We met with a neurologist a few weeks ago. She ordered an MRI for our boy, to rule out any physical brain issues. The appointment is tomorrow.
I assume we won’t have any answers for several weeks, but at least we are finally getting some traction.
Update on today’s earlier post:
While our girl was getting the best sleep of her life, a nurse walked me through the labyrinth that is the hospital to show me the pediatric waiting room. I asked about food (having skipped breakfast in solidarity with the hungry child) and she took me back down to where the restaurants make everything smell less like a hospital.
I asked if eating in the waiting room was okay. “Absolutely! No problem at all. You’re probably starving, right?”
After scouting around, I found Au Bon Pain. (Side note. If you’ve never been, but have opportunity, GO. They have the BEST sandwiches. Split roasted chicken breast on ciabatta bread with tomato pesto, sun-dried tomatoes and fresh mozzarella and asiago cheese. Stop drooling on your keyboard.)
Managing to get back to the waiting room on my own was something of a feat for this directionally-challenged gal, but I made it. Another couple sat on the other side of the room. Bright colors and shapes assaulted me from every corner, and high-pitched cartoon mouse laughter pierced the air. Personally, I thought the environment was a bit over the top, but I was stressed and hungry.
I bit into that sandwich and relaxed happily into my chair, then noticed the couple staring at me with accusation in their eyes…in that “perpetrator alert” kind of way. Mouth full, I had no way of saying, “I’m supposed to be here; what’s your issue?” I turned away a bit to imagine privacy and looked straight at the huge sign: “ABSOLUTELY NO FOOD OR DRINK in this room. Think of the children. They have empty stomachs.”
Now, the nurse told me I could eat in here, but these people didn’t know. I managed to choke down the bite in my mouth and explained. They laughed, waving away my guilt and exchanging glances. “Suuuuuuuuuure the nurse gave you permission.” There were no children present, so I stopped enjoying the food and scarfed it as quickly as possible, lest a mournful, hungry child should appear.
A nurse whisked the skeptical couple away (I ineffectively tried to hide the remains of my meal) and then came back for me. Our girl was fine and in recovery. I had an overwhelming urge to apologize and explain about the food, but instead mashed my guilty conscience back into his school locker (that’s where I keep him) and followed her.
Baby girl was arching her back and banging her head on the mattress when I arrived. The nurse said it was normal and asked me to hold her other arm while she took out the IV. I could barely hang on. Evidently children coming out of anesthesia acquire some kind of crazy supernatural muscles. Or, maybe they’re always that strong but they hold back. Anyway, we managed to still her long enough to get the IV out and a bandage on her arm.
She began thrashing again, asking for help to wake up (which was a bit heartbreaking, since I couldn’t do anything to assist). After calming down, she started asking questions about whether she was recovering and how many days she’d slept. Being a caring, amazing, empathetic mother, I thought of her future prom date and pulled out my cell phone to record, since the nurse said some kids say really funny stuff coming off the sedation.
I had somewhat mixed feelings when her coherence arrived quickly. (No prom footage.) She will be grateful one day. Her brother was disappointed, since he managed to be extremely loopy during his heart surgery sedation and was hoping to hear a good story.
We left the hospital in true glamourous Princess fashion: wrapped in a blanket, wheeled out in a green carriage with an entourage. Okay, actually it was a wheelchair and the entourage was just the nurse and me, but she thoroughly enjoyed the ride and returned the thin cotton blanket with a grudging air.
The nurse left us to wait outside the hospital (valet parking sounds cool, but it wasn’t as glamorous as I’d expected). I pushed the chair to a metal bench and sat beside her to wait for our vehicle. A woman, 40ish, walked past us pushing an older woman. I said, “I’m pushing you now, but one day, you’ll probably have to push me—just like that lady.” She turned to me in surprise. “I was just thinking that!” Smiling, she patted my hand.
We stopped at the grocery store to get chicken soup and popsicles. Nothing cheers her up like soup-in-a-cup and sugar on a stick.
As I write this, she is fast asleep. So far, so good. Hoping to have some answers in a few weeks.
Our journey so far, if you’re just tuning in:
We’re at the hospital for our girl’s MRI today. Hopefully we’ll get some answers about her fluctuating cognitive performance and her tremors.
Prayers appreciated…they decided to sedate her, and that’s a little nerve-wracking. Too bad they don’t provide Mama Sedation…
(Perhaps I’ll do a little self sedation later, as long as I can keep Lush Puppy away from the cup…)
Yesterday, the girl and I went to her EEG.
