Tag Archives: music

Tornados, bubbles, and wine. Oh my!

Ten days. Itstanding has been ten days since we last recorded one of Connor’s eye rolling seizures with our SeizureTracker app. Yes, there’s an app for that. Just like that, after five months of this weird seizure activity and a 3-day in-patient EEG–nothing. It is awesome, and we just try to enjoy it without projecting ahead because there are no promises in TSC land. He’s so much more alert and engaged in the meantime. Even more giggly, more aware of his surroundings, and increasingly open to people he doesn’t know as well. He had his best swim class ever last week. I’ve been swearing to his instructor that my kid really does smile–I have pictures to prove it. But week after week, though he didn’t fuss or cry, he openly regarded us as dumbasses for requiring him to take an extended bath in an oversized tub to off key singing. But finally, he not just cracked a smile, but laughed and did all his own kicking without me prompting him to move his legs.

The class he has been enjoying immensely is music. He is very interested in the other babies, which is great because I want him to be inspired to crawl and move like them. First he seemed to have a man crush on Ben, but this morning a new love crawled into his life and knocked his socks off. Well, actually she crawled over and just yanked one of them off, but he was so instantly smitten by Priyanka’s bold gesture, that he grabbed both her shoulders and went in for the forehead kiss…or lick. He has made a wise choice. Mom is an ER doc. I feel good about having a doctor in the family. And if Priyanka ever seems distracted by any of the other boys, I’ve observed that I can win her back for him with my car keys.

Connor can now stand when bracing himself against the couch, which is nice. He is also firmly into the “it’s fun to throw everything on the floor” phase, which is less nice. He started speech therapy last week, and I sense some of his grumbling will eventually form into four-letter words. His speech therapist brought him some awesome bubbles that are unlike your standard Target bubbles. These don’t pop as easily, allowing him to catch them, stack them, and for me to scrape them off furniture for days afterward. But look how much fun he’s having.

Bubbles 1Bubbles 2

Meanwhile, in adult world, I’ve been trying to motivate myself to go out more. It’s so easy to be lazy and do nothing when it’s cold AND you have a kid. I actually had two social engagements in one weekend. I felt like I was 27 again! Chris and I attended a paint and wine tasting function at a  local gallery with our friends Giovana and Damien, taught by our friend Yuri Strom (insert reference to Yuri so that when she’s famous I can prove I know her). I love the way each of our paintings shows our personality. My “I need to please by doing it right, but I’m trying to emulate a carefree lifestyle” painting, Chris’s “OCD everything must be symmetrical” painting, Damien’s “I’m just here for the wine, so my sun’s gonna set in the east if I feel like it” painting, and Gio’s “I’ll show you, happy Tuscan countryside, exactly what pain is” painting.

art gio painting

art chris and damien 2

 art gio art me

art group

Barcelona barThe next “morning” I went to Barcelona Wine Bar for brunch…at noon. We live in the Bible-thumping state of Georgia, and only just got Sunday alcohol sales. Of course the government still feels the need to regulate the hours that is permissible, so they can’t serve until 12:30, thereby destroying the essence (mimosas) of the brunch. So, I guess it was really breakfast for lunch. Oh well. I showed the gov’ment by ordering an entire bottle of wine.

Oh, good. Everyone got the boot memo.

Oh, good. Everyone got the brunch boot memo.

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The evil pharmacy strikes again!

A favor to ask of everyone: please click on the Top Mommy Blogs link to the right. You don’t have to do anything once you get there, unless you want to browse other mommy blogs, but those clicks get me a higher ranking, which gets more readers to come to my blog and helps spread the word about TSC. Due to a glitch with HTML, it turns out none of my cllicks counted for the last month and I dropped off the ranking list, so please help me get back up!

Connor has now had two swimming lessons, about 30 minutes in length. He generally spends the first 26 minutes looking like, what is wrong with these freaks and why are we doing this? He spends the last four starting to warm up to the idea, and then we get out. But he doesn’t fuss or complain, not even when we dunk him. Just looks at me like I’m a world class idiot.

I'm a Junior Bubble Blower!
I’m a Junior Bubble Blower!

He’s also about to start music therapy. He responded incredibly at our initial meeting with the music therapist, so I signed him up for a weekly group class with other kids, and he will also do a weekly private session with the therapist. And the best part?! Besides the fact that he responded so well to her? She is charging less for a private session than our specialist co-pay would be if I wrangled a way to get it covered.

