Really, really cool weekend

This has been a very busy couple of weeks. I don't think I've mentioned it on this blog, but SBAK has been planning a one day conference for several months now. At one point last fall, I told my boss I thought it would be so exciting if we could invite Aaron Fotheringham to be our keynote speaker and special guest. If you don't know who Aaron Fotheringham is, he is a 19 year old wheelchair athlete from Las Vegas who has Spina Bifida. He is known as the first person to land a back flip in his wheelchair. He's been featured on ESPN, the Today Show, etc, and recently a Nike commercial. He also travels the world doing his wheelchair tricks.

So I worked with Aaron's agent for several months to decide on a date, his fee, his contract, all that stuff. In the meantime, we were planning a full on conference. After I had most of the planning done, I looked at some other chapters who were doing education days and saw they were doing half days, one track of sessions, etc. Ohhhh, see that would have been much easier and more realistic than my plans for our first ever conference! :) I planned three tracks of sessions, with speakers from as far away as New York, AND we decided to offer it for free.

So the last few weeks have been wild at work, because we had two big events 5 days apart to plan, but last week in particular was crazy as I was putting together all the last minute details. I worked until midnight on Wednesday and Thursday, but at 11:55 on Thursday night, I marked the very last thing off my to do list. All the planning was done, and we just had to put the plan into motion.

So on Friday we packed up three vehicles with boxes and unloaded them at the church where we had the conference and started gettinng everything set up. In the afternoon, I had the opportunity to go pick up Aaron Fotheringham from the airport. I introduced myself and immediately could tell he is a very nice kid. He was very easy to talk to. But when we reached the escalators and I was veering to the right, he said, "We're going down, right?" I said, yes, the elevators are over here. He said, "I go down the escalator." Okay, I know some people who use wheelchairs go down escalators, but here's the thing. I am afraid of escalators. I fell down an escalator in London once, and it traumatized me. Even now, if I'm on an escalator, I prefer for someone to be in front of me (going down) so they can catch me. This guy is not scared. And notice he was in front of me.



Then I started walking toward baggage claim, but he had no bags. All he had was a very unfull backpack and a helmet hanging from the back of his chair. So we went outside, and a local van company was so nice to provide an accessible van and a driver for Aaron the whole time he was in town. By the time we got out there, the driver already had the ramp out for him. We could tell he really did not want to use it, but he did. When we got to the hotel, though, he jumped his chair out the other side of the van. And the driver told me that the next time he got in the van, he jumped his chair up into the van.

Anyway, when he got in the van, he saw my surprise for him. The previous day, I saw on Facebook that Aaron joked he was coming to Kentucky and wanted some KFC. So I had some KFC waiting on him in the van. Like I said, it was just a joke, but he was so thrilled with this chicken, it was funny! He immediately tore into the chicken. :) He thanked me like 4 times for the chicken and posted about it on facebook. I think we all must take our KFC for granted. You can also see beside him in this photo that we gave him a Redefining SB tote bag with some Kentucky gifts, like a miniature Louisville Slugger bat, a UK hat, a t-shirt from our conference, and some Kentucky snacks.

So when we got to the hotel, we asked Aaron if he would like to rest for awhile after his long trip. He was like, No, I'm not tired. Of course he's not. He's 19. If I had been on a plane for that long, I would have needed a nap. So the driver took him on a little tour of Louisville, and by the time I got to the skatepark that evening, an hour before our event started, Aaron was already there riding!

So that night, we gave Aaron the chance to ride at our Louisville Extreme Park. It's one of the top skate parks in the country, and he thought it was "sick." He said it was like his Disneyland, and he was considering taking a cab back out there in the middle of the night to ride more. He wants to fly back out here just to ride it again. :)

Anyway, we invited families to come out and meet him, and we had a great crowd, as well as some media! Yay! Aaron took the time to meet every single kid there and talk with them.

He also did some awesome tricks. No, he did not do a back flip. Actually it was in his contract that he would not do flips, and now I understand that it's not a good idea to try a flip at a new park that he's not familiar with. But he still totally wowed us, and he also crashed a few times and scared us! Halfway through, he decided he was going to drop in this huge bowl. He would sit there for a minute just looking down and, I assume, getting up his nerve. Then he'd just free fall for a few seconds and catch the wall several feet down.

Later I told him that every time he did that trick, my stomach dropped. He said, "Mine too!" He took lots of pictures with kids, signed autographs, and one little boy even interviewed him. His mom told me he was going to whisper to him, "Do you pee out of your belly button too?" Can you imagine being a little kid with SB and seeing this guy as your hero?

After the skatepark, a bunch of us went out to dinner with "Wheelz." We talked him into ordering a Kentucky Hot Brown, a local specialty, and taught him how to properly use the word "Y'all." Along with staff, there were some other families there, and I have not had that much fun in a very long time. I laughed until my face hurt. Aaron was really fun to hang out with.

