Over the past year or so, K has really grown up. Twelve really is the new 16... sadly.

She's a passionate soul in all things. She's discovered her love of dance (not that she hasn't been wiggling her booty to anything with a beat since she could stand). Her instructors have pointed out her focus and dedication, which is great considering those are not her usual strong points. She can love fiercely, but when it comes to organization and focusing on the details, she still has a lot to learn. She's good at forgetting homework assignments, I never seem to see any informational forms come home from school, and I just discovered that she has been eating school pb&j's for a couple weeks now for lunch because she can't seem to remember to tell me she needs more lunch money. Scatterbrained. Just like her mother. Maybe I should train her to live by a list like me. Without my lists, I'd forget to eat lunch, let alone bring money for it!

This girl is currently in rehearsals for the Spring Variety Show at her studio. She has 5 roles in the performance, which means she's basically living at the studio on the weekends. She gets tired and grumpy, but has never mentioned giving up a single time. She dreams of Julliard and New York City some day. I'm not going to lie and say that doesn't scare the crap out of me. This girl has big dreams, bigger than I could ever imagine.

I never in my life expected the challenge of raising a little girl like our C. She is a handful, to say the least. Between her physical problems and slew of behavioral ones, she is quite the complex creature. We deal with everything the best we can, and we are learning better techniques and strategies every day, but I'd be lying if I don't lie in bed at night worrying that we have no idea how to best care for her or give her all that life has to offer her.

Then, there are moments that she stuns us with an outpouring of the magical little person she is underneath all of those "problems".

Last evening, the girls and I went to watch (and photograph) my nephew's baseball game. C was on decent behavior, but we all know that can change in the drop of a hat. Sometime around the 4th inning, a little boy who was playing by the building decided to pull the fire alarm, sending automatic alarms and recorded instructions to "please exit the stadium in a calm and orderly fashion". C DOESN'T DO loud noises. Especially alarms or any sort of possibility of an emergency. Her anxiety immediately kicked in, but instead of freaking out, she stood up, plugged her ears, looked me in the eye and said "mom, I think I need to go to the car to calm down for a while", which we happily did.

It took the fire department about a half-hour to get there and figure out how to turn the alarm off. Meanwhile, we went and got some food. By the time we were finished eating, it was all clear for the game to start up again. As we sat back in our seats, C said, as mature as she could sound "I am so glad they could turn them off and we could come back and enjoy the game again". Then, at the sight of three firemen standing behind us a ways, she asked if she could go over and thank them. "Of course!" I said, and watched my baby hop up and run over to thank and give high-fives to the smiling firemen. It's moments like those that I see her true, wonderful self shining through all of those troubles that cloud my view too much of the time. She is a beautiful person.
It was a rough one for our family. First of all, C was all out of sorts today and just all over the place emotionally... irate, rude, sweet, funny, sarcastic, screaming, crying, angry, happy, cuddly, lovey -- all in a matter of a couple hours. I think we have truly narrowed down these "bad days" to sugar consumption. As usual, I stopped at Tim Horton's for Timbits on our way to her Orthopedic appointment in Dublin this morning, and it was probably the kickstart of her attitude(s) for the day.

The worst part though, was what we learned at the Orthopedic appointment. This time, Dr. B wanted to do her X-ray without her brace (they do about every other appointment with and without it to see how it's progressing). Last time, with her brace on, she was sitting pretty at 48 degrees and hadn't really gotten any worse than the appointment 6 months prior. This time was a different story. With the brace off, she is 60 degrees. As soon as he said that, I knew it wasn't good. They'd always told us that anything over 50 degrees has them starting to look into surgery. The researcher that I am, I knew what was coming...

They want to do a major surgery and insert growth rods along both sides of her spine, anchored to her spine above and below the curve to try and pull the current curve into a straighter position. Then, every 6-8 months after that she will have to go back in for smaller surgeries to lengthen the rods about 1 cm each time to allow her to continue to grow in height. These surgeries will continue until she hits puberty and reaches her full height. Then once she's tall enough, they will go in and fuse her now-straighter spine in place. So basically, she's looking at two major surgeries and probably 6 or so smaller surgeries over the next few years.

The idea of this is basically scaring me to death. 

