Category Archives: Parenting

Ordinary Life, Parenting, Tuberous Sclerosis

“You’ll feel more rested if you get up at the same time every day.” LIES!

August 8, 2013 Rebecca Gaunt 1 Comment

I’m having a terrible time keeping up with the blog now that I’m doing some other writing for meager pay to support my eBay habit. I’m trying, I swear! If I could just become a morning person, I could get so much more done. But almost 17 months of consistently getting up at 8 a.m. and I still can’t function properly until 10. Grover taunts me every morning with his chipper, go-getter attitude.

The big news is that Connor just started crawling the other day while we were in Blowing Rock, NC with my parents. He’s not doing it consistently, still doing a lot of commando crawling, but at least we know he can do it now. We are very excited. The cats are not. He’s also now demanding far too much attention after having Chris’ parents stay with us for the half a week leading up to the trip, and then another half week with my parents.

I think Connor would really enjoy having pet ducks in our backyard. Chris disagrees. — I think Connor would really enjoy having pet ducks from Blowing Rock in our backyard. Chris disagrees.

Meeting the giant doggie at Mast General Store in Boone, NC.

He also just added aquatic therapy to his regimen.

We are so loving how attentive he is to what is going on around him these days. He had a delightful meeting with the Chick-fil-A cow recently, and also cheered up some not-so-enthusiastic waitstaff at Texas Roadhouse during their obligatory hourly line dance. His clapping and enthusiasm had the embarrassed, Man-I-really-need-the-money staff smiling.

I like ladies. I like music. This is some sweet line dancing.

We had an appointment with his neurologist this morning and I requested we try name brand seizure meds (Trileptal and Keppra), in place of the generics since we continue to have breakthrough seizures. Many people swear by them as generics can vary in potency so much, so I’m hoping it makes the difference. I’m sure insurance will be delighted. But after they just sent me the private info of three people by accident…well, let’s just approve it, seeee (in gangster voice).

In other awesome news, as Connor was approved for the Katie Beckett Medicaid Deeming Waiver, we were then also able to apply for HIPP. which is a Medicaid program that helps pay your private insurance premiums in cases of serious health issues, as it is in their better interest to make sure you keep you private insurance, than lose it and resort to full Medicaid. We were approved, and this allows us a lot more income to put towards any other needs we want to meet for him. And my wine. I’m so thankful that Connor’s Early Intervention program people have been so good at making us aware of these programs. So if you have a kid in EI, make sure you have applied for Katie Beckett, and if you have done that, make sure you apply for HIPP (I don’t know what the variation is from state-to-state. I know we are lucky that such services are easily attainable here in Ga compared to what I hear about some other states, particularly in the midwest).

As for the house, I kid you not, we told our realtor toward the end of the month that we were taking it off the market July 31. We finally got an offer on July 27. So this house is under contract and we are under contract on our new house, as well. We will finally have a room we can dedicate to Connor’s mess–I mean, toys.

Don't feel bad! You've been a good house. — Don’t feel bad! You’ve been a good house.

I swear this has been the most humid Georgia summer of all time, but others have told me I’m insane and it’s always this bad. At any rate, I’m ready for fall and to wear my new scarf that my sister-in-law Donna made for me from Chris’ old shirts.

The King of Izod has some extra space in his closet now.

Also, two events I want to make sure TSC families are aware of in the area:

On Saturday September 8, we are having a family bowling event. Cost is $10 per person, which includes shoes and unlimited bowling. Food will be provided. Details here.

On Thursday October 10, we are having an educational meeting on financial planning for your children with special needs. Details here.

Parenting, Tuberous Sclerosis

Guest Blogging at the Crumb Diaries!

July 29, 2013 Rebecca Gaunt Leave a comment

Check out my guest blog at the Crumb Diaries.

Parenting

A Long Wait Finally Over

July 22, 2013 Rebecca Gaunt 2 Comments

I met Giovana in eighth grade in 1993. She thought I was a weirdo. I thought she had big poofy hair. Just kidding. That was normal then. I was gonna bite the bullet and post a picture from that year for the sake of humor, but there are apparently none with just the two of us, and it seems wrong to bring down innocent people.

So here are some from high school.

My sweatshirt is misleading. I actually hated high school.

Then came came college.

A few years later this guy shows up and is all, “See this sweet ‘stache I’m rocking? I’m gonna marry your friend.” I had been out of the country for their dating relationship. I tried to hire a hit man but he was too expensive. Fortunately, I decided I like Damien and didn’t have to kill him. Though we did ixnay the mustache.

