Category Archives: Parenting

Accredo Pharmacy Problems, Parenting, Tuberous Sclerosis

Why, why, why is it so hard to get my child his medication?

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I am an incredible multi-tasker. I am currently writing this blog, on hold with United Healthcare, and having a mental breakdown. Congratulations! You f*&^%$# finally made me cry. I’ve been pissed. But you hadn’t made me cry yet. That took a conjoined effort of United Healthcare, Optum RX, and Accredo Pharmacy.

It started when we got a letter from United Healthcare that they were switching from Medco Pharmacies (which houses Accredo where we get Connor’s Sabril) to Optum RX pharmacies. All mail order prescriptions should automatically switch over. Of course this raised my cautious red flags. So as soon as the change happened April 1 I called to check the status. After talking to a couple different people, it was established that Optum doesn’t carry Sabril (vigabatrin). I was referred back to Accredo. “So everything stays the same?” I asked. “Yes.” I was told. So today I called Accredo to refill the prescription. First time it picks up to silence. So I hang up and call again. Someone answers this time. They would not fill it as my prescription had been transferred over Optum. “Oooookay. So I call them to fix this?” “Yes.”

I call, listen to more piped music, and give all my personal info twice more to Optum to be told that it’s on Accredo to call and ask that the prescription be sent back, and that they should have offered to do so. Call Accredo again. Again, their line picks up to silence, and I have to hang up and call again. More holding. I tell them that they have to call Optum and get the prescription back. They tell me they can’t because I have no active insurance with them after March 31. They still can’t fill it. “So I call united Healthcare and tell them to do what? What exactly do they need?” I’m told to call UH and ask them to open an active account with Medco so Accredo can fill the prescription.

I call United Healthcare, more holding, more giving all my info, lots more holding, trying to explain, getting transferred, and I end up back on the phone with someone at OptumRX again. NOT what I asked for. He again starts the process of refilling Connor’s Sabril. “But two people told me you don’t have it. You’re saying you can fill it now?”

“I have it right here. I’ll take care of this for you.” I wanted to hope for a second, but deep down I knew where this was going again. “Oh, we have the prescription, but we don’t actually have the med.” Yes. Exactly what I’ve been saying. YOU have the prescription, but can’t fill it because you don’t have the med. Accredo has the med, but doesn’t have the prescription or authorization.

Finally, I do what I should have done all along and call SHARE, who works with the manufacturer to deal with prescriptions. They are now working on getting United Healthcare to give an authorization to one of their participating pharmacies so we can refill his prescription. Obviously who I should have called first, but for the love of God, people aren’t psychic. Those of us outside the medical world don’t understand the inner workings. I don’t fully understand the Lundbeck (manufacturer)/Share/Insurance connection. i just know my kid needs his stupid medication. And nobody offered me any instruction on how to handle this. All I got was a letter from my insurance making it sound like a simple switchover.

I guess I am not meant to understand this world of medical mysteries. I suppose I will never know the following:

1. Why a mail order medication can be so difficult to get your hands on, seemingly more difficult and a kazillion times more expensive now than back when people had to get it from Canada because it wasn’t approved here.

2. How a cranial remolding helmet can appear to be covered, I can be charged our uncovered 20 percent, only for United Healthcare to later deny the claim, forcing time to be wasted on an appeal.

3. Why CHOA employees never return phone calls. (Hey Wanda in medical records, it’s been over a month, but fortunately it turned out I don’t need that paperwork after all, so I guess just don’t worry about it.)

4. Why Obamacare doesn’t attack the heart of the country’s issue, which is that hospitals are charging increasingly outrageous prices with no rhyme or reason, operating off of Chargemasters that aren’t standardized or remotely in line with the actual cost of care, and are allowing this medical crisis a major role in the country’s debt.

Et cetera….et cetera…et cetera…

And to top it off, seizure activity is definitely back. I suspected I was maybe seeing very occasional absence seizures, but then yesterday we saw this. So thank you, hospitals and insurance. All the families dealing with health issues can count on you, that no matter how strong they are, how positively they approach their problems, you will always be there to try to break us.

And I guess now, 2.5 hours after getting up, after writing this blog in a mere fraction of the time I spent on the phone this morning, I will finally have my breakfast.

