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Jul 8, 2009

Not Your Typical Milestone

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Thanks to the broken tooth, Cordy had to break her string of only visiting the doctor once a year in order to get a pre-surgery physical. I’ll admit that I was nervous, expecting a meltdown or at least a lot of non-compliance from my doctor-phobic daughter. She’s never liked going to the doctor, and has never let them do a full exam without a lot of screaming and being held down. We still don’t know her blood pressure, as a cuff has never made it around her arm yet.

But yesterday was a new milestone. She was mostly agreeable. When the nurse asked her to step on the scale, she did it without argument – a task she refused to do at the hospital over a week ago. I’d like to think that part of it was my different approach this time: instead of asking her to see how big she was (which she always replies “I’m four and a half big!”), I instead told her to step on the scale so we could make number appear. Ah-ha! Appeal to her love of numbers! Why didn’t I think of that before?

After the scale was out of the way, and my eyes came back into my head after seeing she weighs 50 lbs. (before you think it, she’s not fat. 50 lbs is reasonable for a 4 year old who is getting very close to 4 ft. tall), we then went into an exam room. The nurse wanted to get Cordy’s pulse, but Cordy did not like this woman touching her wrist and holding it for a long period of time. We tried asking Cordy to count to 15, count the fish painted on the wall, etc., but we never got past 8 seconds. The nurse gave up at that point.

When Cordy and I were alone in the room, she scanned the room quickly and found a magnetic drawing board. Suddenly she was happy as she drew pictures of grandma, complete with her trademark circled X, H, and an outline of her hand. We didn’t wait long before the doctor came in.

This was our first time seeing this doctor, so I didn’t know what to expect. But she was soft spoken, young, and seemed to understand Cordy well. She asked me several questions first, not directly confronting Cordy so that Cordy could get used to her in the room. Then she started off with simple questions for Cordy, asking what she was drawing, how old she was, does she have a sister, etc.

When it came time for the exam, I was prepared for the worst. However, Cordy willingly let the doctor put her stethoscope on her chest and back, even taking deep breaths when asked. She opened her mouth and said “Ah” on command, and didn’t complain too much when the doctor looked in her ears. She even laid down when asked so the doctor could feel her belly. I sat there the entire time, grinning like a fool in amazement, and at the end told the doctor that this was the first time Cordy has ever let someone examine her willingly. She was pleased to hear that.

The verdict: Cordy is fit for surgery. Other than low muscle tone (which we already knew about, and seems to be common in kids with autism spectrum disorders), Cordy has no medical issues.

I was so thrilled with Cordy’s performance, I agreed to get ice cream afterward. The two of us enjoyed our ice cream together, until about half-way through when Cordy bit down into an M&M and got that worried look on her face. “Does your tooth hurt?” I asked her.

“No, it’s OK!” she tried to reassure me, but the worried look remained.

“Your tooth hurts, doesn’t it? It’s OK, you can be honest.”

She shook her head yes for a moment, then shook it no. “No, my tooth is OK. It doesn’t hurt. But can you pick out the M&Ms from my ice cream, mommy?”

So her tooth still hurts. Next week is her surgery.

Filed Under: Autism, Cordy, growing up, kid logic ·


Jun 30, 2009

A Lot of Nothing, With a Side of Frustration

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I spent all of last night trying to psych myself up for today, prepared for Cordy to endure dental torture and probably some kind of sedating agent to allow tooth professionals to perform said dental torture.

No one told me the torture would be all mine today.

We arrived at the dental clinic at Children’s Hospital at 12:15pm. The emergency clinic opened at 1:00, so we took a number (#3 at 45 min. early!) and waited. Cordy was a little unsure of the waiting room, made worse minute by minute as more and more people filled the tiny room, eventually taking up every seat. It became loud and chaotic quickly. I silently hoped that, as #3 in line, we’d quickly be whisked away from the din of that waiting room.

The clock struck one and the registration window opened. #3 was called five minutes later and I approached the window, only to be turned away with a clipboard full of paperwork and instructions to return when I had filled it all out. Meanwhile, other numbers were called and other children were shuffled back into the office. I used my best speed penmanship to complete the forms and rush back to the window. I was again told to have a seat and they would let me know when they needed me again.

45 minutes later, we still waited. The room was still loud, Cordy was begging to go home and complaining of hunger. My head was pounding. When our name was called again, we went to the window only to be given an ID sticker to put on Cordy’s shirt, with the message to sit down and wait more.