Some of you asked about the reasons for testing. She has fluctuating difficulty in comprehension and ability (both at school and at home). We’re fairly certain that at least some of it is by choice, for attention.
However, I’m of the “leave no stone un-turned” line of thought, so we consulted a neurologist. The doctor shares some of our concerns. We don’t want to assume she has only behavioral issues, then later in life find that there is some type of damage causing the problems. The tests will determine whether anything is not-quite-right.
They taped little electrodes to her head and wrapped it like Queen Nefertiti. Actually, more like King Tut, come to think of it.
Side note: does anyone else think that Egyptian chick looks creepily like Olivia Wilde?
So then, the tech turned out the lights and told her, “Just close your eyes, be still and relax.”
What ensued was a very UN-relaxing 50 minutes of “But I can’t stop moving. I can’t close my eyes. I just can’t,” while the tech and I tried to bribe her. Thanks to RAD (or just plain old “I-want-to-do-the-opposite-of-what-you-say-because-then-I’m-in-control”), we may have to go back. The tech wasn’t sure how much of the data is usable.
On the way to the appointment, I told her that if she was very cooperative, I’d take her out for lunch. About 45 minutes in (I didn’t know it was almost over), I said, “Let’s do it this way. At this point, I’m not taking you out. If you want to go out to eat, you have to earn it back.” She was incredible for the last five minutes.
Dang it. Why do I always think of the solution so late in the game?
As we left, she asked if we’d go out to eat. “No,” I said, “you didn’t earn lunch out. But, you were very cooperative for the last five minutes, so you earned a snack.” I went through a fast food drive-thru and got her a dollar burger. Gotta reward progress immediately.
She pouted a little. “Lunch at a restaurant would have been more fun.” Yep. And if you simply closed your eyes, neither I nor the EEG tech would be frustrated right now.
She has an MRI coming up in two weeks, but she’ll be sedated for that.
Today is the EEG for our girl. I’m not actually sure what this one is supposed to tell us but the neurologist ordered it so we’re going. One step closer to the MRI and more definite answers. We hope.
The EEG is “sleep deprived,” so we’re up all night watching movies (and I’m praying the boy doesn’t wake…I’ll never get him back to bed). She’s having the time of her life.
I think I’m the only one feeling the sleep deprivation.
It’s okay. God created naps for a reason…
So, Friday we went for a CT scan for the girl. Hopefully this will give us more information about what’s going on in her head (literally).
She’s always had academic difficulty, and last year we held her back to repeat second grade. It was the best thing we could have done for her learning; through the first part of third grade, she excelled. She exhibited pride in her work and seemed infinitely happier than we’d ever seen her. Once the class moved past reviewing second grade information, though, she’s had a lot of trouble grasping new concepts.
We have some additional concerns (confusion and tremors, for example), so the doctor sent us for a CT. Actually, the pediatrician, CT tech and her manager all agreed that what we actually need is an MRI, but insurance will only pay for the MRI if we do the CT first. Evidently the MRI is more expensive and they want to know that we’ve exhausted all other options. Never mind exposing a 10-year old to more radiation than necessary.
Not knowing how much of her academic struggle is a result of RAD or defiance, and how much is a result of possible missed connections in the wiring of her brain has been very frustrating. If a child has a brain deficiency, you can’t fault her for not being able to do school work. If a child is pretending not to know how to do something simply to get attention or be oppositional, that’s a completely different issue.
Either way, she’ll need something, but the remedy will be different.
If there’s a problem with her brain thanks to any number possible of factors (bio-mom’s drug habit, pre-natal difficulty, problems during birth, etc.), we’ll likely be looking at additional therapy, more help in school, stricter adherence to routine and checklists, as well as a bigger dose of patience. We won’t allow her to use it as a crutch–in fact, if there’s something wrong with her brain, we don’t plan to tell her–but knowing there’s a weakness, we’ll give her some leeway.
If her brain is running fine with perfect wiring, we’ll rely more on behavior modification and work harder on practicing the concepts that she appears not to cotton. If it’s RAD, she responds very well to tighter boundaries and expectations, because they give her a level of security. She knows how far she can go. As odd as this may sound, she likes to know there are consequences for her behavior.
However, we don’t want to give her consequences for something she can’t control.
Really hoping the tests will give us the answers we need. She needs.
Just a note: if your child needs a CT (aka Cat scan), you may want to prep for the absence of cats. She was somewhat disappointed there were no felines involved.