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Nov 26, 2012

What A Week

November 26, 2012 By

Last week at this time, I was expecting to have a relaxing Thanksgiving week. My only concern was for Wednesday, when the kids would be home from school while I was still working. I had an enormous to-do list with confidence that I would get it all done.

So then Cordy, who wasn’t feeling well Sunday night, woke up Monday morning with a high fever, cough, and headache. That meant she was home with me all day, on the couch with her Nintendo DS and watching numerous episodes of Beakman’s World on Netflix. I didn’t get as much done as I had planned because I was caring for her, too, but she clearly had the flu, so keeping her home was the right idea.

Cosmo kept watch, too.

That evening, right as she was fighting sleep on the couch, finally breaking a sweat after a 103.5 F fever, the cable/internet went out. As I tried to reset the cable box, my computer prompted me to restart for a Windows Update. I let the computer restart, hoping I could get my internet back again so that I could continue working.

But then the computer wouldn’t start again. It would try to restart, get to the point of loading Windows, hang, and then reboot. Safe Mode didn’t work, running diagnostics didn’t work…after fighting with it all night, I was computerless and lost an entire night of getting anything done.

Cordy was better on Tuesday, but still not well enough to go to school. Aaron took her with him to work, where she could hang out in his office with her games and books away from everyone else, while I figured out if my computer was dead or not. Aaron’s brother saved all of the data from the hard drive (YAY!), but the diagnosis was that the hard drive was dead.

The afternoon was spent researching new computers and working out how in the world we were going to afford a new laptop. I had been planning to buy a new laptop in a month or so, but this was just a little too early for me to be ready. Tuesday evening, I went computer shopping while Aaron entertained the kids, and by 9pm I finally had a new computer to resume my online life. The kids had no school the next day, but I hoped that at least most of my plan for the rest of the week would be back on.

I wish I could have got it without Windows 8.

And then Wednesday morning came and Aaron had been gifted with Cordy’s flu. Well…damn. To make it worse, we had my family coming over for Thanksgiving dinner the next day, and we had yet to finish cleaning the downstairs to prepare for the event.

I cranked through as much work as I could while tending to the chaos around me during the day on Wednesday. By 6pm, Aaron voluntarily went to bed feverish and achy after shivering on the couch all day. After I put the kids to bed, I dumped as much clutter as I could into boxes and hid it in the garage. (The perfect hiding place when you need a house de-cluttered quickly.)

Then I pulled out the Lysol wipes and Febreeze antimicrobial fabric spray, and completely wiped down the entire first floor of the house. No fabric or hard surface that anyone might possibly touch was forgotten. None of our visitors were going to leave with the flu. I finished this task (and a lot of internet surfing) around 3am and slept on the couch.

Thanksgiving went smoothly. Aaron was still too sick to come downstairs, so Mira and I ran care packages of food up to him while we feasted downstairs. It was great to spend time with family, although I felt bad that Aaron couldn’t join us.

I did participate in Black Friday shopping. I don’t really like the craziness or the crowds, but it does allow us to get great deals on things we need and gifts for others. Luckily, I got most of our shopping done online this year, but did have to go to the stores to get a few items for family members.

By Friday I was completely drained from the week. I had barely slept for days, I was mentally worn down from the stress of losing my computer and having my plans upended, and all I wanted to do was shut down. And for the most part I did.

It’s now Sunday night. I’m still playing catch up, but feel a little better. Everyone in the house is almost well again, and Mira and I escaped the flu. I hate having my plans changed – I can handle the little stuff, but with so many large roadblocks thrown at me this week, I wanted to scream.

Tomorrow morning the kids go back to school, Aaron and I go back to work, and everything goes back to normal. At least that’s the plan.

Filed Under: Aaron, Cordy, family time, holidays, plague Tagged With:


Mar 22, 2012

No Answers, More Questions

March 22, 2012 By

After all of the drama of last week’s visit to the doctor and the following blood draw to test for allergies, I had hoped to report one satisfying resolution to that arc of Mira’s story.

Unfortunately, life doesn’t seem to resolve mysteries as in novels or neatly storyboarded television shows, with all loose ends tied up and answers revealed.

Waiting for the results, I was focused more on what kind of lifestyle changes we might have to make to accommodate Mira’s allergies than anything else. What if she really was allergic to dairy and we had to go dairy-free? Or what if she had inherited the seasonal allergies of Aaron or I, but even worse, and would need to start allergy shots to bring some relief?

