Thursday, December 23, 2010

The Next Appointment

Concerned about Angelee's newly squishy head, we called the doctors (after calling the insurance company to make sure it would be covered, and to see if we needed pre-authorization.  Love that red tape!).  They wanted us to come right in and be seen by the doctor who had done the original surgeries.  But he is out for Christmas, spending the money we're paying him.  

They got us in for the next possible opening - at the end of the first week in January.

Oh, and we should keep the girl quiet until then.  No running or jumping or bonking or falling.

And she shouldn't wear the helmet.  It might make the bone absorb faster.  Just watch her carefully.

Yup.  No problem.  I don't have anything else in the world to do right now than to make sure a two-year-old doesn't act like a two-year-old.  Forgive the sarcasm - I guess I'm still feeling a little bit grumpy about it.

Monday, December 20, 2010

Here We Go Again

It was midnight and the house was quiet.  All the children were asleep - or nearly all.  One sweet baby woke up just as I was slipping into bed, and the tired little tyke fought sleep for a long time.  I held him and reached for a notebook to jot down my thoughts, planning on typing it out later.  He'd grin at me, a bright toothless smile, then collapse on my shoulder to rub his eyes.  He might fall asleep again, but I didn't know if I could.

At church Daddy was holding Angelee.  He stroked the side of her head, fuzzy with regrowing hair.  With concern in his eyes, he signed a quick message to me.  Balancing a fussy baby, I couldn't see clearly, but it looked like he was worried about how bumpy her head was.  It does seem like her nice, hard skull has gotten a few more lumps.  Would a comb or brush scrape or catch on the uneven topography?

Later in the day, Daddy went to wake Angelee from a long but started-too-late nap.  He came out chuckling, telling me that she was sound asleep - with her eyes wide open.  He went back down the hall to her room, but didn't come out very quickly.  It didn't take long for that nasty "what if" monster to grab me.  What if she's quiet for so long, and has her eyes open... because she is... gone?  What if today was the last day we got to keep out little girl?  I'm not paranoid very often.  But sometimes it just happens.  He reappeared with a sleep-groggy girl in his arms, and I started to breathe again.  Stupid monster.

I snuggled Angelee as she slowly woke up.  I wrapped my arms warmly around her, and she nestled into me, trying to go back to sleep.  I rubbed her soft cheeks, her silky hair, and then I felt it - the soft spot in her skull that he was trying to tell me about at church.  In the middle of her once-smooth-and-hard-but-now-lumpy bone flap was a not-supposed-to-be-squishy spot.  I felt sick.  After a few moments, I gently probed the area.  Yes, it was real, and soft, and slightly pulsating with Angelee's heartbeats.  I was feeling Angelee's brain again, where there used to be hard, protective skull.  What happened?

I got on the computer and did some research.  It looks like it's not uncommon for a reinserted bone flap to get absorbed by the body.  The chances of this happening are as high as 50% in some studies!  There is a better chance of this happening with young patients (check), and when you have a larger flap (check).  Why did they not tell us this?  I hate it when a medical procedure is touted as being all great and wonderful without any mention whatsoever of negative outcomes or chance of failure or possible side effects.  It's just not honest!  It's not like having that knowledge would change what appears to be happening right now, but at least you could be prepared for a different possibility.  I am angry, and afraid.

I am scared that my little girl will have to go through surgery again.  I don't want her to have to go through all that.  And what will they put back in to cover her new hole?  Something artificial?  Will her body reject it, too?  Will it have to be replaced as she gets older and her head grows?  "Replaced" sounds like such a dull, ordinary word to describe "cut open your head and mess around with your skull."  I really don't know that I'm up to doing all this again.

I should be counting my blessings, feeling grateful that we have such an amazing miracle as simply still having our daughter alive.  But as the dark winter storm outside pounds on my window with wind and rain, I can't help but cry a little bit.  I'll have to let go of the "happily ever after."  Again.

The baby is finally asleep, his rhythmic breathing calming my worried heart somewhat.  I should rest, too.  I don't know if I can.

Tuesday, November 23, 2010

Getting Sick

All the stitches are gone.  The shorn side of her head is growing soft blond hair again.  The incision, once a red, jaggedy gash, is now a gentle pink scar.  She talks in three-word sentences, and adds to her vocabulary daily.  Both hands worked evenly well to spoon in her dinner: fish, rice and vegetables, with peach cobbler for dessert.  She ate it all.  She can walk, run, and even dance on her tiptoes.  When she wears her hat, she would look to anyone like a normal, active toddler.  It's hard to think normal, though.

Recently, Angelee came down with a fever.  I instantly plunge into worry mode.  Normally I am a very calm parent.  Really.  But with Angelee, I have to look at it from every angle.  Exactly how hot is she?  I grab the thermometer every hour to check, ignoring her loud protests.  What if it is...bad?  She kept the fever for a few days, spiking to almost 103, but cooling off with a dose of Tylenol.  She had cold-like symptoms, and we did have a cold going around the family, but I felt like it was something more.

I finally took her to the doctor, something I never do for a cold.  He was not concerned, and sent us home with prescriptions for cold medicine and an antibiotic, just in case it got worse.  He dismissed the sores around her mouth as normal cold sores, and left me feeling like something was missed.

The next day, when I found the sores in her mouth, I realized it was the Coxackie virus, or hand foot and mouth disease.  It is characterized by several days of high fever (check), general feeling yucky (check), cold-like symptoms (check), painful blisters around and in the mouth (check), possible sores on hands and feet (only found one), loss of appetite (check) and pronounced grumpiness (double-check!).  It lasts for about two weeks and generally goes away on its own.  Pain reliever helps some, but just batten down the hatches and grit your teeth folks, because this one is a doosey.

Angelee was awful nasty irritable.  She constantly wanted to be held, rarely wanted to eat, cried frequently, and work up every hour at night.  She was a mess.  We were a mess!  It lasted about a week and a half, before slowly decreasing.  It's so nice to have our girl back (again).  I'd like to quit losing her. And one day, maybe I won't worry so much.

Tuesday, November 16, 2010


I think I mentioned that Angelee has dissolving stitches in her fuzzy little scalp.  Daddy counted them as she slept, and came up with 92.  Nearly one hundred stitches - it's horrifically amazing.  They start from her center forehead, at the hairline and curve gracefully to the back of her head, reversing to come up behind her ear, then jump up over the ear.  The only place the scar will really show when her hair grows back is the four or five stitches there in front of her left ear.

They told us that the stitches would disappear between two to three weeks.  A few days ago, I was putting our daily antibiotic ointment on the incision when a couple of the stitches came off under my fingers.  I looked at them for a long time, fascinated at the technology in a gross sort of way.  Since then, a few more have come off every day.  She's only got five left now.  I'm glad the incision has healed so well.  Hopefully we'll be all knit together soon, and we'll be done with this phase.

I hear that vitamin E oil will help minimize the scarring, so she won't stab her head when she combs her hair.  She'll happily wear a soft cap to keep her head warm in the cool autumn weather.  I wonder how long it will take for her hair to grow back.

In Her Own Bed

We finally got Angelee to sleep in her own bed.  Not getting enough sleep is enough to make a person a tad loopy.  Not enough sleep for a couple of days can produce grouchiness.  Try two months.  Nay, try two months AFTER being on a perpetual low-sleep diet due to twin babies.  We had to sleep with her when her head was so delicate.  But now her brain was protected all the way around by nice, strong skull.  She didn't need us to pad her nighttime.  It was time for a change in sleeping arrangements.

Angelee's bed is a bunkbed with a single bed on top and a full-sized futon on the bottom (she sleeps on the bottom, of course).  The first time we put her on it, she looked so tiny on that big bed.  She makes full use of it: sleeping on one side, then the other, rolling to the top, curled up or spread-eagled - she is a wiggly one.  But after she was at the hospital, we folded it up to the futon since she wasn't using it.

I have put her down for naps on her futon-bed, and she sleeps there - but not willingly.  I had an idea the other day, and folded the bed back down.  As soon as she saw it, she ran over to it, jumped up, and excitedly cried, "Bed!"  Then she figured out that jumping on the lower bunk of a bunkbead is not a good idea.  Bonk.  When it was naptime, she got into bed quite willingly.  That night, Trent and I were nervous about how she would take sleeping by herself.  We were all worked up for a long night.