Ordinary Life, Parenting

Oops! I Passed on Too Much Pretty in My DNA.

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Connor has never been mistaken for a girl. Even when he barely had any hair and wore onesies that were up for debate. But suddenly in the last few weeks:

At Kroger: How old is she?

At Antique Store: She sure has some rosy cheeks.

On Internet: What a beautiful little girl.

In Some Other Place: What’s her name?

This has happened nine or ten times recently. Well, he is the prettiest baby ever. That’s not his fault. The long wispy tendrils curling over his ears and starting to climb down his collar…those aren’t his fault either. They’re mine. I always thought moms that couldn’t bring themselves to cut their kids’ hair were overly-emotional weirdos. And then his first birthday, when I said I’d cut his hair, rolled around. Apparently the same disease that makes me call things “foody food”, “milky milk”, and “sleepy sleeps” has invaded my ability to be the indifferent badass that once thought the following were good ideas:

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I’m lying. I still think they are.

Nonetheless, Chris seemed uncomfortable with the dichotomy of having always been told Connor looks exactly like him and now constantly hearing about how adorable his daughter is. Plus, I feel really awkward correcting people. So here it is. Connor’s first haircut, two days before he turns 13 months.

Before:

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After:

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Let me help you with that. I love sharp objects.
Let me help you with that. I love sharp objects.
Maybe this toy will distract you from grabbing for the scissors.
Maybe this toy will distract you from grabbing for the scissors.

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It's gonna take two of you to stop me from getting that razor.
It’s gonna take two of you to stop me from getting that razor.
Can I say, "That's hot!" Or will I have to pay royalties to Paris Hilton?
Can I say, “That’s hot!” Or will I have to pay royalties to Paris Hilton?

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Ordinary Life, Parenting, Things to Do Around Atlanta, Tuberous Sclerosis

Tanglewood Farms…and serious matters, too.

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Does anyone know how long the ear-shattering shrieking phase lasts? Asking for a friend.

Connor is continuing to do well. Since mastering sitting at the beginning of January he has increased his range of reach around him, and pulls himself back to sitting from positions from which he would have toppled right over not so long ago. His flexibility is frankly disturbing. But when one wants toes, one will have them.

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If assisted into a crawling position he can maintain it and lift an arm to reach for a toy. He can also hold himself in a standing position. The key is to now help him achieve these positions independently. Oh, and move while in them. My lower back longs for the day.

The good news is that we still haven’t seen any eye-rolling seizures since February 10. The bad news is that I suspect he may be having occasional absence seizures upon waking. I’ve counted maybe 6 or 7 instances in which shortly after waking up, he purses his lips tightly and stares off to the side. They aren’t very long–maybe 20 seconds or so. They don’t seem to have any lingering effect on him, but it’s still frustrating. We get these little windows of no seizures, and then something changes. We see the neurologist again on the 24th so we’ll discuss it then. Of course, this is much better than what was going on before.

As I mentioned, his current mode of communication is high-pitched shrieking. It’s kind of funny until he keeps it up for half an hour. Or we’re in a restaurant. He’s otherwise so well behaved in public, but his love of his own voice shattered some mimosa glasses at brunch the other day. Hear it for yourself. But don’t click that at work. People will think you are seriously weird. And then watch this just because it’s funny to see how much he loves seeing himself.

I’m having trouble gathering my sarcastic thoughts since I’ve been watching CNN coverage of the bombing at the Boston Marathon all day, so here are some happy pictures of our trip to Tanglewood Farms, an awesome petting zoo of miniature animals in Canton, Georgia.

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The only downfall of the weekend was that Connor exhibited some signs of allergies. After we had been at the farm for a bit, he began to rub his face into us again, and his eyes seemed itchy. This also happened the day before at a friends birthday party. Pollen? Like Daddy? Orrrr….