I didn’t hear anything by Friday afternoon, so I called the office and asked about the results. The doctor we spoke with last week wasn’t in the office, so one of the nurse practitioners called me back a little later with the full report.

Of the enormous list of food allergens and environmental allergens that Mira was tested for, she was allergic to…

None of them.

Wait, what?

The blood test showed no measurable allergy to anything in the test. This included about every kind of pollen, mold, and animal that she might encounter in Ohio, as well as all of the common food allergies and cinnamon. However, the nurse practitioner said the test results did show an elevated IgE level, which indicates she’s having a reaction to something, we just don’t know what.

The next step? Not sure yet. I have to get back in touch with the doctor to determine where to go from here. We may be seeing an allergist, or she may want further tests first. Either way, I need to make sure her symptoms aren’t forgotten. Mira’s flare-ups are random and she hasn’t had a vomiting episode/cramping in nearly a month, but we know it’ll happen again. And the eczema on her head is only slowly responding to the steroid treatment.

I’m glad this kid has such an easy-going personality. She was telling her preschool class last week about the blood draw and described it as, “It really hurt, but they weren’t being mean. They were just doing what they needed to help me feel better. They weren’t trying to hurt me.” Mira knows there may be more testing involved, too, and while I’m sure she won’t be as brave in the moment, she still says she’ll be brave and knows we only want to make her feel better.

That’s Mira – the kid rolls with anything life sends her way. Although she’ll make sure to remind you of the story of her bravery at least once a day for the next month, usually with some parts exaggerated for dramatic flair to make her the star/hero of the story. Maybe she needs her own blog – once she learns how to write.

You’d have thought the St. Patrick’s Day parade was in her honor the way she tells the story.
Filed Under: daily life, Mira Tagged With:


Mar 15, 2012

Mystery Diagnosis

March 15, 2012 By

Mira was supposed to be my “biologically strong” child. Cordy inherited my pale, sensitive skin. Along with autism, she also has a sensitivity to artificial food dyes, has to have her clothing in natural fibers and washed in dye-free, perfume-free detergent, requires fragrance-free lotions, burns if the sun even comes near her skin and easily develops a rash. Mira, on the other hand, is neurotypical and inherited Aaron’s ability to never burn, but rather just develop an even, glowing tan as the summer progresses. She also seemed to have an iron stomach as a toddler, eating nearly anything with a preference for spicy food.

So when Mira started to develop a few strange symptoms last year, I tried to pass them off as nothing. A bit of a rash here and there, occasional bad stomach aches and other digestive issues that I won’t embarrass her future teenage self by writing here. Then she had stomach aches that switched into vomiting, followed by days of practically no appetite. And the rashes continued, to the point of bleeding at times. All of these symptoms lasted a short time and then wouldn’t appear for weeks.

In recent months, the rashes and stomach aches have continued. (She doesn’t have them all the time – they continue to come and go in patterns of days to weeks at a time.) I had hoped they might just go away permanently with a gentle diet and plenty of lotion for sensitive skin, but nothing has helped. Then last week, a new symptom appeared: scaly patches of eczema all over her scalp. I couldn’t ignore it any longer: it was time to see the doctor.

Do you know how hard it is to explain to the doctor why you’re there when you have about 10 semi-related symptoms that aren’t very serious when considered alone but when put together make Google tell you she could have some terrible disease? And even worse when you’re a nurse and don’t even need Google to tell you some of the life-altering conditions that could be diagnosed from these symptoms. I tried to calmly explain it all to the doctor, but even she seemed puzzled by the combination.

The doctor is leaning towards a diagnosis of an allergy, but we have no idea what it could be. Environmental? Food? Who knows at this point. She ordered a prescription steroid solution to help with the eczema and sent us right across the street to the Nationwide Children’s Hospital lab to get blood for an allergy panel. With this many symptoms, it was decided to skip straight to the blood test and avoid elimination diets and skin tests.

Mira was amazingly cheerful through all of this. She told the doctor all about her issues, acting like it was no big deal. She’s lived with many of these issues (off and on) for nearly a quarter of her life, so I’d imagine it is an everyday thing to her.

Getting blood drawn, however, changed her demeanor entirely. I was honest with her about what would happen and she became very nervous as we sat in the waiting room of the lab. She asked if it would hurt, and I told her it would, like a shot does, but only for a moment. Mira has been very brave with shots, so I hoped she’d be OK with this, too.

