Schnaderbeck Family

Help Alexis' School - Boston Marathon Team

2012-01-26T21:03:00.000-05:00

Hi Everyone! I'm hoping you are doing really well. In New England we are having our mildest winter on the "Catherine record." Of course, as soon as I publish this to the world, it'll snow 2 feet every other day - like we have previously gotten.

So, I'm hoping you can help us out. Alexis attends Perkins School for the Blind.

Perkins has a Perkins Marathon Team for the Boston Marathon.

One of my coworkers signed up for the race in Alexis' honor. So now I need your help in 82 days or less to raise $5000. For local folks, we'll be having restaurants and other activities - so prepare yourself for monthly meals with me and the family :-)

For folks further away, please donate through the following link

http://www.crowdrise.com/perkinsmarathonteam/fundraiser/stephaniespindler

(please note that it does say "Stephanie Spindler" as she is the Marathoner, I'm the mom, coworker and blogger. I'll be cheering her on as she runs the 26.2 miles).

The Boston Marathon is Monday, April 16 - which is 82 days from now.

Since Stephanie and I work in Finance, we figured out that we need to raise $5000, we need to raise $61 per day. We have already raised $450, so we really only need $55/day.

So, I'll be posting our regular updates -- please know that all that we raise will help kids like Alexis -- both on campus and around the world.

Filming Day 2

2012-01-07T07:06:00.000-05:00

Filming Day 2 -

The small invasion started at my house around 7:30am. We had 3 people from California, 2 people from NY, 5 people from Massachusetts. So 10 people to invade, it's great that we moved into a larger house last year. They would have been swamped in our old house. Very cozy, especially since in our old house the piano took up 1/2 of the living room :-)

So, how did it go? It went really well, no major issues. The "talent" (the CEO, Alexis and me) did fine. Alexis did remarkably well reading her script - just kidding. She didn't have a script. But it was funny they kept putting her favorite toys around on the floor and she would leave where they were trying to film her so that she could play with her favorite ones. Finally I told them if they wanted to show toys around the room that they needed to get some of Jessica's toys (that Alexis doesn't take interest in yet). That seemed to work.

So here are some shots of the rooms after they had set them up, it really doesn't do justice to what the house looked like as they were filming. They usually would set up about 6-7 different lights - including a fake sun in the front window and then a fake sun in the back porch. It was really funny. They were looking for a "pop" on the stove in the far field. It was fun to see what it looks like from the camera angle. I'll have to start paying more attention in TV and movies now.

This is the shot set up for Jeff Cassis, the CEO of Philips Color Kinetics. They were setting up the lighting in the background for this shot.

This looks like a normal boring picture of sunlight coming in. But it's not - it's FAKE sun. It was overcast and this sun was made from a HUGE light outside the window (if you notice the dirty window, please just close your eyes :) )

This is the stand in for Jeff so they can make sure the props in the background look nice.

The is the adult furniture arrangement they made for my furniture and tables (and flower arrangements). It is quite funny, we were joking the whole day with the set designer that my house is decorated in the style of "early childhood". We have almost ever toy known to man. :-)

This is another shot from the camera angle for Jeff's set up.

A shot from me sitting on the couch.

This is the team setting up the "stage" for my interview. I will sit in the black chair, I added the little boxes in front of my feet since I'm too short to sit in our bar stools. :-)

This is the view from the camera looking over my bar stool into the kitchen for the "background" of my shot. They even put nice things in the background to look at and lights on the back deck to create sun and shadows. All very fun.

This was the set up for Alexis getting filmed eating her lunch. She was very curious to why they were filming eating time. So much fun. She would look at the cameras wondering "what is my mom doing to me this week?"

They took over the "dining" room for equipment and data management. They had 4 computers and 6 hard-drives running to download the video as they were filming it. All very very funny. And then they don't let the 6 hard-drives travel together to the studio for editing. Safety first with the data!

As you can see it was a fun day - a different day than my usual day in Philips doing either finance or creative projects for children with special needs. All fun and the team sent to my house was really awesome!

Activities today

2012-01-05T21:27:00.002-05:00

Today was another fun day in our lives. Alexis is going to be in her 3rd professional video.

The first one was: http://bit.ly/alexis

The second one was: http://www.youtube.com/watch?v=f1iFKGQ-CgE

The third one is going to show more about the Lighting product that we have been developing with Philips Color Kinetics and Perkins School for the Blind.

Here are some lousy photos from my cell phone of the "invasion" at Alexis' school - Perkins School for the Blind. Everyone was really awesome and very helpful. It was very interesting to see how they sprawled over the classrooms though.

Tomorrow should be even more interesting, as they will be at our house.... Between watching them in amazement, I'll try to remember to take some photos.

Jessica Dare Devil Video

2011-12-31T23:15:00.001-05:00

We tell people that Jessica is fearless. We don't often capture it on video though. Tonight, Matt and Jessica demonstrated some of her "dare devil" skills.

