A Year Ago Today

I got a phone call about an hour ago.  At 10:37, to be exact.  It was Trent, remembering the moment, one year ago today, that our little angel tried to fly out the window.  He wanted to talk to Angelee on the phone, and drank in her happy little voice as she cheerfully described all the toys she had been playing with.  We are both overcome with gratitude that we still have her with us.

So what has she been up to?  This summer she flushed half of a package of feminine products down the toilet, resulting in our basement flooding with raw sewage.  She single-handedly got us three floods, four costly visits from the plumber, and a forced evacuation for a week.

This was followed up by her tipping her chair over and crashing into the sliding glass door.  The whole family watched.  She was very still, staring straight up while sitting in her booster seat, strapped to the big chair.  The top of her head was through the glass, one arm was sandwiched between two jagged panes, and her smooth neck was exposed to the heavy triangular stalactites of glass just waiting to fall.  I extricated her as quickly as I could - and couldn't find a single scratch on her.  Later, Trent put on his leather gloves to clean everything up, and found that those big pieces were barely hanging in the frame.  I think her guardian angels are working overtime.

We have people ask us all the time how Angelee is doing.  By all respects, she seems to be a fairly normal girl.  She complains when it is time to take a nap, loves to sing and to be sung to, runs through the grass, would eat fruit all day long, talks on her calculator "cell phone," and sometimes plays nicely with her baby brothers.  I looked up a list of "What Your Three-Year-Old Should Be Doing Now," and she's doing fairly well.

She should be able to build a tower of 4-5 blocks.  Check.  If the blocks are interlocking like Mega Blocks, her tower will be more like 10-15 blocks.

She should walk up steps, alternating feet.  She was able to do this by last Thanksgiving.

She should pay attention for about three minutes.  I've never actually timed this, but I'm pretty sure that she has approximately this kind of attention span.  Raisins, fruit snacks, and chasing our cats will increase this time.  Sometimes she won't sit still at all.  I think this is also normal behavior!

She should turn pages in a book one at a time.  Yes, she does this, but she starts from the back and turns the pages towards the front.  Don't try to correct here - that's the way she likes it right now!

She should remember what happened yesterday.  I just asked her what we did yesterday, and she told me, "Gram and Pop and you and me and Daddy ummm... have a party.  (singing)  Party, party!"  We celebrated her birthday yesterday because we were at a family reunion on her actual birthday.

She should know some numbers, but not always in the right order.  I just asked her to count for me, and she said, "One two fee, fo, seben, eight, nine, ten!"  Check.

She should be able to look through a book alone, and like to be read to.  Definitely, on both counts.  She has found a series of Winnie the Pooh books we got (thanks, Grandma Jeanne!) when the oldest boys were little. She hauls them around in her stroller, sits down with four or five of them, and reads to herself.  Last night she had two grandmas reading stories to her, and she loved it.

She should be able to count 2-3 objects.  Not really.  She know plurals, so she knows the difference between  one sandwich and two sandwiches, but if you ask her if she'd rather have two pieces of candy or three, she'll say "two".  Maybe she's smarter than I'm giving her credit for.

She should be able to follow simple one-step commands.  Yup.  Sometimes she will follow two-step instructions, too.  And sometimes she won't do anything we ask.

She should be able to use 3-5 word sentences.  Check.  She's been eating lunch as I type, and just told me that she's all done with her sandwich and apples.  "Now mine can haf some foot sacks (fruit snacks)!"

She should be able to ask short questions.  She was looking over the play dishes we got her for her birthday, and held up a spatula.  "What this is?" was her question.  I love seeing her big, open, blue eyes when she wants to know something.

She should be able to name at least one color correctly.  Check.  I think she knows all the primary and secondary colors.

She should know her first and last name.  Well, she knows her first name, anyway.  She has just discovered the letter "L", and pronounces it in an exaggerated way when she says, "An-zha-LAY!"  I haven't thought to teach her about last names.

