Tag Archives: developmental delays

Parenting, Things to Do Around Atlanta, Tuberous Sclerosis

Another milestone! And costume problems…

October 23, 2013 Rebecca Gaunt 2 Comments

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):

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.

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.

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.

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

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.

I am extending the deadline to enter the giveaway for the four FREE online speech therapy sessions. Enter here. There is no obligation beyond the four free sessions.

IEP’s – What do you need to know? (calebsdoggy.wordpress.com)

Boston TSC Study, Tuberous Sclerosis, Uncategorized

The scores are in…

August 28, 2013 Rebecca Gaunt 2 Comments

Just received the results from Boston on his Mullen scores from the TSC study (nope, still haven’t heard about his MRI). Definitely a lot happier with the scores this time than last time.

Age: 17 months

Mullen Scale	Descriptive Category	Age Equivalent
Gross Motor	Very Low	9 months
Visual Reception	Below Average	14 months
Fine Motor	Very Low	14 months
Receptive Language	Very Low	10 months
Expressive Language	Very Low	9 months

Obviously I wish there were no delays, but I’m pretty excited to see 14 months in two categories. That’s not too shabby considering all he’s been through. And I can’t say the low ones are a big surprise. He just started to crawl and he doesn’t have any words yet. But he is continually progressing and I believe he will get there, especially in motor skills. He’s pulling himself up on furniture constantly, and while he can’t quite get to standing, he is trying.

I’ve sent the results off to his Early Intervention team to get their thoughts…

Now if I could just get the MRI results.

Boston TSC Study, Travel, Tuberous Sclerosis

Which is the bigger scam? Appraisals or the TSA?

August 27, 2013 Rebecca Gaunt 4 Comments

The last couple weeks have been rather exhausting in good ways and bad ways. Good = trip to Boston. Bad = corrupt housing market.

Might I start by saying I hate property appraisers? I think I said that in my last post. It is still true. Despite the fact the houses by the same builder with the same floor plan have recently sold around the $200k within walking distance, our appraisal at $185,000, $20k below the agreed upon sale price will stand. We were already taking a hit from what was paid. And despite our complete makeover of the lawn from dirt to gorgeous grass, the addition of granite in the bathrooms, a thorough de-brassing of fixtures, a new water heater and a new roof, it’s still worth $25k less than it was appraised for in 2007. So dear, dear appraisers, yes, we all know you were oh so shady in your role (I say role, as banks and irresponsible buyers should not go blameless) in helping destroy our economy, and I’m so glad that you can continue to screw up people’s lives by swinging to other end of the spectrum and undervaluing everyone’s properties, as you once over valued them to line your pockets. I despise you and your industry. You have undervalued our house and taken money from us that should be going towards my child’s needs. I wish upon you a lousy life.

Yes, we are going ahead with the move. It will hurt in the short term, but is best for the long-term. We had to heap much fertilizer on our money tree in the backyard to make it possible. Closing is in two weeks.

In brighter news, Connor is crawling like a fiend. He’s truly my child as he keeps making a move for the kitchen island wine rack and tries to steal one of my bottles. I couldn’t be prouder. He also knows that I have toys to sell stashed in the laundry room, and despite the nine kajillion toys strewn about the house, he wants the ones in the laundry room. Emma has nearly lost her tail twice in his deadly jaws. I’m desperately trying to make him understand that bathrooms are grody mcnasty and that he should not follow us in there.

We went to Boston last week for his third visit as part of the TSC study. He also had his annual MRI at Boston Children’s. Everything went smoothly, and I can see why Michael Jackson was hooked on propofol after an extensive period of time trying to wake Connor — not in a scary way, he just really wanted to keep sleeping. It’s waaaaaay better than my melatonin. We haven’t gotten the results yet. Hoping for no growth, of course.

Connor’s veins continue to be elusive, proving that it isn’t just Atlanta that can’t get a vein in this kid. He always leaves looking like a retired pin cushion.

