Seven Christmas Parties and a partridge in a pear tree

I have to admit that I was not looking forward to the holidays this year. The calendar looked a little too wild, and among all the Christmas parties, I didn't see any room for Christmas joy. Every December is a bit of a scheduling issue because of course we want to have special celebrations with all three sets of our parents, plus grandparents and other special traditions. This year got a bit more difficult because for SBAK, I was responsible for hosting five Christmas parties. It just so happened that all of these celebrations fell on different days--amazing, really. But as crazy as this month has been, I have enjoyed it so much and have realized how blessed I am to be surrounded by family and friends and to actually get paid for stuffing stockings for little kids and spending time with other SB families.

Our first party, the first Friday in December, was the Lexington SBAK party at GattiTown. Don't tell anybody, but I think this was my favorite SBAK party because it was so much fun and the least amount of work. :)

Nate was reunited with his buddy Nathaniel.

This was the beginning of the month, so Santa hadn't had time to bulk up on cookies and such yet. He was looking a little on the skinny side.

Georgia is just at the beginning of her "afraid of Santa" phase that will probably last for the next two years.

We were supposed to go to southeastern Kentucky the next day for another SBAK holiday party, but had to cancel it due to lack of RSVPs and weather. I was disappointed about that, but I sure did enjoy the rest. That Sunday I took the kids to the SBAK "Decorate your own Gingerbread House" event--I didn't even have to work! I just enjoyed it. In fact, Nate did most of the decorating with the chef, and I just took pictures and helped Georgia snack on candy.

The next weekend I hosted two SBAK parties in Louisville--one for adults on Fridayand one for children on Saturday. It was A LOT of work, but both were fun parties and very successful. I love it when everyone leaves saying, "This was so much fun!" Unfortunately, I have no pictures of me and the kids from these parties. But here are a couple pictures of other people. :)

Then on Sunday of that second weekend, we went to Indiana to celebrate Christmas with Papaw and Grandma and family. The kids had a blast and got lots of presents.

Unfortunately on the way home, we got stuck in a snow storm, and there was a bad wreck that had us stopped for two hours. Brian and Sunny were stuck right in front of us. A two hour trip took us five hours! But thankfully we got home safely.

That brings us to this past weekend. On Friday was our last SBAK holiday party in Bowling Green. I think it was this day that I decided that I was silly for being stressed about planning these parties. It's a joy to make the preparations and spend time with these families.

My kids got a lot of Santa's lap time this December.

Okay, this is where it started getting really crazy! We got home from Bowling Green around midnight Friday, and at noon on Saturday we left for a 4 hour trip to Martin County! But I was so excited to get to spend Christmas with my Granny and Papal and aunts and uncles and cousins. Last year when we decided we were going to spend Christmas at home, that meant missing my Granny's Christmas Eve celebration that I had been to every year of my life. This year, they moved it to the Saturday before so we could come. Awww and Yay!

Nate was so busy playing ball that I don't have any pictures of him. But check out Georgia in her Christmas gown! My mom found this for her and says it is exactly like the one she had for me when I was Georgia's age. What a cutie!

We spent the night, and the next day headed back to Louisville for Christmas with Memaw, GrandBob, Brian, Sunny and Koko! Janie kept asking if we were exhausted, but really we were fine and having a great time! Sunny made an excellent dinner, and every now and then I find myself wondering if they still have leftovers. :)

Haha, she does not look thrilled in this picture to be getting clothes, but she actually loved them and carried each little outfit over to me to show me.

Then commenced the flipping upside down. Be forewarned: If Nate asks to sit in your lap, he's going to want to flip backwards. And he's going to want to do it for the next hour. And then Georgia is going to want to as well.

Georgia is getting friendlier and doesn't always have to be on my hip! Progress!

So instead of being as stressful as I thought, this month has been filled with so many blessings and so much fun. Every day Nate asks which Christmas party we're going to today. :) When we get in the car, he says we're going on a "credible adventure" or having a "tastical day."

And after all the busyness, my shopping is done, and we get to just stay at home this week and next week. Nate is out of school, I have a relaxed schedule at work, and we have nowhere to go. My parents are coming this Friday to spend Christmas with us, and we're so looking forward to this family time.

One damper on our season is that we have lost our nanny Alisa. :( Luckily it happened at a time when I could arrange my work schedule to be at home, and we have some good prospects for new childcare, which will need to be decided by January 3rd. We are certain that all this is happening for the best and that God will open another door for us. Please pray that we'll find someone we trust.

So this was a whole lot of Christmas-ness, and our family wishes you a Christmas full of joy and love!

Potty Training: Here we go again

For those who don't hang onto my every word and remember everything I say (I know there aren't many of you), here's the background. According to our urology nurse, only about 5% of people with Spina Bifida potty train typically. Just about everyone can become socially continent by using catheters and a bowel management program. (But working where I do, I also see a lot of older kids and adults who are not at all socially continent, mainly because they don't know that's possible or how to achieve that.) Anyway, despite these odds, we are trying to potty train Nate typically. So far he has defied a lot of odds by not needing a shunt and walking independently. There is nothing unhealthy about his bladder, kidneys, or bowels. We have seen some indications that lead us to believe he can do it. And I sometimes see other indications that maybe he can't, or it's going to be very challenging. And by the way, I do recognize that at some point Nate will want privacy about this, but I also think it is important to talk about such things, especially with other SB moms (most of the people who read this blog).

Back in August/September, we had him pretty much potty trained for "#2", and we were all ready to start pee training, but for whatever reason, it just all fell apart, and we haven't had much luck since. Now that Nate is on his 2 week Christmas break, we have decided to recommence potty training. Before we seek outside help (i.e. behavioral therapist, additional testing, alternatives to pottying), we are giving this all we have. He is 4.5 years old. We want him to be out of pull ups by Kindergarten.  Here we go.

