Our week in Cincinnati

This is a pretty private topic for Nate, but it's also an important subject in the Spina Bifida world and marks a big change for our whole family. So I'll do the best I can in respecting Nate's privacy as well as letting everyone understand this challenge.
Because Nate has Spina Bifida, he gets constipated very easily and then has accidents. We have tried many, many methods of helping him stay healthy and clean, but nothing has worked. Several months ago I started hearing about Cincinnati Children's Hospital's Colorectal Center, which is the first and only place in the world that has a well staffed, comprehensive program that is 95% successful in helping children achieve bowel continence. It took a few months for the stars to align, mainly because this program requires you to spend over a week in Cincinnati. We did it this month.

Nate and I went by ourselves on a Thursday. He had to have a test that looked at his belly and also cleaned him out good. The next morning we went to an orientation, had a belly x-ray, and met with a doctor and a nurse who got us started on an enema program. About the trip itself, I actually really enjoyed it. Sometimes Nate and I go to his appointments just us, and I love that time. We spent the night in a hotel and had a great heart to heart talk about starting this potty program. He didn't want to, but we talked about all the advantages of it and he seemed to start to see the benefits. We agreed that now that he's six and getting ready for first grade, it's time to get him clean.

Friday evening we came back home after a really long day at the hospital, stopping at two pharmacies for supplies, and a 2 hour drive home. And then we had to do our first enema that night. It was a disaster. I couldn't get it to work, and Nate was so upset by the whole experience. We all ended up in tears, and we were unsuccessful to boot. We gave up for the night. The next morning we tried again, and this time, Nate was totally unwilling to cooperate. He was begging me not to do this to him. It was absolutely heartbreaking. In a moment of desperation, I offered to buy him an iPad, and he declined. :) I had to ask Blake to come home from work, and we convinced Nate that the problem the night before was me and that daddy could do it better. He finally agreed. We had to do two that day and one more Sunday morning--this isn't typical, just an effort to get him cleaned out good.

On Sunday we went back to Cincinnati, this time with my mom and Georgia with us. Monday through Friday, every day we did his enema first thing, then went to the hospital for a belly x-ray and gave a report to our nurse about any accidents, how it went, etc. After that, we could have some fun.

We went swimming in the hotel pool a couple of times. This pool was freezing!!! Nate didn't care--he was a little fish. Georgia sat on the top step the whole time and had a blast.

We went to the zoo one day, and it was HOT!!! So miserably hot. But both kids touched an alligator.

We went to the aquarium one day.

And Nate's favorite, of course, was the day we went to the train museum!

Here he is enjoying some hospital cafeteria pudding. :)

Every morning, it was a struggle to get Nate to cooperate with the enema, but we used bribery to coerce him. :) If he would do it without (much) complaining, he would get a special treat that day--a new "pet" from the gift shop at the aquarium, ice cream at the zoo, etc. Despite the fact that he didn't like it, the program was very successful! He was basically clean the entire week! Every day the doctors reviewed his belly x-ray, and a couple of times we tweaked what would go in the enema (saline and varying amounts of glycerine soap). I reminded him all week how nice it was to not have to worry about accidents.

We came home on Friday, and Nate is much less resistant to the enema program. We used bribery at first, but now just the prospect of getting to text with daddy while he sits on the potty is enough to get him to run upstairs. :) He has a blast texting poop jokes with daddy.

It's been a big adjustment for all of us. For a long time, we had hopes that we would be able to handle this issue with less ... this isn't really the exact word, but something like ... invasive measures. Something a little more "normal." But we know we tried everything and this is what has to be done now. For us, this is the new normal. It was difficult to watch him struggle with this at first, and it's so much easier on us now that he doesn't mind it. Still, it's been stressful. We've had to adjust to doing a one-hour bathroom routine every night. And in a weird, irrational way, it's felt like admitting defeat to Spina Bifida. But I know that defeat would be not doing anything about this problem and allowing him to stay in a pull up indefinitely. We're fighting back.

I can't say enough good things about this Colorectal Clinic. We wouldn't have known where to even start without them. They say we can come back in a year or two and try a different program. But for now, this one works well. If you'd like to read more about it, you can see an overview and more in-depth info here: http://www.cincinnatichildrens.org/service/c/colorectal/treatments/bowel-management/

I'm still recovering from last week, but I'm happy with how relatively quickly Nate and all of us have adjusted to the new routine. Progress!

Georgia's Third Birthday!

