Dancing Girls.

The ballet teacher would be horrified. Kid3 practices her steps to this song. She is completely obsessed with it. Not quite the Swan Lake score that seems to be playing every time I walk into that studio.

Having not put the Death Cab CDs on more than a handful of times since her homecoming, I am still more convinced that Kid3 is my child.

In the Forecast: Thunderstorms

Kid3 and I are thunderstorm fanatics. When she was a wee one still living in 'Russia,' we used to sit close to the window and watch the lightning while the other kids cowered and whined.

If I am still awake, or one of us wakes up, when it starts, I will sit awake with her and watch the storm.

Welcome April!

Since last April, I feel like we've had an awful, terrible, no-good year. (Death! Cancer! Seizures! Medical suckiness! Premature birth! Feeding tubes! Work woes!)

Granted, the bright spots have been blindingly so. ( Kid2's homecoming! Adoption! Kid3's homecoming! Completing our family! Love, love, love in abundance!)

We are ready for a brand new year. April is as good a time to start as any, in my mind, what with the spring finally coming to our little corner of the globe and the one year anniversary of the First Bad Thing looming. We each have many happy things to be thankful for, and many more to look forward to.

I am thankful for a wonderful spouse, my three beautiful girls, my awesome friends and family, and a job I love. I am looking forward to a year filled with glorious, girlie giggles, and more love in abundance. I am truly blessed in this world. Here's to a year of remembering that.

Proof of Compatibility?

Pondering a midnight snack, it was decided that the thing we were both craving was... steamed broccoli.

Do Me a Favour.

Go hug your kids. Call your parents, your siblings and your friends to say hello and I love you.

So much loss this week amongst friends and family. I am so weary.

It's raining, it's pouring. . .

But at least it is starting to smell like spring! Hurrah!

What's the catch?

Seizures under control. Good doctor. Good service. Wonderful office staff. People that treat my daughter like a little human being. Oh wait, she is.

It's only a 5 hour flight. We can do this.

I am just thankful that we are here.

A few things that have come in handy this week:

A "pre-eminent scholar" in epilepsy research making a few calls for us.

A parent who knows "pre-eminent scholars."

A lawyer brother who is investigating whether the PN acted discriminatorily or unethically. Unasked.

A department head trying to cover his @$$, and promising us an appointment at our earliest convenience, or an urgent referral to another neurology clinic. (I think he would be quite glad to see the last of us.)

A paediatric epileptologist calling from across the country, genuinely concerned about our daughter, and offering her services.

It would be handy to have everything confirmed and be ready to leave tomorrow, but it will probably be another week before we can finalize things. I can deal with another week much more easily than 6 months.

An Entire Day Spent on the Phone

And it may be starting to get us somewhere.

I called the PE; no cancellations yet. I called the PN; not willing to make a more urgent referral. I called the head of neurology, and left a voicemail. I cried when I talked to his secretary who scheduled a time for him to call me next week. She said he might be willing to look into Kid1's information and give us the referral. She said she would print it off and put it in his inbox to look at tomorrow. She said she would mark it urgent and hoped tomorrow was a slow day for him so that he would have time to look it over. I cried when I thanked her.

I talked to a friend's nephew's wife, who is in a neurology rotation at a children's hospital in B.C., who told me to get together her records and a video of the seizures, send them to her and she would present it to her mentor. She suggested forwarding the same information to every PE in the country. Her reasoning is that if Kid1 can get in with one PE as a new patient, almost any PE would accept her as a referred patient because someone else would have already done the work and it would just be monitoring.

I called the PN again to ask them to forward their records to the paediatrician. I called our paediatrician and asked her receptionist to get all the records together so that I could sent out packets express post tomorrow afternoon. I asked the paed. to give us a secondary referral to the PE and a referral for a new PN. Which she did, but too late in the day for me to call about appointments.

I called my dad, and cried, and he called a friend who is a retired epileptologist in my dad's home country, who offered to look at her info and try to make a few calls, even though he is not sure how much influence he would have here.

I called the hospital where PN is an associate and inquired about making a formal complaint against him and was strongly discouraged from doing so, but told I could do that through the federal medical practitioners board. Which we probably will.

Lots of leads, but no promises. It is frustrating that my daughter desperately needs this care and it seems to be just out of our reach and as though whether or not she gets it anytime soon depends entirely on the goodwill and interest of professionals. I am not enjoying this process, but I don't intend to quit until we get a solid appt with a PE within the near future.

Tomorrow, I will call the PE and the PN again, visit the paed, send out packets and begin contacting PEs in Canada and a few in the US. And hope that my boss understands why I am taking the day off work and doesn't fire me since I have done this a lot lately.

I am angry, so angry that I forget to breathe when I think about the situation.

We have long suspected that our darling Kid1 has been having seizures. We got a referral for evaluation and then waited impatiently for 3 months for a neurology appointment with the neurologist that already follows her case. Being the squeaky wheel and calling everyday resulted in the appointment being moved up a grand total of two weeks.

