Tag Archives: dog

Another milestone! And costume problems…

Last night Connor cruised the furniture for the first time! He took three side steps to move down the couch, and a little later, got up and did five in a row. I’m itching for him to walk! My back needs it for one. All his doctors concur that he’s right around the 27-pound mark, but apparently they all buy same defective brand of scale because I can tell you he weighs 80. There will be so many more places that we can go to fill our days. I mean, we have fun at the zoo and Tanglewood Farms, but it’s a bit of a work out. A few more months and I’ll be much more excited to receive invites to bouncy house parties because I won’t find myself facedown suffocating in the corner of a castle, being trampled by toddlers. We’ll probably go broke from me buying season passes to everything in a 50-mile radius.

Last week, Chris had to go to NYC for the day for a business meeting. He happened to stumble upon the taping of the Today Show — the last hour with Kathie and Hoda. They pre-tape Friday’s show on Thursday, and that is the episode you can see him wandering around the back, texting me to ask if he’s on TV and poking his head in to see what’s going on. It’s pretty funny. Here are some stills (yellow tie and briefcase strap criss-crossed):

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We had a busy weekend. Saturday, Chris and I made the day trip to Birmingham for the TS Alliance regional conference. I took this picture at the Alabama welcome center because it gave me the warm fuzzies.

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We got to hear about the latest in clinical studies, surgical techniques and dealing with schools and IEPs — having been on the other side of IEPs as a regular ed teacher, I dread the possibility Connor could need an IEP. Let’s say I’m just a little jaded in that area, having seen first hand what happens when the law requires schools to provide a “free and appropriate education” but doesn’t provide funding or support. Fingers crossed he won’t, but we have to be prepared for the possibilities. The reality is he will most likely start school with one, given his delays. It’s unlikely by pre-k that I won’t feel he needs one, but I can still hope that won’t always be the case. Only time will tell.

My parents got to spend the whole day with Connor from waking up until almost bed time. Everyone survived so I’m booking a trip to the Caribbean.

On Sunday, we met up with the Cruz’s and the Weathersby’s for Boo at the Zoo. We had two pirates, a monkey and a cow. The cow was SUPPOSED to be Cookie Monster, but the manufacturer and I have a serious difference of opinion on what constitutes a 2T. We had to make a last minute dash to Target on the way for a new costume, where we very nearly added a third pirate to our crew.

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I wasn’t really sure how the zoo would go with Connor, being that he doesn’t walk yet, and while he loves animals, I wasn’t confident that the distance between him and the zoo animals would intrigue him. For the most part I was right. But the one place I thought he’d be least interested was one of the best. He loved the aviary because every few minutes the birds would all swoop the enclosure together, which he found hilarious as they whirred past his head. He perked up again at the petting zoo, but getting him to look off into the distance to spot the gorillas and giraffes just wasn’t happening.

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Zoo Atlanta also put up a tent with a costumed dj, furry dancing animals and loud music. Babies first rave.

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This is what happens when you want a picture of all four boys together:

Where's David? Catch him!
Where’s David? Catch him!
Look at you? Ain't nobody got for that.
Look at you? Ain’t nobody got time for that.
Next time I'll bring duct tape.
Next time I’ll bring duct tape.

Afterward we picked up food and went back to eat at the Cruz’s where Connor continued his doggy guilt trip on us by expressing his extreme delight over their dog Bacchus. And it was super adorable when David, who is one day older and fully mobile, got down on his knees to crawl along with Connor.

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And the results of Connor’s EEG are….Mom is clinically insane!

What a lovely evening. I am lying. There is a possibility we will be discharged tomorrow instead of Friday. If there is a God, he will get me out of this place. Oh, Connor’s fine. But I’m going mental. I can actually handle staying here, no problem. It’s the not having control thing that is making me completely insane. Tonight the meds came an hour and 15 minutes past his med time. By then I’d had to give in and feed him although feeding him is essential to getting the meds into him, and we’d missed the window to put him to sleep. So my baby that goes down no problem 98 percent of the time, screamed for an hour, and now continues to stir every so often and wake up to cry enough so that I have to pat him back to sleep. Just when I thought we established a firm schedule of the meds being 40 minutes late. Look, if you won’t allow me to do it, then you gotta bring them on time. And if you’re understaffed and it can’t be done, well, then you’re gonna have to let me freakin’ do it. I’ll sign a damn waiver.

So, the big news! What do we know so far? Our neurologist stopped by to talk about what he’s seen so far on the EEG. Connor has had a few episodes now which could clearly be seen on the video and the neurologist has gone over the activity that coincides with those events…and the conclusion is: Drum roll please!!!! (you better be pounding your desk at home)

Nothing. We still don’t know. Nothing is there. No seizure activity is appearing on the EEG. Everything looks good in the abnormal way the EEGs of people with TSC can look good (meaning it is normal for people with TSC to have an abnormal EEG due to the tubers, even if they are having no seizures).

WTF, baby. WTF.

Since all the activity is with the eyes he added two more electrodes right next to them to see if that changes anything. So we shall see. I suspect we will check out knowing no more than when we came in. However, we may be increasing the keppra as his episodes got shorter last time we did. And possibly going down on the klonopin (clonazepam) as that never seemed to do much.

So, I’m glad the EEG looks good, but ummm, apparently we need to work on Connor’s attitude because he rolls his eyes at me at least 50 times a day. Just kidding. I don’t know what to think.

I just scanned over what I’ve written so far and it reminds me of why I hate baby discussion forums. Everyone talks in acronyms and I got sick of having to google everything they said.

The day was otherwise exciting as the kids got a visit from the seizure dog today. Connor loves dogs. I’m bummed I wasn’t able to snap a pic of the big smiles he had when the dog came in. It makes me really want to get him one, but Chris and I both agreed they were too much work. So we had a baby instead.

seizure dog 2

seizure dog

Connor also managed to massacre the electrodes on his head today. Two factors contributed to this. One, he inherited this crazy gene from his father that makes him sweat even when it’s 20 degrees out. Two, he likes to yank on things, especially wires and hair. Once he had created a sweat lodge inside his gauze turban, it was all over. It started to unravel around 4. Previously someone had come in right away if something came loose, but this time no. I casually mentioned it to a nurse, but I guess I didn’t properly express the imminent danger of these tiny little hands. Later, Aunt Donna came to watch while we went to dinner. It was straight raggedy by then. And when we returned, I guess one of the techs had shut it off from their remote monitoring station (perhaps located in the Lost hatch?).

Just then the nurse arrived, so I addressed the elephant in the room.

“So we’re here for an EEG, and jeepers this is awkward, but there is no EEG. Does this mean I can go home and hit the Jack Daniels?”

I will say, someone was there shortly after to redo it. Shift change had just occurred. When I replied 4 o’clock to her inquiry about when this started coming off, her expression was, well, I will call it “interesting.”

Connor would rather go get a frappucino.
Connor would rather go get a frappucino.
Yup, data is looking a little questionable.
Yup, data is looking a little questionable.
I look away for 2 minutes and he's draped himself in wires and other medical material.
I look away for 2 minutes and he’s draped himself in wires and other medical material.
EEG part deux
EEG part deux