Wednesday, January 27, 2010

Twists and Turns

I've waited over a week to write this update, to ensure the words would be issuing forth from a rational, rather than emotional, place.

As I've written, Abbie really enjoys school, and I felt her transition was going very well.  The only glitch I sensed was that the staff was anxious to have me out of the classroom before they were prepared to safely handle Abbie.  I worried that they did not yet know what they didn't know.  I have never hoped more strongly to be wrong.

Alas, I was not.  During the first in-school therapy session that I did not attend, Abbie's left femur was fractured, her left ACL was strained, as was the lumbar region of her back, as she was put into a twisting motion, while seated, that her body could not accommodate.  A staff member indicated there had "been an incident" during therapy.

As I picked up Abbie to seat her in her wheelchair, she began to scream and cry.  Blotchy face.  Big fat tears.  I had only seen Abbie like this once before, and I got the same sick feeling knowing that she had probably fractured one or both of her legs.  I touched base with Ray and asked him to call ahead to the Kapiolani ER.

Lots of films and a few hours later we found that the injury was limited to her left side, and because the fracture was a spiral, it was more stable than a through-and-through.  It is high up on her left leg, so the surgeon felt it was reasonable to give her a chance to heal without putting her in a dreaded spica cast.  I am so grateful for that.  We just have to be very aware of how we position and move her -- so far, so good.  We will have follow-up Xrays on Friday, and hope to see healing well underway.  Because Abbie's bones are so weakened, it does not take her long to get back to her baseline strength, which is a mixed blessing.

Because of the fracture she cannot bear weight for three weeks, so she will come out of this with even weaker bones as her bone density melts away.  This is a definite concern as we plan her return to school.

Return to school???  Yes.  Although many people we've talked to have advised to us to retain counsel, to consider legal action, or at the very least to throw a big huge fit, we don't see any of those contributing to a positive long-term solution for Abbie.

So, we had a meeting at the school on Monday which Ray and I both felt was productive.  This injury is a game-changer and although, as Ray put it, we have no desire to be permanent helicopter parents, they are going to have to get used to me being there until WE determine it is safe for Abbie.  There is a deep cultural bias against this within the Department of Education, but we have the great fortune of working with an outstanding principal whom we trust.  We have confidence that we will be able to work through this.  We have to.

On the upside, Miss Abbie has not been idle during this unplanned vacation.  We've used it to address more items in her IEP.  We've not worked on money very much, so we introduced that today.  In two hours she went from identifying coins to doing story problems like:

"If the ice cream cone cost 25 cents, and you have one dime, how much more money do you need?"

We tried to trick her with this one:

"If the comb costs 15 cents and you have three nickels, how much more money do you need?"
She correctly chose zero!  No tricking her!!

In all things there is a silver lining.  I think Abbie has, unfortunately through pain and suffering, proven to the school that I am not an irrational, overprotective mom, but rather an experienced, wise advocate for her.  I pray her sacrifice will be honored as we move forward.

We read our Psalms out of Abbie's "Discoverer's Bible" today, which is written at about the third-grade reading level.  The simplicity of the language often sharpens the message.   It was fitting that today we relished once again, in a fresh flavor, Abbie's touchstone verses:

Psalm 27:13-14
Here is something I am still sure of.
I will see the LORD's goodness
while I am still alive.
Wait for the LORD.
Be strong and don't lose hope.
Wait for the LORD.

Monday, January 11, 2010

A Frostie

"Whose woods these are, I think I know.
His house is in the village, though.
He will not see me stopping here,
To watch his woods fill up with snow."

                              -- Robert Frost

These are the first four lines of the poem we introduced to Abbie last Wednesday.  They are also the lines she memorized over the weekend.  How do we know this?  Rae figured out a way for her to prove what we suspected she'd already learned.

Rae wrote half of each line on an index card, she then put three of the cards on the board.  Without reading the choices to her, Rae would ask Abbie, "What comes next."  She didn't miss once.  So, not only was she able to read the cards, written in ballpoint pen at a normal size, but she was able to correctly sequence the lines.  Not bad for three days' work!!

We thought we would show this to her teacher today, and this opened my eyes to the challenges ahead, which are surmountable but present.  Abbie was taking longer to answer, and we finally figured out that much of it had to do with her  positioning.  Because she cannot adjust her own body very well, if she is not in a position that makes it easy to use her switch, she is not able to activate it.  She still did OK, though.  I am just hoping that when she takes a while to answer questions or do her board work the bias will become "what is preventing her from using her switches?" rather than "she is not understanding this" or "she takes a really long time to think."