I”m very excited that I’ve booked my flight to DC to be part of the Walk on the Hill to get more government funding for TSC research. We’ll be making phone calls to set up the meetings with senators and reps shortly. Connor is excited to get rid of me for a couple of days so he and Daddy can get a keg. We’re also in the process of planning our next study visit to Boston at the end of March. While we’re there, we’re planning to have him seen in the Boston TSC clinic. It’s not that we’re not happy with the care he gets here in Atlanta, but we’re already being flown up by the study, so it only makes sense to have as many eyes on him as possible. Happily, we are covered by United Healthcare. I’m feeling good about UH today. Sure, we’ve had our minor aggravations, but piddly stuff. Thank you, United Healthcare, for not putting me through this, and thank you, social media, for allowing this. I’ve only ever managed to use social media to get refunds on crappy products or questionable charges, so this is quite impressive. It’s just a shame that this is starting to become the norm of how people can get anything done. You can’t be nice anymore, and that sucks. Aetna deserves the bad press. (If you don’t have time to click those links, long story short: Aetna was behaving HORRIBLY toward another TSC mom, and putting her daughter’s life at risk).

Speaking of companies that suck, Accredo Pharmacy is at the top of my s#&* list. I’ve complained about them before, here and here, in case you don’t recall. I didn’t throw their name out there then. But I’m done, and would love nothing more than for a Google search of their name to lead to my blog, especially since I discovered in an online TSC discussion group, several other people fighting with this inept facility. We encountered yet ANOTHER problem filling our prescription of vigabatrin, Connor’s most important medication, a seizure medication. Seizure medications are the kind of medications you don’t just miss a dose of. It can be serious, but this pharmacy, ACCREDO PHARMACY, shows time and time again that they have no understanding of this. Or they just don’t care because it’s a specialty drug and they know we can’t just run to CVS instead.

So this time THEY called ME to set up his refill shipment. It seemed to go smoothly. I thought things were finally flowing. Since we had over  a couple weeks left, it was scheduled to come about 10 days later. They really love to ship at the last possible second, but I’m tired of arguing with them, and since everything seemed to have been cleared up with them, I thought, well this still gives a few days of safety net. Unbeknownst to me, this was not just a refill. It required a new authorization from the doctor. Now, that is THEIR responsibility to handle, but I wish I’d known because I would have seen it all coming and facilitated the refill as a precaution, as I’m well aware of the fact that this pharmacy is barely functioning. The day the meds are supposed to arrive I get a call saying they never shipped because they never got a response from the doctor. Funny how they have this problem, but when I need to get his other stuff at CVS, I never do.

On the phone AGAIN with Accredo.
On the phone AGAIN with Accredo.

And nobody ever called to tell me there was a problem. Something I could have solved by contacting our doctor, which I now did in a panic because I know how slowly these idiots move, and I know a new prescription has a turnaround time of roughly six years, even though it’s 2013 and a tweet can circle the globe in 4 seconds. The neuro nurse contacts them, provides the prescription, and then proceeds to have them remove all the incorrect contact info from their database because this whole time THEY HAVE BEEN CALLING THE WRONG PRACTICE! And guess what?! I have already corrected the phone number with them. MONTHS AGO. At this point I’ve involved an employee at the pharmaceutical company that I was put in contact with regarding previous issues I’ve had with Accredo, telling her I’m freaking out because I don’t know if it’s coming and every time I call, I get a new rep who has no clue what’s going on. So she’s doing something, and then she tells me she has someone else looking into it as well, and I continue to call and tell my story over and over to every clueless rep that answers. It’s clear that none of them undertand that it MUST SHIP TODAY. It’s Friday. It MUST come Saturday because we fly to Boston Sunday and our last dose is Monday morning. Nobody cares. By the way, when I called the next day, they STILL had the wrong number for our doctor in the database. Somehow, miraculously, it ships Friday afternoon to be delivered the next day. I don’t know if it was my pharmaceutical contact or not, but I imagine it wasn’t MY powers of persuasion. But I can’t handle these monthly Accredo meltdown days anymore. So I took to the TSC discussion group to warn people away from this place. Options are limited, but if they can, run, run away! Two other people shared their nightmare stories with me about Accredo, how one actually has run out of meds, and the other can’t get her first shipment scheduled to save her life. So I privately passed the contact info I had of the pharmaceutical person, and can only hope if enough people complain, this place will get cut off.

Connor’s neurologist plans to attempt to wean him off the vigabatrin when he turns one. If the spasms are gone, it’s done. If they aren’t, we have to stay on it. Oh please let them be gone, first of all for Connor, but also, just a little bit for my sanity, too.

Having your own Accredo issues? Please read my followup on Accredo here.