She wasn’t OK with it. As the med tech looked at her arms to find a good vein, she started to get upset and cry. She held still when the needle went in, but sadly the tech missed and spent WAY too long (in my opinion as a nurse) digging in her arm looking for that vein, which I’m sure hurt a LOT. At that point Mira was no longer brave and just wanted away from that place as fast as possible. Even when the needle was removed she continued to cry hard.

So when she realized they had to do it again (phlebotomy is an art, sadly, and you don’t always get it on the first try), no amount of stickers, suckers, toys or ponies could persuade Mira to go along with this plan. She cried “Not again!” over and over and tried to get off of my lap to run away. I felt horrible. Holding her down for another needle to hurt her made me feel like I was betraying her trust.

They brought in an IV nurse for the second try, and even though Mira was crying, screaming and not nearly as still as before, she got it on the first try and it was all over quickly. It took Mira several minutes to calm down, and Mira and I both felt traumatized as we left the building.

We’ll have the results of her allergy test by the end of the week, and then will decide where to go next, or how we’ll have to alter our lives if she does have an allergy to something we’re exposed to daily.

However, I can tell you there’s nothing wrong with Mira’s memory. She remembered she was promised a sticker. And when we got home she remembered I promised her fruit snacks. And a sucker.

The only reason she’s smiling is because she has a sucker in her hand.

She also brought up the bribe of a toy, too. We’re still negotiating that one.

Filed Under: Mira Tagged With:


Dec 12, 2011

The (Not So) Great Plague of 2011

December 12, 2011 By

Well, hello there. Got a little quiet in here, didn’t it?

I’d like to say I was too busy with fantastic adventures since I last wrote a post, but the truth is my entire family was brought to its knees thanks to a microscopic villain.

It all started just over a week ago.We had a family outing that Friday to my company’s annual holiday party. Everyone was in good spirits at the party. Mira got her face painted:

Rainbow butterfly FTW

Cordy visited with Santa:

And all I want for Christmas is to get away from this creepy bearded guy…

That night we arrived home full of happiness and holiday cheer, tucked the children into their beds, and then tucked ourselves into our new (Black Friday sale) bed that had just been delivered earlier that day. Ahhh…domestic bliss.

And then Mira started vomiting at 3:30am.

Aaron and I changed her sheets, cleaned her up, and put her back to bed. I started the washing machine and went back to bed myself. We thought maybe it was too many cookies before bed that caused it.

Half an hour later, she threw up again. Change sheets, clean her up, put her back to bed, set old sheets near washing machine. Back to bed.

Thirty minutes later…well, you can probably guess the pattern at this point. It reached a point that I ran out of sheets and had her sleeping on towels. Towels that I still had to change every thirty minutes.

Aaron got up with her eventually and moved her downstairs. At least if he was nearby he could get a bucket to her when she started to feel sick, thereby sparing us more laundry. Every time she was sick, I was meticulous about cleaning up with antibacterial soap and insisted we wash our hands well. It could have been the cookies, but I didn’t want to take any chances.

By the end of the day on Saturday, Mira was mostly back to normal. She ate dinner, teased her sister, and it seemed the worst was over. Sunday morning and afternoon were also happily boring and normal.

I took a nap Sunday afternoon to prepare for going to work that night, and when I woke up I discovered Aaron now felt ill. Within an hour his nausea turned into a full stomach virus with all the symptoms you can imagine. The cookies were now no longer being blamed on Mira’s illness. I put the girls to bed on my own, as Aaron was completely down and out at this point.

I felt completely fine at this point, so I made myself dinner then showered and prepared for work. Suddenly at 9:30pm, my stomach felt a little off. I still had an hour before I had to leave, and made the decision that a quick nap would make everything better.

Half an hour later, I knew I had been conquered by the viral army. I called off work, told Aaron I was sick, too (he was still camped out on the couch) and went back up to bed. It didn’t take long before the vomiting started.

Twelve hours later, the vomiting finally stopped. Like Mira, I threw up at least every thirty minutes all night long. I didn’t sleep, and I was hot and then cold all night long. I stayed in bed all day the next day, and by evening I still didn’t feel strong enough to even walk downstairs or eat anything. No work again that night. Aaron (who had mostly recovered by this point) brought me Sprite to sip and took care of the girls that evening.

Tuesday morning, I felt a little better. I ate a little bit of toast and had finally gone downstairs. I was thankful to be over this virus, and thankful Cordy had avoided it. Aaron told me how she had avoided us the past two days, saying she didn’t want to touch either of us for fear of getting sick. Poor kid – she was so scared of getting sick.

