The Giggle War.... Who is laughing more?

Alexis wins hands down, but Jessica has a pretty fabulous time entertaining her sister.

So happy to see Alexis this happy and silly.  Most nights it happens as a last hurrah before sleep settles in. She's got some really awesome giggles -- although if you didn't hear the giggle after each squeal, you'd wonder if something was going horribly wrong.

I love how they have special ways to 'play' together.

Catherine

Additional Camp Photos

Here are our happy kids getting ready for the journey to NC.

Here is Jessica doing archery. She was really good and very focused! 

Here's Alexis bowling!  She really enjoyed all parts of this INDOOR activity. 

Here's Alexis horse back riding. She did not like this.  Her face doesn't show as much grumpy as she was. She hated hat + hood. She was grumpy about it.  But she looked good on the horse. 

No stop to a "Victory Junction" camp would be appropriate without JESSICA IN A RACE CAR!!! 

April Vacation!

We were lucky that this year's Massachusetts April School Vacation week coincided with one of the Victory Junction Family Weekends.

What is Victory Junction Family Weekend?  

Our Family Weekend sessions give our campers and camper families an opportunity to be able to experience the adventures of camp together. Our fall and spring is filled with specialized weekends focusing on specific disease groups and offer up to 32 families a chance to experience camp together each weekend.

http://victoryjunction.org/camp-programs.php

But that description doesn't really do it 'justice'.  Essentially all family is cared for at camp.

Accommodations: Spacious, Air-conditioned, Accessible Bathrooms attached. Awesome!  Each kid got to take home a cute bear and hand-knitted blanket.

Food:  Well, since I don't cook - I can't say better than my cooking.  But most awesome camp food ever - plentiful, yummy and downright awesome selections for Jessica, me and Matt!

Activities: Fishing, Archery, Horseback riding, Bowling, Performance Night, Power-dances after every meal to get the wiggles out, Crafts, Woodcrafts, massive Tree house, Putt-Putt (aka MiniGolf), Pool (not open when we were there), Fab Lab (hair, fingernails, make-up)

The reason I was interested in this:

1) It's in North Carolina, I'm from there. It means they also served SWEET tea with every meal.

2) It's NASCAR themed.  Every building had a theme and it was just so cool!

3) It specializes in kids like mine.

4) This particular weekend was Rock-n-Roll weekend!  

Which means, we got to dress up in 1950s clothes and we got to perform at the Talent Show.

I got poodle skirts for me and the girls and Matt tried to do a greaser thing with jeans and t-shirt.  On Saturday night, they had stage night.  Jessica sang a song (Roar by Katy Perry), Alexis played the piano and Dad and I danced and supported them. Afterwards, Matt played and sang a song with the guitar and Jessica danced.  Here are some photos.

This group is called "Chipettes and Alvin".  Jessica was not shy at all with the microphone. With her speech delay, she didn't know many of the words, but she knew the chorus!  Awesome Katy Perry "Roar!" Song.

 This group is called "King and Princess".  Somewhere along the way, Jessica learned to answer "Who is Daddy" with "Daddy is the king!"  So here is Matt playing/singing and Jessica dancing.

We had a lovely time.  Hopefully they'll let us come back sometime!!

Catherine

Changes...

Alexis is in a New School - Cotting

She's in their Preschool class, which is exciting because they have Music Therapy, Music Class, Art Class & Industrial Arts.

Alexis loves spinning things, but she doesn't care for soft things - and I'd consider clay quite soft. She's fully engaged in this - during the first week of her new school.

She also gets speech therapy, physical therapy, occupational therapy and Gym class as she did at Perkins. She misses her friends and teachers.  But she is enjoying sleeping in an extra 30mins in the morning and getting home earlier.

Jessica had her official first broken bone.  

It's the tip of the longest bone in her pinky finger. She was playing at school and a friend stepped on her hand. She's got a high pain threshold because she didn't cry, didn't insist on going to the nurse's office, or complain when she got home.  We got her casted and it's already off! She bejeweled it, yes a purple cast with jewels!  

One tough cookie!  

Unique and Rare! Rare Disease Day 2014

Today is Rare Disease Day.  See more here---http://globalgenes.org/

Alexis is so rare, she's unique. She just turned eight.  Alexis has had 6 different geneticists do genetic work-ups (including testing at Tufts, Boston Children’s, CHOP = Not CdL or SLO, Baylor =  Not CHARGE, MGH, Duke University = no Exome abnormalities, Genome still in progress).

The great thing about kids - they each are unique. So the best thing about Alexis, she's just that - Unique. Rare and Unique, genetically undiagnosed.

But full of giggles, smiles and joy of life.  I'll take it!

I loved this blog post this morning from my friend Susannah Fox from Pew Research, especially this quote - that I'm embellishing a bit here for emphasis:

#1 – don’t get between a mom and a piece of information she needs to make a decision about the health of her child.

1 Month Later :-) .... 8 years later

It's been a month since I have written on Schnaderbeck Blog:

since then I've been at home for Thanksgiving, in Atlanta for work, in Orlando for other work and will go to Troy NY for meetings this week.

December 15 is usually a hard day for me - today it was filled with cookies and  projects around the house -- we got about 8-10" of snow overnight and it seemed like a great day to stay inside.

8 years ago we were having a different kind of night.  Matt took me to Lawrence General, for what we thought would just be dehydration and much needed rest.  Instead, we found out that Kaitlyn had died and I was taken urgently to Tufts-New England Medical Center.  Alexis got lung steroid shots - two doses over 2 days and I was put on bedrest.  Thankfully I was able to stay at home and not have to do bed rest at the hospital.

Alexis "stayed put" and grew to her huge size of 4lbs before she was delivered by c-section 8 weeks later.

I call the time between December 15, 2005 and February 8, 2006 as the wodgy period of my life -- yes, wodgy is not a real word.  It's the only word I came up with for explaining how it feels to carry alive baby Alexis and dead baby Kaitlyn.

Alas spending the past few days with Alexis (she was sick) -- has reminded me how precious she really is and how her health is generally balanced on a sword edge.  

She's made a lot of great progress this year - before she recently got sick, she was eating about 50% of her calories by mouth (purees and thickened liquids).  She's also more social than ever, and clearly indicates her wants and needs very clearly.  She's been so exhausted the past few days, I've gotten some great cuddle naps with her (holding her on my lap and letting her body rest).  Not all almost 8 year olds will tolerate that.

Take care folks - hug your little and big ones tight this evening.  And this season!

Happy November!

I guess we are falling down on the job of keeping regular posts. 

I say "we" but we all know that the we can only be me and my multiple personalities.  

Here's a great photo I took tonight of the girls together:

The official story goes something like this:

Jessica will ask "Can I watch TV?"  I say, "After you read your sister 2 books. Go find 2 books to read to Alexis"  Jessica moves quickly but even more so because there is a fun reward of TV afterwards.

On Facebook, friends have suggested:

I am interrupting their rehearsal. Perhaps they are reading lines of Shakespeare and going over who gets to be Juliet and who will be Romeo this time.

I'm interrupting an interview.  Especially with Alexis' hand in the air like that. So maybe Jessica is taking this opportunity to review key moments in Alexis' life from her perspective.

Thinking about this seriously though, Jessica would be an intense interviewer - she digs deep into the truth of all matters - anyone who has conversed with her knows this.

I'm interrupting sisters reviewing their plans.  It could be plans to get up multiple times in the night, or maybe plans to get up super-early in the morning, or even Christmas plans.  Jessica would totally help Alexis with her Christmas gift list. 

In anyway, they were just cute sitting there seriously working together on a Friday night.  

Happy November!