The next morning, Saturday, was the big conference that we had been planning for so many months. In addition to the conference sessions, we also had a full Kids Camp with their own full, fun schedule. Nate had the BEST day ever--playground time, coloring trains, a music class, etc. Georgia did not have a happy day, and there were so many instances when I walked into her Kids Camp room to ask a question or help and she would spot me and attach to my hip.

We also had a vendor area, and we sold SBAK merchandise. We had an awesome t-shirt designed by Andy Gibbs, of Redefining Spina Bifida fame, lol. It was a lot of work, and I was hustling all day long, but everything went exceptionally well. Everyone learned a lot from the sessions.

Aaron did an excellent job with the keynote speech and got a standing ovation! He ended with "When life gives you a wheelchair, find a skatepark!" He was very inspiring. The audience was able to ask him questions too--everything from "How high is your mother's blood pressure?" to "How much of your legs can you move?" It was very interesting.

After his speech, everyone had time to get an autograph from Aaron. There was a ramp up to the stage, which was a couple feet off the ground, but I knew what he would do. He went over to the edge and just dropped off the side, lol.

At the end of the day, everyone had only very positive things to say about the whole day. They learned from the sessions, enjoyed the time to chat with other families, were inspired by Aaron, and were happy with the kids camp. The whole weekend totally exceeded my expectations.

It's Monday night, and my legs are still so sore it hurts to move! But I'm still thrilled about what we accomplished. And it was FUN.

This week: 2 migraines and 4 trips to the pediatrician

This has been a banner week for the Payne family. I'm just glad we all made it out alive. (That's a little dramatic.)

Monday night I had an awful migraine and Georgia chose that night to wake up at 3:30am and stay up until 5. When we woke up for the morning, I still had a migraine and could barely functions so I decided I should drop the kids off at the sitter's and come back to try to sleep off my headache before going to work. Blake happened to be taking my car to the shop that morning, and he texted me to say he couldn't find anyone from work to pick him up so I was going to have to go get him after I dropped the kids off. Ugh, I just wanted to sleep!

So I dropped off the kids, picked up Blake, took him to work, and set out for home to go to bed. On the way, Bekah called to say Georgia was not acting like herself and, just as I suspected, she also thought she might have an ear infection. She offered to take her to the doctor, but I knew we would have to have a discussion about tubes since this would be her 5th ear infection since December. So instead of going home to bed, my migraine and I went to pick up Georgia and take her to the doctor. No one dared question why I was wearing sunglasses inside. :)

She did have an ear infection, and had it been earlier in the winter, we would for sure get tubes. But we hope since spring is springing, maybe this will be her last one for the year. He wanted to get very aggressive with this ear infection (last time she needed 2 rounds of antibiotic to get rid of it), so he gave her an injection of a very strong antibiotic. I later found out this is how they treat meningitis, so yes, very strong! It really hurt her and she was limping around after it. We had to wait around for 20 minutes to make sure she didn't have a reaction to it, then I took her back to the sitter's, so my migraine and I could go take a nap.

Blake called and wanted me to come get him to take him back to the shop because they didn't have our part today, and I said I was sorry but no! Leave it there overnight, I'm going to bed. So I went home and laid down in my dark room and just dozed off for about 10 minutes ... and out of nowhere, SOMETHING mysterious started alarming in my house! I still don't know what it was, but it just lasted long enough to scare me to death. Forget it! I'll sleep tonight.

At this point I still had a headache and was in a daze, and I knew I would be worthless at work, so I just took a whole sick day. Blake and I had planned to go buy him a suit that night, but now that Georgia was sick and pitiful, I figured we should do it before I went to pick them up. So my migraine and I went to pick up Blake, went to the mall and bought a suit. Men are so easy. He tried on one suit, it was on sale, done.

After I picked up the kids, they were so tired and whiny, and I finally texted Blake to please come home because I couldn't handle it. He texted back: I don't have a car. Ahhhh!!! So I had to put the kids in the truck and take them to pick him up again.

It was the most annoying day ever.

Anyway, for the next two days, I had to take Georgia back to the pediatrician's office for injections, and poor thing cried every time and limped with a hurt leg afterward. On Wednesday night, she again woke up from 3:30-5:30, and I again had a migraine, only not as bad this time, but this time I skipped the frustration and just suffered through the day.

Friday, I was happy we didn't have to go back to the pediatrician's office for another shot, and I was having a busy day at work when I got a call from the babysitter. She was crying, and she called me at work! Who is hurt? It was Nate. He had fallen off the couch somehow and hit his head on a sharp part of her coffee table. She was checking the back of his head for a knot, and her hand came back with blood on it. She said she thought he might need one stitch. Okay, I can handle one stitch! She was so upset about it.

I went to get him and took him back to the pediatrician's office, and the doctor decided he needed a staple. She said it was quicker than making him lay still for a stitch. Nate was actually feeling great. He had been dancing around the doctor office and was very polite and brave with the doctor. But she ended up putting 2 staples in, and they had to hurt. No numbing, just two staples in his head. He was crying and saying so pitifully, "That is hurting me! Please stop!" He was so polite about it. And then I made him thank her as we left. :) He has felt fine ever since and has only mentioned it a couple of times.