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was it the pony at the party? Pollen or farm animals? Pollen counts were at record highs (or so I’m told. Pollen only affects me as far as irritating me by getting all over my car and porch rocking chairs). Time will tell…

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Parenting, Tuberous Sclerosis

How I Found Perspective

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My one-year-old son Connor and I were stalked the other day. It happened at Target as I pushed his umbrella stroller through the women’s clothing section. Our stalker darted from clothing rack to clothing rack, unaware that I was watching out of the corner of my eye. I’d estimate that she was about five, and I’m pretty sure the reason she was following us was because she wanted to know what the thing was on Connor’s head. I would have just told her, simply said, “Oh, it’s just a cranial remolding helmet for the plagiocephaly that has occurred in the posterior region of his skull. No biggie.” Okay, that’s not really the way I would say it to a five-year-old, but I felt like I would ruin her fun by acknowledging her presence.

Yes, Connor has a fancy, new, almost $3,000 hat. And that’s minus any bling. You’d think three grand would get you some rhinestones or something. Thus far it has not impeded his favorite activities, which include throwing everything on the floor and turning his bottle upside down and squeezing the nipple to fill his belly button with milk. Or this:

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Connor’s physical therapist had brought up the possibility of a helmet many, many months ago when the flattening of his skull was much more extreme. We were able to do a great deal of correction simply by positioning his head, but he was still left with some residual flatness as he neared the age of one, so his neurologist suggested moving forward. I wasn’t thrilled with the idea of a helmet, but accepted it. I made the appointment and took Connor for the fitting. There were pictures and sample helmets around the office. I actually found myself getting a little excited. Having to get the helmet wasn’t ideal, but I couldn’t believe how adorable some of them were. There were tons of designs to choose from, and I narrowed my top two down to one with airplanes and one with soccer balls. Then the orthotist returned and obliterated my adorable vision of Connor with airplanes circling his head. He felt very strongly that the clear plastic helmets were a better choice than the more popular styrofoam lined version that come covered in adorableness. Plastic ones were less likely to chafe the skin, they don’t absorb sweat so they don’t stink, they are easier to clean and you can see any skin irritation that may be occurring. They can also be vented by drilling holes in them. I nodded along in agreement and said things like, “Can’t argue with that.” But in my head I was cursing the stupid practical helmet, that for the same price, comes minus flaming soccer balls. How do you say, “I want the cute one,” after that? But stinky styrofoam? I could wash dishes with the sweat that pours from Connor’s head, so clear plastic it was. That wasn’t the only moment my stomach would drop during the appointment. To be honest, I went in having done no research. I’ve spent the last year reading so much about his genetic condition of tuberous sclerosis complex that I just wasn’t that worried about a helmet. I’d find out the details when I needed to know them. So I was not expecting to hear that he had to wear it 23 hours a day. I also wasn’t excited to hear that while treatment is usually three to six months, since Connor didn’t get his until he was a year old, his treatment would likely be closer to six months than three.

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Those were my only negative moments though. Do I love the helmet? Not so much. I hate that it makes his head sweat so much that the effects of a bath are destroyed ten minutes after I put it back on his head. I hate that my adorable child has to wear it 23 hours a day. Oh, he’s still adorable in it mind you, but no parent wants anything to prevent onlookers from having the full experience of perfection that is their child.

I think if the last year had been “normal,” this helmet would really bother me. They’ve become much more common since the “Back to Sleep” campaign to combat SIDS, since putting babies on their backs has caused a huge increase in plagiocephaly (which is far preferable to SIDS, obviously). Nonetheless, I think I’d take it off him every time he left the house or someone came over. But the last year has not been normal. Connor was born with tuberous sclerosis complex, which causes benign tumors to grow in the organs. Currently, only his brain is affected, but we’ve dealt with five weeks in the NICU, seizures, brain surgery, daily administration of several medications, multiple EEGs, MRIs, infantile spasms, gross motor delay and speech delay. He has physical therapy, speech therapy and music therapy. I could care less about a stupid helmet.

I want a life where I care about the helmet. I also want a life where the opthamologist assures me that the occasional crossing of his one eye is not a big deal, but if it gets worse, it can be corrected with glasses, and then I freak out about how I don’t want him to have glasses. But I don’t care about the glasses either. I don’t want to be the mom that impresses the doctor by taking glasses (and helmets) in stride because after everything else, they just don’t matter.  “A lot of parents ask if their kids can just have eye surgery instead,” the assistant told me. “They’d rather their kid have surgery than have to wear glasses. I guess TSC really gives you perspective.”

Perspective. I’m drowning in it, whether I like it or not. And it only took me 31 years to find it.

