Sunday, April 22, 2012

"Perfect Paige"

We all laugh about how we have our "wild ginger tank" - that would be Andrew:)  And then "perfect Paige."  Andrew is so fun, full of life and always on the go.  He is constantly running away from you and laughing and then comes back with his mouth wide open for a "kiss."  He does have a fiery side though with quite the Irish, red headed temper! Paige will wait her turn to do things, sit still when needed and entertains herself nicely.  She has always eaten well, always slept through the night, and is overall a really easy baby.  Hence, their nicknames:)

Paige lived up to her reputation on Friday and she was awesome for her ear tubes.  She was in a great mood despite being woken up at 5:15am to get ready and leave.  She flirted with people in the waiting room and made many friends.  She even convinced one of the receptionists to give her presents off her desk!  She got into a gown with no problem, took the oral meds like they were candy and laughed when Mommy put on the scrubs, surgical cap and mask to go into the OR with her.  As we entered the operating room, I told her that we were going "night night" and she waved to all the doctors and nurses and said "night night" to each of them.  She then willingly laid on the operating room table and let them put her mask on. She blinked a couple times and peacefully went to sleep.  They had warned me when going in (and I knew) that the kids usually fight and it isn't a "pretty sight" watching them go under.  Well, Paige proved them all wrong.  I was so impressed by her and so proud:)

She wasn't too happy waking up on the other end, but that was to be expected.  She screamed in the recovery room nonstop and refused to take anything.  But we weren't surprised - it was filled with bays of other screaming babies!  Luckily, our nurse didn't insist that she eat and let us go. She was fine the second her got in the car and fell fast asleep for the car ride home.  When we got home, she drained a bottle, ate breakfast and played like nothing had happened.

In her gown and ready to go!
Sleeping peacefully on the way home:)
Surgery presents are a must!
And the paper is still almost as much fun as what's inside:)
Thanks, Nana and Papa!
Feeding her new dolly in her new high chair!
And giving herself a bite, too:)
Pushing her dolly in the new tricycle and acting like nothing ever happened!
Of course Andrew couldn't be left out - his "Paige's surgery present":)
Hiding in the tunnel with his new Sesame Street singing microphone!
Thanks for all the calls, notes, and emails. It means a lot to know that so many people are thinking of us!

Thursday, April 19, 2012

Good Luck to Paige!

Last Friday, we had our big developmental assessment at Georgetown.  It was close to 4 painful hours and it involved lots of cooperation from the kids.  They were actually awesome.  They showed off and surprised us all with how much they actually know and can do!  For fine and gross motor, they both scored somewhere between their adjusted age (16 months taking into account their prematurity) and their chronologic age (from their birthday).  Andrew lagged a bit more in fine motor and Paige in gross motor.  They both scored around 16 months for expressive language (talking) and closer to 18 months for receptive language (understanding us).  We pretty much knew this already - they both follow directions beautifully and truly understand pretty much everything we tell them.  They aren't saying very many words though - Paige is saying around 6 words consistently and Andrew is saying about 2.  The place where they surprised us was the cognitive category - they scored at 21 months!! They shocked us putting together puzzles with multiple shapes, placing things in orders, and following advanced directions.  I guess we need to challenge them more at home!  Monday is our Fairfax County follow-up assessment, so we'll use this information as a guide to help make decisions about ongoing support.

Tomorrow is Paige's ear tube procedure.  The process for preparing for this has been insane!  At first, I thought the process was really efficient - they sent me to an online registration site to fill out our demographics, insurance info and clinical history. BUT since then, I must have talked to 5 different people from that surgical center "verifying" the information I put in!  What a waste of time and staff!  We also had to go do a clearance visit with the pediatrician yesterday.  You'd think she was having open heart surgery with what we've had to go through!:)  Anyway, the procedure is at 7:40 tomorrow morning and we have to be there at 6:30.  This means we have to leave the house by 5:45 and Andrew can't be dropped at daycare until 7:00am.  The surgical center is super strict and doesn't allow siblings, yet wants both parents in the car for the drive home so someone can sit in the back with her to make sure she's not too sleepy and floppy and doesn't get sick. So this means that Jack's mom has to come over to our house at 5:30 so she can watch Andrew and then drop him a daycare!  Thanks so much to Grandma!  I'm sure it will be quick and easy but I'll post a quick update tomorrow!

A few fun pictures from Nana and Papa's visit last weekend and our time at the park:

Our pretty girl banging on the slide!
Andrew loving the swing!
Getting a push from Papa!


Andrew's first ride!
Their first ice cream cones! And Andrew's new "smile"
Paige's cone and her crazy hair!
And our cool dude rockin' to the beat on his Sesame Street radio!

Sunday, April 8, 2012

Easter Weekend

We had a wonderful Easter weekend which started out with a trip to the Reston Petting Zoo!  Grandma, Uncle Josh, and cousin Katie came with us and the kids LOVED it!

Greeted in line by a ferret!
We fed baby lambs bottles!
And Andrew loved to give the goats first fulls of food:)
There were lots of hungry animals!
Our little lamb:)
There was an Easter Egg Hunt!
But Andrew preferred to take eggs out of his basket instead of putting them in...
Katie and Paige
The Easter bunny was very generous this year...and so were other relatives that sent us awesome Easter packages!

Easter baskets!
This was the first holiday that they really seemed to understand!
Paige clapped for all her presents:)
And Andrew screamed with excitement!
Cute pajamas
Bunny pancakes
The cutest little bunny boy
Look Mama!
Being shy in the big girl chair at dinner
Yummy cake!
Our little bunnies:)
Happy Easter!
(lots more pics in the Picasa album!)

