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Saturday, June 25, 2011

On a lighter note

In the midst of our medical "storm", which went on to include--besides the seizure-- 5 separate fevers, hacking coughs, croup, pneumonia, a damaged ear canal, and no sleep for Mom, we had a bright spot.  We celebrated my baby girl's first birthday.  I am absolutely c-r-a-z-y about this tiny one, and it's amazing to me that she can still be a complete novelty after a year in our family.  I cannot get enough of her and many times a day she makes my heart almost burst with love for this darling, joyful little baby.

the setting




the tissue paper fluff balls



the cake




the birthday girl


the gifts



the first candle



the carrot-cake-made-with-applesauce-and-no-frosting cupcake (yeah, i'm just a really fun mom)




Besides the sweetest little jabbering-all-day voice that you have EVER heard, she also melts my heart with her 'scrunchy smile'.  I can hardly stand it, it's so cute, and I'm sure that she could use it to get a puppy or American Girl doll someday.  I would say she liked my play table gift.


And some more.


Okay, one more.


Okay, last time.


Okay, seriously.  It's going to be very hard not to spoil this one.

Sunday, June 19, 2011

I'm exhausted on so many levels from this past week.  I can barely keep my eyes open, but I continue to sit in bed beside sleeping J and play the silly bubble breaker game on my phone.  I don't know why, until I figure out that I'm afraid to go to sleep.  The video monitor perched on my night stand is breathing a slow, comforting sound and I can see my girl is fast asleep, hopefully dreaming sweet things.  It's a calming sound, and one I'm afraid to not hear.

Through this ordeal, I've never thought "Why me?"  I understand that things just happen, and it's to our growth or detriment how we handle them.  I have, however, thought "Why her?"  If there's anyone I know that can learn to be like Christ without the mountains of trials that the rest of us require, it would be her.  She's so sweet and good, and it seems utterly unfair for her to pass through this.  The most unfair place in the world?  A children's hospital.  While I love the fact that hurt and sick kids get to have a hospital with starfish on the walls, the fact that kids don't get a 'free pass' through childhood breaks my heart.  On my best day I could walk through a children's hospital and see babies lying so still, and cribs in the ICU and bawl my eyes out.  They haven't even made any life choices that would land them in a place like that, yet they must begin their existence with adversity.  The toddler in the neighboring ICU bed was barely spoken to by parents that briefly visited.  It made me want to scoop her up and love on her.  Kids are so brave, but I wish they didn't have to be.  Of all the injustices in the world, this must be the worst. 

I can see the stress in me.  It plays out in funny ways, but I know it's there.  I couldn't just let Father's Day pass despite our week, so I ran to the mall last night to pick up a few of J's favorite things.  Part of me just wanted to shop.  Shop and shop and shop.  Of course that's a little normal :), but I wanted to shop and buy pretty things, and pretend my life was normal and calm.  A little escape from reality.  My whole body is tense, maybe from feeling like I will be holding my breath for the rest of my life.  We don't know what will happen in the future with Girlie.  All the whys and what happens nexts are answered with a frustrating "We just don't know."

We all went to church today.  We were met with hug after hug after 'we've been think of you and praying for you' after teary squeeze.  Each one melted a little ache away.  We've felt so loved and supported from all our friends and neighbors.  It means so much to receive heartfelt emails and messages. 

Girlie seems to be doing very well.  She doesn't remember any of the actual seizure, which is a huge blessing.  She's as lovely as ever.  J and I don't have much of a defense where she's concerned.  The girl could ask for a puppy and we'd oblige.  I am not kidding.  And I am not a pet person.  She could ask for a stinkin' pony and I'd probably move us out to the country and buy five.  Please don't tell her that, though.  I don't feel like packing. 

Despite everything, though, I somehow feel as if I can't be anything but happy for life now.  Miracles happen.  She's here, and we're all together at home.  It doesn't get better than that.  We've got summer ahead of us, school is almost out.  She'll be attending tomorrow until a doctor's appointment in the afternoon.  Holding my breath about her being out of my sight, but I know she's missing her friends and teacher.  Forward we go.
I feel better just getting stuff out there.  Thanks for all the comments.  They really mean so much.  I consider each a personal hug and value all our friends that we have scattered around the country.  It's funny how sharing burdens with those you love makes them that much lighter.

Thursday, June 16, 2011

Together

I am sighing a contented sigh.  It is evening, and my babies are all asleep upstairs.  Girlie was discharged this evening, and we are all together again.  She had her MRI today, which came back normal.  A HUGE, HUGE, HUGE relief because it meant no brain damage.  I was honestly preparing myself for that.  It also gives us no cause for the seizure, so that remains a mystery, but I'd rather have the mystery and the healthy brain. 