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Ordinary Life, Parenting

The Axis of Medical Evil, the Board of Education and Gordon Ramsay would totally love my shoe collection.

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The weirdest thing happened when I called Boston Children’s Hospital to schedule Connor’s MRI for August when we will be up there for the TSC study again. An actual person answered the phone, and he immediately scheduled the test.

It was surreal. I dialed. Someone answered. Things were accomplished.

Meanwhile, I’m still waiting for Children’s Healthcare of Atlanta at Scottish Rite to return a message I left with the medical records department 2.5 weeks ago. So my list of CHOA departments that don’t return phone calls is now:

1. Scottish Rite EEG (note: call was returned after I recruited neuro office to get involved)

2. Emory-CHOA billing (note: call was returned over a month later once I wrote a letter of complaint and sent a copy to every single board member including the CEO)

3. Scottish Rite Medical Records (note: pending)

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The reason I was calling them is that I recently submitted my application for Katie Beckett Medicaid, which, if approved, will help pick up costs of Connor’s medical care not covered by insurance. I’ve submitted 8 metric tons of paperwork, only (I hope) minus his surgery discharge papers. Those must have been accidentally thrown away. I don’t know if the board is going to want proof from the hospital (even though the neurology notes make plenty of reference to it, but it’s government after all) so as a precaution, I sent in a medical records request. None of the check off boxes described what I needed so I tried to explain what I was looking for. They don’t provide the records until they figure out what printing it will cost and then they send you a bill. Apparently the department thinks I need the whole 200 something pages and they want to charge me over $100 for it. So I called to clarify that all I need is a couple pages pertaining to the surgery and I’m not paying $100 for it. The discharge papers were like six pages for God’s sakes. That was 2.5 weeks ago. I hate CHOA and their unprofessional business ethic.

A couple companies that deserve a positive shout out so that I can offer contrast: Level 4 prosthetics. Connor recently got a cranial remolding helmet (a more detailed blog to come on that). At his initial screening, it appeared to be covered and we paid the uncovered 20 percent portion. Fast forward a few weeks and I arrive home today from one of Connor’s helmet follow-up appointments to find a denial from United Healthcare. Say what now? You want us to pay for this $3,000 helmet? So I freak and contact all his doctors and physical therapist to get proof of necessity, and then I call Level 4, who I should have called first. They’re already on the appeal for me. Good stuff. Thank you! And United Healthcare, my child is adorable in his helmet, but I assure you it’s not just a fun accessory.

The other company is AquaTots of Kennesaw. I became nervous that I would soon be doing time for homicide due to parents who think they get to save the limited dressing rooms for their swimmers, so I expressed my dissatisfaction. They were very quick to respond and remedy the situation. And now the mom who thinks it’s okay to let her children leave their cars in front of entrances where other customers can fall and hurt themselves walks the earth safely again (until she once again almost simultaneously paralyzes me and makes me change my kid on the floor, then all bets are off).

So these are my days. Doing Connor stuff, trying to get into some freelance writing and watching Roseanne reruns. I feel like I should miss working more, but I don’t. Probably because by the time I left, my teaching to do list had changed so drastically.

Sample To Do List 2005

1. Lesson plans for next week

2. Copy 2nd grade newsletter

3. pull center materials

4. choose new read aloud novel

5. try not to turn beet red, break out in hives and pass out from anxiety when undergoing mandatory teaching observations

Sample To Do List 2012

1. Some random excel sheet with random meaningless data to be submitted to someone who will never even read it, assigned 5 minutes ago, due now

2. see #1

3. see #2

4. Collect elevendy bajillion weeks worth of data so a student can receive services, but probably not

5. Attend a committee meeting

6. see #5

7. see #6

8. see #7

9. figure out what you’re teaching tomorrow. Somebody wants another excel sheet with data due in 5 minutes

10. try not to turn beet red, break out in hives and pass out from anxiety because it’s a work day

And all for less pay every year. Hey, I get it. There’s no money to be had. Just be ready to see more of this stuff on school property if you don’t want to pay people in the education profession:

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I won’t say where I took this recent photo. I might need them to hire me one day.

