Georgia's Baby Dedication

Georgia had an excuse to wear her party dress on Saturday. We participated in the baby dedication at our church. When we did the baby dedication with Nate at our old church in Berea, it was in front of a couple hundred people. This time, we were in front of THOUSANDS of people along with about 50 other families. My parents and my bestest friend Mindy came to town for the service. Since Blake and Georgia and I had to be there early for instructions, they brought Nate to church to get him to his class. Well, he didn't want to go. He didn't want to leave Pop. After 10 minutes of discussing with him whether he'd go to his class or not, they decided he'd come to church with them (brave). But by this time, the service was starting, and they didn't know the baby dedication would be the very first thing! So as they were walking through the lobby they saw the baby dedication on some of the monitors, and Mindy literally ran into the sanctuary and was raising up her camera just as we were shown on the jumbo screen!

That's us on one of the huge screens above where the families were standing on the stage.

And there we are standing on stage as Pastor Dave Stone said a few words.

Afterwards, it was time to party! Since my parents were in town and we won't see them until Easter, probably, we were also celebrating my and Blake's birthdays.

This girl is teething something fierce!

Uncle Lucas came to dinner.

Nate was just a mess. We were told the medication he started might make him grumpy, tired, and unstable. ... Yep. After Blake finished eating, he had to just take Nate home. He couldn't stand anymore fun.

Pop gave her some ice cream for those sore gums.

At home, she changed into something more comfortable than that fancy party dress to snuggle with Granna.

And practiced crawling.

Nate and Pop are good buddies. This was Sunday--it was such a nice day outside and melted the rest of the snow.

Look at those pretty blue eyes.

Check out this move--on hands and toes.

So here's her crawling progress. She's getting close!

And Elizabeth must have taken this video tonight while I was out. So funny--if she was in the water, she'd be really moving!

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P.S. Here are a couples pics from Nate's school. He's in the orange. They were dancing. :)

The neurologist appointment

First, HAPPY BIRTHDAY, BLAKE!!!

Blake got to spend his 31st birthday doing what he hates most--going to a hospital. Nate's neurology appointment was this morning, and I'm so glad Blake was with us, because these kids were a handful (story to come in a minute). Today we saw the nurse practitioner, and Dr. Farber came in at the end. We liked them both very much, and they were both VERY interested in Nate because of the fetal surgery. In fact, they brought someone else in the room just to look at him. :) They thought he was doing phenomenally well with the spina bifida stuff.

The nurse practitioner said that Nate's EEG was "markedly" abnormal. He didn't have a seizure during the 30-40 minute test, but he did have "sparks" of seizure activity every few SECONDS. That's a lot. She likened it to how sparks, in the right conditions, can turn into a flame (a seizure). So in the right conditions, when Nate is tired or sick or whatever, these sparks are very likely resulting in partial seizures. They are definitely not absence seizures, but sometimes partial seizures can present as staring spells. She did warn us that Nate is more prone to have a full-blown seizure, and though she doesn't think that will happen, she wanted us to know what to do in that situation. Seizures do not cause brain damage (except if they are really often and major and cause swelling of the brain, not what Nate has), and the real problem with them is that he is checking out all of the time, which can cause delays. I think I can see some evidence of this in Nate.

So they thought it was very apparent that Nate needs to be on seizure meds, and I do agree with them. They mentioned two general seizure meds they were considering--Keppra and Trileptil. Keppra can cause tiredness and moodiness--yikes! Nate is moody enough already! Trileptil has the opposite effect--it can make someone more even tempered--BUT it can also cause weight gain. Nate is already stout, and it's not a good idea for him to get too heavy with his mobility challenges, so Keppra it is. They said the side effects often wear off within a month, so we'll pray he won't be too grumpy for too long. He will start at 1ml twice per day for a week then 2 ml twice per day and see how it works. When you start medication, you commit to taking it for 2 years. After that, if he isn't still having staring spells and an EEG looks good, we'll try to start weaning him off the medication. We hope he'll outgrow this!

I asked several times about the possible link to hydrocephalus and not having a shunt. Dr. Farber agrees with Dr. Tulipan (Nate's neurosurgeon) that it is improbably that the hydro is causing the seizures. Whew! That means no one is thinking about brain surgery. Medication should take care of this. In the meantime, he'll have a CT scan every 6 months to keep an eye on those ventricals. The only other instructions were to make sure he is getting enough sleep and on a regular schedule.