We put her in bed, tucked her in with the quilt Gram made and her fuzzy, pink crocheted "blankie."  I sang her a song, Daddy gave her a kiss, and we walked out and closed the door.  We both waited for the wailing.  Nothing.

We got ready for bed, blissfully without any "Angelinos."  Some of her favorites when our backs were turned were pulling the covers off our bed, poking the sleeping babies, squirting lotion on our pillows, turning the lamps on and off, and eating lip balm.  Really?  She's still not crying?  Is she breathing?  We gingerly peeked in her room, only to find her in the exact same position we had put her, a sweet toddler-sized sleeping beauty.  We celebrated by going to bed early.

Friday, November 12, 2010

Happy Anniversary

Three years ago I married the sweetest man.  I was pretty amazed that he was brave enough to take on a single mom toting five boys.  Not only has he slipped happily onto the parenting role, but he is really good at it.  He loves all the boys.  He helps me teach and guide them.  He looks over their homework.  He plays pool with them.  He teaches them how to mow the lawn and work in the yard.  AND, if these wonderful hooligans weren't enough, he wanted more!  So we added three little ones to our family.  One for each year (don't count on that trend continuing).  He is a great dad.

We spent our anniversary window shopping in a new furniture store we'd been wanting to check out.  It was very romantic, looking at the fancy four-poster beds, the sumptuous pillows, and the plush bed linens.  A nasty aroma spoiled the mood, and we had to stop and change a diaper.  Oh, we had Angelee and the babies on our hot date with us.  Then Angelee dropped a small ceramic ball, shattering it to tiny shards.  And one twin started to get grouchy.  And the other one got hungry.  And Angelee didn't want to be strapped into the stroller any more.  Time to go home.

But happy anniversary anyway, my dear.  I can't say I didn't try to warn you about this happy chaos.  But you seem to like it.  It's nice to be loved and needed.  And we do love you.  Thanks for jumping over my flowers and into our lives.

May the next year be even more full of joy than this one has been!
(And may it have fewer trips to the hospital)  <3

Wednesday, November 3, 2010

Out to Eat

Angelee, like most two-year-olds I've known, can be a little picky about what she eats.  Apples?  Yes, please.  Actually, any kind of fruit meets with a happy girl face.  Chunks of meat?  Yes!  But bologna or sandwich meats?  Nope.  She'll turn up her nose at a fried egg, but happily eat a scrambled one.  She won't eat dry cold cereal unless it comes from the drawer in Dad's office.  She loves peanut butter and jam sandwiches.  Juice?  Ice cream?  Jello?  Mashed potatoes?  Yes, and yes.  Toast?  Not so much.  Oh, and she'll eat most anything on Mom's plate.  We learn what kind of things she generally likes, and slowly introduce other things so her diet is well-rounded.

Today, however, she has been very picky.  Pancakes and syrup went over pretty well, but she didn't want her standard cup of milk.  Her lunch was mostly untouched, and she kept asking for candy and sweets (see what nasty Halloween does?).  I kept trying to get her to eat good things.  Moms don't give up on their kids.

So I'm shaking my head about her afternoon snack:  cat food.  She let herself out the back door, and before I could get to her, she had squatted down by the cat dish and was eagerly chowing down.  Yum.

Sunday, October 31, 2010

Settling in at Home Again

So here we are, three days after Angelee's surgery to put her bone flap back in.  I'm having a hard time believing that we were ever really up at the hospital.  It went so fast.

We had to be at the hospital at 6 am (makes for a really early morning and a long, dark drive) for her surgery which got underway at 7:30.  The neurosurgeon (who was the best I've ever worked with, and I've had a few) was out visiting with us after the surgery by 11.  Angelee was through the recovery room (groggy and grouchy) and settled into her room a bit later.  The early afternoon went quickly and routinely, and I left at 4 to get out of the city before rush hour got going.  Besides, I had to finish the Halloween costumes so the boys could dress up for school on Friday.

She wasn't happy about being in the hospital again.  I wondered if it would be worse for her this time because 1) she remembered the unpleasantries from the last hospitalization, or 2) she would be more coherent and aware of things she didn't like.  She didn't seem to have any bad memories, but she was more colorful about telling us her opinion this time.  I think this was part of the reason she had such a rough night.  She didn't want to go to sleep unless Daddy was holding her, and would wake up and cry if he put her down.  They walked the halls, watched movies, rocked - anything to get her to sleep.  She finally conked out at 2 am(!), only to be rousted in a couple of hours.  They had to take her vitals at 4.  They had to draw blood at 6.  Doctors visit at 7, and vitals again at 8.  By the time I came in at 9, I thought Trent, looking haggard with dark circles under his eyes, was just getting into the Halloween spirit by being a zombie.

Angelee, however, was quite perky when she woke up at 10.  She was playing in her crib, singing songs, picking at the IV, and happy to get a good morning milk.  She ate enough snacks that she wasn't very interested in her breakfast.

The neurosurgeon, when he came in, said she looked too well to be able to stay in the hospital.  (The other kids might get jealous.)  She had to have a CT scan, get her drain (draining fluid out from between the skull and the scalp) removed, get the two IV lines out, and then she could go home.

We were home by 4 - extremely fast by hospital time, which usually drags on its own schedule.  We had a celebratory dinner of lasagna and the season's first eggnog - love eggnog season!  Angelee ate three bowls of the pasta, and we had a great time watching her do it.  It was good to be home.

We watched with interest as the side of her head and her face swelled up again, until her left eye was completely swollen shut.  Only the tips of her long lashes were visible.  They told us to expect swelling and possibly a mild fever.  Check, and check.  The boys think it is cool, in a gross, Halloween-y way, that her head has swelled up enough to make her ear tip out at an odd angle.

By Saturday morning, her eye was starting to open just a bit, and the puffy area was reddish, like it had been 4 days post-surgery last time.

We did let her dress up for Halloween, in a borrowed outfit (thanks, Robyn!) and a new crocheted cap to match.  We had lots of suggestions for costumes for her: football player (with the helmet), car accident survivor (needs more stitches), Strawberry Shortcake (with a big, poofy hat), and Frankenstein's daughter (she's a natural!).  She made an adorable fairy, and her little brothers were sweet peas in a pod.  We could tell she lives in a house full of boys, though.  The pink, ribbon-festooned thing in her hand is not a "wand," but a "stick."

Today her right eye is also swollen, but her left eye is looking better.  They are almost the same now.  She's still very demanding, grouchy, and temperamental at times, showing us that everything just doesn't feel right to her yet.

Her head is still very tender, but the plated and screwed bone is strong enough that she doesn't need to wear the helmet anymore.  We want her to wear a little hat instead (Mom's getting crafty with the yarn), just to keep her fingers from picking at the stitches.  They will dissolve in a couple of weeks.  If I'm careful, I can kiss her head gently.  I've missed that.  Kissing the top of a cold plastic helmet is just not the same.  And it's so nice to feel, instead of a soft squishiness, a nice, hard head.  I love my little girl's wonderfully safe skull!

Friday, October 29, 2010

Coming Home!

Wow!  I hardly have time to fire up my computer here and Angelee is cleared to come home.  She looks great, and everyone is amazed at how quickly she is recovering.  She's running around the room in her shoes, but won't let us put any clothes on her.  I'd better go get the juice from her before she dumps it on the babies. Sound like a toddler?  :-)

Thursday, October 28, 2010

Eat Your Heart Out, Humpty Dumpty!

Angelee's surgery was supposed to be between two and four hours.  It ended up being a little more than three and a half.  When the surgeons got in there, they realized that her little growing body had been calcifying -  making bone - to cover the exposed brain area.  The surgeons decided to take out the new bone (it was uneven and would give her a bumpy head, and also the old pieces wouldn't fit back in properly) and use the new as to fill in gaps or holes.  This they did successfully.  They screwed the bones (new and old) into place using screws and plates that are absorb-able.  In a year, they won't be there anymore.  Freezing skull pieces until you need them.  Disappearing screws.  How cool is that?

As Angelee came out of the anesthesia, she was fussy - but only for a moment until she'd fall asleep again.  When she really started to wake up, she looked around, looked at me, looked hard at the bed, and fiercely said, "Down!"  She noticed the despised oxygen monitor strapped to her big toe, stuck it up in the air, and demanded, "Off!"  Yup, she's back! 