What I do miss is how hilarious some of those kids can be. I received texts from a former co-worker the other day. She teaches students now that I taught a couple years ago in first grade. They told her that my “shoes haunted them.” My heels were like two feet tall, and they always watched out for me because they were afraid I would topple over. If I’d known I would have based my compare/contrast lessons on heels vs. wedges.

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I also decided to start pursuing my original plan to make some of Connor’s food myself. I have the little baby blender/steamer combo, but I’ve only used it for pretty basic stuff. I decided to finally make one of the recipes from the little booklet that came with it. Hey, why not? Connor eats EVERYTHING. I mean EVERYTHING. This was the result:

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I used to be disgusted by moms drinking and eating after their kids, but the other day I found myself fighting the urge not to eat half his spaghetti and meat sauce. Then I let him drink out of my water bottle. But I also realized he has 50 percent of my DNA. That means it’s half my saliva. So that’s okay, right? Is that what these moms have known all along that I didn’t understand? Or should I just go out and buy some mom jeans now?

Despite the failure of my foray into baby chefery, I am still happy because winter is finally rolling out and warm days have come. I leave you with photos of my little Gordon Ramsay in a good mood enjoying the weather.

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Only a ball pit until it's warm enough to become a swimming pool!
Only a ball pit until it’s warm enough to become a swimming pool!

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Parenting, Tuberous Sclerosis

Purple and red go together like Bert and Ernie.

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“Bert + Ernie for Marriage Equality” / Toy Sto...
“Bert + Ernie for Marriage Equality” / Toy Story / SML.20130327.IdealHusbands.Remix (Photo credit: See-ming Lee 李思明 SML)

IMG_3121Connor does not own a stitch of purple and Chris wasn’t on board with me dying his hair purple to match mine, so I recruited friends and family to wear purple on his behalf yesterday  for Purple Day and epilepsy awareness. Connor has epilepsy due to his brain tubers from TSC. That being said, we have not seen any seizure activity since Feb. 10.We didn’t do too shabby considering we were in stiff competition with the sea of red washing over Facebook due to the Supreme Court hearings on gay marriage. It was bad timing for me as red is definitely my color and I have a ton of it. But since that is a two-day affair, today I got to discover that my still purple hair goes great with a red top. Politics, schmolitics. I’m in it for the fashion. And who knows. Maybe someday, people will figure out that you can’t claim to have Jesus in your heart, and in the same breath, call someone a fag and condemn them to hell.

My mom rocking the layered purple look.
My mom rocking the layered purple look.
Arianna strikes a pose in a very fashionable ensemble.
Arianna strikes a pose in a very fashionable ensemble.
Giovana took her purple to the court house (where she's an interpreter, not a criminal).
Giovana took her purple to the court house (where she’s an interpreter, not a criminal).
Mieka represented in Canada.
Mieka represented in Canada.
Sara claimed she was having a bad face day, but she's never needed an excuse to send me a picture of her chest.
Sara claimed she was having a bad face day, but she’s never before needed an excuse to send me a picture of her chest.
Asma doesn't believe in wearing purple pantsuits to court, but eye shadow is another story (lawyer this time, still not a criminal-officially).
Asma doesn’t believe in wearing purple pantsuits to court, but eye shadow is another story (lawyer this time, still not a criminal-officially).
Sondra and Jareyl rocked some mother/son purple.
Sondra and Jareyl rocked some mother/son purple.
Rachel doesn't do purple clothes, but she does purple flowers.
Rachel doesn’t do purple clothes, but she does purple flowers.
Claudia, Isabella and Arianna made it a family affair.
Claudia, Isabella and Arianna made it a family affair.
Juliette was stopping traffic in her purple...oh my god, my captions are so stupid and yearbooky.
Juliette was stopping traffic in her purple…oh my god, my captions are so stupid and yearbooky.
Yuri only allowed her art students to use purple crayons all day. Right?
Yuri only allowed her art students to use purple crayons all day. Right?
Thomas knows the importance of accessorizing.
Thomas knows the importance of accessorizing.
Sleepy is modeling his human sister's former onesie.
Sleepy is modeling his human sister’s former onesie.
Lili represented in Barcelona, Spain.
Lili represented in Barcelona, Spain.
Danita took her purple to the bank. No really. That's where she works.
Danita took her purple to the bank. No really. That’s where she works.
Ann went to sleep dreaming of purple sheep.
Ann went to sleep dreaming of purple sheep.

