Checking in...

We're good - Seraph's home and healthy.  No one is sick.

Seraph is officially crawling - her therapist confirmed it today.  She does a lot of scooting and rolling, too.  She's reaching for things up high.  She loves to practice standing so that's her next goal.

have a happy last day of 2009.  Time to get rdy for next year :)

Merry Christmas!!

We made it!! BHAAAAAAAAAAAAAAAAAAAAAA!!!!!!!!

Good Report from Cardiology

Seraph visited her cardiologist today.  She was wary, but playful.  The x-ray was traumatic:  2 gals holding her against the wall while her mommy walked away. :( Everything else went well.  Cardiology wants to see her every 3 months.  She had labs (they might tweak her meds).  Overall the Doc was impressed. He even mentioned the possibility of Seraph being able to have the 3rd heart surgery (Fontan) if her pressures go down.  He's a pretty pessimistic guy, so him acknowledging that hope was huge for me :)

We also found out her cardiologist is also working from the clinic at the new hospital that's only 5 minutes from my house.  They'll be able to do all her future visits and tests there....except for heart caths and sedated echoes.  I'm thrilled!

My emotions have been all crazy lately.  Here's a picture of Seraph last year on Christmas Eve in the PICU:

Last year, after spending ThanksGiving, Christmas, and New Year's in the PICU, she came home on hospice care.  They didn't think she'd live to see her first birthday (in June).  My sweet little girl decided to stay with us.  She's a fighter and God has blessed us to keep her with us for now.  I'm holding my breath, but I really think she'll be home for Christmas this year.  Yay!

She has changed so much since last Christmas.  She's army crawling; sitting by herself; doing baby talk.  She's invented her own sign language to communicate:  "I like..", "I'm happy", and "that's bugging me".

At the end of her appointment today, she wouldn't let me put her down without screaming.  I pushed her stroller out to the car.  As soon as she saw our car, she made her sign for "I like.."  All her tears stopped.  She smiled and giggled and played all the way home.  I think she must've been scared that I'd leave her at the hospital.  I was just as happy to be bringing her home.  Love you, lil girl :)

Thank you for all your prayers and support - and Merry Christmas to you and yours :)

Little Seraph

Seraph is so playful!  She doesn't mind when Angel shoves toys in her face (usually Elmo).  She still cries when one of the girls screeches/screams in delight - a problem because sometimes seeing Seraph is enough to make them scream with delight.

I wanted to post a video, but I can't figure out how to post it on this new editor.

Anyway, Seraph is spending good chunks of time on her hands and knees!  I haven't seen any actual (real) crawling yet.  She still army crawls and rolls when she wants to get somewhere (or away from something) fast.

Today she went from her back to sitting up all by herself!  I'm not sure how...we were playing games at the table and when I looked over she was sitting.  She's yet to do it again, but I'm watching for it now :)

We had some issues with her g-tube leaking (again) yesterday....but a long internet search turned up a quick fix -- stuff folded tissue between the button and the skin.  Crude, but it works.  She's fine on her back, but on her tummy she pushes the button down and then the balloon seal is broken and she leaks.

There's a nationwide back-order on her newest diuretic medicine.  The hospital was almost out so they only gave me a week's worth.  Hopefully I can find someone who has it on their shelves (or someone who can compound it).  None of the weekend pharmacies had it so I'll be trying again tomorrow - wish me luck :)

Twins Together :)

Seraph is home!!!

When she got home, Angel followed her around saying Seraph's name.  Later when we took Angel up to bed, Seraph stretched to watch Angel disappearing up the stairs and burst into tears.

Gma reminded me last night that Angel is always more clingy when Seraph is in the hospital.  

I've often wondered if my girls' twin-bond would be lessened because they spent months apart when they were newborns.  Who knows!  but they sure love each other...and want to play together :)