She should be able to recognize and understand most common objects and pictures.  Check.  Some of our favorite quiet-time toys are cheap picture books that we have put familiar things in for her to look at.  She loves to look at one book that is full of family members.  We used that one at the hospital, to help her remember her family.

So - I guess she is fairly normal after all.  She does have a few minor reminders of her accident.  She has a tongue thrust that she didn't have before her fall, for example.  And it's time to take care of her loose screw.  But, today especially, we are so heart-glad to have her here.  My insides just shrink up when I think back to that day, and all the long days that came after.  I still can't open the window she went out.  Trent still has flashbacks of seeing her little body disappear out the window.  We really have been blessed.  I think I'll go hug her until she squirms free.

A New Room

Angelee has a new bedroom.  Her baby brothers grew too smart to stay in Mom's bedroom.  As they stir in the middle of the night, they knew that Mom was right there, sleeping in the bed across the room.  Dinner was only a a little wail away.  As a result of baby feeding, baby feeding, and Angelee's nightmares, I've been seriously sleep-deprived.  I'm only a few minutes away from hallucinations.  Unfortunately, the closest  bedroom to mine is Angelee's.  And the next closest bedroom is all the way downstairs.

Angelee's nightmares started at the accident.  I can't say that I blame her - I can't imagine many more scary situations.  Many times, she just cries out, but sometimes it's a horrific scream.  Her daddy and I rush to her bedside, trying to calm the frenzied girl, the galloping heart, and the shaking.  Her last dream had to do with a scary car (?) which burst through the front door, came down the hall to her room and growled at her before falling down the stairs.  She will often reenact the events for us over the next few days, as it clearly terrifies her.  Fortunately, her bad dreams have been getting fewer and overall milder, or I wouldn't think of moving her away from me.

With the exception of her first night in the hospital, she has never been away from us.  From the night of her peaceful birth at home, she has been where I, or her daddy, could hear her breathe.  I'm excited, and sad, that my baby girl is growing up.

Last night was her first night in her new room.  She slept wonderfully.  Her bed is only two hops away from her most caring brother, with two night-lights and a door that squeaks if she tried to wander.  I hate having her so far away, but it's working out.  She loves her freshly-painted new space, and the dresser where she can reach all the drawers.  And she is so happy to get in her "tiny little bed."  Sleep well, my little angel.

What Gets Under Your Skin?

The first little blue line we saw in the scar in front of Angelee's ear has disappeared.  The line was really one of the stitches that the surgeon had used to sew up the layers of tissue inside her noggin before they put her skin back on.  The line looked darker blue for a couple of days, and now - it's gone.  I guess that stitch worked its way up and out.

The other little blue stitch, over the top of her ear, took a bit longer.  I was brushing Angelee's hair today - she'll let me do it now, if I'm gentle and distract her - when I noticed a dark blue thread just sitting there.  I brushed at it with my fingertip, and it came off.  No hole, no blood, no evidence that this little bit of foreign matter had ever been under her skin.  I wish all the little things that get under my skin would resolve so neatly and quietly... maybe I just shouldn't let them in to begin with!

Words and More Words

When we were at the doctor's last week, he asked us how Angelee's speech is coming along.  She's learning new words all the time, we assured him.  He paused and looked at us sternly.  "Yes, but how many words can she say?" he asked.  "Oh, I don't know," I stammered, "I haven't really kept a tally for a while."  With a now-visible twinkle in his eye, he teased us about it, and my heart rate went back down.  For a moment there, I thought we were supposed to have been keeping track, and I felt like I was back in my old nightmare of having a math test I hadn't studied for.

So!  When I got back home, I thought I'd try to capture her current vocabulary and compare it to the just-after surgery tally and the before-accident one.  As it turns out, she has a bunch of new words, but not as many as I had expected.  The real change (as is developmentally proper for this age) has been in how she puts the words together.  She's understanding more, and stringing her thoughts along in ever-increasingly sophisticated ways.  She speaks in 5- or 6- word sentences, and uses whole phrases now, such as "I like it" (always in the same cheerful sing-song tone).

