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
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…
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.
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.
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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.
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.
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.
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.
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.
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.
Living in Atlanta, loving travel and watching my son kick tuberous sclerosis complex's butt.