not an exciting post

On Thursday, for the first time since she got sick 1/17, Miss A showed a quick zip of her former energy levels. She went into what we call her manic state where she is laughing really crazily and loudly over nothing in particular at breakfast Thursday morning. Miss A in any sort of a good mood is noteworthy, but when she is overly excited that whips the other kids into a frenzy and that's not helpful in the mornings when in theory we're getting ready for school. So I had to quell her insane laughter but it was good to see her acting like herself again.

Mostly.

Today she had a big hand-flapping meltdown over the following:
She chose to take her shower right before lunch, instead of earlier in the morning when we'd asked her to. Then she didn't comb her hair when she got out of the shower. Then she wanted to go ask a friend to play at 12:40, but she had to leave for play practice at 1:45. I told her she needed to comb her hair first, then she could go. *Boom.*

Then followed 30 minutes of screaming and hand-flapping and flailing on the floor and wild accusations. I talked to her really calmly the whole time (although I did crack up a few times but how can I help it??) and also recorded 10 minutes of it on my phone so we can review the tapes later. I tried to stress the connection between her decisions about time management and the amount of time she had to play now, including her current decision to scream and cry rather than comb her hair and go get her friend.

A major catalyst today was that she had to use leave-in conditioner on her hair and apparently hates the feel of it on her hands, and feels like it doesn't wash off. Wasn't I supposed to discover all her sensory issues when she was a toddler or preschooler?

However, she has been a lot better or at least more manageable. She's been less hateful -- less full of hate and easier to love and cajole out of her snits. She's been more likely to laugh at herself or her logic or a situation she's in, a little.

the girls' bedroom is the bright sparkly thing i needed to distract me from my nervousness

Hello, internet!

Miss A's next dr. appointment is the 20th. I've been doing all right at managing my nervousness, but today I was so distracted I couldn't accomplish anything. Then I realized why:

For the last week I have funneled all my nervous energy into redecorating the girls' bedroom.

Bulleted updates:

• Miss A loves school. On Thursday her class began dissecting owl pellets and that rocked her world. She talked about it non-stop for about an hour, then went to play practice. I picked her up after play practice and she said, "I can't wait until tomorrow." I asked why, assuming it was because it would be Friday, or because of the newest episode of "House of Anubis." Nope! She answered, "For science class!" Like I was a little slow for not realizing her mind was still on the topic of science class several hours later.
  
  I can see a difference in her, a little. She is expanding, like I noticed her doing last year during rehearsals for the play she was in. I don't know if it is confidence, or just joy in doing something she loves, but it is good for her.
  
• Health-wise, she is still coughing some and I don't think she's back to her pre-illness energy levels, but she is better. She still has a much easier time falling asleep around 8 than she ever had before, but that's a plus.
  
• P re-did the homework G erased without complaining. Had he cried about it I don't think I would have made him do it, and their teacher would have laughed it off. But he did it without comment. He's a good egg.

The highlight of my last 7 days is that we got furniture for the girls' bedroom and got it all set up. I will blather on about that later and post some pictures, but this was pretty huge for us. The furniture we bought was cheap, but we've never bought them non-thrift store or garbage picked furniture before. Their room is very small and all of the walls are interrupted by doors or low windows. We had a bunk bed but it was difficult for me to make the top bunk, and so it was always a mess and we felt it contributed to Miss A's sleep difficulties. This was really exciting for me and I felt like a real grown-up shopping on Target.com and Amazon instead of at Goodwill and on Craigslist or Ebay.

g will not abide even a hint of academic impropriety

Those of you who devour my blog and carefully commit every word to memory will remember that homework has sometimes been a bit of a challenge with my boys. But we've turned the corner on that and now, about once a week, they'll sit nicely and do the entire week's work. It is awesome.

Tonight I laid the boys' homework packets on the table, and asked P to do his homework while G took a bath. After a brief protest P sat down and, indeed, completed every bit of this week's work. He wrote complete sentences answering reading comprehension questions. He did a bunch of math. I was proud of him and paid him 5 marbles for being so good.

A bit later I sent G down to do his homework. He yelled up that P had done the wrong work. I went down to investigate but was sidetracked by a fight between the girls. By the time I got that ironed out, G's shrieking and squawking had driven me insane and I told him we would do his homework tomorrow night and he needed to go hop in bed.

Later still, the boys invented a reason they needed to go downstairs. I went too and got distracted by trying to clean up the kitchen. A little while later P yelled, "MOM! G is uhwasing all my homewuck!"

I rushed to investigate. Sure enough, G had erased ALL of P's homework. WTF?? First of all, who has the patience to erase that much? G's patience is fueled only by his rage. Second, oh my gosh that was SO MEAN! P had done sooooo much work and had written so neatly and now it was all gone. I could barely make out the letters and numbers that had been on the papers, but if I didn't put them up to my face the sheets looked blank.

