Nobody is falling for this Xfinity garbage. We still know you’re Comcast and that you don’t know what you’re doing.

Nothing bonds people like mutual hatred. Perhaps a sad fact of human nature, but true. Whether it be a co-worker or a business entity, lifetime relationships can be built. In fact, 15 years later (ermagherd, when did that happen) I fondly recall the cold, unfriendly girl that lived in one of the single rooms on our dorm hall. She came and went, acting as if the rest of us didn’t exist. Her room happened to be painted purple, therefore she was dubbed “purple room girl.” That was the first bonding activity — talking about how rude and weird she was — amongst me and several girls I’m still friends with today. One-by-one, girls wandered out of their rooms to share an anecdote of how “purple room girl” gave them a death stare for brushing their teeth too loud. Okay maybe hatred is strong word…I didn’t hate her. She just made me uncomfortable. That is, until she left her alarm set for 2 a.m. one weekend while she was off with her equally creepy and unfriendly boyfriend. It blasted through the walls until I finally had to get the RA on duty to go in and shut it off. Then I hated her, and I think he did, too.

I love that at least once a week, someone finds my blog by Googling “Accredo complaints” or “Accredo pharmacy sucks.” More bonding.

So now let us bond over a mutual hatred of Comcast! Here, I’ll start.

We recently moved (why am I blogging about Comcast, when you want to hear about Connor and the new house? It’s coming soon, I promise). Chris is the only person I know who had nice things to say about them. No matter how many people I know that have it, he is the only one that would defend them. But they finally broke him.

First, the company that is famous for not coming out as quickly as you need them, shut off our cable early. Yes, Comcast, we actually wanted cable for the entire duration of living there. Since when are you early?

When Chris set up the transfer, he was told we could move the boxes ourselves if we wanted. They would have the cable already turned on for us. Guess what? It wasn’t. After 45 minutes on the phone the Friday evening we moved in, a couple things were established. One is that when he set up the transfer, the person who did it was supposed to transfer all the box numbers to the new house. So Chris read them all off and they were — supposedly — transferred that night. But when the cable continued to not work, the person on the phone figured the person never came out to turn it on. Shouldn’t who got dispatched and whether they did their job be documented? Then they couldn’t even get us someone the next day, though THEY screwed up. Not until Sunday. Chris missed the start of college football, and that’s when his Comcast spirit started to die.


So when they got here on Sunday — oh hahahahahahahahaha! — I kid. Nobody showed up Sunday.  And when we called again, there was no record of any move/change of address apparent to the person on the phone. This is after we spent an hour waiting on hold before we gave up, then had to call back, then wait several hours for a callback. They couldn’t see where anyone had ever been assigned to come out. An entire football weekend gone. It’s clear at this point that there is no way we will see the final episodes of Big Brother, Dexter, the premieres of Mindy project or New Girl, or any of our other shows for the foreseeable future. My husband is wilting before my eyes without syndicated “Big Bang Theory” episodes, I’m horrified that I won’t be able to live status update about how this year’s BB winner was a floater and Connor is debating giving up his dream of curing cancer without the tutelage of Sid the Science Kid.

The person on the phone wants to solve the problem by setting up another appointment that presumably nobody will show up for (Dr. Phil taught me that you teach people how to treat you) so thankfully, finally Chris cuts her off with, “clearly you don’t want my business, so how about we just cancel the whole account.”

And so our relationship with Comcast was done. Oh, wait. Not yet.

Next we receive a bill of $1400 for all the unreturned equipment. We had already turned it in as soon as we cancelled, but what killed me was this bill was sent BEFORE all the issues and cancellation. They told us to move it, then they BILLED US FOR IT!


Then we were done. Oh, nope! Not yet!

Next we receive a bill for the next month because they have started a new account for us (with Chris’s name spelled wrong–two s’s, really?) AT THE OLD ADDRESS.

I don’t dare to presume it’s over. I can only hope. When I write my e-mail complaint to the powers that be, I think I will merely send the link to this entry, rather than waste more of my time. It’s not like they’ll care. If they did, when you follow the Twitter and FB hashtags for #Comcast, you wouldn’t find an endless stream of complaints ABOUT THE SAME THINGS.

Also, hiring staff to monitor Twitter for complaints who claim to want to help, directing people to e-mail the ComcastCares address, claiming that executives will review the issue? Good one. Nobody responds from that address, in case anyone is out there waiting for an answer. But at least you can maybe a fake a few people out on Twitter, with a campaign to create the illusion of giving a crap.

And, oh my, I had no idea that Comcast does security systems! I imagine it works a little something like this: “Hello, I’d like to report an intruder stabbing me.” “One moment please. This security system should be available shortly. Ref Code: FUcustomerNobodyHereCares.”

Now you go! Let’s bond! Comment with your worst Comcast experience! Maybe they’ll read your complaint, too. Okay, obviously I’m being ridiculous, but it just feels so good to vent. Come on, everyone. Let purple room girl have it!


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

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!”