Major challenges: Nate couldn't care less about a wet/soiled pull-up. And he is totally resistant to sitting on the potty. Some have given suggestions to make him less resistant, so let me just say up front--his potty is in the middle of the living room floor, and he can watch cartoons and play with trains or whatever while sitting there. He's just resistant to it because ... well, because he is resistant to everything.

Step one: I went to Babies R Us and bought $40 worth of "training pants." For those who don't know, those are just like extra thick underwear. He does not like them "cause they leak" but I like them because they hold little leaks better than regular underwear but he can still feel when he's wet. I also tried the waterproof pants, but he loved those and wanted to wear them for hours without pottying, because they don't leak! I'm taking back the unopened packages of those.

Step two: Attempt a reward chart to make Nate less resistant to using the potty. The premise is that when Nate sits on the potty *without whining about it* he earns a letter on the chart. Each day we are spelling a word that will be his reward. Yesterday, we had to start this thing with a bang, so the word was TRAIN. Throughout the day, he had to sit on the potty 5 times without whining about it, and each time he earned a letter. (He did whine about it once and didn't earn a letter that time.) By 6 pm, he had earned his train, so we headed out to Walmart to buy one. He was quite pleased with himself.

Today's word was COOKIE! And after 7 times sitting on the potty with no whining (we had no whining incidents today--at least about the potty), we made sugar cookies. Again, Nate was thrilled and very proud of himself.

I thought I was a genius for coming up with this potty chart because not only does it encourage kids to sit on the potty, it also rewards not-whining, AND it teaches spelling! I thought about patenting it! Then I realized that most kids are like 2 or 3 when they potty train and are not ready for spelling lessons, lol! But if you know any 4 year olds potty training, try it out! It's working great so far.

Note: so far our success has been simply less resistance to sitting on the potty. He has not been successful at remaining dry in between potty times, but he's had plenty of successes on the potty too. We'll just keep trying.

Okay, I'm taking suggestions for words for the coming days! Tomorrow will be LIGHTS because the reward will be to take a drive looking for Christmas lights. Nate has suggested HOT DOG for another day. :) But I'd like to have some more easy/fun rewards that we can spell out in 5-8 letters.

What the kids are saying these days ...

The kids are cracking us up lately. Here are just a few of the things that have had us cracking up.
Georgia is saying more every day. A couple days ago she was singing a Christmas song: "Fa ra ra ra ra, ra ra ra raaaa!"

Also, both kids are really big into Knock Knock jokes these days, and it's so unfunny it's funny. One that Nate can actually do is:

Knock knock!
Who's there?
Atch.
Atch Who?
Bless you! Ahahahahaha!!!

But most of the time it's more like:
Knock knock!
Who's there?
Uh .... cough.
Cough who?
I'm coughing and sneezing! Ahahahahaha!!!

or

Thomas!
Thomas who?
Thomas is going to crash!!! Ahahahahaha!!!!

It doesn't matter if it's funny or not, Georgia will just cackle at every joke Nate tells. And then she runs around the house constantly saying Knaw Knaw!!! and then cracks up.

Sunday morning we were getting ready to go to have Christmas with Grandma and Papaw, and Nate was in rare form. I don't think he stopped talking for several hours. He was telling me, "Mama, I know a lot about water and bubbles. I had a dream about it! And I know a lot about building towers, and trains, and cars...." After awhile I said, "You sure are talkative this morning!" He said, "Yes, I am!" and just kept on talking. A little later I heard him telling Blake about all the stuff he knows about, and then he said, "Daddy, I am talking a lot!" Blake was a good daddy and said, "I love to hear what you have to say!" :)

Nate has a bit of a stubborn streak, if you didn't know. A quirky thing about him is that even at 4.5 years old, if he wakes up in the middle of the night or when he wakes up in the morning, he doesn't just get out of bed and come to our room ... instead, he prefers to lay in his bed and scream until someone comes to get him! Of course this often wakes up Georgia, and it's just a big pain in the butt. So the last couple of weeks I have been talking to him about and practicing when he wakes up to get out of bed and just come into our room. (I think part of the problem is that his bed is a bit difficult to climb out of because the sides are high.) Anyway, the other night I was going through the routine and said this is what you need to be doing instead of screaming because you're a big boy now. He just stopped me and said matter of factly, "But I'm just a little kid!" So that was equally endearing and aggravating!

On Tuesday, there was a parent-child activity at school, where we could come and make little Christmas-y things with Nate and have a snack time together. And we totally forgot about it. My phone was dead that morning, and when I finally remembered to put it on charge at work, I saw I had a text from Alisa that Nate's teacher clarified that the activity time was at 1:30 that day. Ack! It was 1:40! I knew it would take me at least a half hour to get there, so I called Blake and he left right away and got there in time for the snack together. Nate was not the least bit bothered that we missed the activity and was just pleasantly surprised to see Daddy show up at school. We felt awful though!

That evening I was asking Nate about his day, and he told me how surprised he was when Daddy walked in. Then he was telling me other things that happened that day, and it's so hard to figure out what really happened because insignificant details are included with the bigger happenings, and it just gets confusing. But then I heard, "Then I was walking down the hall holding hands with my best girl, and ..."
Me: Whoa whoa whoa! Back up. Who were you holding hands with?
Nate: My best girl!
Me: Who is your best girl?!
Nate: Trinity.
Me: But ... I thought I was your best girl!
Nate: (laughing) Naw!!!!
Hmph. And so it begins, I guess!