Which is why I felt even worse when the school called at 2:30pm that day to say Cordy had just lost her lunch on the office floor.

I didn’t go to work again that night. I still felt weak, and poor Cordy spent the night delirious from being sick, drifting in and out of a restless sleep, talking to no one, and constantly moving as if she couldn’t get comfortable. Aaron and I took turns being with her and as a result got little sleep ourselves.

Wednesday morning, Cordy finally snapped out of it. She was tired, but was at least making sense when you talked to her. By mid-afternoon she was asking for food and by evening she was back to normal.

I still wasn’t feeling great, but went to work that night anyway. While the rest of the family had fully recovered, I couldn’t entirely rid myself of the nausea and an odd, dizzy feeling. The feeling was still there when I woke up Thursday afternoon, so as soon as Aaron got home I went to urgent care.

The result? Double ear infection. Apparently this wasn’t my week.

I started antibiotics that night, and then spent the weekend trying to catch up from everything I’d missed during the week. Sadly, the world doesn’t pause when you’re sick, and I never realized how fast email could pile up in an inbox. (Or laundry in a hamper. Ugh.)

At the moment I’m mostly back to normal. I’m not entirely convinced the antibiotics are strong enough to do the job, but I’ll give them a few more days to prove themselves.

It seems the evil stomach virus that brought down all of us has been making its way into many homes this week. I guess I should be thankful we got it out of the way before Christmas. We’ve had far too many Christmas celebrations that ended with someone sick.

So that was my last week or so. How are you?

Filed Under: Aaron, Cordy, me me me, Mira, plague Tagged With:


Jan 18, 2011

Illness & Rare Moments of Clarity

January 18, 2011 By

When Cordy’s teacher called me on Friday to tell me that Cordy was complaining of a sore throat, I wasn’t convinced. Cordy had been practically vibrating around the living room that morning, excited about going sledding with her class. I figured she had simply burned out on excitement and was claiming a sore throat to be given the chance to rest after expending so much energy.

The teacher wasn’t convinced, either, as Cordy went from complaining about a sore throat to happily eating a snack. Cordy had no fever, so her teacher wasn’t inclined to send her home, and I agreed. Cordy had a great day and came home happy.

Saturday I was gone for most of the day visiting a friend, and when I left everything seemed fine. When I came home that night, I was given the report that Cordy had fallen asleep at the table in a restaurant for lunch, and then refused to eat anything for dinner that night. When I peeked in on her, she was curled up in bed with her PJs on and an adult-sized fleece jacket over it all.

It wasn’t until early Sunday morning that my fears were confirmed, when I heard a low moaning sound coming from her room. When I went in she was tossing back and forth in her bed, saying she hurt all over. She was hot to the touch, too. No doubt, she was sick.

Cordy has the strongest immune system I know. She’s only been sick a handful of times, often avoiding the common colds and stomach viruses that go around. While I’d like to claim credit for good parenting and teaching her about proper hygiene, I know that isn’t likely the reason – after all, she’s a 6 year old with a sensory fear of water. So when she’s sick, I get concerned.

She spent most of Sunday either on the couch or in her bed. All food was refused, but she did drink a little bit of juice for us. Medicine helped the fever for a little while, but it always came back quickly. I could only sit by her side and hold her hand, telling her to rest and that she would feel better soon.

The worst part was her realization that she was sick, and that sickness can lead to death. “Mommy, am I going to die from being sick? I don’t want to die, I want to live,” she cried to me at one point. I held her tight and assured her that she would be fine and that everyone gets sick sometimes.

But something else happens when Cordy gets sick – she also becomes amazingly clear-headed. Instead of the random thoughts that come out in a rapid-fire string of consciousness, she can hold long conversations and remain focused on the topic at hand. She doesn’t get easily upset over little things, and she doesn’t have the same low threshold for sensory overload. She’s quieter, more still, more deep in thought and more aware of everything around her.

I can’t describe it well, but it’s as if the fever somehow blocks her autism and lets the child that is tangled up in it shine through. And while I’m always concerned about her when she’s sick, I also took the time to marvel at how different she is during these moments.

By Monday morning she was still weak, but starting to feel better. And by Monday evening, the Cordy we know and love was asking to eat dinner.

I’d never wish for Cordy to be sick, but I’ll admit that when she is sick I do take advantage of those rare quiet moments with her, comforting her, holding her hand, stroking her hair, and remind myself how grateful I am for all that she is, whether sick or healthy.

Filed Under: Autism, Cordy, love Tagged With: