No, not Maura’s interest – but interest in Maura.
We’ve been lucky to have some great doctor’s to work with. Her pediatrician and her neurologist I would highly recommend to anyone. They were great with us. But they were only human and contained only so much knowledge – they couldn’t figure out what was going on with Maura.
We’ve meet other specialists who were nice enough, but Maura didn’t seem to spark their interest. I will say, Maura’s old neurologist warned us about this years ago. He said that we’d probably never know what she has because medical science isn’t interested in kids like her – aka kids who are pretty healthy, have no regression, no “big” issues. Maura just wasn’t interesting enough to the medical world.
This week we were lucky enough to fill a cancellation at the neurologist we were hoping to see here in Dublin. It was really good timing for us. Friday, I called the GP (general practitioner) for the referral to the neurologist. They sent it over that afternoon. Wednesday, they called with an appointment for the next day, asked if I wanted it. This isn’t my first pony ride. I know it can take months to get into a specialist’s office. When they offer you a cancelled spot, you grab it and say thank you.
So Thursday morning, Maura and I rode the train down to City Centre, then caught a taxi to Temple Street to the private clinic. We didn’t wait too long before Maura’s name was called. We hopped off our chairs, grabbed our bags, followed the doctor into his (very large) office/exam room, where Maura shook his hand and said “Hi Doctor!”
The funny part with that is that I didn’t tell her he was a doctor. She figured it out on her own. She took in his white coat, the exam table and other surroundings and figured it out all on her own.
One of the first things the doctor said was how surprised he was with how able Maura was. He didn’t expect her to walk into the room all on her own and say “hi” and start going through a book after reading the notes from the Cleveland Clinic that the GP sent over.
See, on paper, Maura is moderately disabled. There’s mild, moderate and severe. So she’s mid-range. Not completely incapable, but not semi-independent either. On paper, she seems somewhat incapable of learning, unable to manage on her own. The phrase “IQ of 47-50″ will make one think that.
But Maura’s not on paper. She’s a bright little package of flesh and blood, who is pretty darn able for all that’s going against her. She’s socially savvy. She’s always paid attention to what was going on around her and has learned from that. She has always made progress – slow, but steady progress.
This doctor saw all that. He was impressed with her, how she’s managed to learn steadily, that she could pedal a bike, dress herself. After weeks of dealing with schools and hearing “Wow, so she’s far behind.”, his positive attitude was refreshing. Not that the schools were depressing – just reality checks, one after another.
We sat and talked about Maura for a bit, him asking about tests and when she had her first seizure and what kinds of seizures she had. He felt that her different “spells” were probably seizures trying to break through – like the time at school she did a head bob and full body shudder, which means Maura has more seizures than we see. But for the most part, they don’t interfere with life, thank goodness. He also felt her bendy fingers were really hyper flexible and asked if anyone mentioned that she had some dysmorphic features. I said “Oh yes” and told him how one doctor said Maura had a “syndromey look” – aka, she looked like someone with a syndrome.
He ended up taking pictures of Maura with my consent, so that when he has lunch with his colleague the geneticist, he can share her case with him. I can’t help but get a little excited about that, allow my hopes that we’ll could end this 7 year mystery and have a name for whatever causes Maura’s delays. I know that it’s a shot in the dark, but it’s the most hopeful thing we’ve had for Maura’s medical side that’s happened in years.
He’s also recommended Maura have another EEG, check out her brain waves and all, see what’s going on in that head. I’m all for that as well. She’s only had one in her life, after she has the first seizure. We’ll see him again in 6 months, unless something comes up. I’ve been told to feel free to call with any questions or concerns or if I feel Maura’s seizures have increased.
I left the office feeling secure about Maura’s care here. We found a lovely GP for every day issues, and now we have a great neurologist. Having left a great pair of doctors behind, I’m grateful to have found another great pair.
Also, after the disappointment that was our Cleveland Clinic visit, where I knew almost instantly that we’d find out nothing new and it was a waste of time, this is refreshing. Doctors are finding Maura interesting! A member of the medical community is intrigued by her case.
And in generic Maura news – she has managed to keep up progress despite me being her only teacher. Usually Maura is not receptive to me trying to teach her things. But I guess she’s as desperate as me, lol! She’s learned words like “kingdom” “Julian” and “pirate” thanks to tv (“kingdom” comes from Ben and Holly’s Little Kingdom, a kiddie show, “Julian” from Penguins of Madagascar, another kiddie show, and “pirate” comes from “Pirates of the Caribbean”…yeah, not quite sure how that one happened.) She’s discovered “Doctor Who” and is fascinated by the show now and stole my Tardis. She calls Rapunzel “Hairbrush” and the train “crane” (close enough). She now genuflects (kinda) at church and can tag her train pass – heck, she knows how to walk to the train if we let her. She also is learning to wait for the green man (aka “safe to cross” signal at the lights) and is obsessed with pressing those crosswalk buttons.
It hasn’t been all sunshine and skittles, the girl had given me attitude on more than one outing, but she’s learning and settling in better and better. Hopefully we’ll hear back about school situations and maybe even get her potty trained one of these years? Meanwhile, the girl is still enjoying life to the fullest and getting bigger every day.