Then on Wednesday, Alisa emailed me a conversation she had with Nate:

Nate to the Toy Train DVD on TV: Do you remember me? It's me, Nate! Nate Payne! I love trains!
Alisa: Hey Nate, what is your address?
Nate: (says address)
Alisa: Yes! Do you know your mommy's name?
Nate: err...I just call her mommy?
Alisa: Yes, her name is mommy, but it's also Colleen Payne. Do you know daddy's name?
Nate: Blake Payne!!!!!  Aaaand this (points to cat) is KITTY CAT PAYNE!!!!

Place your orders, Grandmas

Here are our Christmas photos! They are by LittleFace photography, who is actually my neighbor Stephanie. When Nate saw her that day, he said, "I'm ready for my close up!" :D Both kids were quite uncooperative, so I'm very pleasantly surprised by the results.

And the real purpose of this blog post is so the Grandmas can tell me what they want to order. I have a CD of the images and will order them online. I don't want to get more or less than what you want, so email me with which ones you want and what sizes, please. You can click on each to see them bigger.

#1

#2

#3

#4

#5

 #6

#7

 

#8



If you're having trouble, my favs are #'s 1, 5, and 6. Thanks!

Survived the week

Hello, I have neglected you, Internet world. I haven't blogged, I've barely been able to check facebook, and I'm missing my SB mamas, who are apparently up to changing the world again.

Last Saturday, we went to Owensboro to see Memaw and GrandBob and after being there a few hours, I said those fated words: "I don't feel so good." Over the next few hours I developed a sore throat that made it feel like I was swallowing razor blades, a fever, body aches, headache ... general ick. The next day we went to Grandma and Papaw's house for lunch then drove home (2.5 hours), and I was so miserable that I actually had to pass on our Bible study potluck. You know I'm sick when I pass up a social engagement.

I stayed home from work on Monday--which was a huge deal to me because this is probably the busiest time of year at SBAK, and I was planning 2 holiday parties for this weekend and we also have our Gingerbread House event coming up tomorrow. There is a lot to do. But I was still feverish and had no energy, not to mention my throat. Then I discovered the "cure"--800mg ibuprofen left over from a root canal. :) For 7.5 hours at a time, I felt good! Which would lead me to think I was getting better, but I was like Cinderella with her pumpkins after 7.5 hours. Tuesday and Wedenesday I worked as hard as I could to get everything prepared for this weekend, then on Thursday when I woke up still feeling awful, and fresh out of my ibuprofen, I finally made a doctor appointment. Funny how mama waits 5 days before finally taking the time and $25 copay to go to the doctor; meanwhile, when I was waiting for the doctor, I got a text at 3:15 that Georgia had a fever, and I had her at her doctor by 4:30. So mama has an upper respiratory infection, and Georgia has an ear infection. But even better, mama has a Z-pack and Georgia has pink amoxicillan, and we are feeling better!

It really stinks when you realize that because you are a grown up--and especially because you're a mom--life just doesn't stop when you get sick. I still had to go to work, and take Nate for his OT eval, wake up in the middle of the night when the kids were screaming, pick up prescriptions... But Blake stepped up big time to cover for me what I couldn't do and take care of us, and our house would be unlivable if not for Alisa. My attitude for the week was, "Mama's sick. Do what you can."

But there's nothing like a holiday party to get you out of a funk. It was so nice spending time with other SB families last night. There were several I'd never met before, but there's always an instant connection, a shorthand, and a total acceptance in a world where kids are otherwise "different" and often teased. I was very proud of this party--I had it at GattiTown, my brother Lucas' new pediatric dental practice sponsored it so we could actually afford to go there, Santa was there to give each child a personalized stocking, and then all the kids received game cards and tickets to ride the carousel (which was handicap accessible!) and bumper cars. The party was 6-8, but happily we didn't leave until nearly 9:30 because families stuck around to talk with old friends and new ones and make plans to connect on facebook and at future SBAK programs. My best friend and her husband came, and so did my brother, so I had help with all the "work" (I fully realize how lucky I am that I actually get paid for this) as well as with keeping up with my own kids, who had an awesome time. Lucas stood in line for half an hour to exchange Nate's 32 tickets for 3 dum dums. :) But those dum dums were worth their weight in gold when trying to lure the kids out of GattiTown with no fits for a 1.5 hour drive home.

Unfortunately, we had to cancel the party I planned for today in a different part of the state due to a lack of RSVPs and impending snow. I was disappointed, but I was also so relieved I didn't have to travel 4 hours from home, with my kids, by myself, in bad weather, while recovering from being sick. So I woke up this morning totally out of the funk I had been in yesterday morning. It's partly that I'm feeling better, and partly because I'm now feeling the Christmas spirit, and I'm also just appreciating my kids being little. Yesterday I met a very surly teenager :) (who didn't have SB) and also heard stories of kids teasing about SB stuff like braces and pull ups as early as Kindergarten. So today, I just want to keep my kids little. They're so sweet (when they're not being rotten) and innocent, and I love experiencing things like snow and Santa through their eyes again.

This morning we looked out Georgia's bedroom window at the snow for a long time, with Nate exclaiming, "The snow is getting on that house! And that one too!" He asked why it was snowing, and I explained it as "frozen rain" which he thought was hilarious. He asked me if it was snowing on the train museum and if we could go see. Meanwhile, Georgia was emptying one of her drawers, bringing me one piece of clothing at a time. Each time I'd say "Thank you" and she would say something that resembled "You're welcome." Then we all piled in the glider to read stories. That's like the best feeling ever to a mama. Blake came home with some special Saturday morning McDonalds breakfast, then I got to TAKE A NAP! When I woke up, Blake was dishing out BROWNIES fresh from the oven! I immediately said, "Best day ever!" This afternoon has been filled wih coloring and building with leggos and Georgia running up to me with a book saying "Mama!" asking me to read it to her. This past week is forgotten. Life is great.