It was not our best week around here. But the kids are feeling better, and I currently don't have a headache, so I think we'll make it. :) Hoping we're all well next week!

Georgia's First Time Out

This morning I was getting Nate ready for school, and Georgia walked over and popped him on the head for no reason at all.

Georgia! No, no! Go sit in time out.

I made her sit down a few feet away from me against the wall. I expected her to immediately stand up and start running, but this girl has seen many a time out and knew the drill. After about 30 seconds she hesitantly started to get up, and I told her to sit on her bottom and she sat back down.

A one year old gets a one minute time out, so when a minute was up, I told her to go over and tell Nate she was sorry. She walked over to him and just stood there very close to him for a long time.

Then she said, "Sowwy."

Nate said, "Awww, Georgia, I love you!" He was so proud of her first time out. She learned from the best.

A conversation with Nate

I am not a morning person. Ask my husband. His best bet is to just steer clear of me until I've had some caffeine. I get along okay as long as I don't have to speak to anyone. My brain is not awake, and it takes way too much energy to form words.

Having kids has made this more difficult. Parenting requires so much TALKING. They are constantly asking questions. Lately I've found myself telling Nate, "Shh, Mama doesn't like talking in the morning." Which only leads to more questions. This is a conversation from a few mornings ago.

Me: (tripping) Ow
Nate: What happened?!
Me: Nothing
Nate: What happened, mama? Why did you say ow? Did you hurt yourself?
Me: Sigh. I tripped.
Nate: Oh! What did you trip over?
Me: Nothing, Nate.
Nate: What was it, mama?
Me: ....
Nate: Mama! What did you trip over?
Me: A ball, Nate!
Nate: A ball? Oh ... was it that blue ball?
Me: Yeah
Nate: Yes, or no?
Me: Oh my gosh, YES!
Nate: .......... Did you say a ball or a bowl?
Me: SHHHHHHH!!!!!!!
Nate: Why do you say shhh? Is Georgia sleeping?

I never post enough pictures

Honestly, it's kind of a pain to upload photos because I have to do them one at a time. So I don't do it often and then if I have a free afternoon I'll upload a bunch at a time. So here goes.

We went to a Go Fish (Christian kids band) concert with my friend Jammie and her kids. Nate and Jaycie got along great, especially with the "Talking Carl" app on my phone.

Georgia was so excited to be at this concert. You can see it all over her face.

For my birthday, I decided we should all go bowling.

Here's my dad. It's really hard to bowl while holding 24 pounds in your other arm.

This must have been a really exciting point in the game.

This is the only picture I have from Blake's dad's retirement party. What a cute family.

Oh, remember me getting all misty eyed at Nate standing at the trains at Vanderbilt? Here's a pic.

The kids are constantly playing hide and seek behind these curtains. They twist themselves up in them, or they run straight out until the curtain goes over their heads, or they play peek a boo. It drives me crazy, and I'm constantly saying, "Stop pulling on those curtains, or you're going to pull the whole thing off the wall!!!"

Okay, this is the cutest. One day Bekah texted me to ask if she could paint Georgia's toes because Mia (her daughter, Georgia's girly girl mentor) wanted to do makeovers. I told her sure! I never have because I didn't think she'd sit still long enough. She let Georgia pick the color, and she chose blue. :) Not what I would have picked, but maybe she's just a little UK fan. Ever since, she has been SO PROUD of her toes. She comes up to us, holds out a foot and says, "Blue feet."

Nate got his new braces in, and I found a pair of slipon shoes for him to wear over them. I can tell he is less stable in them, and his ankles wobble, but that's the point--to build up strength there.

Here are a couple from when Nate was in the ER a few weeks ago.

And this is from when Georgia was sick. Can you see the blue lips?

In the ER they brought in a couple of infant toys, and she got bored quick. I asked them to bring some "babies" for her, and she had a great time with these Little People.

 Georgia loves playing dress up. And babies. Here she is dressed as a princess pretending to grocery shop with her baby.

Here's her Easter hat.

Pretty girl

 One day, both kids decided they would wear hats. Nate said, "Mama, when I grow up, I'm going to be a conductor, and Georgia will be a gardener!" (Based solely on the hat selection.)

Oh, Georgia has started wearing hairbows again! Mia is a good influence on her.

One day Blake sent me this pic on my phone, and I said, "Did she grow since last night?"

Today we went to Steak n Shake. She was wearing the paper hat and cleaning the table. I see another potential future career!

This baby doll is as big as her.

Oh, there's a new baby, Carson, at the babysitter's house. Georgia is fascinated by him. She thought she was so big getting to hold him one day. Bekah told me the other day that they were waiting in the school pick up line and Carson started crying, and Georgia said, "No No, baby Carson!"

Here's Mia. She and Georgia decided to be "Christmas Princesses" one day. :)

This is awesome.