I wish she could stay 2 a little longer because 2 has been so sweet, but I'm loving watching this little girl grow! Today was Georgia's 3rd birthday. We decided earlier this summer that we wouldn't do big birthday parties, but instead we went on a family weekend to a waterpark and then had a little birthday dinner at home for both Nate and Georgia. July 31 is Georgia's big day. :)

We went to the store the other day to pick out what kind of cake she wanted. It was very hard for her to understand why we couldn't just bring a cake home with us then! It was also a difficult choice among her favorite characters: Barbie, Dora, or Hello Kitty. Kitty won! (The birthday girl may have poked a finger in the icing to try it out.)

Look at that posing!

Look at Nate, haha!

Cake mouth

She got a Mermaid Barbie to go with the Barbie movie she's been watching the last few weeks.

She also got a Hello Kitty movie, and then a bicycle helmet. She was like, "But I don't have a bike."

Well now you do!

Happy birthday to my big 3 year old! She is so sweet and funny, and I love her more every day!

Waterpark pictures!

We went to a waterpark for Nate and Georgia's birthdays, and all I used was a little waterproof disposable camera. Not the best quality, but they're pretty cute!

He loves swimming underwater. Usually his eyes are open though!

Nate got brave enough this time to go down one of the bigger kid slides!

Georgia has loosened up a little since then (about a month ago), but she really didn't like water much when we went to the waterpark. She wanted to swing in this little baby swing the whole time. One time I told her I was going to fall asleep if I had to push her in this swing any more.

Headstand?

Summer so far

I am tired. This pregnancy plus this busy summer is kicking my butt. So here's a recap.

First, Nate graduated from Kindergarten, and I totally didn't expect to cry through the whole thing! It all started when the teacher leading the thing started talking about "your babies are first graders now." Not cool, Miss Stone! They all got to walk across the stage and get their certificates, and then they sang a couple of songs, and it was all very cute. Nate had the option of coming home early but he wanted to stay at school and finish his work. :)

The next week began the kids' very busy summer schedule. My goal for the summer was to give the kids opportunities to get out of the house and get interested in activities, and also to give them time to just hang out at home playing and doing a bunch of nothing. I don't know that I hit the right balance, but so far so good.

On Mondays, Georgia has dance class. It's a class of 2 year olds, and she's probably the oldest 2 year old in the class. Georgia loves everything about it--the outfits she gets to wear, Miss Audra the ballerina, prancing around doing new dances, etc. While most of the other little girls are just running around like toddlers do or throwing tantrums, Georgia is paying very close attention to Miss Audra and trying to do exactly what she does. When we signed up, I didn't realize I had to be in class with her every week. But I usually just stand back and watch her because she does so well. I think we'll move her on to 3 year old dance after this class is over.

On Tuesday mornings, Nate has swim class. Nate LOVES swim class. He loves swimming period. I took him to a trial class to make sure it was a good fit for him, and he smiled from ear to ear the entire time. Afterwards, the instructor told me that Nate could stay in that class because even though he wasn't quite as strong as the other kids at that level, he doesn't have any fear and is totally comfortable in the water. He thought he might need to do this level class a couple of times before moving on. He's not swimming independently yet, but he's pretty close. I've been swimming with him a few times this summer, and he does a lot on his own. Nicole laughs because when he's in the water, he's constantly dunking his head to look under water. This was from his first class of the summer.

Then on Tuesday afternoons, Nate is taking piano lessons. Oh my. Nate loves the piano, but he mostly just bangs on it and calls it a concert. He tries to make up little songs, and sometimes it even sounds decent. He really wanted to take piano lessons to learn to play real songs. But I don't think he realized piano lessons are nothing like his jam sessions at home. The first day, the teacher kept the piano closed most of the time and talked mostly about how to sit at the piano, the numbers of each of his fingers, etc. He kept saying, "Why aren't we playing the piano?" So far she is only working with him on the black keys, and he's very frustrated by this. I have a hard time even watching these piano lessons because he is so distracted and doesn't listen well and just tries to do his own thing. I can tell she gets frustrated with him, but she keeps plodding along. I'm not sure we will continue piano lessons after this summer. :)

On Wednesday mornings, Nate has handwriting tutoring. I found a tutor who does a program called Handwriting Without Tears, which comes highly recommended by everyone. This woman is an OT in a nearby school district during the year, but agreed to tutor Nate this summer. I really like the program, but of course this isn't Nate's favorite activity. She makes it fun for him and he doesn't mind the tutoring sessions so much, But he's supposed to do 5 minutes of homework every night, and we usually end up doing all of it in one or two sessions (bad mama), and it takes a really long time. So he doesn't like the homework. But I think his handwriting is improving some. I'm also thinking about putting him in a handwriting camp at the end of this month. That's really our biggest concern with first grade, so we're trying to do all we can to get him caught up a little.

On Wednesday afternoons, Georgia has swim class, and this one is a mommy and me class. Only for my kids would I be getting my pregnant butt in a swimsuit on a weekly basis. But unlike Nate, Georgia is afraid of the water and really needs exposure to it. When we go each week, she is usually clinging to me for dear life for the first part of the class, but she gets braver. She's doing great actually with the swimming and is warming up to getting her face wet. She still hates going underwater, but we're working on it. This is a picture of her ready to get in the sprinkler at Memaw's house. She really likes wearing cute swimsuits better than swimming.

On Thursdays Nate still has OT and PT, and Fridays are usually free unless we have to reschedule handwriting for that day. Add in doctor appointments, hair cuts, and all the other stuff that creeps up, and it's a really busy schedule to keep up with. But the kids are having fun and learning some new things.

There have been a few other noteworthy events of the summer so far ...

We went to the zoo with Granna and Pop.

We went to a wheelchair racing clinic at SBAK.

In another step toward becoming a big girl, Georgia gave up the paci. Not without a fight! But she did it, and the paci fairy brought her a new baby in exchange for the pacis. After the first couple of days of asking for it every now and then, she's done great, and I'm glad it's gone!

I have gotten bigger.

We went on a little weekend trip to a water park and to see trains.

Nate turned 6! This is the first year we haven't had a big party with a house full of people. It was very different, but it was nice. We tried to make it very special for him. It seems impossible that Nate is 6 years old!

And for the last part of June, I went to the Spina Bifida Association National Conference, held in Indianapolis this year. This was my 3rd year going to conference, and as usual I loved every minute. It was so much fun getting to meet people I have only known through message boards or Facebook for a long time, but we already knew each other so well. One of the highlights of the conference for me was getting to present a project to other SBA chapter leaders on my "Delivering the Diagnosis" project, which was originally my thesis project and informs doctors and expectant parents about Spina Bifida. It's now a national program!!! I am so proud! I also learned a lot from the sessions and other people I met there. I think the major thing I took away from conference this year was to really work on independence skills with Nate. Those sometimes come harder for kids with Spina Bifida, but they make a huge difference in their lives. It's also important for parents to back off at some point. For example, I saw a man about 25-30 years old using a wheelchair and going through the breakfast line. His mother was behind him and pointed out the strawberries. He says, "I'm not really a strawberry guy. I'm more of a watermelong guy," as he put some watermelon on his plate. His mother said, "I am encouraging you to eat at least one strawberry." Oh lord, I thought. Note to self--back off on the overbearing parenting when your kid is old enough to grow a beard.

So there's June in a nutshell. At the end of this month we'll be traveling for a week-long appointment for Nate at Cincinnati Children's Hospital's Colorectal Clinic. And in August we'll be having a baby! Whoever called summer a "break" obviously didn't live at the Payne house.

Father's Day Interview with Nate and Georgia

So far Blake has spent his Father's Day by getting up with the kids and letting me sleep, making cheesy eggs, bacon and biscuits for breakfast, and going to Home Depot to get stuff to fix the fence today. Later he'll grill out for his Father's Day cookout. Does it sound like he's having a crappy Father's Day? Actually, these are the things that Blake enjoys--spending time with his kids, teaching them lessons, cooking for us, and puttering around in the yard.

Having children changes everyone. But it has been a dramatic change for Blake. Since Nate's birth, he has determined to be a good dad, no matter what the cost. That meant giving up some things and making some big life changes. One of the things I admire most about Blake is that he is on a daily journey to be a better person, better husband, and better dad.

And he's a great dad. He teaches the children about God, he disciplines them even though it hurts him(this is one area where he has made recent improvements), and he also indulges them often because he loves to see them happy.

Georgia is very much the Daddy's girl. When Nate and I went to Boston for 3 weeks last fall, Blake and Georgia bonded big time, and now she would usually rather have her daddy than anyone else. Georgia isn't the best sleeper, and she would like to sleep with us every night if she could. But mama doesn't sleep well with kids in the bed, so I've had a rule since Nate was a baby that once the baby is sleeping through the night pretty well, they are in their own bed. Blake sleeps just fine with kids in the bed and knows how much they love snuggling, so sometimes he lets one of the kids sneak in bed with us anyway. One night last week, Blake went to bed early while I stayed downstairs reading. Apparently Georgia was up and down out of bed and Blake finally let her climb in our bed but told her she had to be quiet and go to sleep or else she would get him in "trouble" with mama and I'd make her go back to her bed. When I came upstairs and opened the door to our room, Blake was asleep and Georgia sat upright on my pillow and said, "Is Daddy in trouble?" Haha.

So to celebrate Blake on Father's Day, today I interviewed the kids with questions about their daddy.

How old is Daddy?
Georgia: 3 years old
Nate: Nuh uh! 33 years old
Georgia: Daddy is spelled 3-H-9

How much does daddy weigh?
Georgia: (holding hand up to my face) This.
Nate: Um, I don't know, how about 30 pounds. I don't know, maybe at the top of the pounds?

Where was Daddy born?
Georgia: I don't know.
Nate: In Kentucky, I think.
Georgia: No, he wasn't.

What is Daddy's favorite color?
Nate: Um, blue and green.
Georgia: Um, blue and green.

What is something that Daddy always says?
Georgia: Um, "Oh my gosh"
Nate: No.
Georgia: Um, letters
Nate: Uh uh, you don't know it
Argument ensues: Uh huh! Nuh uh!
Nate: He says, "Don't be mean to each other."

What does Daddy do at work?
Nate: Pay money? Um, work?

What is the first thing Daddy does every morning?
Georgia: Tells me not to get stuff.
Nate: Says not to steal anything.
Georgia: And daddy likes to get toys ... and he likes to play with ponies.

But what's the first thing he does when he gets up in the morning?
Nate: Goes to work

Daddy laughs when you do what?
Nate: Silly things! Funny faces.
Georgia: And he likes some ponies.
Nate: And he likes trains, not ponies.
Georgia: I like ponies. Nate, do you like ponies?
Nate: What are you typing?

What is Daddys favorite food?
Nate: Uuuum, burgers
Georgia: Burgert?
Nate: Burburt
Georgia: Berberberber
Nate: Yayayaya
They continue to make funny sounds, it turns into a song they sing while holding hands, until they are giggling so hard they can't continue.

Why do you love Daddy?
Nate: Because he loves us!
Georgia: Um, because he yuvs us.

Then they go back to their song.

We love you, Blake! Happy Father's Day to a great daddy!

Picture Update

So here's a little bit of what we have been doing the past month or so.

One day I got to go to Churchill Downs to see the races from a suite! I had never been, so it was fun. Although I realized if you're not drinking or gambling, horse races aren't all the great. Here's me being pregnant.

We've recently moved the trampoline from the toy room to the living room, where the kids tend to jump on it more. They also fight over it more. In one particularly gruesome battle, yesterday Nate pushed Georgia off the trampoline mid-jump, and she landed in the corner and got a really nasty knot on her head. (Nate got in HUGE trouble.) She accidentally paid him back today when she went to give him a big hug, and they both toppled off the bench they were sitting on, and Nate got a matching knot on his head.

Georgia still falls asleep pretty much anytime the car starts moving. This was from our trip to see Mindy and Scott and the babies.

Blake borrowed his mom's riding lawn mower for the summer, and I can't get him to come in the house anymore. Every night he's doing something on this mower. I'm pretty sure he mows a couple times a week. Tonight he's "thatching" something? I don't even know what that means. And one night I looked out the window and saw him pulling a big bundle of tree branches with the mower, and not knowing I could see him, he had the biggest smile on his face at his adventures. Like a kid with a new toy.

(These pictures are a bit out of order. Blogger does not make uploading pics easy.)

For Mother's Day, Nate brought home a bag full of hand made stuff for me. Here was his card. It says all sorts of sweet things like "You're the best mom in the world" and "I want to be nice to you." I'll pull this out when he's a surly teenager (or on the days he's a surly 5 year old).

Refridgerator magnet with and I-love-my-mom note.

And then a booklet he had been writing in all year, with pictures of him at school and answers to questions about me at the end. This says, "My mom looks prettiest when she goes to a wedding." He's referring to the picture of me and Blake on our wedding day. He told me he didn't know how to color a white wedding dress on white paper, so he made my dress "brick red."

We spent Mother's Day in Owensboro with Memaw. We stopped by the Barbecue Festival long enough to get some burgoo and a pound of pork, and we just played at the house the rest of the time.

(Maggie's head)

My 3 babies!

A few weeks ago was Nate's Kindergarten play.

We got there a few minutes early, not realizing so many people were going to be there, so this was our view.

Nate was in the chorus, and we had fun practicing his songs with him a few times leading up to the play. He stood in front of us in the living room, and after he finished each song we would clap for him, and he got the biggest proudest smile on his face.

 After the play was over, I went to get Nate from his classroom, and you could see how proud he was of himself.

That gets me about caught up to Kindergarten graduation and starting summer. :) I'll blog again soon.