When I left the hospital later this afternoon, she was drinking all the apple juice she could get her hands on, stealing Daddy's slushies, and watching Enchanted.  She likes to hold his hand, and still freezes up when strangers enter the room.  She's talking and moving around in her crib, and told me in no uncertain terms that she had an owie on her head.  Poor little sweet girl.  It's such a relief to be done with the surgery, and have her awake and alert again.  It is so much better than the last time!

They said she could be going home as soon as Saturday.  Wow.  A huge thanks goes out to Dr. Riva-Cambrin and all the wonderful people at Primary Children's Medical Center who put our little girl back together again today.

Surgery Again

As you walk into the section of the hospital that deals with brain injuries, you see a big, fun quilt on the wall.  Its colorful panels depict various fairy tales, drawn by elementary school children.  Ironically, a great portion of the pictures are carefully drawn depictions of the head-injury icon, Humpty-Dumpty.

Today, all of Primary Children's horses and all their good men (and women) are putting our Angelee back together again.  She's in surgery right now, and has been for the last three hours.  They said it would be between two and four hours, so she could be coming out any time now.  I'll pass the time in the waiting room by posting cute pictures of my baby girl, and trying to avoid the doughnut cart (darn!).

Here she is just before surgery, looking at the fish in the giant tank.

Daddy made a glove-balloon in the waiting room yesterday.  What fun!

A rare time of catching a laugh before she ducked her head and ran away.  :-)

Signing "crackers" - she was hungry!

Angelee in her pretty Sunday dress, before we ate tacos for dinner

Wednesday, October 27, 2010

Back to the Hospital

We went up to the neurosurgeon today to see about getting Angelee's bone flap put back in.  He said everything looked very good, and asked, "So when do you want to have the next surgery?"  He seems to think it's not too big of a deal.

To make a long story (including waiting an hour and a half in the exam room) short...

We are going to the hospital tomorrow.  First thing.  As in, we need to leave the house at 5 am.  

And we should be coming home by Sunday.  Dust off your prayers and send some good hopes up to Heaven that it really will be that short.  I'm worried that something will go wrong, and I'm trying not to think about that.  Instead, I'll feed the babies and finish sewing the Halloween costumes and try to get Angelee's jammies on and fix lunches for tomorrow and pack the diaper bag and and and...  I need to go to bed.

Monday, October 25, 2010


We almost named her Angelique.  Trent loved the name.  Mais oui!  It was French, after all.  I wasn't wild about it; something wasn't quite right.  We compromised by using the original root Angel and adding Lee, named after Gramma.  I'm afraid she may grow up thinking her name is something different altogether, though, because it's what we call her more and more:  Angelino.  I know, it changes both her nationality and her gender.  But it happens that way so often.

"Angelee!  No!  Don't lay on the baby!  Angelee!  No!  Stay in the house.  Angelee!  No!  Don't play on the stairs - you might fall down go boom.  Angelee!  No!  Don't climb up the bookshelves.  Stay down off the counter.  Oh, that cake was for dinner.  Don't jump off the coffee table.  You're gagging the baby with your finger in his mouth.  Angelee!  No!  Angelee!  No!  Angeleeno!  Angelino!"

Here is one "Angelino" I managed to record.  Things got too quiet for just a moment as I was winding the day down.  The babies were in bed, Angelee was in her pajamas - and disappeared.  I think the rest of the story is self-explanatory:

Pretty smug about that one, are we?

Thursday, October 21, 2010

Cute Little Pumpkin

Just wanted to share our little cutie and her party with the pumpkins.  She found these fun decorations as we were leaving Primary Children's Medical Center yesterday.  They had these all lined up along the flowerbeds.  What fun they are there!

She loves the flowers we have been making to stick on her helmet with velcro dots.

 Just look at those big blue eyes!  Gorgeous!

 I'll have this one, and this one...  
(Do you like the foam heart stickers we stuck on her hat?  She loves them!)

What a cute little pumpkin!

Visiting the Rehab Doctor

We went back up to the hospital yesterday.  Angelee had a follow-up appointment with the rehab doctors - but we weren't sure who or where.  We wandered all around the hospital for a while until some nice people helped us to find our way.  It was nice to see some of the people we know, and to see that Angelee is not nervous or afraid of the hospital.  That's a good thing to know as we get ready to go back the next time.

To make a long visit short, it seems that Angelee is functioning very well.  Duh.  But the nice doctor can see evidences of brain injury in her neurological reflexes.  She is still more moody, and more impulsive than she was before.  Who knows how much more will come out in the future?  He said that sometimes you don't really see problems until the child starts school.  We will be following up with the doctor every few months for a while.

Main point: the doctor was very impressed, but cautioned that other problems may surface later.  We are happy.

Angelee had a great time playing with the balls in the therapy room
while we tried to figure out where we needed to be.

Love those slushies!

Monday, October 18, 2010

To Sleep, Perchance to Dream

I don't know any parents who don't wish something was different with the way their kids sleep - go to bed earlier, get up earlier, get up independently, sleep through the night...  Yes, yes, yes, and yes.

We actually got all the older boys to bed at a reasonable hour last night.  That was a miracle after the late nights of the weekend, and oh, so exciting to think of getting enough sleep!  I love my bed.

I got the twins diapered and into their pajamas; Trent took care of Angelee.  I nursed the babies, laying them quietly down in bed.  Trent got a bottle of warm milk (a concession we'll quit after everything settles down) ready for the girl.  I brushed my teeth; Angelee ran up and down the hall.  Trent got ready for bed; one baby started to cry.  We gave the baby a pacifier (also a concession), and Angelee grabbed my car keys, said, "Seeya!" and darted out of the room.  Trent brought her back into the bedroom, locked the door, and dimmed the lights.  We arranged the pillows on the bed so when we take off her helmet off for the night she can't hit her head on the headboard.  The other baby woke up and started to cry.  Trent took Angelee's helmet off and snuggled into bed with her.  I nursed the baby back to sleep again, then snuck into the bathroom.  I came out to a dark, quiet room... and a perky, "Hello, Mama!"  And then baby whimpering.  He wasn't hungry - he was awake and wanted to play.  I pulled him into bed with us and held him while trying to keep Angelee from crawling over him.  Trent spoke calmingly and soothingly.  Angelee wiggling around, smacked my shoulder with her head.  "Uh-oh," she said in a worried voice.  "Boo boo?" and then she kissed my shoulder better.  

An hour and a half later, Angelee FINALLY fell asleep, with her head on her little pillow, one leg draped across Daddy's ribs and the other foot on Mama's hip.  She looked so peaceful, breathing gently, but I knew the night wasn't over yet.  We would still have two rounds of trying to keep Angelee in bed while Mama gets up to feed babies, a dozen times of putting her head back on the pillow because there isn't enough room in the bed when she tries to sleep sideways, and a more than a score of kicks.  Trent and I fall asleep like parentheses around our little angel, only our feet touching at the bottom of the bed.  It will be nice when we get our bed back, but she's so worth it!

Sunday, October 10, 2010

First Physical Therapy

Boy, I get behind in updating what is going on!

Angelee had her first real out-of-hospital physical therapy session this week.  Somehow there was a miscommunication about her abilities, and the therapist thought Angelee was not yet walking.  Angelee not only walked for the nice therapist, but ran!  After watching Angelee for a few minutes, the therapist scribbled away at her notes and happily told us that Angelee didn't need physical therapy anymore.  She has graduated before we really got going.  Way to go, girl!

Did You Hear the One About...?

Snippets of Angelee stories:

Angelee's bark came back!  Her dog has a higher "arf" than any tiny purse dog I've ever heard.  It used to be borderline annoying, but we love hearing it again.

After dinner, the boys have to clean up dinner.  They usually goof around in the kitchen some (are they boys?) and have to be reminded what they ought to be doing.  Maybe I've done too much nagging, though.  Now when dinner is over, Angelee will sit in her high chair throne, survey the serfs, and command, "Work!"

I turned on the TV for a few minutes to keep Angelee's attention while I was nursing the twins.  We don't watch much TV, which makes it all the more interesting.  After a fascinating segment on making homemade pasta (don't think I have time this week...), I turned off the tube.  Angelee's blue eyes widened and she turned to me in horror, "Oh no!"  She was really worried about what happened to the nice cooking lady in the black box.