She is doing well today.  She could walk reasonably well by afternoon, though not for very long.  She was beyond excited to come home, and getting very bored (I was thrilled that she was bored, because I took it as a sign that she was returning to 'herself').  The boys and Sweetie were ecstatic to see her, and she them.  Once she got home, I felt that she improved greatly.  I sat in the playroom and watched them play together, and my heart just about burst with joy.  Her walking became much more steady, her voice seemed mostly normal.  In fact, by the time she went to bed, she seemed more just like a tired version of her real self.

It will be an adjustment.  We had a family talk about our new normal.  New normals suck. (I know, it's totally a potty word for me).  We were as positive as we could be about the changes.  For the next several days, Girlie needs supervision when on the stairs.  For the next 6 months, no bike riding, swimming, bathing, climbing, swinging--basically anything that would endanger you if you were to lose consciousness while doing it.  We'll be getting a video baby monitor and probably never sleeping a good night in our life again.  She will be on twice daily anti-convulsant medicine.  As Girlie put it, "Dad, a seizure is a big job."  She listened quietly during our meeting, then had J take her upstairs and I heard sobbing from her room.  I think all the reality of it (even understanding what a seizure is) came crashing down on her.

But at the end of this day, I have what I pleaded to God for: to have my girl back.  My heart is so full.

Wednesday, June 15, 2011

Today was better.  Girlie had an EEG today.  Her speech continues to improve and occasionally she almost sounds like her old self.  She is a little sturdier when sitting, and doesn't continue to ask the same questions.  She even used the potty today, with full assistance.  Walking requires assistance also, but she was able to eat on her own--regular food!-by later in the day.  She could now hold a book, and could focus her eyes by afternoon.  We wheeled her to the play room of the hospital where she was delighted to pet a therapy dog.  Progress was slow, but she had been given a lot of drugs to stop the seizure, so it makes sense that they are taking a long time to wear off.  We're hoping to go home tomorrow, but the doctors want to make sure she can walk and function before she leaves.

She is much improved from yesterday, but still appears a weaker, younger, drunk version of herself.  Very disconcerting to her mother, but the doctors say they have no reason to think there's any brain damage.  If she can hold still, there will be an MRI tomorrow.  They, thankfully, don't want to sedate her for it.  If she can't hold still, we'll come back for an outpatient visit. She is still gracious, as ever.  Thanks all the doctors and nurses.  Gets teary when we tell her that people love her and are praying for her.  Tells us we're the best parents she can imagine.  We look forward to her expected full recovery. J has been living at the hospital with her since Monday night, bless his heart.  He's amazing, truly.  I have been going back and forth between the hospital and taking care of the other three.

Once again I am completely overwhelmed by the kindness of sweet friends and family.  I appreciate every message, call, text, email, prayer, meal, watching my kids, cleaning my house, bringing food for us.  We feel so loved and supported.  We feel so grateful for true friends.  We are grateful for eternal families, and that we've still got our sweet girl.

PS:  Our darling baby turned 1 yesterday.  We'll celebrate when we're all together.

Tuesday, June 14, 2011

My sweet girl had a seizure late last night.  I found her at about 11:40 p.m. as I was tucking them in one last time before I went to sleep.  She had one 3 1/2 years ago, but it was nothing like last night.  It was long, and much worse in a lot of ways.  She finally woke up at about 10:00 a.m. this morning. We had both anxiously been waiting for this all night long, so we were right there at her side telling her how much we loved her.  The first thing she said was "I love you Daddy.  I love you Mommy.  Can we go home?"  She was so small and delicate.  J leaned in to kiss her head and she wrapped her arms around his neck.

She was very groggy today.  She struggles to do most things, since she was so heavily sedated and the medicine is taking time to wear off.  Her speech was faster and clearer tonight.  By dinner time, we even tried to do some clear liquids.  The nurse asked her if she'd like a popsicle and some jello for dinner.  She said yes, then asked, "Can I please have a healthy option now?"  That's my girl. 

Tomorrow will bring an MRI and an EEG, and a discussion about long term solutions.  There's been a lot of emotion in these last 22 hours.  Boiling desperation as the ER people wouldn't let me see my daughter, frantic fear and the thought "No, no, no, no, no, no" going through my head, my heart breaking to see the masses of tubes coming out of her, choking, tearful sobbing in front of anyone and everyone today, and a fervent hope that this is all a bad dream.  There's also humble gratitude (gratitude is not actually a big enough word, but it's the only one I have) and love for the people who have already selflessly reached out to serve my family in so many ways.  The still small whisper of  "Be still, and know that I am God" answer that I got in response to hours of heart wrenching prayer. Thanks to those offering prayers on our behalf.  I feel them.  Please keep them coming.  Thanks for the sweet messages and texts that have touched my heart; they mean so much to me.  Sorry I haven't responded yet.  Because, like a child who cries their heart out and then falls fast asleep, I am exhausted.