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Parenting, Tuberous Sclerosis

Tomorrow is Purple Day!

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Spread the word about Epilepsy awareness!
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Playing with my purple hair spray!

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Ordinary Life, Parenting

Connor’s birthday party: You will throw up from cuteness overload. Consider yourself warned.

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I should clarify my title refers purely to Connor, not my decorating skills. But first, the decorations. It was a zoo theme, so I had Connor’s kazillion stuffed animals spread everywhere. I’m actually just realizing how much stuff I forgot to photograph, but that’s okay because I have so many awesome pics of Connor I don’t even care.

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Please note that my initial plan for the aquatic zone of the zoo involved using Connor’s baby bathtub as an actual pond. However, I discovered that none of his ducks have the remotest interest in floating upright, so I felt a pool of water containing what would appear to be a bunch of costumed dead ducks might not achieve the ambience I was aiming for.

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The cake by Claudia Arizabaleta:

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And the outfit. Oh yes. The outfit. Do you know what I am?

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I’m a lemur. Mom almost bought me a panda costume, but then she saw the lemur. Lemur=random. Lemur=you dressed your kid as a what? So here I am.


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But frankly, life as a lemur is hot and sweaty, so I did have to rock a second outfit for part of the party. But Mommy is proud because I learned that one must suffer to look good.

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Give me cake!

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Then I blew out some candles and took my first taste of cake. It was alright, but I don’t know why my mother is so obsessed with it. It’s no bottle of milk. But she did just sneak off to the kitchen to get more, so I guess it will grow on me.

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I partied way hard.

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So did Grandpa.

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Boston TSC Study, Parenting, Travel, Tuberous Sclerosis

A second trip to Boston leaves me with lingering questions…

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namely, Where was Cliff parking the mail truck when he went to Cheers? Having gone there on this trip, I’m not sure I buy that he was hanging out in a place that is so expensive to park.

At any rate, when I last left you I had gotten food poisoning in D.C. The next morning, Friday, I felt much better. No stomach pain, still off, but better. Once again I had cured myself in a day. And we wouldn’t even have to cancel the next day’s trip to Boston. Oh, oops. Fooled again, but went to Boston anyway. When I get to travel I can power through. Had we been at home, I’d have milked the bejesus out of the situation. But I lived. And lost a couple pounds.

This trip we extended for pleasure. We flew in Saturday, but weren’t needed by the study until Sunday night. We spent Saturday afternoon checking out Boston University since it was only a few blocks from our hotel. There was some sort of regional track meet going on and runners were there from several schools. In fact, some were staying in our hotel. Yeah, you know what’s coming. I officially crossed into “old.” I am no longer the one keeping people awake. I am now the one calling the front desk at 3 a.m. to report “those durn kids that just won’t keep it down.”

Sunday we went to check out Boston Common and the surrounding area. I was disappointed that all the water was drained and ruined my photo op. We came upon the cemetery where Paul Revere is buried. Too bad I’m not teaching anymore. Since for some reason the state of Georgia thinks he warrants six weeks worth of social studies unit (I’m not saying he isn’t history-worthy, just not six weeks worth), I could have used this photo when struggling for material, perhaps made up a story about digging him up at midnight and running through the streets screaming, “The zombies are coming!”

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Most importantly, we went to Cheers so I could have a beer. I went to Boston when I was 16 and couldn’t drink. It felt so wrong to go to Cheers and not have a beer, so I finally fulfilled that ridiculous dream, in spite of my funky stomach.


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When we had free time, we also checked out Chinatown, and we went to dinner at Ann Davison’s house, one of my former co-workers who moved to Boston last summer. This is the view about a block from her house:

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Back to the TSC study, which is the reason why we were up there–Sunday night (at 10:30!) we had to take him for an MRI. Since it’s for the study, it’s not sedated; it’s a sleep MRI. All my MRI knowledge comes from watching House. Remember those scenes? A person is in the tube and the doctors talk to him while he lays inside. Everyone shares deep thoughts, the doctors discover secrets about one another, and House has an unrelated epiphany and runs out. Turns out that television does not portray things very realistically. I wasn’t worried about getting him to sleep. That was a piece of cake. The problem was that since we had to stay in there with him, we were given ear plugs. Paranoid much? 45 minutes of whirring is gonna destroy my hearing? Please. Chris maybe. Took him three days to get his hearing back after I dragged him to Lady Gaga.

