up a little higher. They aren't quite as high as AFOs (for those who know what I'm talking about), maybe about mid-calf or just below that, with a strap around the shin. The goal is to get his knee a little straighter so he doesn't crouch at all (that's very bad for the knees). I'm not totally thrilled, because higher bracing means immobilizing his ankle, and I think we should keep whatever muscles he has moving instead of immobilizing them. But we'll see what happens--maybe he'll feel a lot more stable in them and walk even better. But whatever the scenario, I can hardly muster a complaint because he's walking with very low braces regardless.
On to a couple cute stories...
Granna and Pop got Nate and Georgia a fish tank for their birthday! So far it's still in the box and we need to go pick out fish. Alisa asked Nate what kind of fish he wanted, and he said, "A shark, a whale, a fish, a fish, and a fish."
Nate has been interested in playing hide and seek. He goes to the back door and hides his eyes and counts to 10 and then comes to find Daddy. Well daddy is usually on the couch or laying in the floor watching TV, so it's not difficult! Last week I told Blake to actually hide, and it made the game more interesting! Nate laughed and laughed, but he still didn't quite get the game. He wanted both of them to hide their eyes and count together then find each other (hmm). Then once Blake was counting while Nate hid in the playroom, and Blake was just playing along looking under pillows and behind curtains saying, "Where'd Nate go?" and Nate ran out of the playroom yelling, "I'M IN HERE!!!!!"
For one thing, I'm so proud of our new porch! I've been scared to death of someone (especially a little someone) falling off our porch ever since we moved in. GrandBob came to help Blake put a railing up on the porch, and Memaw brought pretty hanging baskets! I bought an outdoor loveseat on clearance (I NEVER catch things at the right time of year to get a good price, so I was so excited about this) and a new doormat, and it's like a new house!
Here are two somebodies unhappy with me for not taking them outside while I took pictures. :)
Georgia is walking all over the place now. When we walk down the street and back (the cul de sac is about 10 houses down), she walks on her own most, if not all, the way! She can now crawl up steps too--look out! I have two top of the line baby gates in the garage waiting for a spare minute for us to install them. :) Sometimes I find myself carrying 42 pound Nate up the steps, and I just follow Georgia crawling up like a little speed demon.
Today I went to Nate's PT appointment for the first time since I started work back in April! It has been so hard not being at his therapy appointments, especially since I had missed maybe 3 therapy appointments his whole life before that. Partly because of my need for control :) but I also love seeing his progress and knowing what we need to work on at home. Blake takes him now, and he tells me what they did and what we need to work on, but dads just don't get all the details, ya know. I'm glad I went because the PT showed me some new exercises to do at home, and we talked a lot about his new braces we've ordered. Nate wears very short braces called SMO's. They come up around his ankle and stick just out of his shoe. Well, his new braces will come up a little higher. They aren't quite as high as AFOs (for those who know what I'm talking about), maybe about mid-calf or just below that, with a strap around the shin. The goal is to get his knee a little straighter so he doesn't crouch at all (that's very bad for the knees). I'm not totally thrilled, because higher bracing means immobilizing his ankle, and I think we should keep whatever muscles he has moving instead of immobilizing them. But we'll see what happens--maybe he'll feel a lot more stable in them and walk even better. But whatever the scenario, I can hardly muster a complaint because he's walking with very low braces regardless.
On to a couple cute stories...
Granna and Pop got Nate and Georgia a fish tank for their birthday! So far it's still in the box and we need to go pick out fish. Alisa asked Nate what kind of fish he wanted, and he said, "A shark, a whale, a fish, a fish, and a fish."
Nate has been interested in playing hide and seek. He goes to the back door and hides his eyes and counts to 10 and then comes to find Daddy. Well daddy is usually on the couch or laying in the floor watching TV, so it's not difficult! Last week I told Blake to actually hide, and it made the game more interesting! Nate laughed and laughed, but he still didn't quite get the game. He wanted both of them to hide their eyes and count together then find each other (hmm). Then once Blake was counting while Nate hid in the playroom, and Blake was just playing along looking under pillows and behind curtains saying, "Where'd Nate go?" and Nate ran out of the playroom yelling, "I'M IN HERE!!!!!"
A two month celebration
We've always celebrated Nate's birthday for at least a month, with visits to various grandparents, or trips, or dinners. We just make it a big deal, and Nate starts thinking everyday is his birthday! Well, add in Georgia's birthday one month later, and it's the summer of birthday celebrations. We had a Day Out With Thomas, a trip to Cincinnati, a birthday family dinner, an ice cream outing, birthday pictures, a party, and now we'll do something special on Georgia's actual birthday on Saturday! I wish people celebrated my birthday like that! :)
I decided to spend a small fortune at the Picture People for their birthday photos, since it's Georgia's first and they always do such a great job. If you've ever taken small children to get their photos taken, you know it's stressful and exhausting, but the results are priceless! This time I was fortunate to have Alisa go with me to help wrangle the kids and keep them distracted during the arduous process of deciding which of the thousand awesome pictures to order! Nate went first, and although he typically does his big fake cheese or doesn't smile at all, I was pleasantly shocked that he was a little model! He smiled so naturally, and posed! It was hilarious and impressive. Georgia, on the other hand, was a little pistol and didn't do anything we wanted her to. It seems like kids go through stages of what they think a smile is. Well, right now she thinks she's smiling when she has her mouth wide open! Of course she kept running off the backdrop and being generally difficult. I had gone to a lot of trouble to stop and get some cupcakes on the way to work (even asked for them to be decorated special with the color icing I wanted) and kept them upright and intact all day at work and on the way to the studio, and don't you know this little stinker wouldn't eat the cupcake? She stuck her hand in it and looked at her hand and cried. She wouldn't lick it, and she certainly did not want to make any more mess. Fine! The pictures came out great anyway.
