9 Years Ago - and Some Updates

Nine years ago this time, I was being rushed into Boston from Lawrence General.  They couldn't find Baby B's heart beat.  Boston ended up diagnosing 'Baby B demise' - but they were afraid Baby A would be born as a 'result of the insult'.  (Gotta love hospital speak).

As a precaution, I was dosed with steroids to help Alexis' lung development (2 shots).  And after 4 or 5 days (who's counting), we were sent home (on bedrest) because it looked like Alexis was 'staying put' (my speak).

You can read more about Alexis' journey here:  http://ireport.cnn.com/docs/DOC-1194841

But what you don't know is some of the awesomeness that's been going on around here (yes, it's because I forget to write updates).  It's not that there isn't anything to update, there is - I just forget to tell it when it's relevant.

1) Alexis talks* and sings.  She's got this wonderful sing-song that she will make when she's in a good mood.  Imagine dolphin sounds + lullaby.  It's truly music to my ears.  The *talking part is thanks in part to her wonderful iPad and the app Touchchat.  Her favorites are to tell us what season they are working on at school (Christmas), tell folks what happened over the weekend (she's even told them that she had party + Patriots).  And she even (often) will tell you "I'm so over it".  Yes, she's 8 going on 13.  I'll try to record more of the singing. 

2) Alexis walks* like a champ.  She still uses her walker and she still knows she can do it by herself.  I think she's just rather have her walker to keep people out of her space :)  Actually you can see it in one of her pictures, she'll actually reach out of her walker to get to people to hug on them. 

3) Alexis eats like a champ.  I don't have to put an asterisk on that one. I knew we had been increasing her food (at my request), but I hadn't sat down to calculate calories.  By mouth, Alexis regularly eats 1200 calories each day. That's more than she's ever had by mouth- it's mostly baby food purees.  We'll confirm with the nutritionist in January, but I *think* we may be able to further reduce her g-tube formula. If that's the case, we'll still need the g-tube for water - because Alexis still can't drink enough (practicing on that).

4) Alexis joined Merrimack College Basketball Team:  http://www.merrimackathletics.com/sports/wbkb/2014-15/releases/2014121599205s

I should mostly say, we've all joined the Basketball Team. We attend the games (thankfully indoors), we bought the clothes, we look like we're regular fans - but we're not!  We're super-fans! Our team is fabulous, so truly fabulous. And Matt even showed off his NCAA Final Four Ring at the "Signing Day" events. We'll go to some practices between Christmas and New Year's. I'm sure you'll be hearing more and more about the team and the awesome coaches and players!

For now, squeeze your kids tight- they are all miracles. And remember kids and family, you may have lost. As we have, living as much in the present and hoping towards the future - can eventually be blessings!

Alexis with Team Impact: Merrimack College Women's Basketball Team

In no particular order -- here are all of the photos of yesterday with Team Impact!

Alexis joined the Merrimack College Women's Basketball Team.

We're so excited.

You can see Alexis is very happy to join her team.  Jessica is excited too!  Dad is very proud and Mom is very tired :)  No, I was excited too!  

Merry Christmas to us!!!!

You'll see what item will stop Jessica dead in her tracks..... look closely at the pictures.

The New Schnaderbeck Winter Sport

Well, technically, it was Matt's winter sport for probably 10 years (or more) of his life.

But my winter sport was swimming.

This year we have a new Family Winter Sport. 

Alexis is joining the Merrimack College Women's Basketball Team via Team Impact. Our dearest friends Brady, Cynthia and Keith have been part of Team Impact for almost 1 year (I think). 

When I originally signed up, I asked if we could join the band - but they said 'nope - has to be sports team'. (ouch, I played in the marching band.... boo, not a team)

So I said, we need an indoor sport because Alexis does not regulate body temperature (if it's hot outside, Alexis is melting; if it's cold outside, Alexis is cold and crying).  I also hoped we would get a sport that the ball was big enough for Alexis to be able to see and anticipate if it came near her.

