4 yrs, 4 months

So, my husband asked if I had abandoned the blog. I haven't tried to, I just forget to post on it. I have been posting lots of pictures on Facebook, which means I forget to post photos and status here.


The title of this post.

Here's where we were when Alexis was 4yrs 4months and 14 days old.

That is a picture taken the day of her heart catheterization. She is focusing not to worry about why she is in the hospital. She's definitely the professional.


On Tuesday, Jessica will be 4years, 4months and 20 days old.

For our family, that means that Jessica will also be in surgery to repair her heart defect - an ASD.  It is a routine procedure that Children's does everyday (literally).  We are assured that Jessica will do fine.  We are using the same surgeon who did Alexis' surgery - Doff McElhinney. 
For Monday (pre-op) and Tuesday (surgery), I'm more concerned about her "willingness" to stay still when we're in the waiting / hospital time delays. She'll be asking tons of questions, but I think she'll be excited that people are asking her all of the questions and interested in her. 

We'll try to post here and facebook to let people know about our progress on Tuesday.

Catherine

Alexis Speech Sessions (#2-#3)

Here are 3 more videos showing Alexis interact with the speech output device at the CHARGE Conference.
#2

http://www.youtube.com/watch?v=Qtcpx33Qyxo
#3

http://www.youtube.com/watch?v=DZfo5eg-0hM

And then a video of Jessica pushing the happy birthday buttons and then saying Happy Birthday!
#4

http://www.youtube.com/watch?v=caTe2mtK8dY

Alexis Speech Session at CHARGE Conference (#1)

Here is a video of Alexis interacting with a speech output device (it is saying "want").
The theory is that when we all speak, we are making a motor movement in our mouth.
For Alexis, her hands are faster than her mouth in interacting.  And many kids like Alexis, that's why they can do sign language before speech - the hands are better movers than their mouths. (it helped Jessica).
For us though, Alexis is very interested in speech and we are hoping that giving her a voice output device will help her to request the things that she wants to do around the house and school - allowing her to interact with more people and communicate her needs.
Here is the first video - courtesy of John Halloran who is working with Alexis on the device.


http://www.youtube.com/watch?v=kqolvHkc5-Q

Family Vacation after CHARGE Conference

We've been busy :)
Does that summarize everyone's summers?  I know moms who have had their second babies and been better than I have about posting to their blogs..... :| 
No excuses.  We are recently back from CHARGE conference (will write another post about this one).  But we took some great pictures after the conference.
We went to Blizzard Beach - an awesome waterpark, but didn't take any photos with camera - too busy with the fun rides!
We went to Sea World, we had some time to take pictures because we were HOT of being outside.  We ate at the Shark exhibit (we didn't eat sharks, we just ate in the underwater viewing dining room).
I have a mouth full of drink, I'm not angry as Jessica says about this picture. Alexis enjoyed the air conditioning of this restaurant.

A gorgeous picture of Jessica!  My cutie pie is growing up so fast!

The view of the Shark exhibit from our seats.

 Alexis entertaining herself in the heat.  Jessica barely able to walk because of the heat.

 The killer whales show!  Fantastic!

 The next day we went to Aquatica, and we had a cabana.  That was wonderful, as you see my kids can lounge by the pool.  Alexis LOVED Roa's Rapids, a body rapids ride where you wear your life jacket and float down the river.  She and Matt did it 10 times.  A fun time!!!

Jessica and Matt in the wave pool.  They were having a great time as well!

How Alexis slept last night

It's been a fun night.


2:15 awake and crying

2:45 awake and not stopping crying, we came downstairs

3:45 better and ready back to crib

4:15 in crib laughing hysterically

5:15 still giggling and laughing in crib, so loud that Jessica awakes

5:20 matt pleaded by grumpy no sleep wife to take Jessica downstairs to play

6:15 jessica washes her face in yogurt while matt took shower

7:00 matt notices that alexis' poo'ed her bed, herself, everything

7:15 alexis clean, matt mad, wife re-awake, Jessica ready for school

7:25 writing this message

Photos of House - Updates on Fundraisers

So this is the first spring in our new house and it's basically been Christmas everyday - we're finding out what flowers exist in our yard.  Unfortunately, I didn't pay as much attention in Botany school (oh wait, that is my sister) :-)  I have been spying the local nurseries to match leaves and flowers to determine what we have!  Thankfully we have some nice flowers!

And here is Jessica running around on Friday afternoon!   

As for our CHARGE Syndrome Fundraising:

- We made about $500 from our Red Sox Raffle in May.

- We have our CHATEAU (Andover, MA) fundraiser on Tuesday.  20% of the proceeds will go to the CHARGE Syndrome Foundation.

- We have our ONLINE Auction going on at http://www.biddingforgood.com/CHARGE

We have already raised $800 and hope to reach $2000.  The deadline is Sunday June 19th at 8pm. 

Please help out as you can.....

CHARGE Syndrome Fundraiser (In Person / Online)

We're having a 2 part fundraiser!!!!

In person on Tuesday June 14, 2011. 
We’d like to invite you to a benefit fundraiser for CHARGE Syndrome Foundation on Tuesday June 14, 2011 at the Chateau Restaurant in Andover.
The Chateau is donating 20% of purchases (either eat-in or take-out) any time during the day. Just print the attached coupon and attach it to your receipt.

Online Auction until Sunday, June 19, 2011:
We're auction'ing 32 donated items including Marc Savard autographed hockey puck (they could win the Stanley Cup), one pair of Patriots Preseason tickets and autographed Jed Lowrie baseball.
www.biddingforgood.com/CHARGE
We have a Facebook page that we’ll update with information about the Event: http://www.facebook.com/#!/event.php?eid=198417110191881

Thank you all very much!!!!