Christmas Morning Video #2

Christmas Morning Video #2



http://www.youtube.com/watch?v=5B4YSd0qFgk

Christmas Morning Video #1

Christmas Morning Video #1


http://www.youtube.com/watch?v=at3Uox-FA7Q

December Photos

Here are the December Photos - and maybe if I use my time wisely, I'll be able to post some December videos. 

The family (minus the photographer behind the camera).  Yes, Alexis is chewing on the comb.

The family again.... with Alexis blocking her face with the comb.

Alexis and Mommy.

Jessica, Mommy and Alexis.  Jessica was not happy now because she didn't want Alexis sitting in her booster seat.

Alexis at the Comeis house for Christmas Eve.

Jessica at the Comei's house.  Being an angel as usual (HA!)

Christmas Tree!

Jessica showing off her new boots for Christmas!

At the condo, Jessica "helping" Mom shovel.  BRRRR!

November Photos

Here are some random photos from my parents visit in November.  We usually forget to bring out the camera until the kids are wound up and crazy.  You can see by the photos below.  They were crazy and silly!

Jessica smiling pretty for the camera. She was probably in mid-jump to get to the camera.

Alexis looking at the bright camera lights.  Very curious about what we're doing.  And even more ready to throw the bumble bee at someone.

Trying to get the kids posed for the camera. This is the best one, with the fewest moving kids.  Please observe that yes our cat is really as big as our kids.

And the "horsey" ride.  Good thing they are both under 30lbs!  And yes, Matt is really that tall!

Jessica concentrating on fixing Mommy's hair.  Very cute, but sometimes painful for Mommy. 

Hopefully we'll catch up with some December photos soon. 

On Road to Recovery

Alexis seems to be better.  You wouldn't know it based on her pouty face that she gave Santa at school yesterday.
Santa tried to get her to laugh and be happy and she just pursed her lips together in the cutest little pout.  Yep, she's my daughter for sure.  I'll have to see if they were able to get photos of her.

She seems to be back in the mood for school and not sick, so that is good news. It's still very curious as to what causes / triggers / impacts Alexis so horribly to upset stomach and then causes horrible diaper rash. 

She has very silly moments, like when her favorite toy is available or when daddy is playing crazy games with her.  A true little doll baby!

In other news -Matt has a cold, Catherine has some sort of throat/nose/general stuffiness, and Jessica seems to be on the mend as well.

After tomorrow, Alexis is out of school for the next two weeks - she is getting ready for a lot of couch potato and goofing off I think!  She's been doing letters, numbers and words at school - she's a smarty pants!  (when she's not being grumpy). 

Take care everyone,
Catherine

Alexis Campaigns to Raise Funds for CHARGE Syndrome

Hi all,


It's that time again to donate money to help kids with CHARGE Syndrome get great support from the CHARGE Syndrome Foundation. In July 2011, there will be another CHARGE conference in Orlando Florida. It will absolutely fantastic - and CHARGE Syndrome Foundation tries to offer as many scholarships to attend the conference as possible - but they need your help!
Please help if you can, even if it's just a little bit!

Catherine

http://thirdannualcifc.kintera.org/faf/donorReg/donorPledge.asp?ievent=434831&lis=0&kntae434831=9A14EF829F094804B04BFA608D538EA6&supId=287354978

Alexis Update

Alexis is doing much better.
Here's what we did.
We spent 1/2 day in ER to get antibiotics.  She still didn't feel well after 2 doses of antibiotics.  Her GI ordered some Zofran (anti nausea medicine).  Within 30mins she turned back into laughing giggling Alexis.
She stayed on the antibiotics a couple of more days.  And as expected, now poor Alexis has a HORRIBLE NO GOOD VERY BAD diaper rash.  Like the diaper rash that looks painful just to think about how much it hurts her.  A diaper rash that looks like she went sledding down the driveway without anything on.  So painful!
We are remediating that side effect with warm baths, butt paste and air-time.  Poor little girl.  All of this upseting her.

As for the rest of us, I came down with the gi illness on Friday, Jessica seemed to have some of it as well.  Matt has avoided all of it.  THANKFULLY! 

Catherine

Baby Baby Jessica

Baby Baby Jessica is on Perkins Website again :)

(see her cherub little face!)

Buy your holiday presents for a young child or a child with special needs and support Perkins at the same time. By going to BeyondPlay.com, making your purchase, and using the fundraiser code PER2010 at checkout, up to 15% of you purchase will go to Perkins School.

If you are making the purchase over the phone make sure to mention our fundraiser code PER2010. You must make your purchase from Dec 6th to Dec 20th in order to use the code and support our school.

Beyond Play has a very nice selection of books, toys, sensory products, therapy tools, and educational games for young children and children with special needs.