It turns out that an MRI doesn’t whir. It’s more of a cringe-inducing series of mechanical groans that reminded me of Ripley trying to blow up the spaceship in Aliens. So he woke up. We stopped, put him back to sleep and started again. He woke up. We stopped, put him back to sleep and started again. He woke up. We stopped, put him back to…well, you get the idea. Eventually we called it quits and decided we would be opting out of this portion of the study. I want to help, but you’ve got to be kidding me. One of the techs even crawled in there with him at one point to calm him.

We also had two days of testing, some of which were the same as what he did on his first trip. It was really great to watch because he has improved so much since last time. Plus, the last time he had two seizures, so he wasn’t to into it. We still haven’t seen a seizure since February 10! He was engaged, cooperative, and the difference was awesome. The only problem he really seemed to be having with the testing was that sometimes he was too busy flirting with the ladies administering it to do it. I looked forward to hearing how the scores would show how much better he was. Finally, the big reveal! And the scores show….regression! Regression? WTF. How is that possible? Here is why. The Mullen Scale is bullshit. Last time we were there, due to the seizures he got sleepy and some had to be completed by parent report. They no longer do that, which is understandable as I see how it could inflate scores. So this time, it had to be done in front of them. Yet, he can do more! How did he regress? Last time he could barely sit, and this time he sat the whole time! Well, the way they score it is that there are a series of things he must do to be scored on. If he doesn’t perform one item, they stop. So when they got to the item where he is supposed to lay on his stomach and reach for an item, he insisted on just rolling over every time because he hates being on his stomach. Therefore, he didn’t get credit for that, nor did he get credit for the following item. SITTING. I don’t know what items came after that, but he didn’t get a chance at those either. So he was rated at a 4-month level in motor skills. He is delayed, but he is NOT at a four-month level. So clearly this test isn’t going to be particularly helpful for our personal purposes. I’m happy to have him in the study and I like the ladies in charge, but the Mullen and I are not friends.

Connor’s physical therapist about flipped when I shared this with her. The Battelle test she uses on him requires three fails in a row in an area before you move on to a different section, not one. So while I had already dismissed the Mullen as a load of crap, her agreement made me feel even better. Some kids have splinter skills. Meaning they may lack a skill that should have come at an earlier age, but they have developed other skills that are more advanced. Connor is such a case. He can sit fully independently, maintain a standing position for at least a minute holding the couch, and as of his most recently PT session, he can also maintain a crawling position for a minute (we just gotta get him moving).

We also took the opportunity to have him seen in the Boston TSC clinic. Dr. Sahin looked him over and we did the Woods lamp test for the first time. Skin involvement is common in TSC, but Connor doesn’t have anything particularly noticeable. He did have some small raised white spots on his legs I suspected were TSC related, as well as a tiny white spot without pigment, but nothing I would have thought much of were it not for the TSC diagnosis. Dr. Sahin confirmed the little white bumps were tiny little shagreen patches, and the lamp revealed some other de-pigmented spots not visible to the naked eye. Nothing that really phased us. Perhaps there is a benefit to the possibility of him inheriting my pasty skin rather than Chris’s ability to tan. His white spots will be less noticeable. He also looked over the MRI that was done right before Connor’s surgery. He said he was too young for it to be a great MRI, but he did point out some tubers, and the SEN’s Connor has were very, very small. SEN’s are the brain growths that have the potential to grow and become SEGAs  which can be very serious, needing surgery or the drug Afinitor, so it was good to hear his are particularly small. His social area of the brain also looked good. Connor will have his annual clinical MRI with them next time we go in August. We should be able to tell a lot more about what areas are affected then.

Chilling in the Boston suite.
Chilling in the Boston suite.

We cut our trip short by a day due to the storm that was supposed to hit. Naturally, that meant the storm ended up being downgraded. You’re welcome, Boston.

Random thought for the day: I think Connor should have been the e-Trade baby.