We’ve pretty much walked all over Boston at this point, so we just revisited some favorite areas.

We watched Harvard's sailing practice on the Charles River. — We watched Harvard’s sailing practice on the Charles River.

We visited the only Curious George Store in the world at Harvard Square.

Connor demonstrated that high chairs work best when you sit backward.

I love going to Boston. I actually think I could live there in spite of the cold. The only negative aspect of the trip was the idiotic TSA. I’ve actually been feeling more kindly toward this waste-of-taxpayer-money organization as having a kid has miraculously made flying easier in a way. We get to skip the security line in Atlanta, they do a quick, problem-free scan of his milk, food and meds as they are oversized liquids and we get to board first. I even get to bypass the full body scanner and walk through problem free. But this time, coming home, my sixth flight with Connor, suddenly things change. They pull his diaper bag as usual due to the liquids, but this time, because of them, she tells me one of his parents must submit to a full-body pat down, as well as have their personal bag searched. Chris is already on the bench putting his shoes on, so in complete surprise, I begrudgingly volunteer to do so. Two questions: 1. What the hell does having oversized baby liquids have to do with arbitrarily patting me down and searching my purse? 2. What is the point of letting the parents choose? If we are indeed carrying a bomb, obviously the one who isn’t wired up is going to volunteer. She informs me that if I get all his stuff in 4 oz containers, I can avoid this. Hey pharmacist, I’m gonna need all Connor’s meds in a series of 4 oz bottles, please, and make it snappy! I inform her that I have flown with him six times and this is a first. No response. So apparently bottles of Enfagrow in your bag = right of government agency to stick their hands up your crotch. And they wonder why we don’t thank them for their service to this country. That and the fact that they’ve never stopped an attempted terrorist attack. That’s the job of the other passengers on the plane.

Anyway, our plan to try name brand seizure meds in hopes of better control did not work. We are now weaning off Trileptal and moving on to Onfi. His seizures have been increasing, and though they are short and he recovers quickly, he drops suddenly. He’s face planted on the floor three times now. We have to stop these before he walks. Please let Onfi be the one.

Please click the link to the right for Top Mommy Blogs. It helps me climb the rankings, so more people find my blog and learn about TSC!

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.

Guest Blogs, Reviews and Giveaways

Leadership Lessons From a Special Kid (and giveaway)

July 24, 2013 Rebecca Gaunt 7 Comments

Note from Mixed Up Mommy: I’m pleased to have author Bill Treasurer as a guest blogger today. Proceeds from his latest book will benefit children with special needs. I also get to do a giveaway with five copies of his book! If you would like to receive a free copy, simply leave a comment on the post. I will draw five names on Saturday July 27 and contact the winners, as well as post them here. Check his book out on Amazon.

By guest blogger Bill Treasurer

For the last two decades I have taught leadership development to thousands of executives across the globe. I’ve written books on leadership and courage, and a widely used courageous leadership training program. I even did my graduate school thesis on leadership. Despite all of the wonderful leadership lessons that my clients have provided me, few people have taught me as much about leadership as my nine-year-old daughter Bina.

Bina (rhymes with Tina) has cerebral palsy. She is also profoundly deaf. Both challenges are the byproducts of a virulent staph infection she contracted at the hospital just days after she was born. Americans with disabilities make up the largest minority population in the United States. Some 54 million Americans have a disability of one form or another. And anyone who has been graced by the company of such people knows what a blessing it can be. It can also be heartbreaking. During Bina’s first year, it became clear that she was lagging behind her twin brother, Alex, in significant ways. Alex rolled over. Bina didn’t. Alex crawled. Bina didn’t. Alex responded to our baby talk. Bina didn’t. Alex received adoring smiles from strangers. Bina didn’t.