Today I had to go to Frankfort for a work thing, and I took the kids. While we were out, I decided to stop in at JCPenney to find those shoes for Nate and see if they had any sales. But I didn't have the stroller with me, and both kids decided to run WILD. It was insane--they would be right there, and the next second they were gone. Fortunately, this was a very small store and it was not terribly crowded. Finally I picked Georgia up and carried her, which she was not happy with. But Nate decided he was going to run laps around the store. It was awful--I kept losing him! I was walking around the store looking for him, and other customers or employees would tell me, "Are you looking for the little boy? He went that way." Finally I caught up to him and made him sit by my feet while I shopped. The whole time I was mortified and equally proud. :) I just wanted to explain to everyone that although he wasn't behaving, it's awesome that he can physically run away from me. :) The greatest was when one man said, "Oh yeah, he went that way, yelling 'Excuse me!' the whole time." Hey, at least he's polite!

EEG results

Last month I posted about how we had gone Against Doctor's Orders by taking Nate off of his seizure medication last fall. The neurologist was not happy with me (even though we haven't seen a single staring spell since) and tried to reason with the defiant mom by saying we at least needed to do an EEG. If it came back normal or just slightly abnormal, no meds. If it came back like it did last year (no seizures but lots and lots of seizure activity that makes him highly susceptible to having a seizure), back on the meds he goes.

It was a "sleep deprived" EEG. And of course if the kid has to be sleep deprived, the parents do too. :) Actually, Blake kept him up until midnight, and I went to bed early and got him up a little after 4am. He was so confused and not happy with me. I just picked him up out of bed and carried him downstairs because I knew the screaming would commence and I didn't need both kids awake at 4am. He kept saying, "Wait! I'm not ready to wake up yet!" And for the next couple of hours, he said, "Oh, mama. I'm so sleepy." We watched a lot of train videos on my laptop. When I got him in the car to take him to the appointment, he said, "This car is so dark. Just right for a nap." I said, "Don't you fall asleep, mister!!!" I kept looking back at him in the rear view mirror, and one time he had his eyes closed. I said, "Nate!!! Wake up!" He said, "I'm awake. I'm just blinking, mama." No, he wasn't! The old "I'm just resting my eyes" excuse.

He sat in my lap in a big comfy recliner while she got all the glue and stuff on his head, and after she turned out the lights, he was out. I had nothing to do except watch the computer screen. I admit, I have no idea how to read an EEG (I'm pretty sure I can read a baby anatomy ultrasound and a CT scan though), but it didn't look good to me. There were lots of crazy looking lines, and every time the lines did something funny, the woman doing the test would look over at Nate, presumably to see if he was twitching or something. I never saw him do anything, but she looked like she was certain she would find something. Those blips happened a lot.

Of course she couldn't give me any results, and I had to wait a full week before calling for results. It turns out my subconscious really didn't want the results, because I forgot to call the next Monday. On Tuesday I left a message asking for the results. On Friday I realized I hadn't heard back so I called after hours and left another message. Then this morning I forgot my phone in the car when I went into work. I finally remembered it this afternoon, and when I went to get it, there was a voicemail. The voicemail was from Dr. Farber himself. Oh crap. It is never a good sign when the specialist himself calls you. I was certain he wanted to personally tell me, "Nanny nanny boo boo! Told ya so!"

I finally talked to him later this afternoon. He said .... the EEG looks the same as last year. Boo! BUT, he is fine with Nate not being on medication right now. Yay! He understands that we have not seen any seizures, and neither have his teachers. He wonders if this is just what Nate's brain looks like, with all the SB and hydro and all that stuff going on. I asked if it's possible that Nate is having mini-seizures all day long and that's what could be causing him to be so temperamental and agitated all the time. He said a) this is probably not what is making him agitated, and b) he was not saying that Nate was having seizures all day. His EEG's have not shown any seizures. They just show a lot of seizure "activity," which means he's highly susceptible to having seizures. So for now, no medication. But he has a "very low threshold" for putting Nate back on the meds. If we see anything twitchy, we are to let him know immediately, which of course I will do.

Of course I was hoping for a clean EEG, but I'm okay with this outcome.

Progress and perspective

My mom says I can pack more into a day than anyone she knows. And Friday was that kind of day.

It started with me taking Nate (and Georgia tagged along) to therapy. Every Friday morning he has back to back OT and PT, and during PT he rides the horse (hippotherapy). For the last couple of weeks we've had a substitute PT for one reason or another, and we had a very interesting conversation this time. She was taking a look at his braces, which are called SMOs and look pretty similar to this:

I can't tell about that one, but Nate's have a top strap around the ankle. He didn't use to have this top strap on his previous braces, but we noticed he was crouching a bit and bending his knees when standing still, so the PT thought this ankle strap would force his ankle a bit more still and make him stand up straighter. When he first got it, it was rubbing his ankle and making a place there, so the PT said to just leave it very loose. After that healed, I started strapping it tighter, thinking it would do its job that way. And it has--I really haven't noticed Nate crouching in the last several months. So apparently he has gotten stronger too. But a couple weeks ago, his regular PT told Blake that I was strapping that top strap too tight, that it needed to be lose. So on Friday when I was talking to the sub, I asked about this. If it's that loose, it's not even doing any good. Why not remove the strap? She agreed and said we could cut off the strap because it really doesn't look like he needs it anymore (after watching him run around without it strapped for awhile). Great! The less support, the better. I want Nate to be moving every single muscle that works, so we can get them stronger.