We've become very adept at making it as easy as possible to communicate, but they've asked me now to step back and allow them to take the lead.  I am biting my cheek as I type, hoping it will stimulate the right words to describe how I feel about that....scared, excited, nervous, hopeful, wary, changes from one moment to the next.  But, I do feel that this is the next step in Abbie's Grand Adventure with God, and if nothing else, I trust in Him and in my girl who outdoes expectations at every turn.

One other little "peek behind the curtains."  We've been meeting with dizzying numbers of people in recent weeks to determine and coordinate the appropriate services for Abbie.  This being a public site, any and all are welcome.  However, it turns out that some in our service net read Abbie's website to determine what kinds of services she needs...I am not sure who, but the word we've recently received is that because, according to this blog, Abbie has gotten so much better,  we should be prepared for less services.  

Ray's eyebrows rising to meet his hairline is fair warning that steam will be  erupting from his ears in short order.  The above situation elicited that look, and he curtly asked me to leave the room so he could set the record straight.  I knew what he was going to say, so I politely declined to leave, and spoke on my own behalf.  He was going to tell them that I focus on the positive, the hopeful and the good and that doing so is essential to my survival through all of this.  His point may be valid, but I boiled it down to "we choose to make our victories and progress public, while keeping the challenges and struggles a bit more private"  (except for now, apparently!)  

For whoever is using this blog as an assessment tool...first off, shame on you -- there is a reason we fill out so much paperwork and and coordinate with so many people.  This blog is for family, friends, and fellow trekkers.  These people deserve to hear how wonderful our little girl is doing without the continual layering-on of the reality of life with a brain injury... we never get a full night of sleep; we are constantly battling her body to keep it from contracting, from being injured or requiring more surgery; her respiratory status requires constant vigilance; caring for her is the most demanding thing any of us has ever done.  Unless you have walked a mile, or a day, in our shoes you cannot understand.  That is part of the reason we don't prattle on about it....those who've not been here can't comprehend, and those who have don't need the explanations.

Whew -- I think that qualifies as a rant.  I apologize, but I guess it's reality.  Abbie's soaring cognition is one precious aspect of her life, but the things listed above are always in play as well.  We could really use your prayers for those areas - particularly about keeping her body as limber, aligned and functional as it can possibly be.

Back to our Little Miss, who has become so enthralled with not only "Stopping by the Woods on a Snowy Evening", but  also other works of Mr. Robert Frost (as we call him), that I am now calling her my Little Frostie.  In fact, in her honor, I will close with his sublime words, as they seem so fitting on a busy night:

"The woods are lovely and dark and deep,
But I have  promises to keep.
And miles to go before I sleep.
And miles to go before I sleep."

May God bless you!!

Wednesday, January 06, 2010

First Day of School

I know, I know...this post should certainly start with the requisite first day of school photo!  It was raining today, so our normal photo-op spot was unusable.  Once we stepped foot on campus, the whirlwind began, and although I did pack my camera along, it never made it out of the bag.  We'll try again tomorrow.

Miss Abbie was awake at 5:30, all grins and giggles, with anticipation gleaming in her eyes.  This day was finally, truly here!  As silly as it sounds, it was an all-out sprint from 6am on to get the boys out the door, and then get her fed, changed, dressed and ready to get out the door by 8:15.

I wanted to dress her in one of her pretty outfits -- you know, "matchy-matchy" from the socks to the hair ribbons.  However, I pushed pause on the "Mommy Plays Dress-Up" game long enough to think about what an average third-grade girl would want to wear on the first day of school.  Jeans it was.  Of course, she rolled to the van looking stylish anyway (and yes, her ribbons did match her shirt...I cannot help myself).  Unfortunately, all the lead-up excitement had pooped her out, and she fell asleep during the drive.

She opened her eyes briefly when we arrived, but then proceeded to nap deeply for the next hour.  I didn't have time to be too disappointed because so many staff members were in the classroom to greet and work with Abbie on her first day.  Speech, vision, public health nursing....I felt like I was the pinball pinging between questions and conversations.  But, it was all fruitful, and I was grateful to have their input from the beginning.

At last, around 10  Abbie really woke up, so I suggested we start the academic portion of her day.  Woo-hoo, was she on today!!!  We are using the same literature-based program we've used at home, and the book we've selected for this month is a book of illustrations accompanying Robert Frost's "Stopping by the Woods on a Snowy Evening."  She was so intent on the words and illustrations, and vocalized quite a bit in response to questions and observations.  The aides could already see that she was intellectually and visually engaged.  One of them did give me a look of surprise, though, when I mentioned that one of Abbie's tasks during this unit will be to memorize the poem.  I think she'll be even more surprised when she sees how fast Abbie will accomplish this.