EXCITING!!!

Suggestions from the Schnaderbeck Blog Readers?

So, Yesterday was our first trip to the ER in a long time.

Here are Alexis' symptons:
Saturday - FEVER, hot to touch. (we don't have a thermometer that we think is reliable for Alexis temperature). We dosed her with tylenol.
Saturday - Couldn't tolerate her pureed tube foods (g-tube feeds). We switched to pedialyte.
Saturday - SLEPT all day. Not interested in playing or engaging at all.
Sunday - Fever lower. Great!
Sunday - Couldn't tolerate pedialyte without gagging / getting extremely gassy. Even barfed (she has a partial fundo but she only gags / barfs when she's really sick).
Sunday - went to the hospital. Got x-ray, no blockages seen on x-ray.
Got blood work, nothing abnormal. Electrolytes a little off, but nothing huge. WBC was high on Tuesday, but nothing horrible on Sunday. Got prescription for Augmentin (antibiotic, started it last night). 
We were discharged from the hospital.  She's still kind of gassy / gaggy at home today.  Hopefully she'll be ok.
Her pulse ox was 98 and her chest was clear....

i'll try to post some photos later,
Catherine

Jessica in October

So evidently, Jessica is trying to become a movie star.
Here she is impersonating (I mean, im-cat-inating) Puss in Boots from Shrek. 
Absolutely SWEET!  Wouldn't you give that face anything?
Catherine

Halloween Photos

That's an awfully big bunny going through the yard....

Wait there's a bunny and a flower... must both be on miracle grow since they are both so large....

The flower doesn't look so happy.... maybe it's a little cold for trick or treating.... 

Oh wait, they're back inside getting warm before heading back out again....

Funny Video!

This is a funny video that one of my high school friends posted on his facebook.
It's just a simple cartoon of a fictional transcript conversation between a Orthopedic doctor and an Anesthetist.  It is quite funny, especially if you understand that asystole (state of no cardiac activity - ie, heart not working).
It was definitely worth a giggle for me tonight!

http://www.xtranormal.com/watch/6752641/

Funny!
Catherine

Knowing or Not Knowing?

Some story telling, then the title will make sense.

In 2007 (after Jessica was born), she was seen at Andover Pediatrics.  Her doctor heard a heart murmur and said, "go see Alexis' cardiologist, make sure it's nothing."  We did, Alexis' cardiologist said "benign heart murmur we anticipate that it will go away by the time she's 2." 

In 2009, Jessica turned 2.  Heart murmur still there.  We didn't pursue it because the data that they explained to us about the original heart murmur that it may or may not close during the year she is 2.

In 2010, Jessica turned 3.  She still had her heart murmur.  Her pediatrician said "go see Alexis' cardiologist, make it's nothing."  (Keep in mind that Jessica turned 3 on July 2 - Alexis had just had her heart catheterization at Children's on June 22).  I had already mentioned it to Alexis' heart doctor that I thought we needed an appointment to follow up with Jessica.

On Sept 15 (today), we took Jessica to see Alexis' cardiologist.  After Matt and Jessica were in the ECHO for 1 hour, I knew that they had found something that was abnormal.  I couldn't patiently wait any longer.  I had to go be with them (unfortunately that meant I woke up sleeping peacefully Jessica).  Alexis and I supervised.

The doctor came to see us and give us the results fairly quickly - Jessica has an ASD murmur - the same heart defect that Alexis had repaired 3 months ago.   Jessica will need to have the exact heart catheterization procedure to fix the hole in her atrial septum (ASD).  The doctor recommends we wait another year - but also understands if we decide to get it repaired now.  We will probably wait until Jessica is a little bigger, a little stronger and a tougher little kid.  If her anatomy is different in anyway, there is a possibility that they won't be able to fix it during the heart catheterization - but instead we'd have to schedule another operation - for open heart surgery.  Obviously the recovery, hospital stay and impact on Jessica's active lifestyle is greatly reduced by a heart catheterization. 

So, now that we know what we know about Jessica's heart - is knowing better than not knowing?   Alexis and Jessica are precious sweet little girls that need a world of support. 

I know there are many of Alexis' friends out there with much more complicated heart conditions and my heart goes to each of them and their families.  But we just hadn't expected that Jessica had similar heart problems as Alexis.  But now we know.... and can prepare.