So I'm going to go the lazy route and just post a link to the photo album I posted on facebook. Even if you don't have facebook, you can still see them. Take a look, they are ADORABLE!
Birthday Pictures
Picture People actually prints the photos out and even frames them for you, so I was able to bring a bunch home that day. I put the framed ones on the couch, and Georgia pointed to her picture and said, "Juh juh!" Then she pointed to Nate's picture and said, "Naaaaayyy!" That was the first time I've heard her say Nate! And I probably wouldn't have realized what she was saying if she hadn't been pointing at his picture. Since then, she's been chasing him around yelling "Naaaaaayyyy!!!!" It's cute. Nate was also a big fan of the pictures and wants to look at them and identify whose in each all the time.
So, we had the big birthday bash on Sunday (July 24). Last year on Nate's birthday, I was so big and pregnant and just trying to get ready for Georgia, and I figured it was the last year that Nate really wouldn't care if he had a party or not, so all we did was get a Thomas cake and go to the zoo. So this year I wanted to do a big party, especially since it was Georgia's big number one! It was kind of a crazy weekend because I hosted a playgroup at work the day before and we had a friend's birthday party the night before, but I've realized that a party isn't too hard if you ask everyone else to do the cooking for you! :) Blake grilled burgers, Memaw brought beans and the cakes, Grandma brought chips and pop ... what else do you need? The party was a lot of fun, especially since there were a lot of kids there. We ate, played pin the tail on the donkey, busted a pinata, sang happy birthday and ate cake, and opened a lot of presents! Good friends, good food, good times. I think the cakes were the biggest hit. Aunt Kathy sent a polka dot sheet cake for us, plus a little princess cake just for Georgia and a little Thomas cake just for Nate. They were adorable, and tasted awesome! When we started singing happy birthday to Nate, he just stared straight ahead like he was being bashful. When we sang to Georgia, she just looked confused. At least she didn't cry this time when she stuck her finger in the icing. She preferred the cake part more than the icing, and Nate ate just about all of his 7 inch cake by himself! Once again I'm going to be lazy and just link to the pictures on facebook.
Birthday party
We're still writing thank you notes and putting together gifts and recovering from our big weekend! We still have balloons and a happy birthday banner hanging in the living room. We'll keep right on celebrating.
I decided to spend a small fortune at the Picture People for their birthday photos, since it's Georgia's first and they always do such a great job. If you've ever taken small children to get their photos taken, you know it's stressful and exhausting, but the results are priceless! This time I was fortunate to have Alisa go with me to help wrangle the kids and keep them distracted during the arduous process of deciding which of the thousand awesome pictures to order! Nate went first, and although he typically does his big fake cheese or doesn't smile at all, I was pleasantly shocked that he was a little model! He smiled so naturally, and posed! It was hilarious and impressive. Georgia, on the other hand, was a little pistol and didn't do anything we wanted her to. It seems like kids go through stages of what they think a smile is. Well, right now she thinks she's smiling when she has her mouth wide open! Of course she kept running off the backdrop and being generally difficult. I had gone to a lot of trouble to stop and get some cupcakes on the way to work (even asked for them to be decorated special with the color icing I wanted) and kept them upright and intact all day at work and on the way to the studio, and don't you know this little stinker wouldn't eat the cupcake? She stuck her hand in it and looked at her hand and cried. She wouldn't lick it, and she certainly did not want to make any more mess. Fine! The pictures came out great anyway.
So I'm going to go the lazy route and just post a link to the photo album I posted on facebook. Even if you don't have facebook, you can still see them. Take a look, they are ADORABLE!
Birthday Pictures
Picture People actually prints the photos out and even frames them for you, so I was able to bring a bunch home that day. I put the framed ones on the couch, and Georgia pointed to her picture and said, "Juh juh!" Then she pointed to Nate's picture and said, "Naaaaayyy!" That was the first time I've heard her say Nate! And I probably wouldn't have realized what she was saying if she hadn't been pointing at his picture. Since then, she's been chasing him around yelling "Naaaaaayyyy!!!!" It's cute. Nate was also a big fan of the pictures and wants to look at them and identify whose in each all the time.
So, we had the big birthday bash on Sunday (July 24). Last year on Nate's birthday, I was so big and pregnant and just trying to get ready for Georgia, and I figured it was the last year that Nate really wouldn't care if he had a party or not, so all we did was get a Thomas cake and go to the zoo. So this year I wanted to do a big party, especially since it was Georgia's big number one! It was kind of a crazy weekend because I hosted a playgroup at work the day before and we had a friend's birthday party the night before, but I've realized that a party isn't too hard if you ask everyone else to do the cooking for you! :) Blake grilled burgers, Memaw brought beans and the cakes, Grandma brought chips and pop ... what else do you need? The party was a lot of fun, especially since there were a lot of kids there. We ate, played pin the tail on the donkey, busted a pinata, sang happy birthday and ate cake, and opened a lot of presents! Good friends, good food, good times. I think the cakes were the biggest hit. Aunt Kathy sent a polka dot sheet cake for us, plus a little princess cake just for Georgia and a little Thomas cake just for Nate. They were adorable, and tasted awesome! When we started singing happy birthday to Nate, he just stared straight ahead like he was being bashful. When we sang to Georgia, she just looked confused. At least she didn't cry this time when she stuck her finger in the icing. She preferred the cake part more than the icing, and Nate ate just about all of his 7 inch cake by himself! Once again I'm going to be lazy and just link to the pictures on facebook.