It was late at night, I was trying to read my scriptures just a little bit before I went to bed, and I was tired.  Angelee was tired too, but for some known-only-to-them reason, toddlers often get more wired when they are tired.  So she was bouncing on the bed, playing with the covers, flipping the lamps on and off, and making me wonder if I didn't need to put her helmet back on.  I started reading out loud, with exaggerated inflection to get her attention.  "AND!  It came... to PASS!"  I read, hoping to get through at least a few verses.  I'm reading Isaiah - maybe this would help me to get through it, too.  She settled right down and listened intently.  "And now... BEHOLD!"  Her big eyes were fastened on the book.  After a moment, however, her head snapped up.
    "What?" she shrieked.  It was so sincere, so loud, so unexpected that I burst out laughing.  After wiping my eyes, I started reading again.  "Awake AWAKE!  Stand up... O Jeru..SALEM!"  I got through a verse or two before she cut in again.
     "Oh," she said, like she finally understood something she had been puzzled about for a long time.  "Ohhh."  And that's how we read that night.  Dramatic scripture readings are most interesting when punctuated by "What??" and "Oh."

The boys are very surprised, and perhaps a little bit embarrassed, that I can't do a sit-up.  Hey, you try having your belly stretched out by nine months of twins (not to mention all the other babies), and then try to pretend you have muscle tone there!  Abs of steel?  Not me.  More like abs of Jello ("bowl full of jelly" works very well for Santa, and see how popular he is?)
     I thought I might try to get back into a more healthy routine, and get going with the exercises I had just started before Angelee's accident, now that things are calming down a bit.  So I said to Angelee one morning, "Do you think Mama should get back to her exercising?"  I was getting down on the floor to do some crunches, but she beat me to it.  She laid down on her back, bent her knees, extended her little arms toward her feet, and said with a very labored voice, "Eighteen!  Eighteen!"  Then she flopped back, spread-eagled, and exclaimed, "Whew!"  Just like Mama.  How embarrassing!  (For the record, I can do more than eighteen crunches in a row now.  Really.)

A Few Good Men

Angelee has been nervous at all the strange men in our house.  They came with strange tools and strange smells, and they all smiled at her.  She curiously wanted to see what they were doing in our entryway, but shyly ducked away when she caught them looking at her.

These good men came over to replace the railing around our stairs.  It isn't up to code, and it's dangerous for little children.  It isn't high enough, the spaces between the slats was wide enough for Angelee to get her body through, and there was room enough between the bottom of the railing and the floor for a child to slip through.  I had nightmares of Angelee dangling from her helmet over the stairs. <shudder>  Furthermore, it wasn't structured so we could put a gate at the top of the stairs.

After much measuring, thinking, and weighing of options, we decided to rip it out and replace it with a solid half-wall.  I feel so paranoid about Angelee taking another fall!  The sooner it could be done, the better.  Some wonderfully energetic and skilled men from our church came over on Wednesday and pulled out the old railing, framed in the new half-wall, and even sheetrocked it in one evening!  I am amazed, and grateful.  The good people around us have been some of our best blessings.


Angelee and I went on a little road trip the other day to the helmet place.  When she first got her helmet at the hospital, it was so tight I was afraid it would squish her brain going on.  We did have to tug a bit to get it on, and then a snap under her chin meant it would not fall off.  I was afraid she would balk at wearing the thing - it would drive me crazy!  But the helmet, to her, meant freedom.  It she was wearing the helmet, she could get out of bed.  If she was wearing the helmet, she could walk around a little bit.  If she was wearing the helmet, maybe Daddy would take her for a ride in the wagon.  So she wore it without struggle, and we called it a "hat" because she loves hats.

Her once swollen head (no big-headed jokes here!) is back to a normal size, and her "hat" has gotten loose.  It slips down over her eyes, or cocks over to one side.  Usually it falls over her right eye, leaving the left side of the helmet high and not covering the thin but tough skin over her unprotected brain.  It worries me.  Also, Angelee's chin is getting a bit of a rash from the straps we have had to cinch way in to keep her hat on.  Time for a new helmet, I thought.

So that's why Angelee and I were in the car, driving and driving.  I spent the first half of the trip in deep thought, trying to sort out some of the things that have been plaguing me.  After a while, I pulled out of my reverie and remembered that I had a sweet little passenger.  We talked for a while, her pointing to things out the window and me trying to guess, without turning around and taking my eyes off the road, what it was she was looking at.  She likes seeing cars and trees.  She loves to see a dog in a truck.  She gets airplanes and helicopters mixed up, but likes both.

At our appointment, we found out that the next smaller size of helmet was too small for Angelee.  They replaced and adjusted the padding in her helmet, and now it would stay put.  I bet our insurance company is glad they don't have to pay for another $300 helmet!  So if this is the one we will keep, we can put stickers on it!  We left the office, Angelee giggling because she kept going the wrong way on purpose to make me chase her.  "Siyee (silly) Mama!" she kept saying.

We sang songs all the way home.  We sang "Popcorn Popping" and "The La La Song" ("Sing," by the Carpenters), "Itsy Bitsy Spider," and her current favorite, "O-I-O-I," also known as "Old MacDonald."  She loves making the animal sounds for a cat, horse, pig, cow, bird, sheep, fish, and bear.  She has a block with the dog, though, and can't tell us what it says.  We miss her high-pitched "arf!"  She sings along when I do the "E-I-E-I-O" part: "O-I-O-I".  I laugh and she loves it.  I love it too, and keep singing.  My voice was hoarse for a while.

Friday, October 1, 2010

Our (not) New (not) Little (not) Red Wagon

Angelee so loved going for rides in the big red wagons at the hospital that we thought we would get her one once we got home.  Turns out that the price is a bit steep.  I was hunting through the online classifieds and I found a used yard wagon.  Score!  It's not as cute, but it is bigger (fits three kids easily), more rugged (important at our house), has a longer handle (great for my poor back), and cheaper (hooray!).  And it hooks up to an ATV, but I am not ready to tell the big boys that.  Daddy padded it well with pillows and blankets and we went for a walk to try it out this evening.  Angelee told us it was "Fun!  Fun!"  She and the babies loved it.  I may have to rig up a seat belt for her, though.
More cute pictures...
Reading books with Grandma.  Grandma has more patience for doing this by the hour than Mom does.  (Thanks, Grandma!)

And playing ball with her cousin at the Boy Scout Eagle Court of Honor.  (Way to go, new Eagle-brother!)  We tied a bow onto Angelee's helmet.  At first it was cute, but it fell apart, got into her eyes, and ended up looking like the plume on a Prussian battle helmet.  Oh well.  :-)

So What's Up?

Ummm... I think I haven't been posting as much as I was before...  maybe?  Since we've had Angelee home, she consumes my every moment.  No down time.  As a result, I've had a lot of people wondering how she is doing now.

Well, let me tell ya.  She's just about a normal toddler.  She jumps on the bed.  She leads the music in church.  She laughs at funny faces.  She climbs on the couch.  She pitches a fit when you take something away from her.  She hates to be left.  She loves going "bye bye."  She gets grouchy when she's tired.  She likes to eat.  She gets into everything.  She mooches my ice cream.  She likes to look at picture books.  She gives great wet kisses.  She talks a lot, but it's not always understandable.  In other words, she's a fairly normal two-year-old.

On the other hand, she still has to wear her exoskeleton (the helmet).  Her right hand still doesn't work as well as the left.  She doesn't walk exactly straight.  Her vocabulary is only about 1/3 what it used to be.  We have to be so careful she doesn't fall.  Her words aren't as clear now.  But we've got her sweet little personality back.  The rest is just details.  I'm so grateful.

Thursday, September 30, 2010


So I finally fell apart.  My mom said she was wondering how long it would take me to crack.  When we started this adventure, I flipped into crisis autopilot mode.  I get up and deal with what is in front of me, crash in bed, and do it again the next day.  I don't worry too much about feeling - there is too much to do.  It's only after I give a talk in front of an audience that I get hand-clammy nervous.  It's after I pull the child out of the street that I feel panicky.  It's after we come home from the hospital that I feel sad and discouraged.