The first leadership lesson Bina taught me happened early on. At first, all I could focus on was Bina’s disabilities, which caused me a lot of anger. I’d think, “Why did this happen to her? Who caused this?” and “Why can’t she do the things her brother can do?” Then, just before she turned two, a friend of mine wisely suggested that I start focusing on Bina’s abilities, not her disabilities. When I heeded my friend’s advice, Bina started progressing much more rapidly. In some strange way, by focusing on her disabilities I had become a block to Bina’s progress. I had pigeonholed Bina as a “handicapped” person and had started treating her as such, often by babying her. Once I started focusing on her abilities, my parenting shifted from taking “care” of her, to fostering her strengths by encouraging her self-reliance. Leadership lesson #1: People go farther when you focus on what they can do, not what they can’t.

The next leadership lesson came when Bina was four. At that point, Bina was still in a stroller because she couldn’t walk. Her brother Alex, on the other hand, was turning into a rambunctious little Ninja gymnast. To encourage his aerial hijinks we set up a trampoline in our backyard. I’d teach Alex trampoline moves while Bina watched from the sidelines. At the end of our little practice sessions I’d always make time for Bina too, holding her little hands and bouncing up and down.

One day, just to see what would happen, I sat behind Bina, stood her upright, steadied her hips, and let go of her hands. Then Bina did something she never had done before: She took three full steps. On the hard floor, Bina was never confident enough to do this. Kids with cerebral palsy fall down a lot, and Bina was no different. She had fallen off enough chairs to know that the hard floor wasn’t her friend. So watching Bina take three teetering steps was hugely thrilling. On her fourth step she fell to the mat and giggled as my wife, Shannon, and I cheered wildly

Recognizing that we were onto something, Shannon and I began to set aside time each day to walk with Bina on the trampoline. Before long, three steps turned to five steps, and five turned into ten. Then we set up a long runner of matted cushion on our back deck, figuring it would help her make the transition from the spongy trampoline surface to the hardwood floor. Drawing on her trampoline successes, Bina cautiously stepped out on the runner. Soon she was taking more steps on the deck than she was able to on the trampoline. It was all terrifically encouraging and inspiring. By setting up our backyard trampoline, we created a safe way for Bina to do something that she had previously felt was too unsafe to do. Walking, formerly a frightening and potentially injuring experience, now had become fun. Notice that the action we wanted Bina to take (walking) hadn’t changed. What had changed was the consequence (and only temporarily). The spongy trampoline surface was far more forgiving than our hardwood floors. When we surrounded the same action with safer consequences, Bina became much more willing to take a risk. Leadership lesson #2: If you want people to take more risks, make failure safe and success possible.

The third leadership lesson involves communication. Bina has had a cochlear implant since she was two-and-a-half. The technology has been a wonderful blessing in that it has allowed Bina to hear and acquire language. Along with intensive speech therapy, the cochlear implant has made communication with Bina possible. Still, Bina talks differently than most people. Her deafness impacts her intonations and her cerebral palsy affects the use of her tongue and mouth. So communicating with Bina takes a lot more patience and listening. It is not uncommon for her to have to say something a few times before you fully understand what she’s saying.

Few things provoke other people’s judgment than how one communicates. Northerners make judgments about southerners due to dialectic differences in pace (northerners tend to speak faster than southerners). In the same way, it’s common for people to make judgments about the intellect of people with special needs because they often talk differently. This is especially true for people who have cerebral palsy whose faces often contort and shift when they talk. But when you take the time to listen deeply to a person with special needs you get to know their preferences and perspectives. Over time I’ve learned that communication works best when I communicate with Bina on her terms, not mine. This requires adjusting to her cadence, intonation, pace, and unique dialect. Communicating with Bina on her terms has allowed me to discover how wonderful, caring, and beautiful Bina is, and it has deepened our connection to one another. Leadership lesson #3: Effective communication results from patience, listening, and setting aside your own communication preferences.