Half an hour later, it was time to see the doctor.

We were brought back into a tiny room, where I explained what I knew: Cordy’s lower right back molar was broken, she may be in pain but we can never be sure, and she’s a difficult patient. The doctor coaxed Cordy into showing her the tooth (thanks to my offer to let Cordy cook tonight if she cooperated). The doctor then immediately launched into a lecture on cavities that made me feel about two inches tall. She seemed to assume I fed Cordy a steady diet of Mountain Dew and pixie sticks.

“Wait,” I interrupted, “How does she have a cavity? She doesn’t eat a lot of sweets, we brush her teeth, and I check her teeth weekly. I’ve never noticed even a darkish spot on that tooth. And she never eats hard candy or anything harder than a Goldfish cracker.”

The doctor paused, then told me how fluoride toothpaste can mask a cavity, effectively covering it up with a fluoride shell. I’ll admit, that made no sense to me at all. But then as she continued on, I again felt like she was somehow saying this was all my fault.

She then confirmed what I suspected: Cordy would need general anesthesia to repair the tooth. The better news? As long as it isn’t infected, they will be able to cap the tooth and not need to pull it. Then she told me, “The wait time for dental surgery right now is about 8-10 weeks.”

I stared at her hard for a moment, not sure if I heard her correctly. “You mean for routine stuff, right?”

“No, I mean for any dental surgery.”

As you know, I am nearly-a-nurse. I understand that a parent’s sense of urgency isn’t always the same as a medical sense of urgency. In that moment, however? I was ready to call the doctor a quack.

“8-10 weeks? But what if she’s in pain? We’re supposed to let her be in pain for 8-10 weeks?” I then explained Cordy’s odd pain reception, and how we don’t know if she’s hurting or not. She now won’t let me brush the tooth, so I can only assume she’s hurting. “There’s no way I can let her hurt for 8-10 weeks.”

The doctor nodded. “Well, since she is special needs, and has unique sensory issues, we can then consider that she is in pain and find an earlier surgery date. I believe there might be some spots available in 2-3 weeks.”

Again, a look of stupor had to show on my face. “2-3 weeks is considered acceptable for a child in pain?”

The doctor then tried to explain to me that there was acute pain and chronic pain, and how this is likely chronic pain, which a child can “get used to.” Ah. Well, that explains everything. She can just get used to hurting. No prob.

The entire procedure was explained to me, and I agreed that it sounded like the best possible procedure. General anesthesia gives them a chance to check for any other problems, correct them if needed, and give her teeth a good cleaning while she’s there.

So now we’re waiting to get a surgery date sometime in the next 2-3 weeks. And Cordy has to get a physical, also, to rule out anything that could prevent her from having surgery. (Including “malignant hyperthermia” according to the doctor, which I know can’t be determined from a simple physical.)

I am completely on-board with the procedure. It’s what Cordy needs. I also know that not everyone can walk-in and have dental surgery, despite what the ER led me to believe. I’m frustrated by the long wait, however. If Cordy’s tooth doesn’t become infected, we can save it. But if it does, the tooth will be pulled, which could throw off the spacing in her mouth. As someone who had braces for 5 years, I’d rather not screw up the good spacing she currently has. And the longer it takes to get this done, the greater the chance of infection, not to mention being in pain for longer than I would like.

The entire time the doctor and I talked, Cordy was miserable, sitting near the door, pulling on the doorknob begging to go home. She was scared by the medical equipment in the room, and the doctor often got right in her face, which is good for many kids, but completely intimidates Cordy. I hate that I had to put her through that today, and will have to put her through it again, along with a trip to her pediatrician, too.

We left Children’s Hospital exhausted: Cordy still with a broken tooth, and me with a killer headache and a lot of frustration. Cordy winced tonight when I brushed her teeth, denying that it hurt but showing signs that it did. The prescription painkiller (hydrocodone) did nothing to make it better, and in typical Cordy response, actually made her more alert and awake instead of drowsy.

This is one of those times when I can’t make everything better for her, and it really upsets me. I feel helpless, stuck in the system. I’m not asking for any kind of special treatment, either. In some ways, the special treatment we need is causing this to take longer – if Cordy could sit still and be a compliant patient, everything would have been fixed today in the dentist’s chair.