Then they put up with my whining for a few years about how I’d never get married, until…

They had been wanting a baby for a long time. But sometimes life is a pain in the ass. After years of waiting, they got the call.

And now Connor has a new friend.

Welcome home, David!

Parenting, Tuberous Sclerosis

Slow Motion Changes

July 17, 2013 Rebecca Gaunt 8 Comments

It’s a strange sensation to watch your child develop in slow motion. Every new skill gained is not just exciting, but so…noticeable. Some parents say things like, “Oh, he just suddenly started crawling” or “she seemed to walk overnight.” Not in our world. It’s kind of fascinating, really, when it gets broken down into bits and pieces — often with the help of a physical therapist trying to explain it to you. How many parents actually notice the first time their kid reflexively throws their hands behind them so they don’t fall backwards from sitting, and even if they do, do they realize how significant that is? Connor isn’t quite crawling, but I’m watching each step along the way. Every new positioning of his legs and body. If you have a typically developing child, did you give it much thought the first time they got into a side sitting position? Because that’s a really big deal, too. What about when they were sitting and playing and pivoted in another direction? The first time they passed an object from one hand to another? Used the pincer grasp? Banged two objects together? Maybe you were excited by the first mamama, but were you just as excited when you finally heard bababa?

The last several weeks have been incredible. Connor used to hit milestones with a lot of lag time in between. And when it seemed like he was about to hit one, it would take forever to actually happen. There was that quick head lift that made me think he was on the verge of having head control, but that took several more weeks. There was the first time not completely flopping over from sitting, but it was months before he mastered it. But we have had a lot of firsts recently, followed by quick mastery. He threw his hands forward to catch himself from falling forward in PT, he rolled to his belly finally (that was just a stubborn thing-he actually rolled the other way on time) and realized rolling could actually serve the purpose of locomotion, he became mobile, he started using consonants, he can pull himself into a sitting position without help, his interest in what is going on around him has quadrupled and he fell in love with Elmo. He started comfortably sitting in the grocery store cart and observably recognizing certain words.

He’s doing really well despite an uptick in recent seizure activity. But he’s also had recent med changes in the weaning of vigabatrin and adding trileptal, so I’m remaining optimistic about that improving. They don’t seems to have a lingering affect, though they have morphed in appearance the last few days. He was having what were suspected to be complex partials in which his body would clench up and he’d stare off to the side unaware. Now they start with him losing awareness briefly and he clenches up, but then he regains awareness and is responsive while his mouth twitches like crazy. It’s like a weird mix of complex partial and simple partial. But what they they truly are remains to be seen.

And the remolding helmet only needs to be worn at night now now!

Through it all, he’s happy and giggly. Well, except for the week from hell with those two teeth coming in. They still aren’t out, but he seems to have settled down. I will go in and get them myself if they start up with him again. I don’t do no sleep.

Most new learned skills are awesome. Just not the ones that involve pouring milk all over the backseat.

Now that the carpet is sufficiently full of milk, I'd like to replace it. — Now that the carpet is sufficiently full of milk, I’d like to replace it.

How long do I have until mommy starts making rules about TV?

I’m Not Drunk, I’m Having a Seizure (underthishill.wordpress.com)
Confessions of a (lazy) Epileptic (honeyishrunkthekait.wordpress.com)

Parenting

Bye bye, helmet! Sort of.

July 12, 2013 Rebecca Gaunt 7 Comments

Connor will now have to learn that he can’t head butt everything in sight and get off scot free because we are done with the cranial remolding helmet! Well, mostly. He’s still going to wear it at night to prevent the pressure on the back of his head, but that’s really just sort of precautionary. It’s not guaranteed to make a difference. At any rate, Connor had a scan this morning and the changes were very minor from the last scan. Most of the correction took place in the first few weeks and it’s just not enough at this point to justify continuing treatment. While his head isn’t perfect, I think it’s vastly improved. Plus, he has so much hair, you can’t really see anything anyway. The scan diagram actually makes the change look more minimal than I think it actually is. We go back in eight weeks for an exit scan and we will be done! Imagine that, treatment finished before it ever even gets paid for by insurance…

Not sorry to see it go, but I will miss the wide eyed shock of children in public running to their moms and loudly whispering, “What is on that baby’s head?!”

Parenting, Tuberous Sclerosis

There’s a Storm Coming…

Aside July 5, 2013 Rebecca Gaunt 2 Comments

Connor is going to be a nightmare when he gets fully mobile. Don’t get me wrong — I’m counting the days — but as I type he is trying to kick my laptop off my lap. No, wait, now he’s alternating kicking his legs and shaking his head back and forth as hard as he can and smacking into me with his remolding helmet. His left side is covered in fur he tore out of Emma Cat. Did I mention he’s lying in bed with me because he’s totally wired and not even close to sleeping? And he keeps trying to steal blankets and pillows from us.