I had taken C to her appointment by myself this morning, so we scheduled a second consult to get all questions answered and go over everything with Hubby along on June 8th. That's also when we will schedule the surgery - probably September or so. For the initial surgery, she will be in the hospital for about 5 days and then be out of school for a total of about 4 weeks. They say they will arrange a tutor to come and bring her school work so she doesn't get too far behind. I can only imagine what that will be like considering how hard it is for her to keep up with school in a normal situation....

C seems okay about it. At first, I don't think she was really listening to the doctor, or the nurse who came in afterwards to go over everything. When I explained it to her again, it was like she was hearing it for the first time. However, she doesn't seem upset. She did admit to hubby that she's scared, but for the most part, she's excited about not having to wear her brace anymore, and the fact that when she wakes up from surgery, she's going to be taller and straighter right away!

Oh, and we haven't told her yet, but they are probably going to tell her "no more basketball" too. This is going to be flat-out awful.

Here she is today - no brace, 60 degree curve.


“Finish each day and be done with it. You have done what you could. Some blunders and absurdities have crept in; forget them as soon as you can. Tomorrow is a new day. You shall begin it serenely and with too high a spirit to be encumbered with your old nonsense.” – Ralph Waldo Emerson

I wish it were that easy. Today was a tough one for C. Whether it's related or not is yet to be determined, but she started a new med this morning to try and help her gain some appetite back and she's been an unhappy, inconsolable, irate, violent, tantruming monster from the moment she got home from school. Some days she's like this. The "bad" days. We are at a complete loss. When she's in this state of mind there is zero reasoning with her, talking to her or comforting her. I have no clue how to be what she needs, and it brings me to my knees! I love this little girl more than I can say, and seeing her struggle to be the sweet person she truly is is horrible... 

Tonight as she screamed and cussed and slammed things relentlessly for hours, I lost it. I say on the steps and bawled like a baby. I can't do this. I don't know how to parent her! I feel like such a failure.

And now she can't sleep. Which means I can't sleep. I'm sandwiched in a queen size bed between a squirmy, restless 9 year old, a dog who thinks the whole bed is hers and a man whom I cannot touch whatsoever or he'll writhe in pain. It's gonna be a long night...
(This is what you get when you turn on the flash on your phone camera and shoot blindly in a dark room - hilarity! lol)
I realized tonight that I don't think I ever got back around to talk about the results of C's evaluation by the Behavioral specialists. The good news is they were able to rule out the possibility of her being on the Autism spectrum. The bad news is that they diagnosed her with FIVE other disorders instead.

Her (behavioral) diagnoses are as follows:
- ADHD
- Anxiety Disorder
- Disruptive Behavior Disorder
- Borderline Intellectual Functioning
- Phonological Disorder

These fall on top of all her physical diagnoses as well.

We have started her back up on a regular dose of ADHD meds and they have really helped her a lot at school, according to her teachers. They seemed really pleased with the difference when we spoke at her parent-teacher conference a couple of weeks ago. The problem is, the meds have completely killed her appetite. The girl is simply never hungry - that is, until the meds wear off (late at night). She's losing weight at an alarming rate and I'm doing my best to sneak extra calories in wherever I can. It's frustrating because while every other parent in the world is doing their darndest to push the fruits and veges, that's all she wants to eat. Except I'm over here pushing the pudding and ice cream! I'm getting really close to calling the BH doc again and seeing about the possibility of putting her on something else that could help her get her appetite back. I can't even imagine trying to take her completely off her ADHD meds again after seeing how much they're helping her concentrate in school.

Too bad there's no pill for the disruptive behavior... while the ADHD meds do curve the behavior issues sometimes, just about every day we are dealing with several complete meltdowns about something as simple as a pair of socks or having to take a shower. She seriously turns into a 2 year old, tantruming and screaming at the top of her lungs. Only, unlike a 2 year old, she's big. And strong. And can be physically abusive without even knowing what she's doing. We are working on it though - finding out what works and doesn't. Most of the time, we just have to ride it out, because somewhere along the way, some unknown magical thing will flip that switch inside her just as fast as it did to start the "moments" (as we call them) and suddenly she'll be right as rain. Next step: find an awesome pediatric cognitive therapist in our area that takes our insurance....