Being Bina’s dad has been one of the greatest joys, and greatest educations, of my life. I’ve learned powerful lessons about dignity, unconditional love, prejudice, and leadership. You couldn’t pay me all the money in the world to take Bina away from me, though I would give you everything I own for her to not have had to suffer through her challenges. In the end, though, my job is to love Bina as much as I can love her to help her go as far as she can go. To me, that’s the ultimate job of a parent…and a leader.

Bill Treasurer is the author of Leaders Open Doors, which focuses on the responsibility that leaders have for creating opportunities that cause people to grow. The book is carrying out its own message: 100% of the royalties are being donated to programs that support children with special needs. Learn more at www.leadersopendoors.com.

Bill is also the author of Courage Goes to Work, an international bestselling book that introduces the concept of courage-building. He is also the author of Courageous Leadership: A Program for Using Courage to Transform the Workplace, an off-the-shelf training toolkit that organizations use to build workplace courage. Bill has led courage-building workshops for, among others, NASA, Accenture, CNN, PNC Bank, SPANX, Hugo Boss, Saks Fifth Avenue, and the US Department of Veterans Affairs. Contact Bill at btreasurer@giantleapconsulting.com, or on Twitter at @btreasurer (#leadsimple).

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, 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.

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.

Anxiety/Depression, Parenting, Tuberous Sclerosis

Sweet Dreams? Not Likely.

June 15, 2013 Rebecca Gaunt 1 Comment

Now that Connor has finally decided that being on his stomach isn’t so bad, he’s rolling all over the place. If you set him down on one end of the room, I can guarantee you that he will soon be on the other. I wonder if he thinks to himself, man, if I had just realized how fun this was months ago when I first rolled over? He’s attempting to get into the crawling position, too. He also attempted to climb off our bed the other night. Maybe now, with all his progress, the dreams will stop.

I have these repetitive dreams in which he either starts imitating consonant sounds or starts saying words, and others where he starts to walk. They are, quite possibly, the most realistic dreams I have ever had. Every time I wake up from one, I spend a few moments discerning whether or not it really happened. When I realize it was a dream, I always feel profoundly disappointed and sad. But he’s getting there. He’s progressing every day.

Repetitive dreams both fascinate and annoy me. I’ve always had them, but they seem to change with each phase in my life. The ones I most vividly remember from when I was a kid involve cars, specifically my parents 1986 Ford Aerostar minivan. My parents bought the van upon our return from being stationed in Okinawa, Japan. We were headed to Merced, California, where we would take many drives to Yosemite and all over the west. My dreams at that time had me in the third seat of the van, on the winding mountain roads we so often took trips on, but there was never any driver. It always appeared to be just on the precipice of going over, but it didn’t happen. I was helpless in the back with a distinct sense of having no control.

My other car-related dream consisted of me sitting in a passenger seat of car of uncertain origin. Sometimes it seemed to resemble my mom’s 1966 Mustang, which she drove until 1992, when we moved to Atlanta and my parents bought an Explorer to accompany it’s Ford friend, the Aerostar (that damn van wouldn’t die for a few more years, subjecting me to the humiliating experience of having a driver’s license but not always being able to convince my parents to give me the Explorer for the evening). It’s 2013, and the Mustang is still in the garage buried under the remnants of my parent’s children, who moved out, but refuse to come back for all their stuff. Anyway, in the dream, I don’t know who was driving, but there was a hole in the floor of the car where my feet should have gone. My stuff would fall through, and I would fight not to fall onto the pavement as it rushed by underneath.

At some point I went from cars to dinosaurs. I can probably blame Steven Spielberg for that. Dream after dream I was in some random house with other people, mostly my age, but not always, hiding and dodging raptors and–whatever that dinosaur was that nailed Newman in the movie. If I could just get to that elusive front door, I would be okay…

Around the time I went to college I started having the worst dreams ever–the paralysis dreams. I have read somewhere that these may not be dreams, that it’s actually your brain waking up before your body–but either way, it’s terrifying. I would seem to wake up, but was unable to move or even open my eyes. I’d struggle with all my might to move from my frozen position, but it felt like several minutes before I could. In reality, it was probably just seconds, but it did nothing for my severe claustrophobia. Sometimes it would happen during a nap and I’d finally fly up off the bottom bunk, gasping for breath, roommate fearfully inching away from me.