The other night he was lying on the couch with me and he bit my boob. As in, made me bleed. He never breast fed because he didn’t latch in the NICU, and all I know is that he tries to remove any finger that goes near his mouth. Those extended breast feeders must be out of their minds.

He’s just a big ball of toddler energy trying to bust out of a delayed body…but it’s coming. The reckoning. He will soon destroy this house and everything in it.

I can’t wait.

Training for WWE Safari edition. Also, I should put all those toys on eBay since he’s perfectly content to play with a spoon.

Still working on that hide and seek concept.

Parenting, Tuberous Sclerosis

Self Prescribing Some Wine for my Whine

June 27, 2013 Rebecca Gaunt Leave a comment

My frustration and irritation level is way up this week. We’ve been looking at the possibility of reducing the price on our home since we’re getting so many looks, including three second looks, but no offers. Then we got the heads up that another jerk in the neighborhood is going on the market this weekend priced almost $10,000 less and with a bonus room we don’t have. So we preemptively dropped the price and are hoping for a miracle before they hit the market. And unlike the other house that went on the market in our neighborhood that is under contract despite rotten wood and a lousy yard, this one actually has great curb appeal. Oh, please let it be a brass-infested wonderland inside. And if they go under contract first and accept an offer below a certain price point, we’re screwed and stuck where we are.

We had some people view the house yesterday that reportedly loved it. Except they have a second child on the way and they want more room. I’m not real clear on why they looked at all. Stop getting my hopes up, people!

Then, to top every thing off, Connor’s neurologist called yesterday with the results of his EEG. The stupid tuber in his left occipital lobe is acting up again. It has put out spikes before, but apparently Connor is having subclinical seizures again. Those are seizures that have no outward appearance, but show up on EEG. The tuber he had removed when he was four months old was causing him to have a couple subclinicals an hour, plus a handful of clinical (ones we could see) a day. We haven’t seen any on EEG since then. Yay. Here we go again. He assured me that this was nothing like when Connor was born but he did see more than one in the eight hours. Mother F. When we started him on Trileptal, we upped the dose once per directions, but never upped the second time — per directions — since we weren’t really seeing anything anymore. So now we are upping and will have another EEG once Connor is totally off the vigabatrin.

I’m just really baffled by the whole concept of a subclinical seizure. I know what the technical definition is; I just don’t get how it affects him. Yes, I understand it’s not good to have funky brain activity, but if he shows no outward signs, how is it affecting him? Like, if I had one right now, what would it do? Does he feel something we can’t see? Connor is happy and progressing, but would he be progressing faster without them? Maybe. Or would it even matter because so many factors go into delaying a TSC kid? If by some crazy chance, someone with epilepsy reads this and has subclinicals on their EEG, if you could enlighten me to your experience…

Speaking of progression, here is an area where he is fighting us tooth and nail. The bottle. I cannot get that kid off the nipple. He doesn’t care what style or shape the cup is — he’d probably even drink out of Flavor Flav’s chalice — it just better have a nipple on top. The hard plastic sippy cups inspire instant anger and hurling of the container, so we tried the sippy cups that are interchangeable with his bottle. We can either have the sippy cup mouthpiece or the regular nipple. He hates this sippy cup mouthpiece a little less because it’s pliable like a nipple, but other than sticking it in his mouth a few times, he just plays with his bottle. His speech therapist gave us some things to try, but thus far, no luck. Maybe his college roommate will shame him away from it.

I mean, how much difference can there be?!

I leave you with a montage of Connor’s funky sleeping positions. Apparently some people have to plan their whole day around their kid’s naps. Not me!

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Ordinary Life, Parenting, Tuberous Sclerosis, Uncategorized

There’s even room for a beer fridge on the porch!

June 25, 2013 Rebecca Gaunt 1 Comment

So that neighbor I told you about? The one the put his house up for sale? They got a contingent offer of some sort. So I’m annoyed they got one first, but at least they are now out of the running. Plus, according to my realtor, they aren’t set to close until the end of July. At least if they accepted a lowball offer, and I have no idea if they did, it won’t affect our comps. I’ll be curious to see what they get though. We attempted a walk through with our realtor, but when we got there, there was a note that said not to enter without showing instructions. Uncertain what that meant, and if there was an alarm, we didn’t go in as we were unable to get the realtor on the phone (the house is empty). I can tell you there is a lot of rotten wood on the porch.