Blogworld, the boys have the exact same homework. I double checked to make sure their teacher hadn't suddenly changed it up on me, and he hadn't. Exact. Same. Packets. I label each packet with a G or a P when I take them out of their backpacks on Fridays, so I can keep track of which kid has done which work. P did the "G" packet from start to finish, so G took the logical step of using an entire pencil eraser to scrub out P's answers, rather than lowering himself to completing P's identical packet of work.

It was a conundrum. Normally if he destroyed something his brother worked on, I'd make him rebuild it. Should I make him complete both their homework packets now? Hmm. I thought about tracing over as much of P's writing as I could make out, but again, it's tricky with the rigorous 1st grade academic integrity standards. I'd hate for P's scholastic career to be tarnished with accusations of cheating. I don't know what to do. P sadly said, "I guess I'll do it all again tomorrow."

So what would you do, blogworld? Short of tarring and feathering or straight-up whuppins.

miss a begins her 6th school since starting kindergarten

...thanks to an ambitious district building plan and an indecisive mother.

Miss A started her new school today. I overstayed my welcome by hanging out for almost 3 hours after I arrived, but her teacher patiently pretended I wasn't annoying the crap out of her.

It was pretty awesome. Random observations:

• These kids are just like the kids at our local school, but maybe friendlier with better manners. They swarmed Miss A when we walked in and this one kid wanted to play Uno with her like it was nobody's business. No one has ever wanted to play Uno as much as this kid wanted to play Uno with Miss A. Everyone was all, "My name is John Cleveland-last-name.* It is spelled B-a-z-c-s-c-y-z-k-s-z. It is hard for me to pronounce because I lost a tooth," and "My name is Autumn. It means fall." I so appreciated how brave and friendly they all were. And also how hilarious. 
• The teachers at this school seem to have a higher tolerance for noise and seizure-like displays of classroom excitement. Seriously -- one girl was flailing around so much in her seat that she fell onto the floor and continued to flail around. I had that moment of, "Oh my gosh, maybe this is a real medical emergency and we're all just ignoring it!" And then she got up and sat back in her seat. Yet the teacher didn't even seem to notice.
• Her main classroom teacher is really soft-spoken and patient. I'm trying to channel her soothing energy in my exchanges with my own kids. Tonight it worked. Tomorrow it will probably not. 
• Miss A looks really cute in her uniform-y clothes.

Miss A also started play practice tonight. Did I write about her getting a part? I will revisit that later. Anyway, a long and tiring day but it is good to get back to "normal."

*Cleveland is a haven for consonant-heavy names. It is like a reverse Ellis Island. I could take the name MacGyver and to Clevelandize it, I'd spell it M'ghyvrygh. I'd still risk being ostracized over my lack of s, z, c, h, and sz- or ch- blends. 

our health update is good, for a change!

Miss A is so much better!!! After her Friday double dose of antibiotics, she was much improved by Saturday morning. It was amazing! I can't begin to express what a relief this is. Today she wanted to go to school but I felt anxious whenever I thought about it, so I made her stay home one more day. She starts at her new school tomorrow.

The last week, since the referral to the hematologist-slash-oncologist, I've been caught in my head. I can barely hear what's going on outside of me because I am so focused, rewinding the tapes of my conversations with our doctors, listening so closely to every pause, every inflection. Examining every word choice. Unraveling the deeper meaning of each exchange through an exegetical analysis of every sentence, both isolated and in context. "Did he say that first, or after that other bit? Does he mean he thinks it's safe to wait on the next test, or that he thinks it's safe to wait on the next test?"

As you can imagine, this is exhausting and requires a lot of concentration and the kids and their silly requests for milk and snacks and baths are very distracting and frustrating. We know nothing more now than what we knew last week, except that it *isn't* the "good" option. Our oncologist guy was very positive but as established he attended the best school of medical PR in the world. And what are they going to tell parents? "This morning, based on your kid's blood work, we thought she might be dying. But now that we realize she's very ill with pneumonia, some of the more terrifying lab values might be because of that. So let's take a few weeks and retest and find out for sure. Sound good?"

HOWEVER. Worrying about leukemia for a kid who has energy and color in her cheeks and wants to play a little bit is way way way way way less scary than worrying about it for a kid who is sleeping all the time and has no energy and does nothing but lay down.

I am still on an emotional rolly coaster (as my Hoosier grandma would say), but giving myself kudos for keeping it together. And I am very hopeful. I think we're going to get a diagnosis that makes sense, or we're going to get a second opinion. I think we're going to get good news, somehow. But even if we get bad news, I feel good about our chances again.