My husband played basketball in college, so I was kind of hoping that we'd get matched up with Basketball - and we DID!!!!  For an hour yesterday, we met the head coach, one of the assistant coaches and 3 of the players.  They gave both Alexis and Jessica these items: t-shirt, rally towel and flag!
Today we attended our first game. We felt like we were immediately part of the action - Jessica was able to run court-side during warm-ups and get high-fives!
Alexis was a little grumpy - but that's a parent-problem (we're trying to wean her g-tube feeds) and she was hungry.  We fed her during pre-game and she was loving it!

The team played so hard, it's been so long since I watched a women's basketball team (maybe high school)?  It was tied until 5mins left.  And guess what - the power went out!  (The team had asked us if there was anything Alexis didn't like at all yesterday - we had said "dark").  Well, guess what - when the power goes out, it take about 15 seconds for the generators to kick in the back-up lights - the power came back on and then the lights had to power back on (ahhhhhhhhh I work in Philips Lighting - we'll have to get them some LED high bay fixtures soon)

It was fabulous to watch the team finish out the last 5 minutes and sadly they ended up losing by 1 point - and you could see the frustration, sadness, anger, dismay on the team's face. It's going to sound rude, but I was so content. Seeing them feel those emotions is absolutely natural - I've felt them before on Alexis' journey. The pain when you get a dreary diagnosis, the frustration when you're trying to get something arranged and the world is just getting in your way, the dismay when you realize that you're swimming upstream with healthcare system --- but it's the determination that those girls learn (like I have) to make a difference, to push through it, to learn from the challenge, to dig deep - whatever you want to call it.  But essentially, it's the ability to look beyond yourself and focus on the changeable. Being part of something bigger (Merrimack College Women's Basketball) reminds us and these awesome players of the joy and beauty in the world. I see it each day in Alexis' eyes. The players and team supporters who came after the game to roll the ball on the floor with Alexis meant the world to Alexis and Jessica.

Hopefully as the season moves on, we can return the kindness.

For more information:
Team Impact:  http://www.goteamimpact.org/
Merrimack College Women's Basketball: http://merrimackathletics.com/sports/wbkb/index 

Here's what NOT SLEEPING sounds like

We're alive.

Just a quick post to demonstrate what 

NOT SLEEPING 

sounds like in our house.

(yes the picture is dark.... I recorded from my phone in a dark room - the point is to listen to the SOUND)

This is not sleeping.

This was recorded in Alexis' room at 11:10pm.  This is a SLEEPING time.  She is NOT SLEEPING.

Not All Welcome Here....

So, today I was confronted with the brutal reality that I'm a mom of 2 special kids.

It wouldn't be enough for God to have granted me Alexis - a doll of sorts- non-verbal, non-ambulatory, but happy and lovable. Sure, glasses, hearing aids, g-tubes, CPAP and suction machine are just some of the 'standard issue' for a kid like her. Heck, in many ways, we got off easy because she only stops breathing at night and she only aspirates liquids (not her own saliva).

I as well got Version 2.0, Jessica. A doll in her own way. Social, engaging, eager, interesting but as the years have gone by more differences appear between her path and the path of her peers. Diagnosed with a pile of unknown disorders, supposedly related to her cardiac history, or other unknown genetic 'features' 

We've mulled over this information for 9months, so why share it now?  

Well, today was the official notice given by her camp "Not All Welcome Here".  Story goes like this, she started at camp July 7, after coming back from family vacation.

No issues reported until July 17 when caregiver who picked her up was told that Jessica needs some sensory toys at camp to help her get through the day. 

Provided sensory toys July 21.

Fast-forward, no additional comments until July 28, when I was called and asked what other consequences they can provide to Jessica because of her poor interactions with other campers (touching, kicking). I suggested additional sensory needs that she has and alternatives to where I think she is having issues with the camp routine. When arrived for pick-up, I was told in front of Jessica that she had additional issues. I suggested that she be given a time to play with play dough, use of her sticker reward chart and additional movement activities that will help her.

Then, Tuesday July 29. I bring in additional supports including simple reward sticker chart.  No phone call all day, so I assume better progress. When I went to pick up Jessica, I was sent with Jessica into the Directors office - where he and assistant director told me "She can't come back until she has a 1:1, here is the incident report from today "Where Jessica has pushed a girl into the swimming pool and collided with another girl."  To be honest, I can't remember what the sheet of paper said because a) they were discussing these things in front of Jessica, b) I was livid that they hadn't even implemented any of the suggestions and they hadn't even called me to warn me.

Then the kick in the guts that prompted this post,

Jessica was kicked out of camp. Not All Welcome Here.

Salem, NH Boys and Girls Club-- I'm sad for you. Jessica is a blessing, just like Alexis. I'm sad that your staff couldn't see past her special needs, see her love, build and cherish the beautiful spirit that resides in her soul. I'm sad because you couldn't help to make accommodations in your ways of working that would benefit more kids than Jessica, I'm sad because you couldn't spare time in your day to call a working parent to simply ask them to come into the office before getting Jessica.  I'm sad because you had the conversation about her behaviors twice with her present - not realizing that every time she is singled out as "different" or "not your kind" - her spirit is broken. I'm sad because no one offered a friendly good bye, but treated her and me more like a good-riddance. I'm sad for all the special kids that you can't open into your heart.  

I'm happy you have let us know "Not All Welcome Here" because we have learned on this journey as special needs parents - who our friends are and who has our backs. I will happily create a program for Jessica for the remainder of the summer that supports and loves all parts of her special spirit, the one you couldn't see.

Story Land NH - Our Commercial!

Yesterday, Story Land was filming an official commercial.  They even had 'paid' ride goers for their commercial and a video / photography crew.  It was a gorgeous weather day - so I can understand and imagine why they were eager to disrupt riders to get their filming done.  Thankfully the crowds had been at Story Land on Saturday and we almost had the place to ourselves on Sunday - we rode most of the rides without lines and really had a fabulous time!!!!

So, I took some videos.  I must share the most awesome ones first:

This is the family riding the Teacups.  Alexis sits with her legs straddling the center bar.  Matt and Jessica squished onto one side, Mom and phone/camera on the other side.  It's all Alexis - usually we get about 5 giggles out of her, but she was a little tired by the end of the day when we filmed this.

This is Alexis driving Mom on the Tractors.  It's like the cars or the antique cars, but the tractor wheel doesn't control anything and the buttons make sounds.  Jessica and Dad were riding another ride at the time, so Alexis and I were being farmers.  For folks who have farms or tractors, can you tell me - do you make as many adjustments as Alexis?  Also, do you spin the wheel that quickly? I'm thinking we should start teaching her to adjust this a bit in case she tries it on a real tractor.....  Love the finger/digit isolation on the button pressing!  She even chose to use her index finger on one of the times!!!

Here's Jessica at the big tree house / playground at the front of the park. I think she looks like a giant coming down the slide!  She's merely 47" but truly a wonderful girl in our eyes.

Matt and Jessica have added a new ride (it's not a new ride to the park, but a new ride for them to go on) - The Flying Fish. They both seem to enjoy it, but it basically makes me want to barfo just watching the video.

The final one - which is really hard to see anything about - The Roarasaurus - Story Land's new ride.  Wonderful, fun, fast, and exciting!  Only lasts about 90seconds, which is just enough and keeps the line moving pretty fast.  Jessica rode it 8 times on Saturday - but only 3 times yesterday.

No videos of Alexis + Jessica favorite ride - the Polar Coaster.  I'm not 'stupid' enough to take my camera on that ride - and since both need an adult in the row - we'll have to aim for a video when we have a friend to travel with us.  

Well, I hope you've enjoyed our videos - our version of the commercial.  Here are some still photos - just plain cuteness in my opinion:

It looks like they are both looking at Cinderella, right?  :-)

Because you always need your drink in photos......

Enjoying the Roarasaurus - yes, Jessica's eyes are closed, but I couldn't tell them to stop the ride so I could retake the picture :-)

Happy Monday!!!!  

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.