Then came the teeth dreams that persist to this day. I discover that a tooth is loose, and unable to keep from messing with it, it ends up falling out. It has always been just one tooth until just a few nights ago when I lost three. I’m hoping that just means it’s the end of a dream era.

Then there are the dreams of never ending frustration. One is the entirely standard “I have to take a final, but I never went to class and I don’t even know where to go” dream. Not very much original material there, except that I’m always trying to make my way from my dorm on University of Georgia’s south campus to my class on north campus. I always seem to be on Sanford Drive, past the stadium and near the journalism building. I also have dreams where I am desperately looking for a bathroom, but no matter what bathroom I find, it’s impossible to use it without being visible to the public. Sometimes that’s because it’s just a huge, unisex room of toilets, and sometimes there’s a huge window facing crowds of people passing by. And finally, there are the dreams where I have to move out of wherever I am living, but can’t make any headway with packing. Things just keep coming up that get in the way.

Notice an unpleasant theme here? They’re all anxiety-based dreams. And I have them even when my waking life is in a state of pharmaceutically induced calmness. No repetitive dreams about Bradley Cooper, or winning a million dollars, or getting back into my size 4 jeans. Nope. Just the ones that leave that icky feeling that last through the first cup of coffee.

So tell me, what do YOU dream about?

Ordinary Life, Parenting, Tuberous Sclerosis

Anybody Want to Buy a House?

June 4, 2013 Rebecca Gaunt Leave a comment

Connor had a good report from the physical therapist today. She was excited to hear he is pivoting in the sitting position, and he was also much more cooperative in making transitions. We’re at a point where he can maintain a crawling position, rock back and forth in it, and reach out for objects, but he needs assistance getting into it. He’s getting better at sitting back down on his own. He can also maintain a standing position, but needs assistance transitioning into that position as well.

Working on his physical therapy just got a whole lot more aggravating since we put the house on the market this weekend. Decluttering the house meant moving all his PT equipment into the garage. Making myself do PT with him is already hard enough–not because I don’t love spending time with him–but because therapy isn’t exactly what you envision doing with your child when you decide to have one. Going to get something from the garage really shouldn’t be that big of a deal, but that’s me. Not to mention, my attention span has become so awful that a million things distract me on the way and I forget what I wanted.

I spent a good portion of today cleaning scuffs off walls and doors and trying to turn the shower floor back to a non-vomit inducing color. Plan of attack for the shower: Chris laid a coat of Comet with bleach on it at 6 a.m. and every so often I run some water and re-cover the surface. Twelve hours of this should do the trick, right? This is pretty much the last resort.

A couple did a drive-by on the house and I got down on all fours ninja-style to watch them watch the house. My life is pretty exciting.

Yesterday we got so carried away working on the house, that changing Connor’s diaper slipped our mind for an extended period of time. It wasn’t until he was bouncing in his jumperoo, and the downward motion would cause a cascade of urine to gush out onto the floor from his drenched diaper. I’ve always been grateful that the state of his diaper has never been a source for fussing, but I’m realizing that with my easily side-tracked state of mind, it would actually be beneficial if he’d give me the heads up once in a while. Yes, I really just blamed my baby for over-wetting his diaper.

I’m very rarely seeing any seizures with eye movement, but we’re seeing 1-2 a day in which he slumps down, turns his head to side, puckers out his lips and stares. They last 10-20 seconds, and he snaps right out of it.

Fingers crossed we start getting people looking at the house soon. I really hate making the bed for nothing…

Since I didn’t post much during May due to hosting so many guest bloggers, here are some highlights from the past month:

We went to Florida to visit Chris’s parents.