In the meantime, we continue to have plenty of showings, but no luck yet. I’m starting to hate the Autumn Lake neighborhood near us which shares our floor plan, and has a ton of homes on the market. I know one of our weekend viewers bought one over there because it had a master on main. She didn’t even know she wanted that until she saw it. It was otherwise very similar. Stupid, stupid Autumn Lake.

We’ve had three people come back for repeat showings. Always the bridesmaid, never the bride. One of those was also this weekend. We were in her top 3…number 3 of course. She ended up choosing a house on a lake even though at the original showing, she was so afraid of snakes coming up, that she wouldn’t even go in the back. Well, alrighty then.

We went house hunting yesterday for the first time and of course I fell in love with a house. It has everything I want, though the price requires some negotiation. So far, I have been the chill one about having the house on the market, while Chris has been very antsy and agitated. Now I’m irritated. Let’s move this along already. I WANT that house. It’s more space, a screened in porch, and all the upgrades I could want.

In happier news, Connor is crushing it–life, I mean. He just got himself into a sitting position on his own for the first time a little bit ago. He’s babbling mamamamama, too. His newfound mobility has proven to be quite the life adjustment for us. I know everyone goes through this, but we’ve had 15 months to develop lazy habits about where we could set him down. Now his new hobby is hurtling himself off furniture. First it was the couch, which startled him, but he was okay. Then he made it off our bed, landed in a sitting position, and thought it was hilarious. But then it was the changing table, and while he wasn’t hurt, I think he scared the crap out of himself. I know I certainly stopped breathing when I heard the thunk. All I did was turn away to grab a diaper! So now I have to keep reminding myself that he cannot be left on anything at all even for a second.

I’m also excited that after years of trying to have kids, my friends Giovana and Damien are down in Colombia to pick up their son David. More on that when they return in 5-8 weeks…

Gio and Damien's mustache-themed baby shower. — Gio and Damien’s mustache-themed baby shower.

Parenting, Tuberous Sclerosis

At least we have an efficient government…nope, couldn’t type it with a straight face.

June 19, 2013 Rebecca Gaunt 3 Comments

I just want to make sure I have this completely straight. The government program we’re eligible for to help cover Connor’s insurance premiums really needs EVERY SINGLE EOB from 2012? Okay, kind of a pain, but call to United Healthcare made. Wait…you mean the program that I called on their assistance line weeks ago that never called me back? You’re telling me that a government worker who doesn’t have time to return a phone call to a concerned mommy is going to read all THIS before they can approve us?

Kinda thought these would be a little more consolidated, but hey, I'm sure premiums would never go up to cover excessive postage ;) — Kinda thought these would be a little more consolidated, but hey, I’m sure premiums would never go up to cover excessive postage 😉

It must be true though. It’s not like these programs for people with disabilities and health problems would ever make people jump through hoops to discourage them from applying…

Or would they?

Bsaaa hahahahaha!

Parenting, Tuberous Sclerosis

When you put electrodes on my head, can you see how annoying I think you are?

June 19, 2013 Rebecca Gaunt 2 Comments

“Oh good. I get a day off from having crap on my head so that I can have crap on my head.”

Connor doesn’t talk, but I imagine that’s what he would have said yesterday if he could. A whole day without his cranial remolding helmet, but he ends up with electrodes and gauze everywhere. And you might think, oh, poor Mixed Up Mommy. Having to spend eight straight hours in a doctor’s office while Connor has an EEG. Actually, I’m pretty sure nobody is thinking that, but that’s okay. As long as it doesn’t involve a check-in at Scottish Rite, I’m fine.

Oh. You weren't real clear, Mommy. Thanks for nothing. — Oh. You weren’t real clear, Mommy. Thanks for nothing.

This EEG was a little more challenging now that he is mobile. There was a lot of rolling, tangling and attempts to play with cords. But considering only one electrode ever fully came off his head, and I was able to reattach it, I consider it a victory. We read some books, played, I worked on an article and we took a long nap together on his jungle mat.

The EEG was just a check-in to see how things are going since we are starting to wean him off the vigabatrin. His spasms have been controlled since last September, so we’re hoping there’s no more need. We introduced Trileptal a couple weeks ago to see if that, along with the Keppra, will knock out the complex-partials he’s been having. It seems to be helping as they have become fewer and farther between. He had none yesterday, naturally. Overall, he’s doing well in the seizure department. Even though he’s not totally free, the few he does have are 10-20 seconds of pursed lips and staring and he snaps right out of them. I think the EEG will look as normal as it can — meaning his EEG will probably never truly come back normal due to the tubers, but that’s okay as long as nothing is going on that negatively affects him.