Tuesday, April 3, 2012

Medical Updates

What a mess.  Literally! Paige started throwing up last Thursday night.  Everywhere. And continued until yesterday.  She would throw up at night, be cranky and sometimes sick again in the morning and would then improve in the afternoon, tolerate food and play.  We would think she was better and then she'd repeat this performance starting around midnight again.  It was very odd.  And it came at the worst time possible - Mommy's first trip away when Daddy was alone!  Poor Daddy.  But he did an awesome job managing these two alone for 2 1/2 days.

Since yesterday was day 5, I decided to take her to the pediatrician.  They were slightly alarmed at the duration of her vomiting and the fact that it was only occuring when she was laying down.  The pediatrician recommended a head CT scan and we decided that she had 48 hours to improve or that was the next step.  We were really hoping this wouldn't be necessary, especially since it requires sedation at her age.  Luckily, we finally had a vomit free night last night. And we've hopefully escaped that test.  She is definitely feeling a little better but is still not our normal, easy Paige.

Andrew finally got to see the gastroenterologist today.  Jack took the day off to bring him in and Nana (thank goodness for her!) came up to help and stay with Paige.  We talked to Dr. Darbari for a while and reviewed Andrew's test results.  His sweat test was negative, preliminary tests for Celiac Disease were negative and fecal fat repeat was more normal.  All good.  But leaving us again without answers.  We weighed him at their office and compared to the last time we was there in January.  He dropped again on their scale and confirmed his weight loss/lack of gain issue.  Dr. Darbari feels that its time to do an endoscopy/colonscopy to take some pictures and get some biopsies.  Their wait time for this to be done is likely 4-6 weeks.  So we wait.  Again. For the scheduler to call us and give us a procedure date.  It will require general anesthesia but will hopefully be a same day procedure. 

It seems like our lives are consumed by doctor appointments and medical issues lately.  Every Friday for the next six weeks, we have medical appointments - developmental assessments and county evaluations, ENT visits, pediatrician visits, Paige's ear tube surgery with pre and postop visits, Andrew's endoscopy/biopsies, gastroenterology followup, and weight checks.

We really thought we'd be done with all the medical issues by now.  It is a bit frustrating that our lives are still so wrapped around their health.  We are just hoping that all this attention now will find any problems so that we can address them early.  So until Andrew's procedure, we will focus on bulking him up by sneaking in lots of extra calories - butter, sugar, eggs and extra cheese added to everything.  High calorie milk shakes.  Fatty foods.  Dr. Darbari told us today "there is no such thing as bad fat with weight loss.  Give him Krispy Kreme!" Wouldn't we all love to have his problem?!?  Here's to our "Tank" gaining his fat belly back:)

Thursday, March 29, 2012

Ring Around the Rosie



17 Months and we're finally starting to play together!  Their favorite dance is "Ring Around the Rosie" and we do it about a dozen times a day.  This may not be a favorite for very long though...we sing it in swim class and DUNK THEM at "we all fall down!"

Saturday, March 17, 2012

Happy Saint Patrick's Day!

We had a great Saint Patrick's Day at our friends, Brian and Alisa's house.  We ate lots of yummy food, drank green beer and the kids ran around.  Not quite the pre-children festivities that we are used to, but fun nonetheless:)

Our true Irish Redhead:)
Celebrating in style!
Jack and Baby Alex!
Paige with their new twin Irish redhead dolls - Thanks to our Great Aunt Anne!
Close up of Baby Alex!
Chocolate Stout Cupcakes with Bailey's Frosting - not so much for the kids!
Green beer!
Kiss Us We're Irish!

Wednesday, March 14, 2012

Weekend Distractions and Andrew Update

Swim lessons were a total success.  They LOVED them.  And we were pretty impressed with how they were done.  We alternated between circle time with songs in the pool and "exercises" on the side.  We worked on kicking, floating on their backs, splashing and falling into our arms from sitting and standing on the side.  They were two of the most cooperative babies in the class and the only ones that were comfortable enough to really splash, laugh and enjoy themselves.  We were pretty proud of them:)

Saturday night, we celebrated their Uncle Josh's birthday and went to Outback for dinner.  I'm not going to lie - I was a little nervous about how this was going to go.  We had to wait 45 minutes for a table and were then there almost an hour and a half.  They were on their very best behavior though and ate and played happily the whole time.  It was a small miracle:)

Paige dancing while she waited to leave for dinner:)
Andrew with Uncle Josh and Daddy at dinner
Happy birthday, Uncle Josh!
Sunday, was their very first birthday party!  It was for my co-workers son's 3rd birthday and it was at JW Tumbles - a kids indoor play arena.  They had a blast and it was so fun to watch them explore everything.

We climbed!
Went down LOTS of slides!
Rode on "space shuttles":)

Drove on race tracks!
Made new friends!
And made silly faces in the mirror;)
We ate yummy pizza and cake
And wished Kannon a very happy birthday! (Too bad its dark and you can't really see his awesome cake...)
Unfortunately, this week was back to reality and Andrew started his battery of testing to try to figure out his weight loss and abnormal stooling.  Today, he did a sweat chloride test to look for Cystic Fibrosis, blood work to test for Celiac Disease, and abdominal xray to look at his stool burden.  We also got a collection container to start a 72 hour stool test.  Yes, you read that correctly.  We have to gather up all his poop for 3 DAYS.  And this is the container they gave us:

Its about the size of a gallon of milk!!!
Poor guy had to sit with these bags to collect sweat (after some tortuous "sweat stimulation") for 30 minutes. He was not a fan!
But he found ways to drink despite not having his hands;)
In the xray suite - he was hating life at this point since we just finished his blood draw.

Good news is that the sweat test already came back negative - we are very relieved by that. Now we just wait on the other results and start crossing things off our differential list one by one.  We're just hoping that we find an answer quickly without too much torture and that he starts packing on those pounds!