Today I cooked my first Thanksgiving dinner--and it was GOOD! I should say that Blake and I made our first Thanksgiving dinner because we were a team. My parents and brother came, and we had a very nice little Thanksgiving together.

Georgia ate enthusiastically.


Nate ate an unbelievable amount of sweet potatoes.

Lucas was stuck in traffic and running late, and we were totally going to eat without him, but he got there just in time. :)

Here is proof that sometimes my children play together like little angels.

Thanksgiving aftermath. I take this as a compliment.

Georgia ate her chocolate cake even more enthusiastically than her turkey.

She loves her brand new hot pink Christmas tree.

 And we had lots of quality play time with Granna and Pops.

And Uncle Lucas.

The last couple of weeks have been stressful and uncertain and just a little nutty, but tonight, our bellies are full, the kids are sleeping soundly, and we're just sitting in the glow of the Christmas tree(s) thinking about our good day. I'm thankful. Happy Thanksgiving.

School Decisions

I'm still in total denial that Nate will be in Kindergarten next year. This whole preschool thing has prepared me somewhat, but I can still pretend that it's just a little playgroup and not real school. But, I'm being forced to think about real school now. And that makes me feel all anxious and like my lungs are constricting a little.

I don't know why, but I have either the inability or unwillingness to think too far into the future. I don't think about how I'm going to die. I don't keep a surplus of food and extra cash in case of a nuclear holocaust. I don't think about what Blake and I are going to do when we're retired and the kids have left the nest. I don't think about who Nate will marry. I really haven't even thought about Georgia going to school. I just don't think about it. One reason might be that I know God's going to take care of us no matter what. I'm not afraid to die. (In the moment, I'm sure I'd be scared, but in general, I know where I'm going, and that it's good.) Bad stuff has happened to us in the past, and it hurt at the time, but it's always turned out fine or even great. I also know that the times when I worry and fret (like about Kindergarten), the reality is usually far less scary than what I worry it will be. So maybe to keep myself from needless worry, I just don't think about it. The furthest I usually plan for is what the kids will wear for the next holiday. :) (And I bought their Christmas outfits today!)

So yeah, ever since Nate's parent-teacher conference last month when his teacher mentioned there was a man observing Nate for a special program for students with physical disabilities, I have been worried and anxious. I talked with a friend who is a teacher, and she told me it's actually a great program at two schools in the city, and one of the schools is really close to our home. I called the school and asked to speak with the teacher over the program, and I liked what I heard. But then I looked up the school on greatschools.com, and it didn't get a very good rating. Then I talked with the counselor with the school Nate goes to now, and she told me that if Nate was in that program, he'd be in a self-contained special ed classroom for homeroom, then he'd go to a regular class the rest of the day. Then I spoke with another resource person in the school system, and he just vaguely "warned" me to stick with the least restrictive environment ... insinuating this wasn't a good program. More anxiety.

In the midst of this, I had called the counselor at his current school and asked to call an ARC meeting. (In Kentucky, that's the name for IEP meetings.) She didn't know that term, even though she's the person you are supposed to call to initiate ARC meetings. She said, "Spark meeting?" I don't mention this to make her sound stupid; I'm just saying this is more evidence that this school is not right for Nate. After explaining what an ARC meeting is, I told her I wanted to add a playground goal for his IEP because he has a hard time navigating the playground, and I feel it's keeping him from engaging with his classmates. And second I wanted information about him transitioning to Kindergarten, what programs are available to us, how does the "lottery" work for kids with IEPs, etc. She said she would gather some information and call me back.

She did call me back the next day and said she spoke with Nate's teacher about the playground situation. They had brought in a tricycle for him to ride--don't even get me started about this tricycle that he has to ride on a concrete pad, totally seperated from all the other kids, and only when they have enough hands for one of the teachers to be solely dedicated to helping him, which is not often--and that the PT is now working with him on using the playground appropriately. I told her I know about all of that, because I asked for the PT to work with him on the playground, but I want it in the IEP. Now, many people might think I am making way too big of a deal about the dang playground but first, it makes me mad that when they installed this brand new playground earlier in the school year, they gave NO thought to accessibility. I wish I had a picture of this playground to show you. Nate can "do" any playground he's ever been to. He can go up steps, across bridges, down slides, through tunnels, whatever. But this playground is all ladders and climbing structures and this crazy slide that the teachers don't allow any of the preschoolers on cause it's dangerous ... just hard stuff. And second, Nate already struggles with connecting with the other kids. It's November, and he can tell me the names of TWO of his classmates. His teacher says he's often in his own world. He has always played with adults--whether me and Blake or grandparents or therapists--and he just doesn't know how to play with kids his age. And I feel this playground issue is another huge barrier to him playing with his classmates. While they are climbing on this play structure, Nate is either running around it by himself or sitting in the mulch and throwing it up in the air. I ask him who he plays with at recess, and he says, "I watch the other kids play." Now tell me I'm upset over nothing.

She also gathered some information about the special program and transitioning to Kindergarten. She said it's way too early to have a transition meeting because the person who is evaluating him for the special program won't do his last evaluation until February, and they won't know about placement until around April. I explained that I don't want a placement right now. I want to know more about the programs and what our options are. That's when she told me that in the special program for which he's being evaluated, Nate would be in a self-contained special ed classroom and would go to a typical class from there. She didn't know what the evaluator was looking for or whether Nate would qualify for this program. I asked about the whole "lottery" system that our school district has--you have to apply to four schools, two close by you and two all the way across town, and you aren't guaranteed to get any of them. She said the lottery for Kindergarten is in January. I asked, Okay, if we don't know he's going to get into this program because his last evaluation is in February, and if we don't know if we even want him in this program, and if his transition meeting where we learn about these programs isn't until April, how do we know what schools to request in the lottery in January? She said, "Oh." She didn't know. She promised to find out more information, and so far I haven't heard back from her.