There is a lot of "overwhelmed" in there.  In the hospital, I could depend on the nurses and doctors to be making the right decisions for my little girl, and caring for her properly.  At home, I'm it.  It's my job to make sure she gets enough rest.  It's my job to make sure she gets proper nutrition.  It's my job to make she she stays hydrated.  It's my job to make sure her incision heals correctly, that she wears her helmet, that she doesn't fall, that she doesn't pick at her scabs, that she gets good practice moving correctly, that she doesn't get overstimulated... that she stays safe and healthy and happy.  Oh, and I should be taking good care of my other children, and my sweet husband, and laundry and meals and cleaning.  And preserving the produce from the garden!  And chaperoning the field trip!  And parent-teacher conference!  And getting the boys to scouts on time!  And I might need to sleep too!  And I should probably be scrapbooking something.  And so I fell apart.

A person all wrapped up in their own problems makes a mighty small package.  I got all worried about what I needed to do, and how was I going to survive, and what I'm feeling and me, me, me.  I forgot for a moment that the neighbor ladies were bringing in meals, the boys keep the house tidy, the neighbor guys were taking care of the yard, and my sisters-in-law and the grandmas were helping me with the little ones during the day.  And I forgot for a moment that I really didn't need to do everything.

I feel bad, sometimes, that I haven't been able to do all the chores I normally do.  I hate asking for help to do things I know I can do.  I can do the laundry.  I mean, I know how.  It really doesn't take that long, and it's not difficult.  But it's so nice when someone comes over and folds the pile of clean laundry that has been collecting dust on the couch.  Or when someone takes our icky Mount Washmore pile away and brings back a basket full of neatly-folded, sweet-smelling clothes.  Or when someone mucks out the stinky bathroom I've been meaning to clean, but just haven't gotten around to.

It took a while, and a very patient husband, to pull me out of my pity party.  I'm feeling better now.  I can keep going now.  I think we all fall apart sometimes, don't we?  I guess the trick is to remember, and be thankful for, all the good things we do have.  I would never make it without the help I have from Christ.  I need the hope He gives.  I need the love from my family.  I need the help from our good neighbor friends.  I'm so glad I have it.  And one day, I want to be the giver!

Friday, September 24, 2010


Yup, we now have triplets - three babies born over a twenty-month stretch.  We get them all up in the morning about the same time, get three clean outfits on, change three diapers in a row, feed three little mouths, play three games of "patty cake," and put them in three swings.  It's too bad they don't all sleep at the same time, though.  One of our triplets is much bigger than the other two.  She gets into mischief more, and is more demanding.  But they are all really snuggly, and we love them!

Thursday, September 23, 2010

The New Normal

The early childhood intervention folks came over to evaluate Angelee for their program.  They asked me questions about her abilities.  "Yes," I crowed, "she can say about 12 words now."  I thought that was pretty good for a girl who had only been talking for a couple of days.  And the verdict:  "Your daughter is in the fifth percentile for her age."  Fifth?  Fifth?!?  As in, "95 percent of two-year-olds are better than my girl?"  Sigh.  That's a harsh bit of reality. It's good that she can get into the program, though.

Angelee is quieter than she used to be.  She moves around more tentatively.  We are all more protective of her.  Our nights have been awful, as she wakes up screaming for no apparent reason.  Her words aren't always understandable.  She has a hard time getting to sleep.

The other night, we tried for two hours to get her to go to bed.  She can sleep without her helmet, but when we take it off, I get very anxious about what she does.  We lay her down in bed and she holds still, her dark lashes scrunched up in complete sleep-concentration.  We wait quietly to hear her breaths even out so we know she's asleep.  After a moment, her little head pops up again.  "Hi!" she bubbles, her enthusiasm anything but sleepy.  She's too cute to get upset with.

Happy Unhappy Anniversary

A post from Wednesday:
Two weeks ago today Angelee fell.  How our lives have changed in the last two weeks!  I really don't know that we love our little angel more than we did before; we've always loved her an awful lot.  But our love has changed.  It's deeper, more precious, more tender.  And it's the same for all of our kids.  I appreciate their presence in my heart more intensely as I am more keenly aware, again, of the fragility of life.  It's not quite right that it often takes something sad to make us realize how happy we really are.  I know that my sons would be embarrassed at a big old mushy public display of mother-love  (aw, didja hafta, Mom?), so I'll just say that I love my girl.  Lots.  I love my boys.  Lots and lots.

My other happysad for today is a birthday.  Thank you, Jeanne and Dallas, for bringing your first son into the world a number of years ago.  He became the husband of my youth, the father of my first five boys.  He, like Angelee, suffered from brain injuries - his caused by the brain tumors that eventually ended his life.  Through him I first learned of the sweetness of love, and the heartache of loss.  But because we have once loved, we are forever more able to love.

Tuesday, September 21, 2010


Our yard looked like a disturbed anthill this evening.  A bunch of neighbors and friends from our church came over to help us tidy the place up.  No, they didn't help us do it - that would imply we were out there working with them.  They just came over and did the work for us.  I am so grateful, and feeling somewhat chagrined that we can't do it ourselves (quit reading this, Bishop!).  Among other things, they removed a large shrubbery that had been hiding our front door.  Now maybe we'll feel more social.  :-)

Thanks so much!  I wish we didn't need so much assistance, but I deeply appreciate the meals, the yardwork help, the housecleaning, the contributions, the prayers, the kind offers, and the hopeful thoughts.  One day, I hope I can be as good on the giving end as you have been.  God bless you!

Baby in Bed?

I'm trying to do some work on the computer, but Angelee keeps pushing the buttons.  First with her fingers, then with her feet, now grabbing the cord of my laptop and wrapping it around her chubby little leg.  Now she signs "all done" and pushes the computer off my lab.  She looks at the twins' empty bouncer chairs and clearly asks, with a worried face, "Baby?" and signs "bed?"  Yes, my darling, the babies are in bed, just like you should be.  She is a delightful distraction.

Angelee is acting like a two year old.  She is impetuous (I want Mama... no Daddy!) and impatient (pick me up now!).  She is cranky when she doesn't sleep (a terrible night, then no nap until 5 pm - ack), and opinionated about what she eats (I'll take the potato chips with my cupcake, please).  I love it!  I am also completely paranoid.  I want to wrap my precious little girl in bubble wrap, cover every hard surface with foam, and follow her around with a pillow to land on should she stumble.  She is still a little bit wobbly when she walks, and it makes me anxious.  I'll be a nervous wreck before they ever have a chance to put her bone flap back in.  I hate her helmet - it's ugly and it makes her hair damp with sweat and I can't kiss her sweet head.  And I love her helmet - it keeps my Angelee safe and alive.

She is developing some confidence.  She goes from sitting to standing more fluidly.  She is using her right hand more.  She is babbling and making up little songs.  She is saying more words.  She is using more signs.  Who knows what deficits she will have.  But for now, her mama and daddy and brothers are in love with having Angelee home again.

Monday, September 20, 2010

Miracle of Miracles

With so many miracles that we have been seeing, I wondered how many more we had.  Shouldn't we run out or hit our quota at some point?  Surely her progress will slow down and we will work on improving the skills we have, instead of getting new (or regaining old) skills we thought were beyond our reach.  Shows how much I know.

Today Angelee passed her swallowing test.  She proved to the speech pathologists that she could drink thin liquids without sending them into her lungs, and that she could eat solid food.  She hadn't been chewing before, but I guess she remembered.  We were all happy.  No special pureed or thickened liquids diet!  She is now on the "toddler diet:"  small bites, chew thoroughly, don't overload mouth, no choking food (whole grapes, hot dogs, lots of peanut butter), etc.

Her hearing test didn't go as well.  Her right ear passed but her left ear didn't.  We will have to have more follow-up tests with an audiologist later.

Trent was bouncing her on the bed and she started saying, "ahhhh."  With the bounce it was "ah-ah-ah-ah-ah," and made her laugh.  They did that several times, laughing at each other - and something clicked for Angelee.  She could make sounds!  It wasn't long before she was making the "uh" sound when toddlers are asking for something,or a surprised noise at something new.  Within an hour or two, she looked at a magazine picture, signed "baby," and slowly but distinctly said, "ba-by."  The dam broke.  From there she is on to "meow," "Da-da," "ow," "dog," and a dozen other words she knew.  Her favorite word right now is "on," and she says it over and over, just to hear herself talk.  She is also playing with the pitch of her voice, like a new baby does.  Wow.  I didn't know if she would ever talk again.