Birthday party
We're still writing thank you notes and putting together gifts and recovering from our big weekend! We still have balloons and a happy birthday banner hanging in the living room. We'll keep right on celebrating.
Tuesday, July 13, 2010
Milestones
Georgia started walking this weekend. She's been taking steps for awhile, but she finally got her confidence up, and Saturday she just took off. She's pretty impressed with herself, and we're pretty impressed with her too!
(If you're viewing this on facebook or email, click here to see videos.) Please excuse the toy store that exploded in my living room.
Also overnight last night, she popped out her two top front teeth! Now she has all four in the front.
Nate has also had some milestones this weekend. Saturday, I was very proud of him that for the first time ever, he picked up a slice of pizza and ate off of it instead of needing me to cut it in bites for him! That's a big step for him!
And Sunday night when we were getting ready for baths, Nate took his shorts off by himself, took his shirt off with minimal help, and stepped into the bathtub with just a hand to steady him. Yay!
(If you're viewing this on facebook or email, click here to see videos.) Please excuse the toy store that exploded in my living room.
Also overnight last night, she popped out her two top front teeth! Now she has all four in the front.
Nate has also had some milestones this weekend. Saturday, I was very proud of him that for the first time ever, he picked up a slice of pizza and ate off of it instead of needing me to cut it in bites for him! That's a big step for him!
And Sunday night when we were getting ready for baths, Nate took his shorts off by himself, took his shirt off with minimal help, and stepped into the bathtub with just a hand to steady him. Yay!
Sunday, July 11, 2010
Just in Case You Ever Wonder
... by Max Lucado is probably my favorite children's story:
Long, long ago God made a decision--
a very important decision ...
one that I'm really glad He made.
He made the decision to make you.
The same hands that made the stars made you.
The same hands that made the canyons made you.
The same hands that made the trees and the moon and the sun made you.
That's why you are so special. God made you.
He made you in a very special way.
He made your eyes so they would twinkle.
He made your mouth so you could smile.
He made your laugh so you could giggle.
God made you like no one else.
If you looked all over the world--in every city in every house--there would be no one else like you ...
no one with your eyes,
no one with your mouth,
no one with your laugh.
You are very, very special.
And since you are so special, God wanted to put you in just the right home ...
where you would be warm when it's cold,
where you'd be safe when you're afraid,
where you'd have fun and learn about heaven.
So after lots of looking for just the right family, God sent you to me. And I'm so glad he did.
I'll never forget the first time I saw you ...
your eyes were closed,
your fingers were curled into two little fists,
your cheeks were puffy and round.
I knew in my heart God had sent someone very wonderful for me to take care of.
Your first night with me I heard every sound you made:
I heard you gurgle,
I heard you sniff,
I heard your little lips smack.
I heard you cry when you wanted to eat, and I fed you.
You're bigger now and do more things.
You can walk and run.
You can play and talk.
You can eat and sing and look at books.
You're not a little baby anymore.
But as you grow and change, some things will stay the same.
I'll always love you.
I'll always hug you.
I'll always be on your side.
And I want you to know that ... just in case you ever wonder.
Remember I'm here for you.
On dark nights when you hear noises in your closet, call me.
When you see monsters in the shadows, call me.
On hard days when kids are mean and don't treat you like they should, come to me.
If your grades are bad and your teacher is mad, come to me ... cause I love you.
And I always will, just in case you ever wonder.
Most of all, I'll be here to teach you about God.
He loves you.
He protects you.
He and His angels are always watching over you.
And God wants me to make sure you know about heaven.
It's a wonderful place.
There are no tears there.
No monsters.
No mean people.
You never have to say "good-bye,"
or "good night,"
or "I'm hungry."
You never get cold or sick or afraid.
In heaven you are so close to God that He will hug you, just like I hug you. It's going to be wonderful. I will be there, too. I promise. We will be there together, forever.
Remember that ...
just in case you ever wonder.
Tuesday, July 6, 2010
Day Out with Thomas, fun with Papaw and Grandma
I was just looking back through my pictures and realized I hadn't posted pictures of Day Out With Thomas, over a month ago! Well, Nate woke up that morning complaining that his ear hurt, and he had a fever. So I called the doctor for an antibiotic, we medicated him up, and we were off to meet Papaw and Grandma and see Thomas anyway. We are hard core Thomas fans!
Thanks again, Papaw and Grandma, for taking us! Nate is still talking about seeing Thomas.
We also went to visit Papaw and Grandma on Father's Day, so I figured I'd put those pictures here too while I'm at it.
Most of the day he felt pretty good.
It looks like they're holding hands, but he was just removing Georgia's hand from his train.
Georgia had a blast playing with the big kids.
I think Grandma was sore the next day from carrying one or the other the whole time we were there.
Waiting for Thomas ...
There he is!
This year, we were on an air conditioned dining car.
Sometimes his ear hurt.
Thanks again, Papaw and Grandma, for taking us! Nate is still talking about seeing Thomas.
We also went to visit Papaw and Grandma on Father's Day, so I figured I'd put those pictures here too while I'm at it.