I took the day off today (It's funny to say that cause I had more work to do at home than I did at work!) so this afternoon I went to the school where they have the special program for which he's being considered. (Sorry to be vague, but this is the internet and all.) The front office notified the teacher--same one I'd talked to on the phone a couple weeks ago--that I was there, and she directed me to the self-contained special ed classroom. I have to say, I was really anxious, and a little emotional about this. First of all, it's Kindergarten. Second, this is a straight up special education classroom. I think special education is awesome for the kids who need it, and I'm not putting that down in any way. But you can understand that this is just not what I had pictured for my son. But as soon as I entered the room, I saw a kid I know! He has SB, and I've been working with his family a lot at work. The teacher asked me a little about Nate, and she quickly said that this classroom would not be for him. That class is for kids who have low IQs as well as physical limitations. Nate would be in the typical Kindergarten classroom.

She took me down to the Kindergarten class, and she said she actually had a little girl in there who had SB. Well, guess what--I know her and her family too! They were actually out on the playground at the time, so I was very interested in seeing this. The playground certainly wasn't as new and impressive as the one they installed at Nate's current school, but I looked around and saw that Nate would be able to access all the equipment! There were steps and slides and swings--we're good. Even better, there were three adults out there--the head teacher, an assistant, and an aid who was there to help this little girl when she needed it. She didn't hover over her or make a big deal out of it, and she was helping all the other kids too, but when this little girl wanted to get back in her walker or climb the steps up to the slide, the aid gave her the help she needed and no more. The little girl was totally included with the other kids and even got down with all of them to do push ups before going in, and they asked her to be the counter.

I had lots of questions about transportation, special equipment, therapies, the cafeteria, the gym, etc, so the teacher took me to speak with the school counselor. She was very happy to talk with me, and she was WONDERFUL. She said this school is actually intended to be for kids who just need a little extra support with the physical stuff in regular classrooms. Only in the last two years have they gotten more kids who have low IQ in addition, so they've initiated the self-contained classroom for that reason. But their goal is always the least restrictive environment. They have enough aids to provide assistance to the kids when they need it. With everything they do, they think about accessibility. All the kids at this school think of wheelchairs and walkers and braces as just part of normal every day life. The typical kids don't bat an eye at kids who need a little help. In fact, they're the ones protecting the kids in wheelchairs and such. For example, recently someone stepped in front of my little girlfriend in Kindergarten when she was in her wheelchair, and one of her classmates set that kid straight! There are special bathrooms equipped with whatever you need. And Kindergarten drop off is right beside the Kindergarten door so the little guys don't have to walk so far in all the hustle and bustle.

I asked her my questions about the lottery and what if Nate doesn't get accepted to this program, etc. As she was talking, I realized that Nate isn't being evaluated to see if he's doing too *well* to qualify for this program. They're evaluating him to make sure he doesn't have more needs than they can handle. Which isn't the case. She told me that just with his diagnosis and IEP, he is guaranteed a spot at their school. She also said that although she's biased, she knows this is the best place for Nate and kids who have physical disabilities. They know what they're doing, and they're good at it.

Here's the thing. The school where Nate is now is very close to our home--less than a mile--and all the kids in our neighborhood go there. It's a very new (about 3 years old) and nice school. But it sounds like Nate is one of their very first students with a physical issue going on. And you can tell. His teacher is great, and I really like her and most of the people I've encountered at the school. But they don't think about accessibility, and call me selfish, but I don't feel like being the trailblazer there. I still don't know what I'm doing, and I often don't even know what to ask for. I am perfectly willing to advocate and fight for Nate whenever necessary (and do so especially with Medicaid on nearly a weekly basis), but why would I choose to do that when there is this awesome school already equipped for him and ready to meet his needs, and it's like 2 miles from our home? It's a no-brainer.

So like I said earlier, all that worry and anxiety over a "special" program, when the reality is that it's going to be just what he needs. I'm really excited about it, actually. It's making Kindergarten seem less scary knowing that he'll be in good hands.

Halloween, the missing kitten, and Georgia the peanut

Here are Nate and Georgia as Captain Hook and Tinkerbell!

They looked very sweet and both liked their costumes. Nate got so many compliments on his great costume! My mom got him the Disney Store version of Captain Hook, and it is amazing. Georgia, on the other hand, got a $20 Tink costume, and you could tell the difference. :) Next to Nate, it was a pitiful costume, but she looked really adorable in it.

They had several chances to wear their costumes and trick or treat. A couple weeks ago we went to the Halloween Party at the Louisville zoo with our Bible Study group. Both of the kids fell asleep on the way there and Nate especially was in a pretty sour mood until he got some candy!

 Jack Sparrow said, "Hello, Captain!"

Then last Friday we went to an organization called Dreams with Wings' annual Pumpkin Stroll. There were thousands of jack o lanterns lining the sidewalks and all over the lawn on the Bellarmine University campus. When we first got there, before it even really got started, Nate fell flat on his face! It didn't look too bad that night, but by the next day it looked like this:

He got over it soon enough though. We were pretty special, because we were "with the band"! Our babysitter Alisa and her family and some friends have a band called Mike Bush and the All Stars, and they play at events like this. They were awesome! They played for like 3 hours, and my kids danced pretty much the whole time. (That's Alisa dressed as grapes. She didn't realize until earlier that day that she would basically be a walking latex hazard for Nate! Ha! So after she put on her costume, he wasn't allowed anywhere near her. :) Great costume though.)