Friday, June 10, 2011

Potty Words


It's that time again.  Potty training.  So excited to be done with diapers; dreading the inevitable accidents.  I didn't actually mean to start.  It started with a whispery promise of new big boy undies and now here we are--Day 3 of Potty Training.  We checked out a DVD at the library about potty training.  In our home, we use the words "potty" and "bm" (for 'bowel movement', fyi, because I was raised by a doctor who used clinical terms and now I do too.  Yes, we get weird looks from babysitters and other grown ups).  So my kids think that anything else is a potty word (ha ha, get it?).  So as Buddy and I are cuddled up watching this highly informative video, my older ones are sitting behind the loveseat just snickering because, as far as they're concerned, this is one naughty video!  Pee pees and poops everywhere. Oh, and the book?  Potty Train: Chugga-Chugga-Poo-Poo!  Hysterical laughter. 

He's actually doing great.  I waited until his "window" opened (when he wanted to do it), and now it seems practically done!  He also loves running around half naked, but then, who doesn't?

Speaking of Buddy, he turned 3 in May.  We held a construction party (okay by "party" I mean that he invited his little friend, Clay over, who happens to have a brother Sammy's age and a sister Girlie's age.  They came too.  It was more of a themed playdate) in his honor.  Proof:

This was the only face he'd give me.  What could I do?  It was his birthday.


His dirt cake.  He had a little friend over, Clay, who refused to eat the cake.  When Clay's mom came to pick him up, the first thing he said was "I did NOT eat dirt."



Ah, the thrill of a Toy Story racer that will put the phrase "you have a playdate with destiny" in your head permanently.  His speech therapist, Kris, came to his party too.  He was thrilled.

See? I told you.

Intense racing going on.


One of his favorite gifts was a "motor-mycle".  He rides it around with a pack of toddlers (and their motormycles) in the neighborhood. We've joked about making them little leather vests.

He's my little comedian, my little cartoon character.  He's sweet and feisty, cuddly and stubborn, hungry and playful.  And I just can't get enough of him!

Sunday, June 5, 2011

A Perfect Day


Yesterday was the baptism of my lovely, sweet, beautiful girl.  It was one of the best days of my life.  She was so lovely and excited and prepared.  She understood what an important day it was, and the promises that she was making with her Father in Heaven.  It was a sunny, peaceful day.


That morning we gave her own set of scriptures with her name on them.  She was beyond thrilled, and said it was the best gift she could imagine.  She carried them around for the rest of the day.





So blessed to have a daddy worthy to baptize her.


We felt so blessed to be surrounded by people we love for this special day.  Lots of friends helped, and we felt so grateful to know such wonderful people.


                                           We enjoyed yummy, beautiful refreshments.




I made her favorite peppermint pinwheel cookies.


And a cake that was not at all fattening.


She is the most gracious, lovely person I know.  I am not kidding.

She looked like an angel to me.


 

That afternoon we went down to the temple to enjoy the peace and beauty there.  Can I just say I am so enchanted by my daughters, and entertained by my sons.

Girlie wrote down her feelings of the day in a special journal that her primary teacher gave her.


Eternally grateful that these peeps are mine forever.





We had dinner at her favorite restaurant, Dennys. :)  Then we headed home for a short family walk and soaked up the last sunny rays of the day.  We've missed the sun and it seemed to come out to make her day absolutely perfect!

Click here for the Peppermint Pinwheel Cookies recipe, for all those who asked. :)

Wednesday, June 1, 2011

Way more pictures of us than you want to see {Early April}

In a meager attempt to keep my blog updated, here is a nutshell version of early April in our household.

We made a Conference tent.


Sweetie made her first official mess.  Isn't it cute?



We went on a fabulous Spring-break-but-it-looks-like-winter-still trip with our dear friends up to Semiahmoo--a gorgeous coastal spot close to Vancouver, B.C.



These kids LOVE to play together.



Buddy hopped up on some driftwood and said "Mo pichurs (More pictures), Mommy.  Yun mo (one more).  Yun mo.  No mo."



We spent a day in Vancouver at the amazing aquarium there.  Here's Sweetie at the dolphin show.




Our sweet friends, Christian and Mandy.  J and Christian are like secret twin brothers.  They act and think so much alike it's eerie.  They like to get together and commiserate about all the crafting 'junk' their wives drag home. :)




Pictures with my entire family are my favorite.  I'm absolutely crazy about these people.


The boys got Japadogs to eat.  Japanese hotdogs with fish flakes on them.  ...yum?..



The mommies opted for crepes.


Mmmmm...


It was a fabulous four days.  Despite what Sweetie is saying.



There was also a huge rainbow by our house.  We all stood for a while in jammies on our front porch watching it.



My delicious smelling hyacinths were so big they had to lay down.  That's right, flowers that are just too big.


And, Sweetie got even cuter.


Early April, check.