Cousin Rose was a little Mommy to Georgia.
The little pool was a huge hit.
Nate stayed in the "deep end" the whole time.
Funniest quote of the day--Grace said, "Hey, it's warmer over here in Nate's side!" Hmm, I wonder why that would be! Ha!
"Swimming" makes Georgia tired.
Awww
We finally got Nate out of the pool with chocolate.
Conversations with the kids
Last weekend at breakfast ...
Nate: What are you eating?
Me: Um ... a bran muffin.
Nate: Hey, is that a chocolate donut?
Me: ... Maybe.
Nate: That IS a chocolate donut! Give me some!
In the middle of the night last night ...
Nate: (screaming) I want that ball!!! I want that ball!!!
Me: (just waking up) What's the matter, buddy?
Nate: I want that ball!
Me: You're just having a bad dream, honey.
Nate: But I want that ball!
Me: (Although my first inclination was actually to tell him he should share the ball to whomever he was playing with in his dream, I then realized I was crazy.) Okay, you can have it.
Back to sleep.
Nate is now constantly asking us what day it is. He thinks every Friday is his birthday.
Georgia learned her first sign--"more"--yesterday. And she promptly got more carrots. Last week, Granna taught her Pat-A-Cake--she's even good at the "rolling" part--and Pop taught her how to give high fives. She's really good at this.
However, she is such a stinker about showing off her tricks.
Me: Georgia, let's show Daddy! Patty cake, patty cake ...
Georgia: (Smiles at me)
Me: I know you can do this, come on! Patty cake, patty cake ...
Georgia: (More smiles)
Blake: It's okay, she's not even 1 yet.
Me: She can do it! Georgia, clap your hands, for heaven sakes!
Georgia: (giggles)
I've started calling Nate and Georgia, Pete and Repeat. If Nate is singing, Georgia tries her best to sing along. If he says Lalala, she says Lalala. If he's crying, she can match his tone and imitate his cry! She's surprisingly good at it. I might have two little singers on my hands.
Nate: What are you eating?
Me: Um ... a bran muffin.
Nate: Hey, is that a chocolate donut?
Me: ... Maybe.
Nate: That IS a chocolate donut! Give me some!
In the middle of the night last night ...
Nate: (screaming) I want that ball!!! I want that ball!!!
Me: (just waking up) What's the matter, buddy?
Nate: I want that ball!
Me: You're just having a bad dream, honey.
Nate: But I want that ball!
Me: (Although my first inclination was actually to tell him he should share the ball to whomever he was playing with in his dream, I then realized I was crazy.) Okay, you can have it.
Back to sleep.
Nate is now constantly asking us what day it is. He thinks every Friday is his birthday.
Georgia learned her first sign--"more"--yesterday. And she promptly got more carrots. Last week, Granna taught her Pat-A-Cake--she's even good at the "rolling" part--and Pop taught her how to give high fives. She's really good at this.
However, she is such a stinker about showing off her tricks.
Me: Georgia, let's show Daddy! Patty cake, patty cake ...
Georgia: (Smiles at me)
Me: I know you can do this, come on! Patty cake, patty cake ...
Georgia: (More smiles)
Blake: It's okay, she's not even 1 yet.
Me: She can do it! Georgia, clap your hands, for heaven sakes!
Georgia: (giggles)
I've started calling Nate and Georgia, Pete and Repeat. If Nate is singing, Georgia tries her best to sing along. If he says Lalala, she says Lalala. If he's crying, she can match his tone and imitate his cry! She's surprisingly good at it. I might have two little singers on my hands.
Sunday, July 4, 2010
Spina Bifida Association National Conference
I've been to a few conferences before, for journalism or donor relations in my past lives. When you go to a conference, you usually expect you are walking in with a fairly decent base of knowledge and that you will learn some tips, get some inspiration for how to do things better, and add to your understanding of the subject. That's how I went in to the SBA national conference, excited to learn more and meet people. Within the first hour, I was blown away to be learning about an area that I had never heard of before. I've been aggressively researching Spina Bifida for more than 4 years now, talked with hundreds of parents about their experiences, read list servs, message boards, and blogs, and I now work at a chapter. How is it possible that I've never heard of Executive Functioning? Especially since it explains so much about my child! I'll get back to that in a minute.
The kids and I met my parents in Cincinnati Sunday evening, and we headed over to the Opening Reception of the conference. We had a big group from Kentucky, and I was passing out my hand-made buttons that said, "I'm with SBAKentucky." :) I was so proud of those buttons, haha. Monday morning, Nate was to be at Kids Camp at 8:30, and it lasted until 5:30! I was really nervous about how he'd hold up--he's never been in any kind of all day program like that. At first, he was hesitant and didn't want me to leave him ... until we heard there was a rice table. It was like a big sand table filled with rice, and if you know Nate, you know that he feels all squishy and happy inside when he's running his hands through rice! After about 30 seconds, I was able to say, See ya, bye!
Nate LOVED Kids Camp! He asked to go back the next day! (He was going to go back anyway, but I expected him to protest.) A firefighter came to visit (Nate was a little afraid until she took off some of her gear), a zoo keeper brought animals (snake, hedgehog, alligator, and others) for them to pet, they had story time and movie time, and brownies, and what more could a little boy ask for? When I picked him up the last day, he was watching a movie dressed in a chef hat and a Speedway vest. What? Why? I still don't know! I can't tell you how happy I was that he had a good time. They did a great job with Kids Camp.