Hope you enjoy it! No children were harmed in the filming of this video.

http://youtu.be/2EWu75ZnJUs

New Job for Jessica

2011-12-18T21:32:00.002-05:00

Name: Jessica Schnaderbeck, impersonating Tom Brady

Position: Quarterback, or just half pint

Height: 39"

Weight: 31lbs

Record: Unstoppable

Best Moves on the Football Field: Can walk/run under all of the legs of the players, would go unnoticed when until she scored all of the touchdowns

Worst Moves on the Football field: Would score touchdowns for both teams.

New Walking Girl

2011-12-05T20:26:00.001-05:00

http://youtu.be/lk8r4MwPK5c

Alexis working it at PT tonight.

For Non-Facebook Readers

2011-11-27T21:12:00.001-05:00

Hi Non-Facebook Readers,

Here are the photos from Alyssa Proia Photography:

http://www.alyssaphotography.com/

Photo Day

2011-11-26T22:50:00.001-05:00

We've done family photos in the past, but not recently at all (I think Jessica was crawling the last time we did them)

Here are the ones we did in October. I think they are wonderful. Now to figure out which ones to throw out.

https://www.facebook.com/media/set/?set=a.10150419850538194.385298.160150973193&type=3&saved

(I don't know whether non-facebook people will be able to see these... I hope you can, they are fantastic)

I am not biased. :-)
Catherine

P.S. Jessica's recovery from the cath was almost immediate. She was happy to have medicine on Tuesday and Wednesday morning. But since then, no medicine and she's been running around like nothing ever happened to her. Hopefully the open heart surgery will go as speedily, whenever it's scheduled.

The Day - Things to be Thankful for!

2011-11-22T19:27:00.001-05:00

Past 24 hours.

Monday 7:30pm

Start convincing Jessica to go to sleep in prep for busy day today.

Monday 8pm

In bed, nearly asleep.

Monday 9pm

I look at my watch and say, "it would be really great to go up to sleep now, I would feel great tomorrow."

Monday 10:30pm

Time I actually get off couch.

Monday 10:31pm

Unfortunately wake up Alexis when trying to put her CPAP on. She wakes up screaming, very unhappy about being awake.

Monday 11:15pm

Shut off TV upstairs, Alexis is falling back asleep but not fully asleep (not asleep enough for CPAP).

Text Matt and tell him he may have to CPAP Alexis because I'll be sleeping.

Monday 11:30pm

I'm asleep.

Tuesday 12:15am

Alexis asleep but snoring/apnea (she has sleep apnea - so I have to wake up enough to put on her CPAP).

Tuesday 2am

Matt returns home (see facebook page for pictures from the Patriots football game)

Tuesday 5:10am

I wake up in a panic. I think the alarm clock says 6:10am. I can not read my alarm clock numbers without my glasses on. It was 5:10am, WONDERFUL. I woke up 5 mins before my alarm clock. I get up, eat breakfast (since I won't be able to eat in front of Jessica when she wakes up).

Tuesday 5:30am

Matt awake, to help Jessica up. Jessica ready to go in super-fast time, she is wearing her pajamas to the hospital.

Tuesday 6:40am

We arrive in record speed at the hospital, less traffic than Monday since we left 30mins earlier.

Tuesday 8:30am

They call Jessica's name and we go back (note that we were told to arrive at 7:15am.... growl)

Tuesday 9:30am

Dr comes out to talk to me (Matt at home to get Alexis on the school bus and then to avoid traffic). Dr very very uncomfortable with proceeding with catheterization because he isn't sure that it can fix what he sees on TEE (ultrasound that goes down her throat). We call Matt and Dr talks to Matt. We agree that we want Dr to try to fix the ASD with catheterization because it's the least impact on Jessica's health.

Tuesday 11am

Dr comes back out to talk. I had just found out where Matt was, in the hospital lobby. Send him quickly up to 6 South for Dr consult. Dr goes through what he tried to do, but said he was not comfortable at all with leaving in a device - that it had the potential to cause the outside wall of her heart to rupture (at some point in the future, he was afraid) and that it would still leave a sizable hole in her heart which could deteriorate over time. We agree that the only thing to be done next is to decide when to schedule open heart surgery.

Tuesday 12pm

We can go back to see Jessica in recovery. Jessica reacts to versed / sedation drugs "uniquely". We only know how Alexis reacts to meds and that is very peacefully. Too peacefully. Alexis on sedation drugs is sometimes a little too peacefully (she forgets to breathe, too relaxed). Jessica is the flip side, too agitated. It took both me and Matt to try to comfort her and keep her consoled. Once she could have a popsicle she was much better :-) Nothing convinces me or Jessica to be happier than some sweets :)

Tuesday 1pm

Agitation gone, but Jessica wants to wiggle. Me and Matt are assigned to "no-wiggle" patrol. We said "Jessica keep your legs still about 10,000 times" (EACH). She was obviously feeling fine.

Tuesday 3pm

We can go for a walk. We can go to the car. We can leave the hospital. Thankfully we didn't need to stay overnight because Jessica didn't have a device inserted :( We would have liked to have a device inserted and not leave the hospital knowing that Jessica needs open heart surgery to repair her ASD.

But no matter what, Jessica did great with the surgery, she showed how brave she is, they named her the "Mayor" because she was talking to EVERYONE in the hospital. We don't like the idea of open heart surgery, but who does? We are in a great place (Boston), we are in great hands (Boston doctors) and we are going to do just fine trusting them with Jessica.

Thanks for all of your thoughts, prayers and concern over the past couple of days,

Catherine

Jessica getting ready. So CUTE!

PS. The attached video is about ASD repairs via catheterization (what we tried to do today for Jessica):

http://www.youtube.com/watch?v=kPfH-D2O9mA

Jessica's Day

2011-11-21T20:55:00.001-05:00

Today was Pre-Op for Jessica's Cardiac Cath.

We were told to arrive at 7:30, we got there 7:35 (traffic on 93 South). Then we were expected to be there between 6-8 hours depending on how things were moving along.

We were lucky because

a) the cardiologist did not want to see us (he had just seen us in June for Alexis' follow-up appt)

b) the cardiologist did not want to do another echo (he had as much information as he could see from her echo in Sept 2010)

c) the people actually moved us along

Thankfully all of the people in the waiting room were entertained by singing, dancing, jumping, and other things - like washing down all of the chairs (she felt the urge to clean). The cleaning urge does not come from me. But I imagine the jumping around like a crazy animal might come from me. Thankfully about the time we gave up and went for lunch, they decided they had "enough" and they called us back to tell us

Arrive 7:15am (that's really early... especially when we are 30miles away - sometimes 30mins or 2 hours)

Don't eat after 11:15pm (I'm not waking her up at 11:16 to see if she's hungry, because if she is, she can't have ANYTHING)

Don't drink after 5:15am (this one concerns me, do I let her drink something at 5:15 or just go to the hospital)

Yep. That's our program.

Here is a picture of Jessica being a grump in front of the Xray machine.

4 yrs, 4 months

2011-11-20T07:54:00.000-05:00

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)

2011-08-07T09:35:00.000-04:00

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)

2011-08-06T13:00:00.000-04:00

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

2011-08-05T12:17:00.000-04:00

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

2011-07-08T07:27:00.002-04:00

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

2011-06-11T22:38:00.000-04:00

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)

2011-06-06T22:04:00.001-04:00

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!!!!

Upcoming Event - June 14th

2011-05-23T23:50:00.000-04:00

Dear Friends, Family and Colleagues –

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 email me and I'll send you the file to attach to the receipt.
Between 4-9pm we plan to raffle off donated items including one pair of Patriots Preseason tickets and autographed Jed Lowrie baseball.

We have a Facebook page that we’ll update with information about the Event: http://www.facebook.com/#!/event.php?eid=198417110191881

Thank you!
Catherine

Super Sized Giggles and Squeals

2011-05-08T23:01:00.000-04:00

Today (for Mother's Day), we went to Canobie Lake Park. It's always been less than 15minutes from our house, now it's less than 7mins away.

Since it was Mother's Day, us Moms got in for free (and free lunch)!

However, I would have paid $1,000,000 for the giggle-squeal monster sitting beside me on this ride. Jessica, she's a thrill seeker and enjoys the rides.

BUT ALEXIS, just gets PURE JOY from them! She squealed and giggled the whole ride!!!

Never knew that such a simple set of electrons (running the ride) could make Alexis turn into a Giggle Machine! She had a great time.

She rode a space ship, a boat, a jeep, an antique car (Jessica drove), a carousel, a spinning boat, a train, and the most fun Dragon Coaster!

Now we know, just take Alexis on the Dragon Coaster for tons of giggles! She loved it! Absolutely loved it!

And for a Jessica summary, she rode all of the same rides Alexis did plus: the swings and the kiddie sized bumper cars. She drives like me but she did give me and Matt a good giggle - she kept running into already stopped cars!

I hope all you mothers are having a great Mother's day! Or better yet, that you are already sleeping!

I'll try to get some of the pictures from Matt's phone for the day.

Alexis Bedtime OT/PT Activities

2011-05-07T20:15:00.000-04:00

Warning - A 3 minute video.
But showing some of Alexis' new found skills...
Pulling up on her crib rails and playing with the wall.
And being a silly little girl with the camera. Wonderful bedtime moments.

http://www.youtube.com/watch?v=FgsFnj2TMCM

Alexis Bedtime Antics - Giggle Reel

2011-05-07T19:27:00.000-04:00

When we put Alexis to bed, she had a fit - a GIGGLE fit! :)
See the video and have a great giggle. Best Mother's Day gift ever!

http://www.youtube.com/watch?v=It6jxKCR_hQ

April Happenings

2011-05-01T20:37:00.000-04:00

Dressed and sort of ready for Easter Service...

Somewhat paying attention....

Somewhat tolerating more photos....

See how Matt is so well behaved, too bad his 3 children aren't paying any attention....

And then 2 weren't....

And now only 1 misbehaving... but still precious and cute...

Breakfast afterwards, a series of shots in about 30 seconds...

Our Easter morning - too bad I didn't get any pictures of my sister with the kids. It was pretty hectic at church and Jessica obviously wanted breakfast quickly!!!
They were cute and somewhat well behaved. Good thing their cuteness trumps their misbehaving.

Catherine

School Vacation Week

2011-04-30T20:56:00.000-04:00

In the last photo post, I did warn you that I'm out of order, right?

Over school vacation week, Alexis, Jessica, Noralea (my sister), Fionna (my niece) and I went roller skating with Eileen Lee's medically fragile group. We got to skate / stroller on the hardwood for 2 hours. Because I thought Alexis could "do it", we tried it. She was walking / moving just fine, just very unsure of herself.

She was much happier stroller-rolling :)

Lousy photos from my cell phone...

Jessica showing off her love of pink....

Alexis riding the carousel at Salem Mall. She was having a great time!

Going Backwards in Time

2011-04-30T20:50:00.000-04:00

Thanks to Cynthia for taking these wonderful photos.
If you are facebook friends and you have wandered through my profile, you've already seen these. If not, you're seeing them for the first time..... Enjoy.
We had a terrific time Easter Egg hunting at Brady's house!

Work Related - but not! Fantastic "HealWell" Product

2011-04-15T16:37:00.000-04:00

I was browsing our corporate internet today and I found this link.
I am BLOWN away by the possibilities for hospitals as well as in our homes for kiddos with circadian rhythm problems.
I would love to help install this in every hospital room we ever go into, into every bedroom our kids sleep in, and make sure that our precious children get their good sleep! (and the parents too!)

http://www.youtube.com/user/PhilipsLighting#p/u/7/gEXtd1l8ECQ

Absolutely THRILLED with the possibilities of how we can improve the hospital experience!!!!

Recipe for Success

2011-03-22T08:41:00.000-04:00

Recipe

1. Install Fantastic New Philips Fluoroscopy at Children’s Hospital in Boston.
2. Have Alexis inspect the assembly of product in advance of the study.

3. Include dash of Happy Mom.
4. Take study and identify that Alexis is CLEAR FOR “Honey-Thick” Liquids.

What does this recipe make?
It makes it so that we can work on liquids by mouth for Alexis. It means we are able to start a journey that we thought we would be on 4 years ago when Alexis had her g-tube installed and we were discharged from the NICU. We’re incredibly happy with this result and look forward to teaching Alexis that she can drink liquids again.

Alexis Doctor Updates - 2011

2011-03-17T22:36:00.000-04:00

So far this year we have managed to drag Alexis to several basic follow up appointments:
January 4: Orthopedics - nothing new. Wants her feet / ankles to be stretched more because he feels she is is too tight in that area.
January 11: ENT - still amazed she has been adhering to her CPAP use for so long. Also impressed that she hasn't had any hospital admissions for infections (KNOCK on wood!) He said that basically at any point now, we could request him to schedule the repair of her right sided choanal atresia. This will be our task to "research" at this year's CHARGE Syndrome conference - how many people have single sided choanal atresia. Then we will find out which ones have gotten it repaired, what the complications were, when they did it, and whether it helped them eat, breathe and coordinate.
February 3: GI - Dr was eager to finish diagnosing Alexis' needs with more testing. Final test that we needed to do was a glucose test which would help identify if she had GI issues. See follow up at bottom of the page.
February 14: Genetics - Dr offered for Alexis to be tested with more in depth genetic / genome testing available at Children's Hospital because of $25M donation from Manton Foundation to study rare diseases. Since we joke that Alexis has her own syndrome, I suppose that is rare enough and interesting enough for them.
February 25: GI Glucose Test: Alexis FAILED a test. They called it. What did they have to call? Well, basically she was NPO (no food) and so they got her an IV, gave her a bolus of sugar water and watched her blood glucose every 30minutes. So, Alexis ended up spiking to 200 (which is really bad). They halted the study and told her to behave herself. :-) In all seriousness, they were very scared for her. The GI doctor was paged and they decided to stop the testing. Matt fed her her normal g-tube food and Alexis' blood glucose returned to normal range.

So, this means we have a new diagnosis. It's got a great name: DUMPING SYNDROME

Gastric dumping syndrome, or rapid gastric emptying is a condition where ingested foods bypass the stomach too rapidly and enter the small intestine largely undigested. "Early" dumping begins concurrently or immediately succeeding a meal. Symptoms of early dumping include nausea, vomiting, bloating, cramping, diarrhea, dizziness and fatigue. "Late" dumping happens 1 to 3 hours after eating. Symptoms of late dumping include weakness, sweating, and dizziness.

My understanding is Alexis needs slow releasing carbs to keep her glucose in balance and needs to avoid SUGAR products. This obviously impacts her diet greatly, given that Alexis actually enjoys sugar. We will have to find natural sweeteners that don't "undo" the effect of her good diet changes.

This probably explains many of Alexis' high energy and low energy periods throughout the day - truly blood glucose working against her. We are working with her Nutritionist to see what we can resolve by changing her diet.
Naturally we're not thrilled to add to the list of diagnoses, but obviously thrilled to make sure Alexis has a safe lifestyle. The sugar highs were obviously quite dangerous.

March 1: Annual physical with local pediatrician. A good appointment. I was in Seattle, but Matt handled everything quite well - including shots!

March 8: Eye Doctor - who thought Alexis' glasses prescription are actually a little too strong! Fantastic news! Alexis hated the appointment because they dialated her eyes and she hates hates hates that. Matt did a fantastic job at that appointment as well!

Future appointments:
March 21: Nutrition to discuss Alexis' diet changes, Modified Barium Swallow test to identify if she still aspirates liquids
May 18: Cardiology follow-up from her Heart Repair (June 2010)
May 25: Augmentative Communication Program (Children's Hospital)

Alexis' California PenPal - recognized by Congress :)

2011-03-16T16:57:00.002-04:00

http://mightymaxupdate.blogspot.com/2011/03/congressman-papa-honors-dd-awareness.html

Congressman "Papa" honors DD Awareness Month.

Maxwell's grandfather, Congressman David McKinley (R-WV), today recognized March Developmental Disability Awareness Month before his colleagues in the U.S. House.

He honored all individuals with developmental disabilities, including Mighty Max, and encouraged respect, inclusion and opportunities for all.

ABSOLUTELY FANTASTIC!!!! Thank you Congressman McKinley, Amy and most wonderfully Mighty Max!!!!

2x6 Steps Along the Journey

2011-03-11T22:06:00.000-05:00

Today Alexis had "after-school PT" at Northeast Rehab in Salem NH.
We've been going there since Alexis was about 8months old. Originally we started there in aquatic PT in the heated swimming pool. We all loved it.
When Alexis turned 3 and went to Perkins full time, we couldn't accomodate aquatic PT in her hectic schedule.
So we switched to Land PT. (PT on the land, obviously).

So we've been spending our Friday afternoons doing PT for 2 years, 1 month and 3 days. Basically 80+ appointments (in addition to her PT/OT/Speech etc at School).

TODAY, Alexis showed some remarkable fantastic and wonderful skills!
She walked without any assistance twice - about 6 steps each time. You can not even imagine the GIDDINESS that we (her PT and I) had on her huge milestone. Alexis was rewarded and congratulated. She was the super star, I think most of the in-patients heard us cheer for Alexis.
After demo'ing these talents and then getting rewarded - she refused to put her feet down anymore. STUBBORN! (but we know where she gets that from)

This is fantastic as we know, first steps are small steps, then they get bigger, and bigger and bigger and then we will have to baby-proof our house !!!

So if you see Alexis running around the hosptial, her school or in the neighborhood - you'll know THIS WAS THE DAY!!! Absolutely fantastic way to end a very hectic week for the family.

Catherine

Alexis' Story in the Boston Newspapers - Lobbying for Deafblind Services

2011-03-09T23:42:00.000-05:00

Because of Alexis, our family has entered into the world of deaf-blindness and medical needs.
Someone said today, our son has a special family. So instead of saying I have a special needs child, I am going to start saying
"WE ARE A SPECIAL FAMILY".

Because of our special family status - I was asked to go to speak at Massachusetts State House. I made people cry, I'll readily admit that.  Two total minutes of talking and not a dry eye in the place. I realed the audience in with my well practiced and appropriately placed voice cracks (just kidding, I was trying hard not to cry myself). Nothing says tear jerker like balling speaker.

I wrote the "speech" at the coffee shop across the street, which is pretty bad planning on my part. Basically I said something like this (I don't remember what I said word for word because I only wrote a couple of words down in my "speech")
"
I brought a photo of my 5 year old, Alexis. She wears cute little pink glasses and hearing aids, attends Perkins and is learning her numbers, letters and colors - everything that a normal preschooler would do. She brightens the lives of everyone she meets.
But her life isn't really that simple. Alexis fought to be here. Her identical twin sister died when I was pregnant. Alexis had to fight for her life.   Because she fought for her life, we fight for her life, we fight for her safety, and we fight for her services.
Please do whatever you can to make sure services exists for Alexis as she needs the opportunities our world can offer her. She is fighting to be here with us.
"

And then I ran to my seat.
Here is an official newspaper version of that story
http://www.boston.com/news/local/massachusetts/articles/2011/03/09/deaf_blind_residents_ask_mass_to_keep_services/

Since I'm sure you all clicked on the link and then came back to my blog. I wanted to add a small editorial to the article - Jaimi Lard. So in the United States, at some point in our public education process, we all study Helen Keller. We may even read books about her, or just watch a movie. But the point is more Americans probably name Helen Keller than we know Presidents. If you've never had the opportunity to see a person communicate with tacticle sign - you aren't living. It should be on everyone's bucket list. Sign Language was developed for sighted hearing impaired people. It was modified for deaf-blind to be a means of communication in the "hands". When I first saw Jaimi at Perkins, I cried. I think Alexis was 2 or 2.5 (still very little). Seeing Jaimi told me "Alexis has a great future in front of her with the right services". And everytime I see Jaimi and others using tactile sign - I am in tears. It's a very specialized language developed to help people reach their full potential. It is absolutely amazing.
(here is more about Jaimi - http://www.perkins.org/news-events/news/expired/lardhero.html)

I am absolutely thrilled that Alexis' story is in the same article with Jaimi. This is the potential future for Alexis and I'm thrilled that I can help make the road for Alexis.

Jessica Ski Bunny

2011-02-23T21:56:00.000-05:00

Not everyone can pull off this outfit. But our little ski bunny can....

Jessica getting psyched for skiing.

Jessica skiing. (Me running behind her trying not to allow her to crash into anyone or anything!)

It's more of a challenge than you would think.... :) I'm not on skis though.

After 6 runs on the bunny hill, she wanted to go on the real mountain- that's my girl. Next time we go up!

Belated Christmas Picture

2011-02-19T13:05:00.000-05:00

Alexis came to Philips for Family Fun Day (Open House).
She was photographed with Santa (don't tell Alexis but he works at Philips too!)
She looks like a GIANT to us in this picture.
Absolutely ADORABLE!!! She's a big 5 year old now!
Catherine

Alexis Birthday!!!

2011-02-08T08:53:00.001-05:00

Happy 5th Birthday little GIRL Alexis!!!
5 years ago today at 8:53am, we welcomed you into our lives.... and spent 72 days in the NICU to get you in order enough to get home.
4 years ago, we spent your birthday in the hospital for 20 days trying to figure out your breathing / airway issues.
3 years ago, we were keeping you healthy in preparation for your tonsil removal surgery.
2 years ago, we kept it low key to make sure you didn't get sick in the winter.
1 year ago, we celebrated your beautiful life with friends at the Children's Museum in Boston.
This year, we had a bash at the new house. And you giggled and giggled and giggled! You were enjoying life and had a blast! We love you little girl Alexis. You make us proud to be your parents. You light up a room, you work the room and you melt hearts along the way. You are silly, stubborn, smart and loving. Keep up the fight for life, we are all here cheering you on! 7 surgeries in 5 years and CPAP nightly for 4 years - we'll move mountains for you!
Much love, Mom, Dad & Jessica!

Alexis Birthday Party

2011-02-06T20:21:00.000-05:00

Here are some pictures of Alexis' birthday party.....
Catherine

Schnaderbeck Sundays

2011-02-06T19:48:00.002-05:00

Don't let the outfits fool you, it's Alexis taking on the Speedy Sled Hill now.

http://www.youtube.com/catroseschn#p/u/1/ZHHuydFDFqk

http://www.youtube.com/watch?v=oQLy2qfkGWU

A little growl and raspberry means mixed results. But she did the after run camera interview. :-)

The raspberry at the end of the video indicates that her run was a success. So she goes again.

Jessica Happy at the End of Sledding with Daddy

2011-01-30T18:23:00.000-05:00

Here is Jessica sledding with Daddy for the first run on the revised bob sled hill. She really enjoys it at the end.
You can see we are trying to make the most of the snow. Evidently we'll get some more this week. I wonder where we will put it.
Catherine
http://www.youtube.com/watch?v=ngvdd8QoBJ4

Jessica Bobsledding

2011-01-30T18:10:00.000-05:00

This is Catherine and Jessica enjoying the bobsled run this afternoon.
http://www.youtube.com/watch?v=u2qWvBf8sew

This is Matt-cam view of the bobsled run.
http://www.youtube.com/watch?v=vF6r7xW_kK4

2 Weeks Later - 2 More Feet of Snow - 2 Olympic Venues

2011-01-29T20:51:00.000-05:00

Matt carved out a bobsled run on the side of our driveway. We didn't manage to get Jessica on video. She did ride with Mommy once, but then went back inside.
Here is the video of Matthew enjoying his bob sled course. Since we went to Lake Placid in August, I guess we have Olympic 'fever' and are now starting to build venues on our property (see other videos of downhill skiing, now bobsledding, and if Matt doesn't clean the snow at the bottom of the driveway... ice skating). Matt is now suggesting the steps to the deck would make an excellent ski jump.
http://www.youtube.com/watch?v=lCryLq0wVJs

Here is the video of my bobsled run. I look a lot cuter :) I appreciate Matt making this for me, since I am not brave enough to try the ski-through-trees-run. And for sure, if I could survive getting down the mountain it would probably take me all day to get back up the mountain.
http://www.youtube.com/watch?v=mQ6vZ67_7fk

Catherine

Snow Daze / Snow Days

2011-01-21T22:37:00.000-05:00

So evidently the past couple of years of "light snow" has caught up with Massachusetts.
In the past 9 days, we've probably gotten 2.5' of snow. 20" one morning, then 6" here and 6" there. What's a couple of piles of snow between friends.

So the 20" snow storm basically caused all of MA to be home-bound for the day. It was good, the plows worked hard and we all stayed out of their way.

The next 6" happened while we were all at school / work. So besides having plenty to shovel, there was no impact to commuting or school schedules (I think they were forecasting a dusting).

Then today, they were forecasting another 5-8" and we probably got 6". Well, guess what? Alexis' bus didn't want to risk driving her to school in the snow storm (the normal commute could have been much much longer). So Alexis had a "take your daughter to work day with Mom and Dad".

Matt watched Alexis during the morning, she played with her toys, then she worked on his computer. (I'm curious if he'll ever find all of the settings that she changed).
Matt brought Alexis over to Philips for lunch and then she stayed with me for the afternoon.
Here is a great picture of Alexis pulling the "men" (as Jessica calls them) off of the file cabinet. It's magic! The men are magnetic (for those at home.... don't try this with just any ole set of toys... only the magnetic ones will work on the file cabinet). It was FUN! Alexis was entertained especially when she figured out that if she pulled them all off and threw them on the floor, I would pick them up. (We call that game "drop it"). It's more exhausting for moms and dads than the kids.

Then I asked Alexis to help me with my work, instead of just playing the whole time. I figured if she helped me with my work, we'd get done faster and she already knows her numbers and letters, I'm sure she would do a good job! This is what she did instead!

We'll be deducting this from her pay for sure! Sleeping on the job! Silly!

So this is how we spend our winters in MA. SNOW DAZE....

Matt and Jessica Sledding down the Black Diamond in the Front Yard

2011-01-15T13:39:00.000-05:00

Here is a video of Matt and Jessica slowly sledding down the black diamond course in the front yard. As you can see, we have some "extra" snow - courtesy of 20" of snow that fell on Wednesday. Matt should get a chance to enjoy some of it since our snow blower died about 1/3 of the way through the clean-up (which means Matt became a snow lifter / shoveler). Exhausting!
It was fun to be out in the snow. Jessica wasn't so thrilled, but she had a good time. She does look a little like a pink marshmallow.
Catherine
http://www.youtube.com/watch?v=hXWsyQeDd1c

Matt Skis Mt Schnaderbeck

2011-01-15T13:35:00.000-05:00

Matt created a ski run through the trees in the backyard.
Here is Matt skiing the second time. Because there is no automatic lift to return you to the top of the mountain, it was only a 3 run day. But there was 20" of fresh powder and a very happy Matthew!
He's using his "stick" skis (vintage 1993) and no poles (he doesn't have an extra set at the house). Pretty talented!
Catherine
http://www.youtube.com/watch?v=7TkrbSInKo8

Helpful "Care Binder" from Children's Hospital of Philadelphia

2011-01-11T17:05:00.000-05:00

I found this link today doing some research about being an organized parent of special needs children.
I think it's fantastic, a comprehensive listing of documents that may be helpful in organizing all of the medical statistics and reports that we have for our children or family.
http://www.chop.edu/visitors/family-centered-care/tools-for-families/family-centered-care-care-binders.html

First Studio Portraits for the Whole Familiy

2011-01-04T20:21:00.000-05:00

Thanks to my Philips family -- they gave me Studio Portraits to Sears.
You might be able to tell when Jessica "expired"... from the photo process.
http://www.SearsPhotos.com/ViewSharedAlbum.aspx?ShareID=d031335a-5438-4beb-a4ca-6d2187a026b7

Enjoy and please let me know if you have favorites! I hate picking out photos!
Catherine

Christmas Morning Video #2

2010-12-31T11:27:00.001-05:00

Christmas Morning Video #2

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

Christmas Morning Video #1

2010-12-31T05:00:00.004-05:00

Christmas Morning Video #1

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

December Photos

2010-12-30T23:00:00.002-05:00

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

2010-12-30T17:00:00.002-05:00

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

2010-12-16T22:48:00.000-05:00

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

2010-12-12T20:00:00.001-05:00

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

2010-12-12T11:05:00.000-05:00

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

2010-12-12T07:59:00.000-05:00

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?