Alexis - Hospital Update - Sleep Study

On Friday, Alexis had a repeat sleep study to see how well she is managing with her CPAP at night.
Alexis HATES sleep studies because they have to put EEG leads on her head and it smells bad, takes time away from sleeping and makes her very grumpy.  And for people that know Alexis, the worst thing you can do is to disrupt her sleep.  So, this video is made by a mean mommy who had to help her endure the process.  At about 50 seconds, she stops her crying and gives me the STARE DOWN to inform me that she did not appreciate this process one bit.  I hope when she's a lot older she'll forgive us for all that we've done to her to help her stay alive.
http://www.youtube.com/watch?v=doXYrlKBI28


Please don't be angry at me for posting Alexis so sad, but I wanted folks to see an example of what she endures....
Catherine

Flying - A Tale of Two Sisters

So, while we were in Lake Placid we took a small airplane ride.  It was a scenic ride through the mountains of Lake Placid.  Well, in the following video you can see ALEXIS having a great time - a big smile and lots of giggles, and then you will see Jessica with no so much interest in the flying.  She is concentrated instead on rolling her seat belt and keeping down her breakfast.  Matt and Alexis had a great time.  Jessica and I tried not to turn green.  It was great fun, just very funny to see the reactions of our two daughters.

http://www.youtube.com/watch?v=SILLQSnxr1M

The Summer Trip to Lake Placid (Aug 2010)

Jessica, Matt and Alexis at Fort Ticonderoga, NY

Jessica and Catherine dressing up in clothes at Fort Ticonderoga. 

Alexis, Matthew and Jessica dressing up quickly (attention spans had waned) at Fort Ticonderoga.

Jessica, Matt and Alexis in an Olympic Bobsled at Lake Placid.  Matt and Catherine actually went down the track in a bobsled -- an awesome fun time!

Matt and Jessica in the Olympic Bobsled Combined Track in Lake Placid.  We got to walk down from the top!  A fun walk, and we didn't let Alexis stroller go :) 

Jessica, Alexis and Matthew waiting patiently for Boat Ride on Lake Placid.  Please OBSERVE how grown up Alexis is sitting and how attentive she is to the camera!!!  Very Awesome!!!

A very windy Boat Ride......

After boats, then PLANES.  A little plane, for a scenic ride above Lake Placid.  For me, a lot better than hiking.  And we were able to see a lot of mountain tops (and hikers).

Alexis had AN AWESOME TIME.  Next post will be the video from the ride!

Then a smaller boat, kind of cold day, and Alexis was SLEEPING on this boat ride.  She was very calm and Dad paddled very well, even though Alexis wasn't a good counterweight to Dad.  I guess Dad will lose a few pounds or Alexis will gain a few pounds.

Some sort of Falls in NY that I forget the name.  Catherine and Jessica being cute at the beginning of the hike.

Matt and Alexis.  Alexis is thinking, "Dad why are we stopped, you know I like for you to walk."

Alexis, Dad and Jessica - trying to prevent Jessica from falling in the river.  A very fun walk!

Jessica was doodling herself to sleep.  She slept the whole ride home from Lake Champlain in Burlington, VT to Methuen, MA.

Alexis Summer Fun

Alexis touching Alligator at Reptile show at Kimball's Farm.

Alexis smiley at Butterfly Place in Westford.

Alexis is so absolutely huggable, minus the alligator that she is near.... I hate reptiles....

But it seems Alexis enjoyed this alligator better than the bunny.  See her face below regarding bunny.

That is the "I am ignoring you and you can not make me get near that fuzzy thing"

Yep, Alexis gets to have all of the fun!

Jessica Reading Story to Daddy before School

Fastest time from Movie to Blog (3 mins).


http://www.youtube.com/watch?v=AS-cKdDeXns

Family Fun Day at Perkins

Doesn't this look like fun???  Alexis walked the whole parade route - she was a little slow....
But she was very CUTE and LOUD (she was wearing cow bells on her shoes).  Talk about LOUD.  You could probably hear her in Boston (from Watertown)

Alexis and her friend (and her teacher and mom).  She did an awesome job walking!

Here is more walking.  And Jessica is going back to get her to walk faster.

You see that Jessica accomplished her mission to get Alexis walking faster.

Alexis doing some twists while trying to not stand anymore - she was tired of walking!

Alexis & Bridget in the bouncy house.  Alexis was super silly about the bouncy house this time!

Jessica was tossing balls into cups - every so stylish by the middle of the day!

Jessica RUNNING in the bouncy house!  She loved it too!

Alexis would NOT touch the soft little bunny.  She was so "I'm not having anything to do with that...."

She was counting on her fingers all of the reasons not to touch the bunny. 

Jessica - Ball Pit Bathtub Night

Jessica playing in bathtub full of water and ball-pit balls!  Having a fun time!  So sweet when she smiles from ear to ear!

Jessica - Cutie Pie

Posting about Alexis wouldn't be fair without some updates about Jessica!!!

Here is Jessica, you can see she has all of the basic necessities down - sunglasses, cell phone, beach chair, and wearing pajamas for the whole day!