Anyway, after I dropped Nate off Monday morning, I went over to the conference and immediately recognized some of my mommy friends from the babycenter spina bifida board!!!! I had already met Wendy, but this was my first time meeting Leigh, Emily, and Elizabeth. It's so funny when you feel like such good friends with people you've never met before! We all went to the opening session, which is where I first started hearing about this executive functioning business, as well as some other awesome information from very well respected speakers. In the afternoon was the Parent Chat. There were 35 people in the room, all of whom have a 5 year old or younger who has SB, and I personally knew half the people in there! It was so funny. In addition to my babycenter friends, there were 11 people in there from Kentucky. I was so proud when one of those moms was giving another advice about a program she uses, and she said twice, "I never would have known about this if it wasn't for our Playtime with Me at SBAK." Yes! That's the whole point! Made my heart happy that we're doing something that really makes a difference. Also, you could tell a huge difference in the parents who have a support system like our SB board or the playgroup, and those that don't have the support of other parents. I am so lucky!
That evening we had an impromptu playgroup! The hotel staff let us take over their breakfast restaurant that they weren't using in the evening, and we moved tables, set the babies up in the middle, and gathered a bunch of people from Kentucky, and my babycenter mommies! It was so much fun having all of us sitting face to face across a table.
This is our little buddy Ian, but Nate doesn't get to play with him enough to remember his name, so after he left for the pool, Nate cried and cried, "I want to play with that girl!!!!" (He still gets his pronouns mixed up sometimes!)
It was interesting staying in a hotel by myself with both kids, but I'm very thankful that my parents were staying in the same hotel to take care of Georgia during the day, and they were a huge help with Nate too.
Tuesday was packed full of sessions about everything from social skills to physical therapy to bracing to folic acid. I learned a ton and took pages of notes, and my brain was starting to get a little mushy by the end of the day from information overload. We needed to just get out of the hotel. So we went to dinner, and as often happens, Nate had a huge fit in the restaurant. As in, screaming. It was bad. Georgia was screaming too, but Nate is, after all, four now and should act a little better. So my mind was all over the place that night, just confused about why he's been so out of sorts, especially since Minds in Motion but also just regular Nate stuff. I've said before that Nate seems like this really complex puzzle, and I figure out little bits and pieces of him at a time, but I haven't totally figured him out yet and what makes him tick. The next day, I found what I think is a major piece of the puzzle.
Like sensory processing, this executive functioning stuff is hard to wrap my brain around. But I'll try to explain it. There are some differences in the brain in a child with SB. I really like to think that SB is only physical stuff, but when there's any kind of difference in your brain (for example, Nate has mild unshunted hydrocephalus and very mild chiari malformation), it can cause some differences. The differences are not so noticable to the untrained eye, so sometimes our kids could get blamed for being lazy, innattentive, etc., when they have very real reasons for how they are acting. The pre-frontal cortex of your brain controls your executive functions--"abilities that allow a person to successfully engage in independent, planned, strategic behavior to reach a goal." They are a set of cognitive skills required for individuals to carry out tasks. These skills are often lacking in people who have SB, and the skills include:
Inhibition: The ability to think about consequences before you act. (Picture a teenage boy here!)
Shift: Transition freely between tasks (e.g. Time to stop watching TV so we can have lunch.)
Emotional Control: Ability to manage emotions by thinking rationally ("I'm disappointed I can't play outside because it's raining, but it's okay cause mom said I can play outside tomorrow if it's nice out.")
Initiation: Ability to begin a task or problem solve independently. (An example of this might be: Nate sees some kids playing a simple game, and he stands on the sidelines watching them, smilings. If you ask him if he'd like to play the game, he says yes. But it takes you actually guiding him there before he will play. There's a difference between knowing what you want to do and actually doing it. Those who have poor initiation appear lazy, unmotivated.)
Working Memory: Hold information in mind long enough to complete a task (For example, 2-3 step directions such as "Pick up that toy and put it in your toy box, and close the lid.)
Planning/Organization: ability to manage demands, create a plan or step by step process to get from A to B (such as when you tell a child to "clean you room." It takes a lot of planning to figure out all the steps to get that done.)
Organization of Materials: Organize belongings, create and maintain systems to keep track of information and materials. (Could be like understanding where the cars always go and where the dolls always go.)
Self-Monitoring: being able to monitor your own performance and measure it agains standard of what is needed/expected, ask yourself, "how am I doing?" (Maybe like comparing how he is dancing to how his buddy is dancing and trying to do it the same.)
Then the speaker gave an example of a 4 year old boy named Micah who has a melt down over every little thing, especially when he's tired or hungry or in places where there are a lot of people and noises. Far moreso than his peers. He has trouble transitioning from one activity to another, even if the next activity is really fun. He thrives on routine. It went on and on, and sounded like she was not referring about a boy named Micah but instead about a little boy named Nate.
When Nate was a baby, we thought, hmm, maybe he's just a lazy baby. He doesn't seem to have that innate desire to move, even though he has the ability. He's happy just to sit in the floor and smile at us. He's never been one to say "I'll do it myself." This is all INITIATION. Nate has a terrible time transitioning between activities. His teachers and therapists bring this up all the time. He throws major fits, even when a cartoon ends and another comes on. This is SHIFT. The tantrums he has, especially in public places like restaurants. He melts over every little thing. If he drops a cookie, it's the end of the world. If he asks me to carry him and I can't right that second, it's the end of the world. He can't rationally see that it's going to be okay. Moreso than his peers. This is EMOTIONAL CONTROL. He had a terrible time learning how to crawl, climb stairs, etc, partly because he was a bad motor planner. He couldn't figure out the different steps it took to do these tasks. This is ORGANIZING/PLANNING.