The other day I was washing her hair.  She was happily singing songs without words (she likes how her voice echoes in the shower or tub - who doesn't?) until I poured water on her head to rinse out the shampoo.  Her singing quickly changed to shrieking, just as Daddy walked in the room.  "She loves this part," I laughed.  Angelee quickly contradicted me.  "NO!" she yelled.  "NO!  Angelee no 'I like it!'"  The funny part is, she yelled the "no" and sweetly intoned the "I like it."

It's good to have something happy with which to fill our hearts.  My heart is full and grateful to have all this.

A Loose Screw?

It was time to visit the neurosurgeon for our post-surgery visit.  Has it really been six weeks?  Life is never boring at our house, and the weeks seem to fly by.  We had three concerns for the doctor: pain, blue marks, and a bump.

Occasionally, Angelee complains of pain around her left ear.  Sometimes she will look concerned, and rub the area, and sometimes it seems like the pain is more acute.  She'll stop everything,  yelp, "Owee!  Right here!" and point in front of her ear.  The doctor said this is caused by the nerves regrowing.  If she were older, she would likely describe it as sudden, sharp pains, an occasional dull ache, and tingling or pins and needles.  This is quite normal, and in fact, the doctor said she was healing very quickly.  He wouldn't have expected this reaction for another month or two.  Score.

We have noticed a small but distinct dark blue line in the middle of the scar right in front of Angelee's left ear.  Another line was slightly less visible over the top of her ear.  We wondered if it had anything to do with her painful episodes, or if it was a vein regrowing there.  It turned out to be the stitches below her skin.  They are dissolvable, but sometimes the body will "spit them out" instead of absorbing the material.  The doctor described how the body moves the offending part up through the layers of skin.  We may see the ends of the stitch poking out, or just find it on her pillow one morning.  Again, normal.

Angelee has a bump on the side of her head.  It's hard and round, just behind her left temple.  At first, we  wondered if she had bonked herself, but it didn't go away.  It felt like... a screw.  Holy bananas, Batman, does our little girl have a few screws loose?  Yep, it's a screw.  It might be that one of the screws has just raised up higher than it should, or it might actually be loose.  We'll keep an eye on it to make sure it doesn't get any higher, or that the skin doesn't look strained over the top.  If he needs to, he'll do a same-day surgery, make a little slit there, and take the screw out.  For now, the implant feels sturdy, and he doesn't want to be taking anything out for another few months.  So this one is a "wait and see."

All in all, the doctor was pleased with her progress.  She still won't talk to him, but she looked at him this time, and even cracked a shy smile.  He's a wonderful doctor and a nice man, but I wouldn't mind if we don't see him often enough for Angelee to really get to know him!

Post-Surgery Diet

My Registered Dietitian sister-in-law once told me that after you have had surgery, your body needs proteins to rebuild and heal.  Maybe that is why Angelee has become so picky about her food.

We sit down to a (I thought) tasty and well-rounded dinner of turkey, mashed potatoes and gravy, vegetables, stuffing, and cranberries (thanks to the great Man-cook for my birthday dinner!), and what are the first words out of Angelee's mouth?  Everyone else said something along the lines of "Yum!'  But Angelee wrinkled up her nose and proclaimed, "I need meat!"

She picks the fish out of our sweet and sour rice.  She eats the ham off the baked potatoes.  She liberates the lunchmeat out of the sandwich and leaves the bread.  She scoops the beef out of a taco.  We hear it often, "I need meat!"  She makes us laugh, our little carnivore.

Home Again Again

We were able to get our angel home later on Friday night.  Here she is, ready to ditch the hospital and go home with a soft crocheted cap instead of the hard helmet.

And here it is Wednesday afternoon, and I'm just now getting around to telling about it.  We've just been busy since then.  It reminds me of when Angelee was in the hospital the first time and her first-grader brother, trying to find positives in the situation, said, "Well, at least it is quieter around here."  Yes, it is quieter when our little spitfire isn't here.  But it's a too-empty, not-good kind of quiet.  I like my active house with our happy, on-the-go family.  It's just not right when we aren't all here.