I was telling her about a night last week when Nate asked Blake to help him take his shoes off because he wanted to dance. Apparently his shoes were getting in the way, and he had some major dancing to get done. Nate can walk pretty well without his braces and shoes, and we like to give his feet that exercise (the braces stabilize his feet and ankle, so he can't move them much). But his feet pronate, which means he sort of stands on the insides of his feet a bit. Well Blake was watching him dance barefoot, and not only was he standing on the inside of his feet, but his left foot was so distorted that it looked like it was curving outward. It didn't look good. This PT said she understood we wanted him to be using those muscles, but he needs some support on his feet.

This is the way she explained it, which made total sense to me. You build strength from the top down. So first the hips, then the knees, then the ankles, then the feet. Well, we have worked on the leg above the ankle by strapping the ankle, and now it's time to strengthen the ankle. So we will need some side to side movement there that he can't do with his SMO on, but he will not be able to properly exercise his ankle if his foot is a mess. At first she suggested just a mid-rise shoe for him to wear around the house, but then she brought up a lower brace. He could wear this inside of a shoe, at home and maybe at PT sometimes, to stabilize that foot so we can strengthen the ankle. Something like this:

That right there makes me want to jump up and down. I know, I know it's not what he'll be wearing full time, but even the prospect of having these tiny braces in my house makes me excited. He's getting stronger! Maybe someday this is all he will need. The great thing is that even if our insurance doesn't pay for these, a pair is only about $50, so no biggie. I wanted to get him measured right there, but she said we'd be thinking about it over the next couple of weeks. She obviously isn't as excited as I am, and as Blake was when I told him about it. :)

Anyway, after therapy, the kids and I went out to lunch, which was a disaster because both were so tired and whiny (that is putting it mildly), and then we drove to Nashville (about 3 hours away). Yes we did. And for the last hour, Nate asked, "Are we there yet?" almost once a minute, every minute. It was a blast. But it was time for his 6 month urology update at Vanderbilt. We always do his big SB clinic in the fall, and urology is the only specialty that insists on seeing him another time of the year, despite the fact that he's never had a single problem. Anyway, we like them, so it's okay.

They did a renal ultrasound, and his bladder and kidneys looked perfect. I really like his urologist, Dr. Tanaka. When we saw her in October, potty training was going very well. Since then, Nate regressed and we have taken a total break from it because he is so resistant. She assured me that we did the right thing. IF he is able to potty train typically, which is our hope, it's only going to happen when he wants to do it. She reminded me that even typical boys potty train later than girls, and kids with SB who do potty train do so later than their typical peers. So it does not alarm her at all that Nate is still in pull ups. I told her that our goal has been that he will be in big boy underwear by Kindergarten. She said that would be wonderful but she doesn't think it's very realistic, and if it doesn't happen to not consider it a failure, for any of us. She assured me that eventually, he'll want to do it. I have had my doubt about that sometimes! But right now, that's my prayer--that Nate will WANT to do this. Otherwise, it's a no-go. It's often frustrating for me when I see other kids who have SB and are younger than Nate and they are already wearing big boy undies because they're on good bowel and bladder management programs. I asked Dr. Tanaka if she saw any reason for us to start any of these programs with Nate now, and she said no. There's no health reason to do it, and if he is resistant to just sitting on a potty, he's going to be even more resistant to those programs. So we wait. But I do feel much better about what we're doing ... or at this point, what we're not doing.

Nate and Georgia were actually great at the hospital. While we were in the room waiting for the doctor they ate snacks and chased each other and played games and got along like they like each other! which they usually do. Nate asked me the name of the doctor he would be seeing, and he practiced saying it. When she walked in, he said, "Hi, Dr. Tiniki!" :) Then he tried it again and said Dr. Tanaka, and she was impressed. As we were leaving and Nate was running ahead of me, I heard a nurse ask Dr. T., "Is that Nate? Is he a prenatal surgery baby?" She also sounded impressed.

For being so good, Nate got the supreme treat of being allowed to hang out at the big model train display on the first floor of the hospital. As I sat there watching him run around pushing the buttons, laughing, and playing with the other kids, I overheard a couple call their parents to give them an update about their daughter who was in the NICU. When I am at Vanderbilt, it feels like yesterday that Nate was in the NICU. It is such a time warp. I can be washing my hands, and the smell of the soap can transport me back nearly five years ago to the NICU, where I stood washing pump parts at the sink countless times a day. My mind starts playing video of us walking Nate past the trains in his stroller when he was a baby, then the time I brought him for his 30 month checkup, and he stood there at the trains in his walker. On Friday I sat there watching him run around with the other children, and people were passing by, totally unaware that Nate had any issues at all. I wanted to grab them and tell them what a miracle this was. And then I saw children with bald heads walking by, and I tearfully thanked God that he dealt us "only" Spina Bifida.