So on to that story I promised. I had Georgia in the cutest little outfit that she had never worn before. The nurses at the check in desk were oohing and ahhing over her. We were in the waiting room before the appointment, and I was trying to fill out paperwork while Blake was occupying Nate with some books. Then I heard Georgia let one rip. Ohhh, great timing, thanks. The nurse called us back, and I went with Nate to get his vitals and Blake went with Georgia into the exam room. When Nate and I got back to the exam room, Blake said there was a problem. Georgia had poop EVERYWHERE. It was alllllll over her and her car seat. And there were no diapers or change of clothes in the diaper bag. Oh no!!!! I had cleaned out the diaper bag a couple days ago, and I forgot to put the diapers back in there! So the nurse was able to find a diaper, and I took her to the bathroom to clean her up. There was only one thing to do--leave her naked, in just a diaper. I cleaned up what I could in the car seat and covered her with my nursing cover. I tell ya--this girl and her blow out diapers are killing me!


Nate was just ... Nate.

Oh, I also have some pictures from our trip to Memaw and GrandBob's house on Sunday. Memaw had all kinds of trains for Nate to play with! He was in heaven!

Georgia stole some track to chew on.

Memaw made a great dinner and cake for Blake's birthday, and Nate got to help blow out the candles, and eat the cake of course.

I gave Georgia a little bite of chocolate, and she liked it a little too much!

Nate helped his Daddy open his gift--a blu ray player! Whoohoo!

So anyway, I'm still sort of in disbelief that my little boy is actually having seizures, but I guess that's where we are and are just moving ahead. He'll be okay, I'm sure of it.

Happy Balemtime's Day!

Georgia is becoming quite mobile, though she hasn't figured out how to crawl forward yet. She can scoot herself backwards, pivot around, and roll, so she can be across the room within a few minutes. But she gets so frustrated that she can't go forward. She ends up "flying" with her belly on the ground and arms and legs up in the air, and the look on her face says, "Why am I not going anywhere?!!"

That hasn't stopped her from getting into trouble! Last week she figured out how to get out of her car seat! (Not strapped in--she's not that good yet, but just give her a year.) I sat her in her infant carrier in the living room while I was doing something with her and Nate in the floor, then I walked in the kitchen to get something, and when I came back, she was on her belly in the floor happily playing. Hmmm. How did that happen? The next day at therapy, I sat her in her carrier for a minute while I was talking with the office manager, and I looked down and she was wiggling herself out of there! Her feet were on the floor already, her belly was up in the air, and she wasn't making a peep hoping I wouldn't notice. :)

Then when I was showering this morning, I had her on my bed with pillows all around her so she couldn't roll off. Halfway through the shower I looked out and she had kicked a pillow off the bed and backed up so that her legs were dangling off the bed and she was about to make an escape! Georgia! Moral of the story: I must cage her or strap her in because she is not to be trusted! Good thing she's cute.



Future embarrassing picture.





This was at music class. She's so intent on watching the other kids ... and trying to eat that maraca.

She sat by herself for a whole song!

Here's a (sideways) video of her laughing at Nate. (If you're viewing this on facebook or email, go here to see videos: http://whatnatesaidtoday.blogspot.com/)


On to Nate. This week he's been consumed with the snow and "Balemtimes Day." On Monday I got Elizabeth to go to Walmart with me and the kids to let Nate pick out valentines for his classmates. So glad she was with me cause Nate was a wild man. Another shopper actually suggested a harness (aka kid leash)! I was proud! We ended up with Handy Manny valentines and candy hearts for each friend, but the class party was postponed until next week cause of the snow.


Some things he's been saying lately:

I'm the MAN!

Bye! Come again soon!

I have a big burger in my nose!

Stinky ... everything is stinky. Nate, do you want some chicken nuggets? No! Chicken nuggets are stinky! They're stinky! Yes they are, they're stinky!!!! Nate, do you want some cheese? Is it stinky cheese?

For the last couple months at hippotherapy, Nate's been riding a pretty white horse named Charlie. But for the last two weeks we've had to reschedule for one reason or another and had different therapists, so he's been riding a shaggy pony named Daisy. She is old and cute as can be. And for the first time, he has been riding in a saddle instead of just blankets. Last week the therapist had Nate standing up in the stirrups, which was great exercise and just really cool.

Today was a fun-packed Saturday! First we went to music class--we also went yesterday, but we crashed the Saturday morning class today to make up for one we missed. Then this evening we went to our buddy Brock's birthday party! It was a gymnastics party at a place called All About Kids, and it was a blast! Nate was running around like a maniac, and it was really neat for me and Blake because this is really the first time he's been to something like this where he could do all the stuff that the other kids were doing! Here are some pictures of the party.

He's been working really hard lately on walking up and down stairs, and he is doing so great at it!

Georgia came too, and she so wished she was big enough to play with the big kids!

Nate went in this bouncy house and almost immediately came back out and said, "It's too hard." :)

There was this huge inflatable slide, and to our shock, Nate wanted to go down it. So Blake and I both were just staring at this thing wondering how we were going to climb up there (it was like a puffy rock climbing wall on one side) until one of the party workers offered to take him up. She just hopped right up there! We felt old.