Nate got to play the drums during the show! Except the drummer gave him the drum sticks that were like rubber, and they were quiet? I don't know how to explain them because I have no knowledge of drum sticks, but anyway, you couldn't really hear Nate. I saw his little lip starting to stick out, so I went over and helped him, but after awhile, he looked like he was going to wail. So I ushered him out and sat down with him. (This was about the time Georgia fell asleep in my arms.) Later that night, I asked him if playing the drums was his favorite part, and he said, "No! Nobody could hear me!" :)

The next day, we went to an SBAK playgroup and carved pumpkins. Here's Georgia staring down Andrew for his brownie.

Okay, so Andrew has a big brother (no SB) whose name is Nathaniel (sometimes called Nate) and he is also 4, and he also loves Thomas the train. He and my Nate hit it off immediately. They went upstairs to play trains for awhile (Nate wore last year's Thomas costume that day), then we went outside to carve pumpkins. Nate saw that Nathaniel had a piece of candy, and he said, "Oh, I can't have that piece of candy." Nathaniel said, "No, I already put it in my mouth, but let's go inside and get you a piece, dude!" He was so funny!

One time Nate and Nathaniel were walking by, I heard Nathaniel say, "Okay, Nate, the first thing I'm going to teach you is how to climb a tree." Ha! Nathaniel started shimmying up this tree like a monkey, and Nate just stood there with his lollipop and said, "That tree is too tall for me. I can't climb it." So I showed him a tree right next to that one that had a lower branch and told him I'd help him climb it. He looked at his lollipop and said, "But I can't climb trees with candy." You are climbing this tree, mister! So I heaved him up in this tree, with Nate complaining the whole time (notice the yellow dum dum in his right hand), but he stopped whining long enough to say cheese for a picture.

After I got him down, Nathaniel started talking about the next thing he was going to teach Nate, and Nate said, "I think we should go in the house and get more candy."

After our playdate, the kids and I went to Aunt Mindy's house to spend the night! We haven't been there since last Halloween! It was trick or treat night there, and at first Nate had a hard time understanding why we were giving all of Mindy's candy to other people, he soon caught on and had a BLAST giving out candy himself. He stood on the sidewalk and called out to trick or treaters, "Anybody want some candy?! We got candy here!" Like a little salesman! It was hilarious. Georgia was also excited and just walked up and down the sidewalk over and over.

The next day, we came home, I took a nap! and then it was time for trick or treating in our neighborhood! Check out Maggie and the neighbor's big dog, both dressed as bumblebees. :) I bought Maggie that costume when we first got her (when she was our "only child") and she's worn it every year since.

Oh, the kids had such a great time. It was a race for candy! We went up and down our street, stopping at every house that had candy. Georgia insisted on going up every driveway, whether they had candy or not, and she got very mad if she didn't get something at the door.

When we came back home, Georgia rifled through our candy bowl. Turns out she just wanted to hold the candy--she thought it was just noisy little toys. Until I gave her a lick of my sucker, and then she was hooked. :)

Well, we had a great Halloween, but there was a little bit of a damper on it because we're missing one of our kittens. :( Last Thursday around noon, Blake let the kittens out on the back deck to play, as he always does when the kids are eating lunch so they don't bug them. Well, Allee Galloo came back, but Kooka did not. :( We haven't seen her since. I put fliers up around the neighborhood and one on our porch, so lots of people saw it while trick or treating and told us they would keep an eye out for her. I actually got three phone calls, but they turned out to be different gray kittens. We miss you, Kooka!

Her sister Allee was pretty distraught for a few days, but she's adjusting now. She has really taken up with the kids lately. She LOVES sleeping in Nate's bed, and he didn't like it for a couple of nights, but now he wants her in there. Sometimes he wakes up in the middle of the night and yells, "KITTY!!!!!" That's fun. Georgia follows her around meowing. She's really good with them and lets them pet/manhandle her.

So Georgia had her 15 month check up this week. This child still weighs just 21 pounds, 4 ounces! She could still fit in her baby carrier! Nate weighed this much at 6 months! :) She's in the 25th percentile for weight (for those that don't know, that means 75 percent of babies her age weigh more than her). She's 30 inches tall (45th%). She's just a little thing. But this girl eats like a horse. I'm not kidding, I have no idea where she puts it all. She eats nonstop all day long, and when she does eat meals, it's a lot of food! She's also sleeping very well these days. I'm a little ashamed to admit that we still use a swaddling blanket with her! We wrap it around her arms when we put her down, just to help her feel snug but also because she won't tolerate an actual blanket on her. One day Blake said he was watching her on the video monitor after he put her down for a nap, and she wrestled her arms out of the swaddle blanket, stood up and threw out all of her stuffed animals and the blanket, and laid down on her belly and went to sleep.

As of last week, she is now officially weaned from nursing. It was very gradual and pretty much on her terms, and I have to say I am really proud of myself for nursing for 14 months! When Nate wasn't able to nurse, I didn't know if I was capable of it, but this was a great experience with Georgia. I've noticed she still needs that direct contact with me, but now it's in the form of snuggling! Which is awesome, because she's never been a snuggler. She wakes up around 6:30 am and wants to come to bed with me. She'll snuggle in the crook of my arm for 5 minutes. Then she'll get up and sit with her knees on the bed and throw herself over my belly and lay like that for a couple minutes. The she climbs on top of me and lays belly to belly on me with her head on my chest. It's very sweet, and I enjoy it (unless I haven't had much sleep!).

Well, that's a long update, and we have a very big day planned for tomorrow. Nate has been asking to go to the train museum since ... well, since the last time we were there on Labor Day. So tomorrow he and Blake are going, while Georgia and I meet our girlfriends for a little shopping trip at Ikea! Have a great weekend!

Much needed updates!