So back to me cramming so much in one day. After leaving the hospital (I have no idea what time it was because they're on a different time zone as us and I get confused, but probably around 5:30), we went to visit my friend Kathryn and her husband and three little boys. One is brand new, and this is the first time I had seen him. Her other two are a little older and a little younger than Nate, and oh my, Nate had so. much. fun. playing with these boys. They just disappeared for like an hour upstairs playing! Then they would run down and do a little skit or something and run back up. The whole time Nate would be yelling "Wait for me!!" :) We had fun, but we did not get much sleep that night, as Nate slept in the bed with me and kept reminding me he was NOT tired, and Georgia slept in a pack n play in the same room and ended up in the bed with us by morning.

Nate was so upset to leave his new friends, but we got on the road and headed to Bowling Green for a Spina Bifida playgroup. I had arranged to have this playgroup at a McDonalds that had an indoor playplace. Of course I had never been there before, so I hoped it had a place for little kids to play. Not so much. This thing was a huge climbing structure, with tubes and slides. We got there about an hour before the playdate started, and Nate said he wanted to try climbing it. I cringed. This place was crawling with kids, and lots of big kids. But I said go for it. He got halfway up the first tube and I could hear him crying. Kids were climbing over him. I told him he needed to either come back down or keep climbing. He chose to keep climbing. These tubes are solid, and there are only a few little windows where you can see anything, but I saw him get to the first platform and I yelled for him to go down the little slide there. He didn't hear me. He kept climbing higher.  At this point I was a nervous wreck. I couldn't see him. I couldn't hear him. Kids were everywhere. The only way down was this huge tube slide, that I knew he'd be afraid of. So I just sat there with my stomach in knots.

I looked around for a big kid--a girl--and finally saw one who was going in. I told her to look for Nate and said what he was wearing. She came down the slide a few minutes later and said he was all the way up at the top just sitting there and wouldn't come down the slide, but he was okay. First of all, the very top was like 20 feet up in the air. How in the world did he get up there?! And second, this thing is made for kids 12 and under, and I certainly cannot climb through these tubes to the top of the play structure!! The little girl went up, and next time I saw her, she had Nate in her lap coming down the slide. He was smiling. He wanted to go again. Oh my gosh! He's killing me! So the same thing happened again, including him getting stuck at the top and needing help down the slide, and another ulcer for me. Finally I asked the girl if she would show him where the first slide was. From then on he would just go up to the first platform and slide down the smaller slide by himself, which made me so much happier. Toward the very end of the playgroup, I heard crying coming from inside one of the tubes, but it was Georgia! How did she get up there?!!! My kids are monkeys. This time I did have to climb up there and rescue her. And I am so grateful that Nate can climb up there, but I am not going to McDonalds for a very long time.

Today we recuperated, but I think I could use another day or two. It was a big weekend.

Enough Already!

I am so over this winter! We have had non stop illness for a month!


1. Nate had the flu. It lasted a good week. He was miserable and just laid on the couch with no energy for days.

2. A week after he pretty much got over the flu, Nate came down with a stomach bug that landed him in the emergency room and needed IV fluids. Nate really hates IVs.

3. Georgia caught the bug. Threw up a couple times and was over it.

4. Blake caught the bug. He was sick, sick, sick and had to miss a day of work.

5. I'm not going to catch it, I'm not going to catch it ... I caught it. :( Thankfully I didn't get sick and just had a fever and felt bad for about a day.

6. Georgia was crying a lot and had major crusty eyes and a fever. Turns out she had an ear infection and needed an antibiotic.

7. A week later, Georgia had a TERRIBLE fever. I took her to the doctor, and she still had an ear infection and got a different antibiotic (seriously, this girl is on the verge of ear tubes), but she suspected she also had a virus causing the fever. That night, even after tylenol, she was shivering uncontrollably and her lips were BLUE. I wrapped her up and cuddled her until she stopped shivering, and then she was on fire. I took her temperature with a digital head scan thermometer, and the first two swipes it just said, "High." Like it was too high to even measure it?! The third swipe, Georgia pushed it away and it didn't get as good of a read. It read: 106.1. Ack!!!!! Blake said, "Take her to the hospital!" So I did. Of course there was nothing they could do for her other than what we were already doing, and that's probably the most expensive dose of motrin we'll ever pay for.

8. Nate started coughing. I kept saying it's probably just allergies, because I had a little nagging cough too. But I get very nervous when Nate coughs. He has chronic lung disease of prematurity/asthma, and he's landed in the hospital for less than this. So I gave him cough syrup, called the doctor to check with her about it, and just waited. And then it got worse. So this morning I took him in to the pediatrician's office, and he thought he might hear just a little something in his chest. Of course the worry is pneumonia. So he put him on an antibiotic for a potential sinus infection (which means both kids are now on an antibiotic) and said to give him breathing treatments. Ahhh, time to pull out the old nebulizer. I think he sounded better already tonight.

