CHARGE Mom Angel

On Friday, I got the news that I knew what inevitable but I really didn't want to hear.

One of the most fabulous CHARGE moms had lost her brave battle with Melanoma.  She has 3 beautiful children including Eva who is 1 year older than Alexis.  She was always willing to share her experience and offer great advice.  For a fundraiser a couple of years ago for CHARGE Syndrome Foundation, she made beautiful bracelets with the name of each CHARGE kid.  She made wonderful purple ones for Alexis - and had enough material to make 8.  I bought all of them.  She was a wonderful spirit.

She always posted about butterflies - it was truly her spirit in another animal.  In the past 2 days, I've seen 3 beautiful butterflies and I know that all of the others who knew Crystal are thrilled at we get to have her spirit with us in butterflies.  

I'm writing to request if you have any spare funds, to donate to her website - she's been a wonderful inspiration to me and other families with CHARGE.

http://www.gofundme.com/Crystal-Masionis

Alexis Speech Second Round of Videos

Here is another round of Alexis speech videos - thanks to her awesome SLP at Perkins!

Part A

http://www.youtube.com/watch?v=6dAn0vXENoY

Part B

http://www.youtube.com/watch?v=4UrfwP1xVRA

Part C

http://www.youtube.com/watch?v=LcmDJFIh1EE

Part C is especially funny since Alexis used to fit in that bathtub.  I will find old photos.

Catherine

Alexis Speech Videos

Here are some fantastic videos of Alexis using her new speech device.  I'm really proud of her.

I would have never expected that having a speech device would make her want to eat more.

I am thrilled with the progress - she's really done fantastic!  Who knew that getting a speech device would make her so motivated to eat!! :-)

Catherine

http://www.youtube.com/watch?v=AvXm0S-Wsr0

http://www.youtube.com/watch?v=CMj8IGKrdcg

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

Original Music - Alexis Style

Alexis Playing Piano

Alexis was being particularly cute playing her piano on Thursday night.  Here's an excerpt of her piano style these days.  It's her original score, so I don't know if it will be widely circulated on iTunes yet.  But stay tuned, she's getting really good.  And the look at the end of the video is priceless, where she says "I know you're filming this, I'm really good, I hope you recognize that."  

My apologies to the people that think that Alexis always has her hair beautiful for the camera or that she always wears her glasses - she was exerting her will not to wear her glasses on Thursday.  We let her pass on some requirements after a long week at school.

Conference in Boston

We don't usually have large conferences to discuss for kids with vision impairments, but here is one in our backyard (not literally but driving distance) 

Please feel free to tell other families!

We look forward to "flying" by car to the conference!

Dates...

So sometimes people wonder how I manage to be sane.  After you read this post, you might see into the inter-workings of my mind.

So, 10 years ago.  I was planning my wedding and there was 4/21 available or 4/28 available.  But since we were getting married in 2002, it made more "sense" to my mind that 4/28/02 was a better date.

Then fast forward to 2006 when we were getting scheduled for a c-section for Alexis.  They asked when we'd like to schedule it during week 37 of my pregnancy.  2/10/06 wasn't available because it was Matt's birthday.  But, 2/8/06 was available!  Yippee!!

Then as luck(?) would have it, a year and half later we were in the same situation with Jessica.  I was being scheduled for a c-section and the doctor didn't want to drive in over July 4th holiday for an emergency c-section so he said, pick a date before 7/4/07.  (Matt would have preferred 7/7/07 for the obvious reasons).  So, I picked 7/2/07 because it looked like 7/2/2007.   Take out of all of the 0s and it looks pretty.

Then, when they started talking about Jessica's discharge on Friday from the hospital after her heart surgery.  Well, Friday was 4/20/12.  A nice even number.  Seems like nothing significant.  But you'd have to know this small detail.  

Alexis was discharged from the NICU on 4/20/06.  6 years to the date that Alexis started her new life with us! And that Jessica has her heart repair and new heart exactly 6 years later.  

It makes this mommy heart happy.  Which may or may not show some of my sanity or otherwise.

Day 2 Post-Op

We are at home. 

I won't write much more, than she was a picture perfect case.  She was walking 6 hours after her surgery.  Made 2 laps around the CICU before being sent to the Cardiac ward, then a nap, then lots of laps of the whole hospital.  

This morning, we started with blood draw, then EKG, then field trip to XRay, then echo in our room.  Jessica was a super-star.  The only small problem that she was disagreeable for was tape removal around her neck IV.  She didn't like that, but I think she was actually hungry and tired.  

We ate lunch, decorated some of the Fenway Park model in the play room and then napped on the way home (Daddy was driving).  We are already at home taking interest in all of our things around the house.  In traditional Jessica fashion.  

So happy for us, thrilled with her progress and relieved.  Hopefully it'll continue to be quiet from her on.