On the phone with Nana to thank her for a get-well teddy bear and balloons

day 11 of fever but i am optimistic for possibly no reason

So this morning Miss A woke up at 7:30ish having slept for about 14 hours, not counting her half-hour of waffle eating last night. She got out of bed and went straight to the sofa and laid down again.

We went to our 10:00 appointment with the pediatrician. He came in and said, "So, I just met with Dr. Hematologist-Oncologist, and you need to give him a call. He'll be in contact. You need to move onto the next steps, because we don't know what is going on with her blood work."

Naturally that wasn't great news to me. This first step was to test for rare metabolic disorders that make it so B12 can't be absorbed into the tissues, and it just sits in the blood. Since her B12 levels are now more than twice the "high" limit of normal, I thought that sounded about right. Because the other options are ??? and cancer.

Her pediatrician ordered a chest x-ray, and then we left. On the way home Miss A said she was so tired, and she looked like she was falling asleep. It was 11:30. She'd been up 4 hours after sleeping almost 14. This is NOT my kid. Miss A has never slept that long before, not even when she was a toddler or baby. This is a kid who doesn't sleep.

The pediatrician called at 12:45 to tell me she has walking pneumonia. He prescribed her something that should have her feeling better by Monday, if the pneumonia is bacterial and if her fatigue is due to the pneumonia. He was careful to stress that the pneumonia is not the cause of her insane blood work.

Our pediatrician is older than we are -- maybe mid- to late 40s? -- so I don't like it when my kid's blood work is doing something he's never seen before and that he has no idea how to handle. That just doesn't sound super.

I had a work call at 1:00. I couldn't find my magic token that allows me to log into this clients' secure network (or something) and the project is crazy-confusing and I was a little distracted. Then halfway through the call the hematologist/oncologist called and I decided to hope everyone would think I had my line on mute and I clicked over. He said her blood work showed she doesn't have the metabolic thing, and should be able to metabolize B12 just fine. He said we should let her take the antibiotics and see how she feels and then recheck her blood in a few weeks. Or we could go ahead with a bone marrow aspiration thing, but he felt there was a low chance of finding cancer.

He said the kids he sees who end up having leukemia are usually fairly ill and don't get better, so if she improves he wouldn't recommend pursuing the bone marrow test. But if she shows signs of progressive fatigue, looks pale, has ongoing fevers, or develops easy bruising or bleeding, we should test.

Of course, in my head, she slept 14 hours last night and doesn't want to do anything but rest; she looks like hell and is very pale; and has had a fever for 11 days, but okay.

I asked if he would do the bone marrow test if she was his kid; he said he'd wait. So that's what we're doing.

After we got off the phone I felt elated! I'd been expecting to get very bad news today, so I felt great! We had a reason she is so very sick, and hope that she'll get better! We have "I don't know what this is, but I don't think it's cancer!"

Then Jason pointed out that we still have no idea what is causing her blood levels to be so far out of range, so we really know nothing except that it's *not* the most benign thing they'd suggested. But if she gets better we go back in 3-4 weeks and check all her blood levels again, and take it from there.

i would like a prescription for an internal numbing cream, please

Today is DAY 10 of fever. I think she topped out at 100.6 today so they're going down... she usually has a lower temp than 98.6, though.

So while her fevers are improving, I do not think her health is. She perked up a little yesterday morning at the dr., until her blood draw. Since then she's been down again. She laid around all yesterday and fell asleep on the sofa around 7:30. Tonight she fell asleep at 5:30, slept until Jason woke her at 7:15, ate two waffles, and asked to go back to bed. And she did, by about 7:45.

She also looks like hell.

I called our regular pediatrician because I had the thought that even though her lengthy fever and abnormal blood work are linked in my mind, maybe no one else is paying attention. She didn't have a real fever at the specialist's office yesterday, and for all I know her pediatrician is done with us now that he's passed us along. So I called and the nurse agreed she needed to be seen again, so we go in at 10 tomorrow morning.

I am still clinging to some rare gene mutation or something being the cause of all this, but in innocently trying to look up how one treats a condition of being unable to metabolize B12, I found an abstract from an article published in a medical journal that said B12 levels above a certain threshold, more than 95% of the time, are because of something scary and cancer-y. And Miss A's levels are well above that threshold. But as I told Jason, our new rallying cry is WE ARE THE <5%!

I felt calm and fine today during the day, but once the kids and I got home from speech I suddenly felt very alone and uncomfortable. There's no one I can talk to about this. I can't sit around researching stuff all the time. I am distracted enough that it's hard for me to be patient when dealing with important problems like, "He looked at me," and "He farted and it smells," and "She thinks she's older than us." I'm forced to just sit with this and I don't like it.

Where is my mfing blood work? Why is it that Dr. House never has to wait a week for lab work? He can analyze every blip of a person's DNA from the smell of their pee or the way they blink. Where is my TV super-doc? Why can't I have a human laboratory at my disposal?