So, it has been a stressful month, as we have tried to juggle a really busy month at work for both me and Blake, and trying to keep the kids alive. Today was a beautiful sunny day, and I see hope of spring! Come on, spring! Go away, sickies!

It's okay, I have issues too

This afternoon, Bekah (our sitter) texted me about something Nate said that cracked her up. She was changing Nate's pull-up and couldn't get it on straight, and she said, "Sorry, Nate! I'm having issues today!" Nate laughed and said, "That's okay, Miss Bekah. I have issues too."

I laughed and laughed and laughed, because a) kids say the funniest things and b) after the morning we had, if I didn't laugh about his "issues" I probably would have cried!

We had a rough morning. Nate is like his mama--NOT a morning person. This morning he was wailing as soon as he woke up, and he screamed over every little thing. He cried over my hair dryer being too loud and drowning out his cartoons, so he wanted a do-over ... he actually wanted me to turn up the TV and dry my hair AGAIN. He was insistent. Of course I was equally insistent: No.

Then, true to our Love and Logic book, I gave him a choice: Nate, do you want to get dressed while we're still upstairs, or do you want to get dressed downstairs (I couldn't have cared less either way, but supposedly giving kids choices makes them more compliant. Whatever!) Nate's choice: "I don't want to get dressed." Okay, sticking with my Love and Logic, I chose for him: Let's get dressed upstairs. We have been working on him learning to dress himself lately, so I made him pull his shirt over his head, pull up his pants as far as he could get them, pull on his socks, etc ... all the while, he was throwing the biggest tantrum he could muster. I just remained calm, and kept going. Then he decided he wanted to get dressed downstairs instead of upstairs. So he wanted me to UNDRESS him, then DRESS him all over again, this time downstairs. Okay, this is just getting wierd! (And if there was any doubt, my answer was of course: No.) It was fit after fit like that all morning, but I was pretty proud of myself that I didn't get outwardly worked up about his tantrums at all.

In the moment, it feels like this is the "norm," that Nate always acts like this. He doesn't. Most of the time, he is a fun and lovable kid to be around, but when he's grumpy, he's really grumpy. All morning, I was struggling with what we're going to do with him. We see an OT for his sensory issues, we see a behavioral therapist for the tantrums, we are consistent at home (ahem, I am consistent, and Blake is sometimes a pushover, but still, not enough to "cause" these issues), we love our kids like crazy ... I always thought that it was the parents who didn't care who had the kids with the behavior issues! :) That was before I had kids!

I've said it before--Nate has always been a little mystery to me. I always feel like there is a piece of the puzzle that I just can't figure out yet. I fear I could be missing something. That's not an unfounded fear--there have been a few times when I've been sucker punched by a new diagnosis. So my goal is to always be proactive. I want to know anything and everything about his diagnosis, related conditions, community resources, therapies ... anything that might give Nate a better life and us a better understanding of him. I get involved, I do my research, I talk with other parents ... I feel like I "collect" SB moms on facebook and blogs. The more resources, the better! Because from time to time, I hear the parent of an SB teenager or adult say with regret, "Oh, if I had only known about this years ago..." about learning disabilities or Medicaid waivers or bowel management programs or school resources or whatever they feel would have made a difference in their child's life. I don't want regrets. But that is a lot of pressure to put on a mama.

This afternoon, I was on the phone with my mom, telling her my concerns about Nate's behavior and bouncing some ideas off her about what to do. Well, today is my mom's birthday, and with all those years comes wisdom ;) (she's actually very young in years and at heart). She said, "He doesn't need another specialist." Well, my first thought was "Blasphemy!" But, see, I do this from time to time. I lose sight of the big picture, of how things really work. When I start thinking things like, "Okay, we have a urologist who looks at the bladder and kidneys, and a neurosurgeon who looks at the brain and spine, and an orthopedic surgeon who looks at his legs and feet, and a neurologist who monitors for seizures, and a physical therapist who works on gross motor, and an occupational therapist who works on sensory and fine motor, and a behavioral therapist who works on tantrums ... but who's the specialist who looks at the WHOLE picture of Nate?" And I think and think and think about who that might be, until it dawns on me:

Duh! It's God!

And that's what my mom reminded me today. That God:
a) MADE Nate. Just like he is, on purpose. And because of that, He knows everything about him.
b) LOVES Nate, even more than I love Nate, and that's a whole lot.
c) started a good work in Nate and will continue it to completion. ("he who began a good work in you will carry it on to completion until the day of Christ Jesus" Philippians 1:6)
d) started a good work in me too, and sometimes the really hard stuff is what refines us and gives us perseverence.
e) will give me wisdom to handle these "issues" the way they need to be handled, if I ask for it. And I need to ask for it on a daily basis, for all the daily issues that pop up.
f) doesn't want me stressed every day.

Collective deep breath, now.

