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.