Some random notes from in the hospital:  Angelee slept really well in the hospital this time.  Sleeping helps her to heal, and it helps Dad not to be a basket case in the morning.  The hospital gives plain cloth dolls (with hospital gowns) to the children to decorate.  The staff can use the dolls to demonstrate procedures, too.  Angelee loved her dolly, and wanted Mommy to draw lots of happy faces on it.  It's neat that volunteers make these dolls to help so many sick kids!

We were initially told that she had damaged the speech center of her brain, and may not talk or understand language.  Her CT scans now show a completely empty spot where her brain was damaged.  Her language skills now are nothing short of miraculous, and even better now than before the fall.  It was nice this time that she could tell us when it hurt.  "Owie, right here."

  Angelee's head drain worked better this time, and didn't spill out onto her head and pillow.  That was kind of gross last go around.  After surgery, they leave a small tube under her skin, connected to a little plastic ball.  The ball slowly fills up with fluid (we called it Angelee juice) that otherwise would have made her head and face swell up.  The drain wasn't working right for the last surgery, and she swelled up.  This time, however, we had very little swelling, even after we went home.  Yes, she swelled.  Her face was pretty lopsided for a couple of days.  But she didn't get a black eye, and her left eye didn't even swell shut.  Now she's looking pretty good - except for the long line of stitches snaking across her head.  Here is her first self-portrait, taken when she stole my camera.  You can see a bit of swelling:

And here she is, with a happy brother, two days after surgery.  This is the most swelling she had.

Her brothers are sure happy to have her back home and doing so well.  Here she is, singing with another brother on the piano.  Love it!

Grateful

Things are going very well.  Angelee got the second IV out, and the first IV line unhooked from the pump.  She is taking in all of her food and liquids by mouth (but they like to leave one IV in until it's time to go home, just in case).  The drain in her head just came out, and she doesn't have to be hooked up to all the constant monitors.  She is bouncing around the room, asking for apple juice.  Sip.  Chockee (chocolate) milk!.  Sip.  Water.  Sip.  Shoes!  No, the other shoes.  How about Mom's shoes?  And can we go for a walk?

If she keeps this up, they will let her come home tonight.  Happy dance!

I am so grateful for the miracles modern medicine can pull off.  I am so grateful for our bodies.  They are amazing machines!  I am grateful for all the kind people who make helping sick kids their profession.  I am grateful Angelee is doing so well.  Thank you for your prayers!

Surgery, Part III

Here we are, back at the hospital for Angelee's third surgery.  She is going under the knife (what a great expression) today to get the synthetic plate put in her head.  We like our girls good and hard-headed.

She didn't get in to surgery until about 1:30 this afternoon.  The doctor said that it looked like she had been regrowing some skull, so he'd try to keep as much of it as he could.  He'd rather cut out some of the implant than new bone.  Good doc.  They said the surgery would likely last about 2 1/2 hours, so we're not anticipating hearing anything until later this afternoon.  The nurse popped in after the first hour (while I was grabbing some lunch, of course) and said everything was going well.  So for now, we just sit and wait.   I guess I won't be home for dinner, after all (and there is a yummy roast in the crockpot, too!).

Big Day Tomorrow

Well, it looks like we'll be going back to the hospital tomorrow.  She doesn't have the first slot, so we don't have to leave quite so early.  On the other hand, it's a bit more waiting time.  Not much, though.

Her daddy took Angelee to the hospital today to do the pre-op work.  Paperwork, paperwork, and more paperwork, a quick visit with the surgeon, a bloodwork poke for the poor girl, and her branding.  Now she's got a sticker on her back and a "watch" (blue plastic hospital ID bracelet) on her wrist.  She did pretty well until she saw the doctor, and then she got a panicky look on her face, jumped into Daddy's arms, and tried to hide.  I don't think she'll be very excited when she figures out where we are going tomorrow.

We got the model of her skull they used to make her implant.  