But as her mom, with all nearly-a-nurse knowledge put aside, I think it’s unfair to make her endure more pain because a condition she can’t control keeps her from being a model patient. I want to rage about how insane this all is to someone who can do something, but it wouldn’t help. It’s not rational, but isn’t that part of what being a parent is all about? We want to protect our children against anything, against all enemies, even if those enemies are reason and logic. Mama bear instinct is strong.

So now, we wait. And I make every effort to relax, while watching Cordy closely for signs of infection and hoping she isn’t hurting.

I hate this.

Filed Under: Autism, Cordy · Tagged:


Jun 28, 2009

Tooth Drama on a Saturday Night

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I had planned on a quiet Saturday evening. Aaron was going to be at Origins, I was going to put the girls to bed and watch some great medical reality TV on Discovery Health. And then near bedtime, Cordy and I were playing, and I asked her to let me count her teeth. When I got to the last one, I noticed something didn’t look right.

Hoping it was just a little bit of dinner stuck to her tooth, I gently brushed her teeth, and noticed the molar still looked weird. Grabbing my pen light, I asked her to open her mouth again, and I got a close look (warning, graphic description): a jagged V slice was missing from the middle of her tooth, with the yellow pulp visible.

I couldn’t believe what I was seeing. “Does your tooth hurt?” I asked Cordy.

“No!” she replied with a smile. No way, that’s impossible, I thought. That HAS TO HURT. She had no idea when she did it, or how. I have no idea when she ever ate anything hard enough to crack her molar.

Part of Cordy’s unique character is her reaction to pain. Or maybe that should read lack of reaction. I’ve watched her do things that would make the average child shriek in pain. I saw her tear half of her fingernail off, and the most reaction we got from that was a temporary sad face. She doesn’t process pain the same way most of us do.

I still can’t figure out if she is feeling the sensation of pain and interprets it differently in her brain, or if pain doesn’t register at all. But either way, extreme pain generally doesn’t bother her. (Now, try to pour water on her hair and she screams that it hurts. I don’t fully understand it.)

I called her pediatrician’s on-call service, and the doctor said it was best to take Cordy to Children’s Hospital for a look. Infection was a concern, as was the pain issue. So after spending 20 minutes trying to prep Cordy for what to expect, we left for the hospital.

Cordy was scared. I knew this was likely to end in disaster, but at the same time she seemed to understand what I told her. The doctor wanted to look at her tooth, and they wouldn’t do anything to hurt her. She asked if she would get a new tooth, and I told her they would try to make her tooth all better. She promised she’d be brave if I promised not to leave her.

At the hospital, she was fine as I checked in, and I had hope that she might do better than I expected. Then we walked back into the triage area, and the aide asked her to stand on the scale for her weight. She lost it right there, and her fear slowly built into a full, old-school meltdown. No one could touch her.

I sat on the floor with her in our nook in triage, holding her while she tried to break free to run away, primal screams and repetitions of “Let me go!” coming from deep inside. My own face burned with embarrassment at the stares we got from other parents and staff. I know I should be used to this by now, but it still gets to me. I wanted to scream out, “She has autism! Transitions and new experiences are hard for her!” but instead I focused on calming her down. She finally calmed down right before we were moved to an exam room.

Hiding under the table as she came out of the meltdown

The resident who came in to examine Cordy was young and I had to explain all of Cordy’s quirks to her. Cordy hid under a chair in the exam room, unwilling to show her tooth or let this new stranger near her. She got a history on Cordy, then said she needed to talk to her attending doc to see what steps we’d take next. I was left alone in the room with Cordy. She eventually came up onto the bed with me, and then exhaustion from her meltdown caught up with her. Cordy was overcome with sleep.


When the attending doctor came in, he got to look closely at the tooth, thanks to Cordy’s ability to sleep like the dead. He was amazed that she wasn’t in extreme pain, as it is a very deep break in the tooth. Nothing would be done tonight, he said, but she will need to have something done with that tooth.

Based on her behavior, it was obvious that she will need to be sedated to have her tooth fixed. That’s something they didn’t have the set-up for in the ER, but the dental clinic at Children’s has the ability to do general anesthesia. So the plan was put in place for her to come see the dental surgeon on Monday to determine what to do with that tooth.

Cordy also received a prescription for a heavy-duty pain med that would make drug seekers green with envy. Even though we can’t be sure if she’s hurting or not, the doctor said the only ethical thing to do in this case is assume she is in pain, treat with ibuprofen round-the-clock, and then use the prescription pain med if she shows any signs of pain or says that her tooth hurts.