Today - finally - the big day, we head off to the neuro's office who looks at the latest EEG, and actually sees our daughter have numerous seizures in his office. He tells us he is sure she is having seizures and that he strongly suspects they are directly related to her ever decreasing function. Like a little worm eating away at her brain, every time she seizes, she loses a few more brain cells.

And then he refers us to a specialist and walks out. No medication, no tangible intervention, no help. He - someone who specializes in the study of the brains of children - tells me that something is destroying my daughter's brain a little at a time and then he does absolutely nothing about it.

I left, and I called in the referral. Our wait time for the specialist - a paediatric epileptologist - is estimated to be 6 months. They don't even book appointments for new patients this far out.

I thought perhaps our neuro wasn't aware of this lovely policy, and called his office to ask for another appointment, another referral, a medication, just something.

He knows. He just doesn't care. He doesn't want to treat my daughter.

I can't even begin to express my outrage over this situation.

Well, I can be a pain in the ass, total bitch if that's what it will take to keep him from brushing us off like bugs. I can call his office every week, every day or every hour until he offers up a better solution. I can cry daily on the phone to the PE's receptionist. I can beg any and all of our other health care providers for second opinions, more referrals, to have strings pulled. I am tempted to call him on discrimination, that he has made the value judgement that her brain damage is bad enough, that she is so retarded, that a little more won't change anything. That he sees her disabilities instead of her. That he is not following his oath, to do no harm. To gather other families who feel this way and bring a formal complaint against him.

But I can't make him see that she is a human being, and that she deserves not to lose her standard of living even if it doesn't live up to his standard.

And it breaks my heart. And it makes me angry.

Life has been hectic the last few weeks. My grandfather is still holding on. Kid3 is beginning to enjoy her new school. Work is keeping me busy. Kid 2 loves being with her grandmother 24 hours a week, and Kid1 is miserable with the change in routine. Sleeping through the night is a pipe dream. Sleeping AT night is barely accomplished in our household right now. I come from work and intend to throw a post on my own blog, one here, and then catch up on my bloglines subscriptions.

I have a bunch of posts on the dashboard, our adoption story, some contest linkies and other random bits of cuteness to share, just not the time to do it. This is only being posted because I could copy and paste on all 3 blogs.

Curly Pudding!

Shirky recently passed along some authentic Miss Jessie's Curly Pudding as a contest prize. The girls are enjoying being allowed to stick their fingers in it and we are all enjoying the loveliness of our hair. This is some wonderful stuff, but not nearly as wonderful as Shirky's generous nature! Thanks again!

Brain Dump.

It has been a long and sombre week in the That Family household.
My grandfather, one of my most beloved family members, who was diagnosed in September with colon cancer that had metastasized to his testicles and liver is in the long, slow and painful process of dying, something that is hard to explain to a child and even harder to understand yourself. We are trying to introduce to her the topics of shiva, shloshhim and burial itself, slowly. Kid3 is handling these things better than I am.
Kid3 was suspended from school this week. Basically, the school has a zero-tolerance policy on bullying, and suspends both the bully and the victim. It will go on to her permanent record that she was suspended in 1st grade ESL class for a bullying incident, without indicating that she was the victim, rather than the perpetrator. Apparently, this can be used to exclude her from field trips, extracurriculars and extended education opportunities, to "protect" her classmates. It also makes it very difficult to move her to another school in our area, because they are all zero-tolerance too. Kid3, and her bully, are both expected to participate in school run counseling to learn about how to socialize. After school, you, know, when a lot of parents are still at work trying to make a living. With a parent in attendance.
Due to several troubling incidents at school in the last month - one of the teachers was suspended without pay pending a child abuse investigation involving a student - we have been investigating alternative options. Most of which are expensive, particularly to enroll an ESL student at the 11th hour.
So I "get" to go back to being a working mom next week. My boss was wonderful about increasing my salary, with a corresponding rise of in-office hours to from two hr/wk to three days a week.
Kid1 and Kid2 will be back to going to daycare at my mother's, getting 1/3 of the therapy they are getting now and generally being happy about that arrangement. Kid3 will be off to a Montessori school, 45 mins away, 5 days/week and That Spouse gets to spend an extra hour a day on his commute, to drop her off at school "on the way" to work.
It is one of those weeks when I wonder whether we have done a good thing for Kid3 at all. She has begged to be sent back to Russia, where the children are nice. I am begging to go back with her; the vodka is plentiful there.
It is a week of just doing what you gotta do and praying that it will come out okay in the end.

I'm Not Quite Sure Where She Picks These Things Up

Spend an hour in this household and you are likely to hear each of the following phrases, repeatedly.

"Feeling lucky, punk?"
"That's rotund!" As in, "that's awesome."
"Like, awesome!"
"That's so very, very old." As in, "That is so last week!" But so much more pitiful.
"I wish I were an Oscar Mayer wiener..."

Happy New Year

And all that jazz.

The new year is not a particularly momentous event in our family. We don't take the time to make resolutions or bring in the new year with a bang. But we do take the time to wish our friends the best of the best and the least of the worst in the coming year. Happy 2008! May your next 366 be truly blessed.