Please don't get me wrong--I'm not making excuses for Nate or trying to slap a label on him to explain away his behaviors. This infomation gives me so much HOPE. It's really not that I'm doing a terrible job as a mother, or that Nate is just a brat. There is a real, anatomical reason for these challenges he's having, and now I have things I can do to help him. We have already learned over the years to do many of these things, such as remove him from an overstimulating situation if he's having a tantrum and talk him down off his ledge. But they certainly gave me lots of tips for more I can do. Like games to play, how to prepare him for situations, how to keep him in a good routine but mix it up now and then so he doesn't get stuck in a rut.
So all this information has really helped me understand Nate better, and it will also be helpful when talking with his teachers and therapists.
I went up to the speaker after the session was over, and I told her a little about Nate and that he had been diagnosed with Sensory Processing Disorder, and I wanted to know how that was related to the Executive Functions. She said sensory processing is under that larger umbrella of executive functions. She said that with all this sensory therapy, we're just treating a symptom and not the real cause of the issues! BREAKTHROUGH!!! I asked her what type of specialist I need, because we have a specialist for everything! :) She suggested we contact a Speech Pathologist for Cognitive Rehabilitation. There wasn't any more time to ask questions, and I have no idea what this is, but I'm going to find out! I know, I know, another therapy, but I really feel like we're finally starting to put all the pieces of this puzzle together and might actually start to get some real answers.
So I came back from conference physically exhausted, but mentally invigorated. I'm so glad I had the opportunity to go, and I'm going to put a lot of what I learned into practice, both at work and at home.
The kids and I met my parents in Cincinnati Sunday evening, and we headed over to the Opening Reception of the conference. We had a big group from Kentucky, and I was passing out my hand-made buttons that said, "I'm with SBAKentucky." :) I was so proud of those buttons, haha. Monday morning, Nate was to be at Kids Camp at 8:30, and it lasted until 5:30! I was really nervous about how he'd hold up--he's never been in any kind of all day program like that. At first, he was hesitant and didn't want me to leave him ... until we heard there was a rice table. It was like a big sand table filled with rice, and if you know Nate, you know that he feels all squishy and happy inside when he's running his hands through rice! After about 30 seconds, I was able to say, See ya, bye!
Nate LOVED Kids Camp! He asked to go back the next day! (He was going to go back anyway, but I expected him to protest.) A firefighter came to visit (Nate was a little afraid until she took off some of her gear), a zoo keeper brought animals (snake, hedgehog, alligator, and others) for them to pet, they had story time and movie time, and brownies, and what more could a little boy ask for? When I picked him up the last day, he was watching a movie dressed in a chef hat and a Speedway vest. What? Why? I still don't know! I can't tell you how happy I was that he had a good time. They did a great job with Kids Camp.
Anyway, after I dropped Nate off Monday morning, I went over to the conference and immediately recognized some of my mommy friends from the babycenter spina bifida board!!!! I had already met Wendy, but this was my first time meeting Leigh, Emily, and Elizabeth. It's so funny when you feel like such good friends with people you've never met before! We all went to the opening session, which is where I first started hearing about this executive functioning business, as well as some other awesome information from very well respected speakers. In the afternoon was the Parent Chat. There were 35 people in the room, all of whom have a 5 year old or younger who has SB, and I personally knew half the people in there! It was so funny. In addition to my babycenter friends, there were 11 people in there from Kentucky. I was so proud when one of those moms was giving another advice about a program she uses, and she said twice, "I never would have known about this if it wasn't for our Playtime with Me at SBAK." Yes! That's the whole point! Made my heart happy that we're doing something that really makes a difference. Also, you could tell a huge difference in the parents who have a support system like our SB board or the playgroup, and those that don't have the support of other parents. I am so lucky!
That evening we had an impromptu playgroup! The hotel staff let us take over their breakfast restaurant that they weren't using in the evening, and we moved tables, set the babies up in the middle, and gathered a bunch of people from Kentucky, and my babycenter mommies! It was so much fun having all of us sitting face to face across a table.
This is our little buddy Ian, but Nate doesn't get to play with him enough to remember his name, so after he left for the pool, Nate cried and cried, "I want to play with that girl!!!!" (He still gets his pronouns mixed up sometimes!)
It was interesting staying in a hotel by myself with both kids, but I'm very thankful that my parents were staying in the same hotel to take care of Georgia during the day, and they were a huge help with Nate too.
Us girls getting ready on Tuesday morning.
Tuesday was packed full of sessions about everything from social skills to physical therapy to bracing to folic acid. I learned a ton and took pages of notes, and my brain was starting to get a little mushy by the end of the day from information overload. We needed to just get out of the hotel. So we went to dinner, and as often happens, Nate had a huge fit in the restaurant. As in, screaming. It was bad. Georgia was screaming too, but Nate is, after all, four now and should act a little better. So my mind was all over the place that night, just confused about why he's been so out of sorts, especially since Minds in Motion but also just regular Nate stuff. I've said before that Nate seems like this really complex puzzle, and I figure out little bits and pieces of him at a time, but I haven't totally figured him out yet and what makes him tick. The next day, I found what I think is a major piece of the puzzle.