And saving the best for last - our little girl came home today!  She has to wear her helmet all the time except for sleeping, since they won't be putting the skull pieces back in for several more weeks, but she's home!  I am beside myself with happiness.  It will be nice to live with my sweet husband again, too.  I'm so excited, and scared spitless at the same time.  I'm not sure how we will care for her, but I love our family being together again!

Sunday, September 19, 2010

Not in the Schedule

When we arrived, rushed and scared, chasing the helicopter to Primary Children's Medical Center, we had no idea what to expect.  Our baby girl was critically injured, and they weren't sure she would make it through.  Our lives were turned around the instant she went through the window.  We didn't know what would happen next.  This was not on the schedule.  We would have cancelled it even if it was.

We begged someone to give us an idea of how long she would be here, and were stunned when a nurse said kindly, "Plan on being here for the rest of the month at least."  The month grew to two when we were told that her skull flap would not be put back in for six to eight weeks, and we would likely stay in the hospital that whole time.  Family and neighbors mobilized as we started making plans for a long-term crisis.

And even when she does get to go home, it will be all different, we thought, because she isn't moving very well - especially not that right side.

Guess what she did today?  She walked by herself.  This is not on the schedule, but I don't care!

Happy List From PICU

Here is the other old writing I found from day 2 or 3.

A medical student came into Angelee's pediatric ICU room and asked if there was anything she could do for us.  I told her that I needed to make a happy list.  She was confused until I explained that I needed to record all of the things that had gone right, to help me cope when things looked bleak.  She got Angelee's records and helped me compile these encouraging thoughts:

Things that have gone right, in no particular order

Anglee was extubated in only 24 hours.  She is breathing well on her own, quicker than they thought she would.  Her head drain was removed soon after surgery.  She is opening her (one unswollen) eye, and looking around.  She is tracking with her eyes.  She finally looked over to the right (she was first staring straight ahead, then only looking to the left).  She can hear voices.  She understands sounds and recognizes familiar voices.  She is moving all her limbs.  Her lungs sound wonderful and clear.  Her heartbeat is strong and regular.  She responds to touch and pain.  Her sodium levels are self-regulating.  She is able to take in calories and protein.  Her labs all look good.

She likes her blankie and wants it close, showing higher thinking.  She is not in lots if pain with minimal morphine.  She pulls her socks off.  She resists someone else moving her.  All her pulses are strong and even, showing no damage from the IV lines.  She has good urine output.  There are no signs of infection in her sutures.

Her L5 fractured vertebrae is just fine.  She had no other major complications.  She had no organ injuries, and no other broken bones.  Her skull broke into pieces, which allowed the brain to swell out instead of down into the brain stem.  Trent saw her go out the window, so she could get to the hospital within minutes.

The medical student paused here, and said that Angelee was responsive to stimuli and pain even at her arrival on the helicopter.  The hospital staff was happily surprised to see this, as it is unusual and they were expecting something worse.  Angelee has spontaneous movement, meaning she is doing things on purpose.  She is responding to more stimuli, becoming a bit more alert.  The medical student said Angelee was making wonderful progress, faster than they thought she would, and that she was one of the best neuro cases they have had.

A good, encouraging list to be sure.


I found some writings that had never been posted, so I'll get them up now.  This one is from day 3.

I was tidying up in the living room when I found a tiny red hair claw clip.  The world stopped as I realized she had been wearing these in her hair when she fell.  Angelee and I had just barely gotten to the point where 1) she would hold still while I did her hair, and 2) I was figuring out what to do with her hair.  She is my first girl, and I've been a little bit clueless on girl hairstyles.  So I bought her a pile of clips for her birthday.  Wednesday morning, she held nice and still while I brushed her soft hair, and pulled it back with a little clip on each side.  Now I was holding one of those clips, with a bend mark on one side, and missing teeth on the other side.  It had obviously been hit in the fall.  Oh, my heart aches over and over again.

The boys found the clip on the concrete patio underneath The Window.  It was right there next to the window screen still on the ground.  I haven't been able to go get the screen to reinstall it.  I can hardly look out the windows, and I can't open them either.  There was a little yellow ball out there too.  She must have had it in her hand.

I get the same aching feeling when I see her empty car seat in the van, when I find her favorite denim hat in the corner, when I clean around her box of board books.  I closed the door to her room because it was too hard to look in and not see her there.  One boy opened it back up - the sight of her things comforted him - so I've left it open now.  Open, and empty.  I don't know whether it is worse to find these little touches of Angelee around the house, or to not find them anymore.  Either way, it aches.

Saturday, September 18, 2010

First Haircut

Angelee has had really yucky hair.  Not as in "a bad hair day," but as in "a bad hair two weeks" and then some.  It is dirty and greasy and matted to her head.  The ointment they put on her stitches to keep them clean is thick and oily.  Angelee rubs the shorn part of her head and spreads the stuff all over in her hair.  Her long hair gets stuck on the ends of the stitches, and in any tape nearby.  The hair on the back of her head is fuzzed from tossing and turning while she lies in bed.  Portions are so snarled up they have nearly felted together.  I've tried several times to wash her hair, but the improvement is minimal.  Oh yeah, and she only has hair on half her head.

Our options are: 1) ignore it.  2) let it go to dreadlocks.  3) shave it off so both sides are the same.

1) I can't.  I love combing my little girl's silky fine locks.  I only have one girl, anyway!
2) Ugh.  Not for a little blond girl.
3) I can't quite bear the thought of her being all bald.

How about a compromise - a haircut, but not a shave.  I put her hair in a sweet little ponytail, cried, and snipped the curl off.  Then I composed myself and gave her a cute little pixie haircut.  It's much more manageable, it doesn't get in the way, she doesn't look like a boy, and we cut off the parts that were matted beyond repair.  And here's the best part - it's still long enough on top that we can totally do a comb-over, like an insecure balding guy does!  We'll post pictures.

Going for a Walk

When the therapists came to get Angelee today, Trent let them take her down to the gym without him.  We have been working on getting her to trust other people again.  There are some very talented people who work here, and it is fun to see how much good they do.  When she was done, they let her come back on her own two feet.  She was walking!  She is very wobbly, and you have to hold her hand (she thinks she can move better than she can), but she can walk short distances.  I am astounded.

Angelee is becoming much more alert now.  She still needs to rest a lot, but her vibrant little personality is showing up more and more.  I was sitting on the foot of her bed when I got hit with a pillow.  I suspected Trent, but Miss Angelee was sitting there with a mischievous smile on her face.  When I asked if she had thrown a pillow at me, she cocked back her arm and let another one fly.  She also delights in throwing toys on the floor.  What a fun game!  It warms my heart to see her smile again.

The Support Network

This is not my first time dealing with medical crisis.  My first husband was in and out of hospitals and treatment facilities for seven years while we battled brain cancer.  I don't know anyone who doesn't have a good-sized crisis or two to their name (if you haven't yet, just wait.)  :-) .  Death, wayward children, divorce, lost employment, illness, relationships issues...they all can break your heart.  On the other hand, surviving them can make us stronger, more resilient, more capable of dealing with the next thing life throws our way.  You find out how much you have in reserves when you have to use them.  You also find out who your real friends are.

We've had offers for cleaning, doing our yard work, child care, chauffeur service, meals, emotional support, and lots of others.  Thank you all so much!  I know you can't take away this terrible situation, but it is so comforting to know that there is a safety net strung out underneath us while we wobble along this tightrope.

So what do you do when a friend has a crisis?  I've gotten a lot of "What can we do?"  So here is a short list for crises in general.  For our particular situation, I think we're covered for now (a thousand thanks!).

-bring food.  It's comforting.  It's wonderful not to have to worry about meal planning, grocery shopping, and meal preparation.  Also good are snack baskets, sandwiches and portable food to take to the hospital so you don't have to eat in the cafeteria, and a frozen dinner or a quick-fix meal to have on hand.

-listen.  We all need to talk sometimes.  It's ok to just sit and be quiet sometimes.  Don't demand that I spill my guts, but don't come to me crying and distraught so I have to comfort you, either.

-give specific suggestions.  I can deal much better with, "Can I take your car down and fill up the tank?" or, "Do you need me to get anything at the grocery store for you?" than "Let me know if I can do anything."  You might even help me remember that I do have a need there.