Even though I’m nearly-a-nurse and know that general anesthesia is safe, I’m still terribly nervous about Monday now. First, I know we’re going to have a replay of everything that happened tonight. But on top of that, they will have to hold her down and sedate her.

And even though she has no allergies that we know of, we’ve also never had to know her allergies. She’s only been on antibiotics twice in her life. She’s never been seriously injured or sick. However, I do know that she reacts strangely to nearly anything she’s given. Pain medications don’t seem to do anything at all, while she has adverse reactions to Benadryl. Hell, even blue food coloring affects her behavior. Nothing about her seems to react the way it should. I worry she’ll be ultra sensitive to the anesthesia or something will go wrong.

I hate seeing her afraid. And I hate having to even think about risking general anesthesia for a tooth problem. At this point I want Monday to come and go quickly and with as little disruption to our lives as normal. But I’ll confess I’m so worried that something might happen to my Amazon warrior princess.

I don’t want to be on this side of things – I want to be the nurse reassuring the parents that everything will be fine, not the worried mother hoping her sensitive child won’t have a bad reaction under anesthesia.

Filed Under: Autism, Cordy ·


Jun 22, 2009

Summer Camp, Week 2

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After last week’s introduction to camp, I’m happy to say that no one has been ejected from camp. Yet.

On Wednesday morning, I saw Cordy’s after-care teacher and told her that I thought Cordy would do well now that she understood the routine. The teacher, however, was unconvinced and again tried to talk me out of leaving her in after-care. She yet again mentioned that Cordy needed other kids to play with because she was lonely. I assured her that Cordy loves to play by herself.

And then she said, “It’s not right for a child to be that upset. You didn’t see how she was on Monday. I’ve never seen anyone that upset before. I’m amazed they were able to carry her to the room.”

I was unimpressed. “Was she bleeding?” I asked.

“Uh, no.”

“Then she wasn’t that upset,” I explained. “When she’s so out of control that she hits her head on things until she bleeds, then call me. THAT is her ‘really upset’.”

“Well, you’ll be home today, right? I’ll call you to come get her if she has any problems.”

I rolled my eyes. “I hope you’ll try to work out the problems BEFORE calling me.” And with that, I left.

As I expected on Wednesday, after I had a long chat with Cordy about what to expect from the after-care routine, and after the teachers decided they would take her directly inside instead of to the pick-up area, Cordy had a fabulous time. When we went to pick her up, she was sitting quietly in the room with a teacher beside her, drawing picture after picture and describing what she was drawing.

They reported that she had no issues at all that day, and really enjoyed the afternoon. See? I know my kid.

The next morning, I saw the after-care teacher again, smiled sweetly and said, “I hear she had a great day yesterday! I told you it would all work out!”

No smile in return. Instead, she frowned and said, “Well, she didn’t have a fit, but she was clearly bored with no one else to play with.”

Whatever, lady. It must suck to be someone who can never be happy.

I spoke with a friend who works there, and she told me that this particular woman teaches kindergarten and is used to working with kids who have been in the daycare system since they were little. These kids know how the system works and give her few problems. Someone like Cordy doesn’t fit in with her idea of how children work.

On Friday, we had thunderstorms moving through Columbus at drop-off, and so all of the kids had to start the morning inside. Cordy was not happy with the group circle time inside, and Aaron had to stay with her for awhile while she cried from the change in routine and all of the noise caused by the echo in the room. She eventually calmed down and had a good day.

The humorous end to the week? On Friday, there were two children with Cordy in after-care.

And what was she doing?

Sitting quietly by herself, looking at a book.

My warrior princess is going to do just fine at camp, in spite of those who would rather she not be there because she’s different.

Filed Under: Autism, Cordy ·


Jun 17, 2009

A Hair Story, in Three Photos

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Take one four year old with a thick head of curly hair that has reached unmanageable lengths and become heavy and sweaty:


Cut off about this much hair while she’s distracted watching Animaniacs:


And voila! A lighter, less sweaty ‘do perfect for summer camp:

(Be thankful she has curly hair to hide how uneven the cut is. Mommy went to nursing school, not cosmetology school, but this particular four year old is unwilling to sit for a proper haircut.)

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Filed Under: Cordy, daily life ·