Like sensory processing, this executive functioning stuff is hard to wrap my brain around. But I'll try to explain it. There are some differences in the brain in a child with SB. I really like to think that SB is only physical stuff, but when there's any kind of difference in your brain (for example, Nate has mild unshunted hydrocephalus and very mild chiari malformation), it can cause some differences. The differences are not so noticable to the untrained eye, so sometimes our kids could get blamed for being lazy, innattentive, etc., when they have very real reasons for how they are acting. The pre-frontal cortex of your brain controls your executive functions--"abilities that allow a person to successfully engage in independent, planned, strategic behavior to reach a goal." They are a set of cognitive skills required for individuals to carry out tasks. These skills are often lacking in people who have SB, and the skills include:
Inhibition: The ability to think about consequences before you act. (Picture a teenage boy here!)
Shift: Transition freely between tasks (e.g. Time to stop watching TV so we can have lunch.)
Emotional Control: Ability to manage emotions by thinking rationally ("I'm disappointed I can't play outside because it's raining, but it's okay cause mom said I can play outside tomorrow if it's nice out.")
Initiation: Ability to begin a task or problem solve independently. (An example of this might be: Nate sees some kids playing a simple game, and he stands on the sidelines watching them, smilings. If you ask him if he'd like to play the game, he says yes. But it takes you actually guiding him there before he will play. There's a difference between knowing what you want to do and actually doing it. Those who have poor initiation appear lazy, unmotivated.)
Working Memory: Hold information in mind long enough to complete a task (For example, 2-3 step directions such as "Pick up that toy and put it in your toy box, and close the lid.)
Planning/Organization: ability to manage demands, create a plan or step by step process to get from A to B (such as when you tell a child to "clean you room." It takes a lot of planning to figure out all the steps to get that done.)
Organization of Materials: Organize belongings, create and maintain systems to keep track of information and materials. (Could be like understanding where the cars always go and where the dolls always go.)
Self-Monitoring: being able to monitor your own performance and measure it agains standard of what is needed/expected, ask yourself, "how am I doing?" (Maybe like comparing how he is dancing to how his buddy is dancing and trying to do it the same.)
Then the speaker gave an example of a 4 year old boy named Micah who has a melt down over every little thing, especially when he's tired or hungry or in places where there are a lot of people and noises. Far moreso than his peers. He has trouble transitioning from one activity to another, even if the next activity is really fun. He thrives on routine. It went on and on, and sounded like she was not referring about a boy named Micah but instead about a little boy named Nate.
When Nate was a baby, we thought, hmm, maybe he's just a lazy baby. He doesn't seem to have that innate desire to move, even though he has the ability. He's happy just to sit in the floor and smile at us. He's never been one to say "I'll do it myself." This is all INITIATION. Nate has a terrible time transitioning between activities. His teachers and therapists bring this up all the time. He throws major fits, even when a cartoon ends and another comes on. This is SHIFT. The tantrums he has, especially in public places like restaurants. He melts over every little thing. If he drops a cookie, it's the end of the world. If he asks me to carry him and I can't right that second, it's the end of the world. He can't rationally see that it's going to be okay. Moreso than his peers. This is EMOTIONAL CONTROL. He had a terrible time learning how to crawl, climb stairs, etc, partly because he was a bad motor planner. He couldn't figure out the different steps it took to do these tasks. This is ORGANIZING/PLANNING.
Please don't get me wrong--I'm not making excuses for Nate or trying to slap a label on him to explain away his behaviors. This infomation gives me so much HOPE. It's really not that I'm doing a terrible job as a mother, or that Nate is just a brat. There is a real, anatomical reason for these challenges he's having, and now I have things I can do to help him. We have already learned over the years to do many of these things, such as remove him from an overstimulating situation if he's having a tantrum and talk him down off his ledge. But they certainly gave me lots of tips for more I can do. Like games to play, how to prepare him for situations, how to keep him in a good routine but mix it up now and then so he doesn't get stuck in a rut.
So all this information has really helped me understand Nate better, and it will also be helpful when talking with his teachers and therapists.
I went up to the speaker after the session was over, and I told her a little about Nate and that he had been diagnosed with Sensory Processing Disorder, and I wanted to know how that was related to the Executive Functions. She said sensory processing is under that larger umbrella of executive functions. She said that with all this sensory therapy, we're just treating a symptom and not the real cause of the issues! BREAKTHROUGH!!! I asked her what type of specialist I need, because we have a specialist for everything! :) She suggested we contact a Speech Pathologist for Cognitive Rehabilitation. There wasn't any more time to ask questions, and I have no idea what this is, but I'm going to find out! I know, I know, another therapy, but I really feel like we're finally starting to put all the pieces of this puzzle together and might actually start to get some real answers.
So I came back from conference physically exhausted, but mentally invigorated. I'm so glad I had the opportunity to go, and I'm going to put a lot of what I learned into practice, both at work and at home.
Friday, July 2, 2010
Nate's birthday weekend
How many kids are lucky enough to get a whole birthday weekend? Well, we needed to be in Cincinnati on Sunday evening for the Spina Bifida Association national conference anyway, so we decided to go up on Saturday and have some fun.