A week and a half ago I posted about the Spina Bifida Worldwide Day of Prayer, and I haven't updated because there was news I wanted to share but didn't have permission yet. The day of prayer started in response to one woman who is pregnant with a baby who has Spina Bifida, and she was considering terminating the pregnancy. Last Wednesday was her first appointment with a pediatric neurosurgeon (and I have to say, most people who terminate do not go through with this step, and it's very important), so that was the significance of making that the day of prayer. We prayed for her to have an open heart and mind and for the doctor to give accurate and hopeful news.

What an amazing day that was. There was so much excitement and anticipation leading up to it, as we (other SB moms and I) spread the word on our blogs, through emails, to our church groups, and on Facebook. On Facebook alone, there were THREE THOUSAND people who committed to praying at the same time! And that does not even count the numerous prayer chains, prayer groups, family members, coworkers, and strangers who were not on facebook but heard about it anyway. And let me tell you, it was powerful, and it felt great. I knew that, no matter what this one mother decided, there were thousands of people with their eyes toward heaven praying for the futures of babies with Spina Bifida, and nothing bad could ever come from that. It was a rush.

That night, I kept checking my email for an update from the mom about her visit with the neurosurgeon. I finally went to bed and was reading, but all of a sudden I decided to come back downstairs and check my email again. And there was her update. The neurosurgeon told her the baby's lesion was low and small, the baby was moving its legs and looked great, and it has no signs of hydrocephalus. What does that mean? Pretty much best case scenario. She said she and her husband felt hope for the first time in weeks. They decided to keep the baby.

Praise God!!!!! How amazing is that? I still haven't gotten over it.

And yet, even after seeing the amazing power of prayer, I sometimes still have trouble practicing it in my own life. Just this weekend, I realized how terribly worried I have been about Nate. Not just about one thing, but many areas.

1. His school. Yes, I know he's just in preschool! A couple weeks ago I went to his parent-teacher conference, and his teacher mentioned that there is a man coming to observe Nate for a program for children with physical limitations to see if he qualifies, and he will be at the meeting where we discuss Nate's transition to Kindergarten. First--whoa--I have to start thinking about Kindergarten already?! And hold up! A special program?! Still, I'm getting anxious just typing this. I wasn't expecting that. I just thought he'd go to the same school he's in now, with an IEP. I asked, aren't there other kids with physical issues at this school? She couldn't think of any. Really? So I've been doing a little research about it, and maybe it will be a good thing. He would be in a regular classroom all day--they'd just maybe have an aid or co-teacher in the class to help Nate (and others) when needed. Then there's the whole issue of which school Nate should go to next year, and we're looking up test scores and ratings. Then there's an issue with the playground at school--there is just nothing on it that Nate is able to do. I hate saying that because I am definitely NOT one of those moms who says such things in front of my son or announces what my kid can't do, but the reality is he can't do anything on this playground. It's not at all accessible, and it's hard. They won't even let the preschoolers on parts of it because it's dangerous. So Nate is just running around by himself or getting in trouble for throwing mulch--well, what do you expect him to do? The PT's answer to this was to bring a tricycle for him to ride. Um, that would be great, except he'd have to be 100 feet away from all the other kids to ride the trike on the concrete pad, and he already has trouble engaging with the other kids--that's even an IEP goal! I'm just confused and not happy, and I'm calling an IEP meeting, dangit!

2. Nate has some major sensory stuff going on right now. For about a month, he has been putting his fingers in his mouth. Why? I have no idea. Apparently he needs "oral sensory input." But, it's cold and flu season, and that's just not sanitary. So I bought him this chewy necklace that's specifically made for this purpose, and we're encouraging him to chew on that instead of his fingers until this passes. Now he's getting in trouble at church and at home for swinging this necklace around and hitting others. Sigh.

3. His seizure meds come in sprinkle caplets, and twice a day we have to mix them in pudding or yogurt or something. And twice a day it's a battle. So at our last visit to the neurologist, we asked if there was a liquid version--yes! The way it's mixed, it only lasts two weeks, so we have to refill twice as often, but it was so worth it when for two weeks, we could give him his medicine twice a day with no fight. The second time we picked it up, the pharmacy said that Medicaid is now refusing to pay for it. Medicaid has never refused to pay for anything. So after our primary insurance, it was going to be $45. Twice a month. No, we aren't going to do that. So now we're appealing it and back to the sprinkle caps and hating it. I know this sounds like a very minor thing, and it is, but it's discouraging when it was just so easy for two weeks, and pretty much nothing is easy with Nate.

4. Potty training is stalled. I don't even really want to go into it--exhausting.

This has been all that Blake and I have talked about. What do we do, what are we doing wrong, how do we fix this, why is this happening. On Sunday I realized--I haven't prayed about this stuff. Well, that's not technically true, since all of these overarching issues are ones we've been dealing with for awhile, and I finally get to the point where I just give it all over to God. But then I take it back without really realizing I'm doing it. So that's what I'm doing again. I don't know the future, and I often don't understand Nate. I have no idea what school he should go to or if it even matters! I don't understand sensory issues, and I have no idea what to do to make it better. But I'm very glad that God knows the future and will lead me in the right direction if I trust Him too. And I'm very glad that the God who knit Nate together in my womb knows him inside and out and understands all of his quirks. It's going to be okay.

Even though I worry about him, Nate makes me smile more than anything. :) Yesterday he told me, "I like trains. Trains are awesome! Click on over to I love toy trains dot com!" What? Where does he come up with this stuff? I did look for that web site and was relieved that it doesn't exist, because I would have wondered about Nate sneaking on my laptop when I'm not around! Tonight we had cheese canneloni for dinner, and he was very cute trying to pronounce it. A few minutes later, out of the blue, he said, "This is great pasta." Ha! And tonight he and Georgia were chasing each other around the living room, and he said to her, "Come on, little fella!" It's just fun to sit down and have a conversation with him.