-sent supportive messages.  Phone calls are nice, but I'm often too busy to be able to pick up, and I haven't the time to talk to everyone.  I love to get happy comments on this blog, or notes in my email (Trent hasn't had a moment to check his, though).  A personal note gets posted on the bulletin board in Angelee's hospital room.  The hospital will bring in messages from their website, or even just a phoned-in message.  It's nice to know people are thinking of us.

-don't worry about saying the wrong thing.  Don't think you have all the right words, but don't worry too much about having to be eloquent.

-visit when appropriate.  Call to make sure it's ok first.

-be understanding.  If I don't return your call, I don't hate you.  If I don't answer, I'm not ignoring you.  If I don't talk long, I'm not trying to get rid of you permanently.  If I say no, I'm not trying to be mean.  I just can only concentrate on the essentials right now.

-establish a contact person.  It's nice to only have to tell the story once, and then everyone else can contact that person to get information.  Saves a lot of time and emotion.

Things to NOT do:

-stay for a long time.  We all tire out quickly.
-visit with a big group.  It gets loud and crazy and way tiring.
-visit if you are sick.  Duh.
-ignore that there is a problem.
-be negative.  We need to be lifted, not dragged down.
-make demands.  Even if I could do something two days ago, that doesn't mean I can today.
-think that my suggestions work for everyone.  (my disclaimer)  IF you have a question about what is appropriate, ASK!

I had a list of wonderful suggestions from the Young Widow's Group, but I can't find them now, or I would post that, too (anyone have Lorna's email address?).  So here is my best bit of advice:

Be a good friend NOW, before the crisis.  Good friends can sometimes dispel the problem in the first place.  Or, when a situation does come up, we are much more apt to turn to folks we already know care about us.  Hug your kids.  Tell your family you love them.

Thank you, thank you, to all of the beautiful souls who have helped in a hundred big and little ways.  You lift my spirits as you lift my burdens!

Friday, September 17, 2010

Is it True?

Trent called me at the hospital this afternoon, saying excitedly, "Is it true?"  Ummm...  I'm lost.  "Is it true that they are sending Angelee home today?"   Ummm... no.  She can't eat solid foods.  She can't drink thin liquids (water, juice, milk).  She moves slowly and sometimes shakily.  She doesn't always hold up her head well.  She doesn't talk.  Her right side doesn't work very well.  She can hardly walk, even with support.  Her bowels aren't moving spontaneously.  She has no skull on half of her head.  She is very irritable, and isn't sleeping well.  No, I don't think it would be a good idea for her to come home at this point.  Wouldn't it be nice if she were well enough, though?

They're Watching

Angelee is starting to climb out of bed.  She crawls around in her bed quite well, retrieving a book that is just out of reach, or the stuffed dog she tossed.  I'm learning not to put things just out of her reach on a table - she goes after them!  She tries to climb down when I leave her bedside. She's getting more mobile as her body heals, but her mind hasn't caught up.  She doesn't have the rational thought abilities to make good movement choices.  Am I actually saying that about a 2-year-old?  That's what got us into this in the first place!

I have to watch her very carefully.  The nurses station someone to watch her during the night when I'm asleep.  They are very unobtrusive, and I appreciate their diligence in keeping Angelee safe - but have you ever slept while someone is watching you?  It's a little odd.  :-)


I spent the day in the hospital yesterday, like normal, but sent Trent home to get some rest.  Thanks, Kalene, for helping with the babies in the evening!  I stayed here overnight with Angelee and the twins.  They all three took turns waking up. The hospital is not a good place to rest.  I'm here on my own today, and they just now are falling asleep for a nap.  I may sleep tooo  oo o ...

Wednesday, September 15, 2010

I Love to (Hear Her) Laugh

She laughed!  Not the little tiny angel smile I am so fond of, or even the big toothy grin she does for the babies that makes her daddy's heart melt.  No, she chuckled a little, and then outright laughed!  Oh, it was a beautiful sound.  And if anyone is wondering what was so funny for our little girl, it was the funny cat videos on YouTube.  I wish I knew how to post one here.  She loved it!

(edited to add: I figured out how to do the YouTube thing.  This is her favorite cat video.  I think we've watched it waaaay too many times now - but it always makes her laugh!)


Wheat thins dipped into a cup of vanilla pudding.  Also a cup of yogurt over homemade granola.  Yum.  But this is not a post about my nutrition, although it could use some improving.  :-)

Angelee likes to eat chocolate pudding, yogurt, and applesauce.  Yesterday she ate a pureed banana, and today she tried the pureed pancakes (?).  Evidently they were ok, because she ate them.  She has been eating some, but not drinking.  Proper hydration is so important to being healthy.  If she doesn't drink enough, they have to keep her feeding tube in to keep liquids going in.  She wasn't sucking hard enough to get anything through a straw, and she wasn't interested in a sippy cup.  But this morning, she chugged 6 ounces from a bottle.  She doesn't want the bottle this afternoon, but hopefully she'll start getting more by mouth soon.

Tuesday, September 14, 2010

Happy Day

When I lumbered in Angelee's room this morning, hauling my bag, the diaper bag, food for lunch, the things Trent requested I bring, the double stroller, and two babies...  Mom, the pack horse...  Anyway, when I came into the room this morning, Angelee was visibly agitated.  She held out her hand to me, so I sat down on the edge of the bed and took her hand.  I hadn't even sat down before Angelee pulled herself up to standing and launched herself at me.  I was amazed as I held her upright body against me.  She calmed down soon in my arms.  My little girl wanted a hug from Mom!

Later, Angelee was sitting in my lap as I was sitting on the bed.  We propped one of the twins up in her bed, and she grinned at him.  He was waving his little fists around, and caught her finger in his fist.  She was alarmed and quickly shook him off.  She was quiet for a moment, then forced her finger back into his fist.  She was playing with her little brother!  We call this our new baby therapy.  Don't anyone steal our great idea before we can patent it.

The baby started to spit up a little, so I said, "Angelee, he's spitting up.  We need a burp cloth."  Her head, although hampered by the neck brace, moved back and forth until she found the burp cloth.  She grabbed it and wiped up her little brother's face.  She responded to speech!  Although I wanted to turn a cartwheel, I waited until Trent came back in the room.  I tried it again for him.  "Angelee, get the burp cloth."  Again, she looked, found it, grabbed it with her good left hand, and wiped up the little guy.  This is something she often did at home, and she remembers it.

Also, she ate a cup of chocolate pudding and a pureed banana.  When I showed her a picture of a banana, she lunged for it.  I said "banana" and signed it, then helped her to repeat the sign.  When I let go of her hands, she made a good attempt to do it by herself.  What a happy day!

Keep Humming

I was able to drive our little car to the hospital today (thanks for getting it registered, Gram & Pop!).  It was nice to not have to drive our big, hulking van on our daily trek to the hospital.  It wasn't until I got on the freeway that I noticed that the windows in the car were down.  They are manual, not electric, so I couldn't reach across to close them safely on the road.  I have been humming hymns in the morning especially, as a way to calm myself, but with the road noise I couldn't hear myself hum.  I knew I was still humming, because I could occasionally feel the vibration of particular notes, but I couldn't hear it.  Even without the hearing, I felt better humming, so I kept at it.

This is my analogy for the day.  We're working with Angelee, but sometimes we may not see any results.  I believe it is still helping her to get better, so we'll keep at it.

Monday, September 13, 2010

All Over the World

This blog has been up for 5 days, and already we have had close to 2,500 hits - from 5 different countries.  Wow!  I had no idea that so many people would be interested in our little angel.  Thank you all so much for your support and prayers - we're all pulling for you, Angelee!

Monday, Monday...

Whew!  We started out the day all a mess, didn't we?  Fortunately it did get better as the day went along.  Some days are just like that.  You're doing well, and then... CRASH!  And some days aren't too bad, but they aren't really great, either.  Today was... well, a Monday.

Angelee had a big day today.  She had a swallowing test, which involved barium pudding, barium nectar, barium juice, and an x-ray machine.  Yum.  She is now allowed to eat foods that are pureed, and thickened liquids.  Here we encounter one of those circular problems.  They want her to eat more so she can get good nutrition.  She won't eat because her tummy is full of the stuff they put down her feeding tube.  So lay off the feeding tube so she will get hungry.  Oh, now she isn't eating enough so she needs to have food put down the tube again.  And now she's not hungry because her tummy is full...  We'll find the balance.