But Nate loved the slide! Such a daredevil!

Have you ever played in a big pit of foam blocks? It's nearly impossible to even move in there. You should have seen Blake trying to pull me out!

He climbed up this thing all by himself to go down a big slide into the foam blocks.

He also went down a humongous enclosed slide that dumped into the blocks, bounced on a trampoline, and he got to run on a long trampoline then jump into the blocks. It was so funny the first time he did that--he ran as fast as he could until he got to the edge of the blocks, then he stopped, turned around, and carefully climbed in! After a couple more times, he was letting me sling him in.

They ate pizza, and he was getting quietly frantic about when he could get some cake, but he was very patient.

Brock is 4. Every year his birthday makes me start preparing myself for Nate's next birthday. 4! That is so big boy!

Here's a video from the party. Blake says he's now very sore, but that's what you get for throwing 40 pounds around!

Tomorrow we're going to visit Memaw and GrandBob to have a birthday dinner for Blake! Nate can't wait to see them, and all day he's been working on their Valentine's present--which is currently a pile of toys, clothes, magazines, and papers in the floor.

Happy Balemtime's Day!

MRI

We had to be at Kosair Children's Hospital at 7:30 am today for a 9 am MRI to see if anything wacky was going on in Nate's brain to cause seizures. He couldn't eat or drink anything beforehand, so we just got him out of bed, dressed him, and put him straight in the truck. Last night I told him we were going to have a "special day" (if you put "special" in front of anything these days, it's suddenly fun for him)--that daddy was going with us to the hospital, and they were going to give him medicine to make him sleepy, and then they'd take pictures of his BRAIN! He thought that was cool. We took turns looking in each other's ears to see if we could see brains, and he stuck his finger in his ear and said, "I have brains on my finger!" So this morning, he was in a pretty good mood going to the hospital.

Surely I'm not the only one who takes pictures of such events? :)

Of course Georgia had to come along, and she was really good, despite feeling bad from her shots yesterday.

Okay, then they gave him the versed. If you've ever had this drug or been with someone who's had it, you know why I think this is funny. It basically made him drunk. They sprayed it up his nose, which he didn't like, but then he sat there for about 30 seconds and then started chuckling. Look at him, hehehe!

I am so mean for taking a video of him acting all loopy--he's going to want to kill me when he's older. :) Notice the bobble head.

So once he was feeling good, they gave him the IV, which he didn't like but he tolerated it very well. Poor guy. He hates IVs.

Blake and I were traumatized by the MRI Nate had at 12 months at Vanderbilt. They used a sedative that is supposed to cause an apnea spell, so when they put it in the IV, he stopped breathing and his lips turned blue. I was horrified! They "bagged" him and he was fine after that, but I was not! This hospital uses a different type of sedative for MRIs, and though I wasn't allowed in the MRI room when they administered it, the nurse said he did fine and didn't need any oxygen during the test. Whew! The test took about half an hour, then they brought him back to the room. He woke up a little and was very upset, so we let him sleep awhile longer.

While he was sleeping, the radiologist came in the room to speak with us--okay, that NEVER happens! Typically we'd have to come home and call the doctor who ordered the test (our pediatrician), then he'd call and get the results and call us back. But the radiologist saw in his chart that he'd had fetal surgery for spina bifida and was interested in talking with us about it! She also told us what she saw--nothing surprising or alarming for a patient who has spina bifida. Almost everyone who has SB has "Arnold Chiari Malformation II" which means the cerebellum (the back part of the brain) is flattened and often pressed down into the spinal column. This *can* cause major issues but usually doesn't. Anyway, she said that Nate's cerebellum is almost completely normal; she only saw one slight difference that showed her he had the malformation. She also said his ventricals are larger than normal, which we already knew, but he's never had any issues that warranted a shunt. I told her that Nate's neurosurgeon at Vanderbilt said he thought it was very unlikely that the buildup of fluid was causing seizures. She said, "It's interesting, most neurosurgeons think hydrocephalus don't cause seizures." Hmm, so she disagrees? It was vague.

When Nate woke up, he was still crying, and he cried all the way out to the truck, then more when we got home. The only thing he was interested in doing was eating. He ate a container of yogurt, some crackers, and a cookie before I made him take a nap, then he wanted another cookie, a peanut butter sandwich, some cereal, raisins, a cereal bar, more crackers ... wow! But now he's feeling great and is playing, so I think the sedative has worn off.

I'm glad that's over, and we're one step closer to figuring out what's going on with Nate. Next we'll go to the neurologist on Feb. 16, and they'll probably schedule an extended EEG from there. As with everything, it seems, this is a slow process!

My kids doing new stuff

See Georgia sit!


See Nate run!


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See Georgia drink from a sippy! (sorta)

See Georgia eat!

Nate's MRI is in the morning. I'll update afterwards.