So, yeah, Nate has some issues, and I have some issues of my own! That's alright. This is a journey, and I don't have to figure it all out today. I'm glad somebody has it all figured out--there's so much comfort in knowing God is in control and there's a purpose to all of this.

And by the way, Nate was back to his sweet, fun-loving self after hippotherapy this morning. Sometimes God does use specialists, and even smelly old horses, to work on our issues.

Against doctor's orders

It was almost exactly one year ago when Nate was diagnosed with epilepsy. The e-word still makes me cringe, but that's what it is. He was having staring spells at school, which led to an EEG, which did not show an actual seizure but did show "sparks" of seizure activity every few *seconds.* If not for the EEG, I would not have believed he was really having seizures, because when I would say his name, he would come right back out of it. It wasn't causing any damage, but they told me constant zoning out would cause delays, and we certainly didn't want that.

So the plan was to put him on medication for a minimum of two years, then we'd do another EEG, but no one gave us any hope that Nate would grow out of this. We first tried Keppra, and it made Nate pure evil. It was bad. After 6 weeks, we switched to Topomax, which didn't result in any side effects, but the problem was that it came in sprinkle caps. So we had to sprinkle this stuff in some pudding or yogurt twice a day. But Nate has some texture issues, and plus this medicine tasted bad, so every day, twice a day, we had a major battle. Sometimes we would be open about putting it in his food, but then he wouldn't eat it at all. Sometimes we would try hiding it, but he would taste it. And he started questioning everything I gave him to eat, lol. "Are there sprinkles in this peanut butter sandwich?" (Usually there were.) There were a lot of tantrums and a lot of missed doses.

At his 6 month follow up, I reported that Nate had not been having seizures that I could tell (but honestly, I could never tell), but I wanted to know if there was a liquid form of Topomax. I explained the issue. She wrote a prescription for a liquid form, which the pharmacy would have to mix for us every 2 weeks. No problem. Those first two weeks were blissful. Nate would take it by liquid no problem. The next time we went to pick up the prescription, they told us that our Medicaid denied paying for it because it was expensive and contained over the counter ingredients. So that would mean we were paying $80/month for this liquid medicine.

After those 2 weeks without battles, we really did not want to go back to sprinkle caps. We gave it a half-hearted try, and we ended up forgetting (by accident or on purpose) to give it to him at least once a day. But there were no staring spells. Finally I decided that the benefits of taking the medicine (fewer staring spells--even though we hadn't seen a staring spell in forever) did not outweigh to twice a day battle to get the medicine down his throat. So I stopped giving it to him. (Eek!)

Now, I do not condone my behavior in any way, lol. I can't think of more than a couple times I have actually gone against doctors orders for Nate. But in this case, I really felt like he didn't need the medicine. So I gave it a shot. And everything was fine. Four months later, everything is fine. His teachers have not seen one staring spell, and neither have we at home.

So, today was his neurologist check up. (Dun Dun Dunnnnn) I really was not looking forward to reporting my negligence. Dr. Farber is a very nice man who always wears a bow tie. He asked me how things were going, and I said, "I really don't want to tell you this, but I weaned Nate off of his medication." Hmm, I was right. He didn't like it. He understood my reasons, even if he disagreed. At some points, he was using a tone of voice one might use with one of those unreasonable combative moms. :) He asked if I would at least agree to doing another EEG. I told him that was fine, I really don't have anything against medication or any kind of interventions--just this particular medication was not working for us.

So we scheduled an EEG for March 16. Dr. Farber said if it comes back normal or even just slightly abnormal, we'll forget the medication. (Even though they have a pretty strict rule that every kid is on medication for at least 2 years, regardless of clean EEG.) But if it comes back like it did last year, he's going back on medication. We can try a different kind of medication that comes in liquid form, such as Trileptal. We did not try this before because of the side effect of weight gain, which would not be good for Nate's mobility, but he said we could try it and see what happened. So, an EEG it is. Let's all pray it comes back normal! How awesome would that be!

Sidenote: I am always amused at Nate's various non-SB specialists. They always want to talk about the fetal surgery and the Spina Bifida, and they always want to see Nate's feet! Like, his pulmonologist (lung doctor) once asked to see his feet. :) Well, Dr. Farber saw his feet last time, so this time he just asked Nate to run up and down the hallway so he could watch him. Does this have something to do with neurology? I guess so. Does it have anything to do with seizures? I'm pretty sure it does not. I don't mind showing off my little pride and joy though.

Nate's doctor appointment turned into a little Mommy and Son date this morning, and it was nice to be able to spend some time with just him for a change. I dropped Georgia off at the sitter's and took Nate to work with me. He was pretty good except he kept sneaking in the bathroom to play with water in the sink. There were plenty of toys there, but I finally found one he was interested in--a Connect 4 game. Then we went to his appointment, and the highlight for him was getting to run in all the long hallways. He was an angel during the appointment, then I drove him to school, where he was just a few minutes late, and sat with him during lunch. We had lots of good conversation.

I just really like that kid. Love him too.