After we were finished with language arts, we moved to math.  Because her IEP goals were written quite a while ago, she is now way beyond them.  I am thankful God dropped just the right word into my mouth to explain and justify to her why she was going to have to do such easy things.

" Abbie, at the beginning of the school year everyone -- your brothers, your friends, your classmates -- they all do something called 'review'.  Review covers things you already learned, and are easy for you, but you still have to show your new teachers that you know them.  So, today we are going to review your numbers and adding 1"

While this did help her be patient, I have to admit that she got irritated by being asked to identify numbers between 0 and 31.  It reminded me of how aggravated she used to get when I kept making her go through the alphabet.  But, she complied and showed them she knows the numbers .  We then had her do 7+1, which did not take her long.  Because she was getting impatient, we then let her do something like 9-3+1, which made her happier but did not take her long to answer.  Finally, we did let her do one multiplication problem, even though it's not in her IEP.  6x3 did not take her long either.

We did some calendar work, and she was quickly able to pick out 2010 as the correct year, even though her choices were 2009, 2010, and 2011.  Every time the aide or I thought something might be too hard, I just said, "let's see what she does"....she succeeded every time.

We did have a little meeting mid-morning to deal with some miscommunications regarding nursing.  The resolution means that Abbie will be staying at school until 1, instead of 12.  I think this will be a good thing for her, because it means more time to work when she's really awake and ready to go.

She glowed with contentment when we arrived home.  Then, I said the magic words, "Abbie, you get to go to school again TOMORROW!!"  She grinned, as if it were too good to be true.  What a precious angel.  I am so excited about what new levels she's going to be able to reach with a whole academic team supporting her.  Her life just got a lot bigger today, and her spirit is soaring in all that new space.

Monday, January 04, 2010

Happy 2010

I had to write that number in the title just to make it seem real. I can't believe we're already a decade into the new millenium. I apologize for such a long lapse in updates. Catching up is going to require a few separate postings, because so many great things happened in December.

One of the big highlights was welcoming Chase home from college.  We were happily surprised at how much he had matured in just 2.5 months....and thrillingly shocked that he got a 4.0 his first quarter at school!  Abbie was very happy to have Chase back, as she had been getting impatient for his arrival for the last week or so before he came home.  I'm glad that Chase has a late December birthday so we could celebrate with him.

There may be 19 of them, but these candles looked straight out of a Dr. Seuss book!

Can't believe this is his last "teenage" birthday cake!

The week of Christmas was wild: Kyle got his wisdom teeth out (12/21), we celebrated Chase's  birthday (12/23), and attended a wonderful Christmas Eve party.  But, in the end we enjoyed a quiet, beautiful Christmas morning at home. As always, the kids went through their stockings by candlelight. This year I focused on getting video, which has not been our strong suit through the years. So, I don't have a ton of pictures from Christmas , but here are a few:

The host of the Christmas Eve party made an appearance as Santa.  Unfortunately, this did not go over well with the under-2 set in attendance.  The chorus of wee howlers made me grin as their mommies tried to snap "happy" pictures.  I was glad to have a nice picture of my sons -- with no tear-stained cheeks!  My, how far we've come.

Abbie was tuckered out by the time Santa came to visit, but I wanted to get a photo anyway.  

Christmas morning found Abbie snuggling in her new snowman nightgown, surrounded by the world's most faithful elves.

The boys were especially caring with Abbie that morning.  As we were doing stockings, Kyle leaned over and said, "Abbie, would you like your glasses so you could see better?"  He got a resounding "yes" to that question, and the spectacle of Christmas morning came into clear focus for one smiling little girl.

The brothers had asked for just a few things, and so we opened their presents first while Abbie waited patiently (we thought.)  When they were finished we asked, "Abbie, do you want to open your presents now??"  She straightened and raised both of her arms as if to say "Helloooooo!  What do you think? Bring it on!"  She had so many delightful surprises waiting for her....a snowglobe with a ballerina in it, a huge Tinkerbell stickerbook, many cute "school" clothes, an embellished piggy bank, and a scroll fresh from China, with her name in kanji and English.

As we talked about the scroll, a precious gift from friends recently back from China with their new daughter, I was once again impressed with Abbie's memory.  She was enjoying looking at it, but when I told her that it came from China, where Ping the duck lived on the Yangtze River she lit up and began smiling.  We read the Story of Ping last May, and still she remembers...

Yes, there was still tugging on my heart, and thoughts of "how great would this day be if she were 'normal'?"  But, the reason for the celebration soothed my spirit and yet again encouraged me that now is not all there is...we celebrate that which we only know dimly.  When we see in full, any twinges of disappointment or shadows of grief we've experienced will vanish forever. ballerina will not be in a snowglobe!