With the results of her last CT scan, the company made a life-sized 3-D model of her poor little head.

So this is what she looks like right now, with a hole in the side of her head.  The actual edges are very jaggedy, but the doctor drew on this little skull model to show where he was going to cut.

And here is the implant they made to fit the hole nicely:

Fits so well!

And this is what she'll look like tomorrow night.  Nice and sturdy, but I'll always feel like she's fragile.

Wish us luck tomorrow!

Surgery Ahead

Sorry.  Bad pun.  I couldn't resist.

Angelee is scheduled for surgery this Thursday.  We'll be taking her in on Wednesday to get all checked in with the wrist bracelet (which she hates) and the blood tests (which she hates more) and the paperwork (which I hate).  We'll go home, try to settle our last-minute details, get up at o'dark-hundred the next morning and make the drive back.  It doesn't seem as long now since we drove over 750 miles last week for the funeral in Alaska (and that was after the seven-hour plane flight).

So we'll spend this week cleaning, resting up, and playing.  I like playing at home with my kidlets.  They are fun.  Angelee just came in, upset, and told me, "Mama!  Nate.  Foo.  Boom.  No!"  Evidently the kids (Nate and Foo) had been rough-housing and one had made the other fall down (boom).  She doesn't like it when they get hurt.  Now she's saying, "Need potty.  Shappy (her word for sucker).  Yeah!  Potty?  Mama?  Potty, peesh?  Shap-py!"  Can you tell that we're potty training?  And what her favorite reward is?  Oh, I'd better go take her.  She's unplugging my computer.

I'll leave you with a shot of the sticky girl, eating a candy stick she got at church.  So happy!

Grandpa Ras

Angelee is a lucky girl to have three sets of grandparents who adore her.  Mom's folks and Dad's folks, of course, and the bonus grandma and grandpa in Alaska.  What loving, warm-hearted people they are!  Years ago, when the older boys' father died, Grandma and Grandpa Ras could have let the relationships grow distant.  Instead, they continued to cheer us on in our challenges and achievements, welcoming in a new "son-in-law," Angelee, and the twins like they were blood relations.  But families are made of love more than blood, and we've always felt the love-ties bonding our families together.

Grandpa Ras is one of the most accepting, big-hearted people we've ever known.  We love his wry sense of humor, his funny emails, his gruff but gentle voice.  Never would a birthday go by without his warm-wishes phone call.  We could always count on his optimistic, it-will-work-out faith.  Grandpa Ras, you are a stalwart rock of goodness; a beacon of the right in an uncertain world.  Thank you for the rich legacy you so carefully built for us.  We will truly miss you.

And the Doctor Says...

First of all, I have to give a big THANK YOU to the many folks who have told me "good luck" or "we're praying for you" (and an extra big thanks to the gold-hearted lady who brought us dinner tonight!).  I've had quite a few people ask me to let them know how the doctor's visit went.  If I neglect to talk to you directly, please consider this your phone call.  There are never enough hours in the day to do everything you ought to be doing, are there?

We finally got in to see the neurosurgeon today.  The holes in Angelee's skull are substantially larger now, and the doctor was concerned, but not completely surprised.  "This does happens sometimes," he said, and with his demeanor said, "but I was hoping it wouldn't."  She got a CT scan to map out the area, and a new plate will be precision-fitted to the space.  She will need another surgery to put it in, and possibly another surgery in a few years for a bigger plate.

We have a few things to think about and decide:
1) When to have the surgery, and
2) What kind of plate to have put in.

1) When.  It will take a week or two for the replacement piece to be made.  We could do the surgery then, or wait.  The doctor said we could wait six weeks to see if her own bone would grow back.  With such a large hole, however, the chances of bone filling it all in are very slim.  Her brain in basically unprotected right now, so she'll have to be very careful (and wearing her helmet) until everything is secure.

2) There are two different companies that make bone flap replacements.  The doctor said they were about the same to him.  We have the information about both, and need to do some research to choose one.

So that's our report.  Now we have some researching and deciding to go do.