Tag Archives: selling our house

Remember when I gloated that we were done with vigabatrin? Oops.

September 10, 2013 Rebecca Gaunt 7 Comments

Note: So I wrote this blog yesterday, but was unable to post it. “Why is that?” you probably didn’t ask…well, you know how Comcast never wants to come out the day you need them, or they give you a window of say, 4 to 8 p.m. and show up at 7:59? Well, try canceling your service. THAT they can do not just on time, but BEFORE you asked them to. Way to make a random burst of efficiency another aspect of your subpar business model. There is an update at the bottom from this morning.

It was a grumpy weekend. We’ve been packing the house, getting ready to close on Friday, and I’ve not been able to summon any energy or interest in the process. Plus Connor’s seizures have been increasing. We were concerned a couple weeks ago when he had eight in a day. Then this past Thursday he had 13. Earlier this year we went a couple months with nothing! We had this beautiful period of time when we didn’t even touch our —Seizure Tracker App— What is going on? Then this happened:

See that? Do you? 50 seizures in one day? What. The. Hell. Was. That.

A few possibilities. 1. We weaned him off Sabril (vigabatrin) a couple months ago and maybe that was a mistake? They’ve been increasing ever since. 2. Since Trileptal failed, we have been weaning him off and starting Onfi. Maybe he just hit an all time low of meds in his system as a period of time of low trileptal as we weaned and low Onfi as we started intersected.

Maybe there is still a chance Onfi will work? I hope so. We will obviously go back on vigabatrin if we have to, but I would really rather not with all the eye appts and ERGs that go along with it due to the risk to peripheral vision.

I called his neuro on Saturday when this was happening as someone is always on call. Everything always happens on weekends, doesn’t it? All those months I laid awake in fear of the onset of infantile spasms, I thought, I know they will start on a Friday night. They did. Thank God, that was how I discovered they have someone on call on the weekends. This weekend, however, it was someone covering for them, not his regular neuro or his partner that diagnosed him and also knows Connor well. He had me administer Klonipin 2x daily to get us through the weekend. I just got off the phone with Connor’s neuro and we discussed the concern of whether these could be spasm related, so I sent him the videos I was FINALLY able to get this weekend –these seizures come on so fast it has been a pain– and he went ahead and increased the Onfi. Coincidentally we have an appointment with him tomorrow morning, so hopefully we can figure out a plan. My guess right now would be that we’ll probably give Onfi a little longer, since the seizures haven’t been AS crazy as Saturday and if we don’t see a change soon, back to vigabatrin. That’s my guess anyway. We’ll see in the morning.

I just don’t want anything setting him back. He’s doing great. He has gained so much in the last couple months. He only just started crawling and now he’s pulling to stand. Last Thursday in physical therapy we worked on showing him how to pull himself all the way up because he was only getting as far as his knees. The very next day he did it twice. And once again, we owe it to Emma Cat. His relentless pursuit of the most tolerant cat on Earth inspired him to try and get up the stairs. Getting mobile has really triggered his curiosity and he wants to get into everything. We don’t need a bunch of seizures slowing him down!

We also got his MRI results back from Boston. No growth! He has no SEGAS fortunately, and his SENs remain small. I’m waiting to receive more feedback on the tubers. Now that’s he older we should be able to get more details on the number of tubers and their precise locations. Hopefully this will help us target any potential issues he might have. For example, if he were to have one in his speech center, we would know that language development needs that much more attention.

The weekend wasn’t all bad though. My first planned event as the Chair of the TS Alliance of Atlanta/ North Georgia was Sunday. It was fun and I learned a lot about planning an event…haha. Some big lessons learned. But thanks to all who came out!

The movers come tomorrow to get us out. We will be staying with my parents in the meantime. My plan is basically, walk in the door, hand Connor to them, go to bed, wake up when Chris has unpacked everything in the new house.

What could go wrong with that?

Update: The house is empty! I felt kind of sad to see it…our first family home 😦

We had our neurology appointment this morning. After seeing the video, he felt they were epileptic spasms, and they clearly started to surface after he was initially weaned off vigabatrin. So back to the vigabatrin we go. Oh well, anything to stop the seizures. As much as I don’t enjoy mixing the packets (why can’t this med be made stable enough to come pre-made in liquid form!) or the regular eye appointments, it’s the ERGs I really don’t want to deal with. Ugh. But you gotta do what you gotta do.

So the plan is to start that, stay on the Onfi, and once we see a difference we can start weaning him off Keppra, one of the meds he’s been on almost since birth.

Tomorrow morning I get the joy of taking Connor to a 7:40 am eye appointment. It was to be his final required eye appointment due to his vigabatrin prescription. Now I get to hand him the paperwork to start all over again.

As Adam Sandler would say, “Whoop dee doo!”

Medicine medley (trickycustomer.com)
Why our American Medical System is broken. (phoebeholmes.com)
The Cure (tsmum.wordpress.com)

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!

Ordinary Life

Why is Michael Bolton messing with my life?

August 16, 2013 Rebecca Gaunt 1 Comment

Why does life have to be so damn frustrating? You know how everything just fell into place with selling the house? Of course it couldn’t be that simple. Also, I’m really struggling not to drop an F bomb in every sentence today.

Everything was going along swimmingly until Michael Bolton showed up at my house. Well, at least some guy trying to look like the 1989 version of him, hair and all. The appraiser of our current property. After a few days of him dragging to turn it in, we all had the distinct feeling he wasn’t going to meet the sale price. We began to prepare for the possibility that we needed to make some more cash appear on our money tree in the backyard. We threw around some figures that it might be. None of those figures was as high as $20,000, but indeed, that is how much he undervalued our house by.

So now everything is a mess. A mess for the people buying our house, for us, for the people whose house we are buying, and the people whose house they are buying. Good old Michael Bolton wannabe has jacked all of us up big time.

Our realtor is fighting the appraisal. Especially since he used a pending sale as a comp (a comp has to be closed) and he did not use one property from the Autumn Lake neighborhood (remember the one I complained about stealing all our buyers because they have the same builder and floor plans and are right behind us?) He is ignoring her at this point and she’s talking to the supervisor. But if we can’t get this one adjusted, we have to get another appraisal, which ain’t free, plus, now we are looking at major time restraints, which mean that to continue we must reschedule the inspection of our new house that we cancelled for fear we’d be paying for it for nothing. We will have to do it without knowing if a second appraisal will do us one damn bit of good.

Basically, I’m making the call to potentially flush more money down the toilet that could go into fixing up our current house if this blows up in my face. My anxiety has me feeling like I could throw up. We’re both frustrated, and Chris is at the point of just wanting to fix this house up. But I can’t let go of the fact that if we can make this work, I think long-term, the new house might be the better solution. But the thought of continuing to flush money makes me want to throw up. What if I’m making the wrong call? If we can’t get this appraisal raised, should I just throw in the towel? To even make a second appraisal work, the buyers would probably have to change lenders, too.

Thank you, Michael Bolton, the appraiser. But a couple days ago I was feeling positive and excited. Now I want to punch someone. You.

Have a lovely undervalued day, sir.

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

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!

Please click the icon to the right to vote for me on Top Mommy Blogs! You don’t have to do anything other than click it. I get a lot more referrals from them, the higher I’m ranked!

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.

Mixed Up Mommy