Georgia is apparently going through a growth spurt, because all she's doing is eating and sleeping. She often eats more than Nate does, and she is always ready for her next snooze. She's now in that phase where she says, "Uh oh" and THEN drops her cup in the floor! Stinker! She is saying more words every day and can almost hold a little conversation with you. A few days ago, Alisa said Georgia pointed at her banana. Alisa said, "Oh, do you want some of my banana?" Georgia said, "Yis." Alisa said, "Yeah, how does that sound?" Georgia said, "Good." And then she ate the whole thing! She will be 15 months in 4 days.

The weekend before last we went to the Halloween party at the zoo, where the kids got to wear their costumes for the first time. Nate was in a really foul mood until he got to eat some candy. All the way home he repeated, "That was so much fun." We have a big upcoming weekend planned: A pumpkin-carving SBAK playgroup Saturday afternoon, then the kids and I will go to Aunt Mindy's house for trick or treat night in Berea, then on Sunday we'll head back home for trick or treating here! Oh, the candy.

Let's Pray!

Do you ever get a little scared when you have an idea and then it actually takes off? That's what I'm feeling like now! It is really humbling (like in a scary sort of way) when hundreds, possibly thousands of people are reading something I wrote and didn't even really proofread, lol! I feel like I am leading a lot of people in prayer, and I am really scared of leading people in prayer!

But then I remember who is behind all of this. It is not me. It's all God--all by Him, all for Him.

If you are now thoroughly confused, let me explain. Many of my SB moms and I are all fired up this month about Spina Bifida Awareness Month, and especially about giving expectant moms hope that their babies are perfect gifts from God and they do not need to terminate their pregnancies. We want to DO SOMETHING. But we all keep coming back to "But all we can do is pray."

So, what if we all pray about it. And we do it at the same time. And we invite our friends and families and churches and strangers to pray about it with us. Imagine what could happen.

So I created a Facebook event called the "Spina Bifida Kids Worldwide Day of Prayer." We will pray this Wednesday, Oct. 20, at noon EST. As of right now, more than ONE THOUSAND people have committed to pray. And I won't be surprised if the ground shakes a little bit.

Below is what I wrote for the Facebook event, and it lists our specific prayer requests. If you have a facebook account, follow this link to say you're attending. If you're not on facebook, just let me know if you are participating.

***
October is Spina Bifida Awareness Month, and we SB moms have on our minds, more than anything, the precious unborn babies who are so often terminated before they even have a chance to prove their lives have meaning and value to the world. To say that 50% of all Spina Bifida affected pregnancies are terminated is a conservative estimate. But we SB moms know there is no reason to terminate a baby because of SB. Our children are be...autiful and intelligent gifts from God who have every opportunity to live full, productive, and totally normal yet extraordinary lives.
So we proclaim Wednesday, October 20 as the Spina Bifida Kids Worldwide Day of Prayer. We believe in the power of prayer, and we are excited at the prospect of many people praying at the same time for these unborn babies. We moms can make a difference individually and collectively, but that is nothing compared to the change that can come if we have God on our side.
We will begin at noon EST. Pray for as long as you feel led. Pray individually or with another person or group. On your knees, at your desk, while driving your car … the logistics do not matter.
Here are a few things you can pray about specifically:

1. There is one woman in particular who is on our hearts. God knows who she is. She is expecting a child with Spina Bifida, and she is afraid and considering termination. Today (Wednesday) is her appointment with a pediatric neurosurgeon to find out the severity of her baby’s case and to learn more about the diagnosis. Please pray that she will go to this appointment with an open heart and mind, that the doctor will give her a prognosis that is realistic and hopeful (we believe these adjectives are not mutually exclusive when talking about SB), and that most of all, God will give this woman a peace beyond understanding and a clear indication that she should keep her baby or give it up for adoption. There are many mothers willing to adopt this baby.
2. Obstetricians are usually the doctors who first diagnose Spina Bifida based on a prenatal ultrasound. Unfortunately, most know very little about SB except for what to look for on the ultrasound. Many of us were told by our OBs very scary and inaccurate information, such as “Your baby will likely not survive,” “She will be a vegetable,” “Terminating is the most loving thing you can do for this baby.” If this is the first time you’ve really even heard of SB, and a doctor you trust tells you this, you’re probably going to believe it. Please pray that these doctors will be educated about the SB prognosis so that they can give the diagnosis accurately and compassionately.
3. We SB moms will always remember the day we received the diagnosis as one of the most terrifying days of our lives. An initial grief response is denial, which often presents as “Please make this problem go away.” Termination is offered quickly. Please pray for these mothers and fathers, that they will first and foremost trust God to get them through this scary and uncertain time instead of letting fear guide their decisions. That God will draw near to them and make His presence known, as He did for so many of us. That these parents will be so filled with His peace about the future and love for their child that they will consider carrying the baby to term the easiest choice.
4. These precious babies are absolutely innocent and helpless. They are being thrown away because they are not “perfect.” Not one of us is perfect. Please pray for the lives of these babies to be spared. That each movement and kick will remind the mother that God knit that baby in her womb exactly as he or she should be. That their lives will bring glory to our Father.
5. Many of us SB parents cite the support of our family members and friends as the biggest comfort during the time right after receiving the diagnosis. But there are also families and friends who are unsupportive and even encouraging of termination. Please pray for these family members and friends, that God will use them to minister healing to the parents’ breaking hearts. That they will be wholly supportive, not hurtful, and they will lift up and help these parents as their raise their child.
Feel free to add other suggestions for what we should pray. And please pass this on to friends, family, church prayer groups, prayer warriors, pastors, and strangers.
“Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. For where two or three come together in my name, there am I with them.” Matthew 18:19-20 (NIV)