She had a CT scan to see if her right eye was injured in the fall.  That checked out just fine - and she was such a good girl to hold so still for the exam!  Daddy carried her there and back, with her lovely brown helmet on.

The neurosurgeons came in to see how she was doing, and were discouraged that she still isn't responding to words.  They said it would be six to eight weeks before they would put the bone flap back in.  We can expect to be in the hospital all that time - and then longer to recover from that surgery.

The play therapist came in to see how Angelee would do with toys.  She was good about reaching for a toy, pushing buttons to make music play, holding a toy with her right hand, and transferring a toy from her good left hand to her right hand.  I was encouraged by all the things she could do.

Angelee was evaluated for removal of the neck brace, but they decided it would be better to leave it on for now.  That's too bad, because she hates the thing.  I can't say I blame her.  She has figured out how to take it off, though, and does so with some regularity.  You go, girl!

We put her on the floor to see if she would walk.  When her feet hit the floor, she stiffened her legs to stand, but wouldn't move her feet.  We'll try that one again later.


Angelee can smile.  She can look around at things in the room.  She can giggle.  She can respond to a command.  She can move her right arm and leg.  She can grasp things in her right hand.  She can eat soft foods.

But just because she can doesn't mean that she does.  Most of the time, she doesn't.  Most of the time, she lies in bed staring somewhat vacantly.  But the fact that she has done these things means the wires still work in her brain, which is hopeful!

Monsters Under the Bed

I slept well last night.  I had a feeling I needed to get some quiet moments this morning to pray and read - and it's a good thing I did.  When I got to the hospital, Trent was looking pretty ragged.  The neurosurgeon had just been in and indicated it would be six to eight weeks before Angelee's bone flap is put back in.  This trauma is getting longer.  Smiling is difficult.  Possible, yes, but often the smiles are forced through tears.

I had a monster under my bed last night.  He always lives there, but doesn't come out very often.  His name is "What If."  What if I had...  What if Trent had...  What if she didn't...  And then I can either fall apart or beat him back under the bed.  He always lives there, though, and he's bigger than he used to be.  I can't write any more because it's too painful.

Sunday News

We still don't have internet at home, so I couldn't post anything yesterday.  Our router was going bad, but the new one doesn't like us.  Maybe some RSP (Royal Smart Person) can come fix it for us.

I took the boys up to the hospital on Sunday.  The boys didn't want to be away from Angelee at all, so we went to the church services the hospital provides.  I thought I would just take the boys to the short meeting, but Angelee ended up going with us, too.  It was her first outing.  The staff unhooked her, fastened on her helmet, and away we went.  Our 16-year-old was so gentle as he pulled her in the little red wagon.  During the service, I picked her up and rocked her in my arms.  It felt so good to hold my little girl again!  When it was over, her 14-year-old brother rearranged the pillows and blankets in the wagon, and pulled her carefully back to her room.  I am so impressed with how tenderly these big teenage boys treat their beloved little sister.

What else?  She rolled over for the first time, which was exciting because she is showing us that the muscles in her trunk are still working.  We'll have to watch her carefully that she doesn't wiggle herself out of bed.  She smiled for her baby brothers.  She pulled the feeding tube out of her nose - with her right hand this time.  And she gave her daddy a big, toothy grin and a little giggle.  He was so touched to see that our Angelee really was still in there.

We got home early enough that we could get caught up on the laundry, and the boys made caramel popcorn.  They couldn't get enough of it from the wonderful care package we got (thank you Erica, Cindy, and Christy!), so they made more.  And the best part was that we were able to get a decent night's rest.  That makes all the difference.

Sunday, September 12, 2010

Saturday News

I didn't have any internet access yesterday, so I wrote, but wasn't able to post it.  So, a day late, here are my thoughts from yesterday.

Angelee started out today (Saturday) by being the healthiest girl in the Pediatric ICU.  The staff noticed this, so they kicked her out.  She is was moved to a rehabilitation unit this afternoon!  Yay!  I'm also happy because the babies can be in the room with us - as long as they are quiet (they usually are).  I've been stuck in the waiting room with them this whole time in PICU unless someone else came to spell me off.  Fortunately there have been grandmas and grandpas, aunts and uncles coming up to help us.  Thank you!  It will be nice to not have to keep running our of Angelee's room to see if a baby needs to be fed or diapered, though.

When we have asked the doctors about long-term effects, or about a prognosis, they would almost always say, "It depends..."  I know.  It depends of fifty-two thousand possibilities.  But can you give be an idea?  A ballpark range of what could happen?  The best and the worst-case scenarios?  An inkling of what usually occurs in these types of situations?  One doctor finally told us that we are in "phase one" where they are trying to asses everything vital and just keep her alive.  The next phase would be rehabilitation.  I guess we are in "phase two" now.

Angelee had her arterial line taken out of her right hand today.  Now they will measure her blood pressure intermittently with a regular blood pressure cuff.  With that line out, and her IV moved to her left hand, we wondered if she would move her right arm more.  Her right arm and hand are quite swollen, and she hasn't moved them much unless she had to.  Looking at her red, puffy arm, someone asked if her arm could be broken.  If it was, that would explain the lack of movement - and would be better than neurological damage.  Trent, shaking his head, said, "I never thought I would be glad if one of my children has a broken arm!"  She went down for an x-ray, and we'll see.

The speech pathologist came in today.  She was evaluating Angelee's swallow to give her the green light to start eating.  She explained that thick, soft foods were the easiest to swallow, and asked if Angelee would eat yogurt, pudding, or applesauce.  Would she?!  Those are some of her favorite foods!  The pathologist  began with yogurt, since it was cold and would give more sensation to Angelee's mouth.  She held up a peach Yoplait, and while she struggled to open the cup, Angelee started to salivate.  Her one good eye (the other is swollen shut), was wide and locked on the yogurt while she slowly smacked her lips.  Angelee opened up willingly for the first bite, and mulled it around in her mouth for quite a while.  Just when I started wondeing if she really could still swallow, Angelee's jaw stopped working and she looked expectantly at the cup.  The second bite went down much faster, and then she was eating as fast as the yogurt could be spooned into her willing little mouth.  Between bites, her pink tongue licked every last bit off her lips.  We stopped after just an ounce so as not to overwhelm her stomach, but it still left a little girl very happy.

I took all the kids up to see our girl again today.  I have decided it wears me out to have everyone at the hospital, but what else can I do?  I can't stay away from Angelee, so I can't stay home with the boys.  But they want to see their sister, so I have to take them.  Maybe we will figure out some sort of way to work it out.  But by the time we have been at the hospital for a few hours, I am exhausted.  I just wanted to sit and cry - but I can't because I had to drive home.  It's probably a good thing to have to keep going.

Trent called this evening to give us an update.  There was a miscommunication about Angelee's pain medication, and she spent a few miserable hours in increasing pain.  After a quick dose of Lortab, she settled down again - and was sucking her thumb!  Angelee has always been a thumbsucker.  Her favorite "I'm tired or not happy" pose is with both fisted hands in front of her face.  Her left thumb is in her mouth, her right hand holding and stroking her cheeks with her blankie.

And to top off the day, how about a high school dance?  Our oldest went to homecoming tonight.  Guess where their group of four couples ate?  Our house!  And guess who chauffered them to and from the dance?  Me!  Yes, I know, I'm crazy.  But it was fun to see the kids enjoying themselves, and satisfying to watch my boys grow up.  I rather like my teenagers!

Friday, September 10, 2010

Show Me Your Teeth

I am exhausted.  Trying to care for my baby girl, the twinfants, and having all the kids in the hospital wore me right out.  One of the babies is getting fussy, and I worry that I'm making enough milk for him.  The hospital is not a nice place for a family to hang out.

Note to self:  find new Friday date night venue.

Angelee's oldest brother and her grandma were in her room this afternoon.  Her brother was talking to her and said, "Show me your teeth."  This is a little game he would often play with her.  We had not been successful in getting her to follow any verbal commands like "squeeze my finger," or "lift your arms," but she evidently listens to her brother more than she listens to the doctor.  She looked at him and opened her mouth!  Yay!  That means 1) she can hear for sure, and 2) she understood that spoken command.  That's a huge step and we are so excited!