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.

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.

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.

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.

Stitches

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.