So I have to tell this story about Georgia, and I'll probably continue to tell it throughout her life to anyone who will listen. Okay, Blake and I drove seperately up to Cincinnati, because he was coming home on Sunday and we were staying. He drove the truck with both kids in it (I think it's safer, but I don't like to drive it because it's kinda redneck :) and I followed him by myself in the car. We got up to around Florence (for those that know Kentucky), where you're starting to get into like 5 lanes each way. I called Blake to see if the kids were behaving, and everything was fine. A couple minutes later, I saw him reaching back to mess with one of the kids, then he started slowing way down, and he pulled over on the side of I-71. I, of course, followed him, wondering what was going on. He got out of the truck and started walking back toward me with his hand held up in the air like he had something on it. I rolled down my window and said, "What's on your hand?" He said, "POOP!" Georgia had started fussing, so he reached back to replace her paci, and he came back with a hand full of poop! (I'm really sorry if this grosses you out, but most of my readers are moms and usually enjoy a good poop story.) I gave him some wipes for his hands, and he told me I was going to have to clean her up because he was totally grossed out.
So I pulled her car seat carrier out of the truck and saw she had had a massive blowout. She had it head to toe. It was incredible. Blake said, "How can so much poop come out of someone so small?!" I asked him to get in our luggage and get out a beach towel and the box of wipes. I laid the beach towel in the grass beside the road (the truck was between us and the highway) and put her on it. I stripped her down and used about a half box of wipes trying to clean her up. Meanwhile, Blake was using a bunch more wipes trying to scoop poop out of her car seat. It was still pretty nasty, so we had to put another towel in the car seat and put her in there in just a diaper. And we went on our way! That's one of our top 2 poop stories of all time.
Our first stop was EnterTrainment Junction, which has the largest model train display in the world. We were pretty sure Nate would like it. Oh, he LOVED it. He was totally enthralled, running around saying "Whoo whoo!!!!!" I haven't seen him that happy in a long time. It's funny how after you have kids, your idea of a great time is watching your kids have a great time.
After getting back to the hotel, one little girl needed a bath, and one car seat needed a good washing. We went out to dinner, and then went swimming!!!!
If you look close, you'll see Oreos on the mouth and blood on the head. (He fell when getting off the bed.) I need to start preparing my Mother of the Year Award speech.
Look how BIG he looks! He IS 4 now, after all.
Sunday morning we went to Newport Aquarium. FYI, they have a "no stroller" policy on Saturdays in summer. We were not expecting that, but no problem, we figured Nate would walk and Georgia would stay in my Mei Tai baby carrier. Instead, Nate wanted Blake to carry him through the entire aquarium, and Georgia wanted to walk all the way through, with me bent over holding her hands.
Nate is still talking about his birthday weekend. Twice in the last couple days, he's randomly told Blake, "Thank you for my birthday." Very sweet.
So I have to tell this story about Georgia, and I'll probably continue to tell it throughout her life to anyone who will listen. Okay, Blake and I drove seperately up to Cincinnati, because he was coming home on Sunday and we were staying. He drove the truck with both kids in it (I think it's safer, but I don't like to drive it because it's kinda redneck :) and I followed him by myself in the car. We got up to around Florence (for those that know Kentucky), where you're starting to get into like 5 lanes each way. I called Blake to see if the kids were behaving, and everything was fine. A couple minutes later, I saw him reaching back to mess with one of the kids, then he started slowing way down, and he pulled over on the side of I-71. I, of course, followed him, wondering what was going on. He got out of the truck and started walking back toward me with his hand held up in the air like he had something on it. I rolled down my window and said, "What's on your hand?" He said, "POOP!" Georgia had started fussing, so he reached back to replace her paci, and he came back with a hand full of poop! (I'm really sorry if this grosses you out, but most of my readers are moms and usually enjoy a good poop story.) I gave him some wipes for his hands, and he told me I was going to have to clean her up because he was totally grossed out.
So I pulled her car seat carrier out of the truck and saw she had had a massive blowout. She had it head to toe. It was incredible. Blake said, "How can so much poop come out of someone so small?!" I asked him to get in our luggage and get out a beach towel and the box of wipes. I laid the beach towel in the grass beside the road (the truck was between us and the highway) and put her on it. I stripped her down and used about a half box of wipes trying to clean her up. Meanwhile, Blake was using a bunch more wipes trying to scoop poop out of her car seat. It was still pretty nasty, so we had to put another towel in the car seat and put her in there in just a diaper. And we went on our way! That's one of our top 2 poop stories of all time.
Our first stop was EnterTrainment Junction, which has the largest model train display in the world. We were pretty sure Nate would like it. Oh, he LOVED it. He was totally enthralled, running around saying "Whoo whoo!!!!!" I haven't seen him that happy in a long time. It's funny how after you have kids, your idea of a great time is watching your kids have a great time.
Georgia is all cleaned up, and I put a clean dress on her when we got there, but I couldn't salvage her shoes.
A very happy guy.
All 3 kids having fun with trains.
Such a big girl now.
After getting back to the hotel, one little girl needed a bath, and one car seat needed a good washing. We went out to dinner, and then went swimming!!!!
Ever wonder where Nate gets that cheesy grin?
If you look close, you'll see Oreos on the mouth and blood on the head. (He fell when getting off the bed.) I need to start preparing my Mother of the Year Award speech.
This is a cute picture when it's not rotated the wrong way.
Sunday morning we went to Newport Aquarium. FYI, they have a "no stroller" policy on Saturdays in summer. We were not expecting that, but no problem, we figured Nate would walk and Georgia would stay in my Mei Tai baby carrier. Instead, Nate wanted Blake to carry him through the entire aquarium, and Georgia wanted to walk all the way through, with me bent over holding her hands.
Nate is still talking about his birthday weekend. Twice in the last couple days, he's randomly told Blake, "Thank you for my birthday." Very sweet.
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