2010-12-06T11:04:00.000-05:00

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

2010-11-01T17:00:00.002-04:00

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

2010-11-01T16:12:00.001-04:00

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!

2010-09-20T21:49:00.000-04:00

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?

2010-09-15T22:06:00.001-04:00

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

2010-09-02T22:45:00.001-04:00

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

2010-09-02T21:30:00.000-04:00

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)

2010-09-02T21:03:00.003-04:00

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

2010-08-12T22:06:00.000-04:00

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

2010-08-10T07:35:00.000-04:00

Fastest time from Movie to Blog (3 mins).

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

Family Fun Day at Perkins

2010-08-01T22:14:00.000-04:00

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

2010-08-01T22:06:00.000-04:00

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

2010-06-25T18:09:00.000-04:00

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!

Alexis Day 3 after Heart Catheterization

2010-06-25T17:09:00.001-04:00

Alexis was discharged from the hospital on Wednesday and we've spent Thursday and Friday -- doing very little. So, Alexis cleaned out papers that had taken over the house, she did some laundry, she did the dishes, she had some breakfast, lunch and dinner and she took some naps. Some of the time we did get to play with our favorite toys which made us very happy!

On Thursday, we went to visit Jessica at her last Early Intervention Playgroup time. Alexis had previously gone to that playgroup, so she was happy to join them for free play and see some of her favorite teachers. They were all amazed that Alexis had just had heart surgery and thrilled in the progress she has made since she started at Perkins!

On Friday, we did something that was fun for a while. Alexis went to WORK. She liked lunch time, enjoyed hanging out in the TV studio but then we went actually went to the office she was GROUCHY. She was growling at my coworkers and then even complaining about work. We changed her attitude quickly when she found that the work chairs SPIN. And they can spin very fast. And Alexis can giggle very loudly in a cubicle-ville. She had the giggles and snorts and just all kinds of giggles. It was great to see her being so lovable at work. :-)

Steve did get a good picture of Alexis and I at the cafeteria.

And then he showed off the fancy new video feature on his new iPhone (and posted it to Youtube).
ENJOY!!!
http://www.youtube.com/watch?v=HPwO71jcjJ8

Alexis Surgery Updates

2010-06-25T16:59:00.001-04:00

Tuesday morning, Alexis embarked on her 7th surgery of her life. This surgery was scheduled to fix her heart defects.

The plan was to arrive at 7:30am and go to CT at 8:30am. That plan was derailed for no known cause. Alexis entertained herself during the delay with some toys. See exhibits A and B.

There was a lot of time in the morning to watch “hospital time”. (this is the time where the clocks move forward but nothing happens in reality – maybe I should call it Time Warp).
After Alexis exhausted her selection of toys, she upgraded to Steve’s iPad. She loved it. She was coloring and drawing and putting on stickers that made sounds and having an awesome time. She even wrote her name! (Just kidding, she had some assistance!)

Then at 11am, they gave her some Versed and took her to be intubated. She then went to CT scan to confirm a question that her orthopedic doctor had (a small concern – ha ha! He was hoping to confirm that Alexis’ skull was safely adhered to her spine). Alexis has fusions between C2 and C4 of her cervical spine (neck) and they were concerned that the neck to the head wasn’t securely attached. We’ll tease her later about not having her head screwed on.

And then at probably 12:30pm, they were ready to start the 2-3 hour heart defect repair procedure. About 1 hour into the procedure, Alexis’ catheterization surgeon came out to talk to us. The doctor explained that her ASD (whole in the heart) isn’t as easy to close as he hoped it would be. He found that her HOLE is like swiss cheese – with many holes instead of 1 big hole. He wasn’t sure at that time if he would be able to close it with a device inserted through a catheter or whether he would need to do open heart surgery to repair it. We told him we’d like for him to try to close it with the device since that was the least invasive and impactful for Alexis. In the end, he was successful in closing most of the hole, but there is a 3mm defect still remaining. Hopefully that will get smaller as she gets bigger.

Alexis stayed overnight in the ICU. We get our own private room and lots of equipment to make sure she has a restful night (and safe!).

We were reminded again today, Alexis does not pick the “easy/straightforward” route, she likes the routes that cause doctors to think and work hard!

Why My Dad is the Best Dad! (from Alexis)

2010-06-20T22:00:00.002-04:00

Because I giggle non-stop around Daddy!

http://www.youtube.com/watch?v=mVIQ6m4k2KA

(Please note this video is from middle-of-May, but I haven't uploaded videos in a while and this seemed PERFECT for Father's Day!)
Happy Father's Day MATTHEW! (and Happy Father's Day to Grandpa Bill and Grandpa John!)
Love,
Catherine

Pre-Op Scheduled tomorrow - 7:30am!

2010-06-20T21:39:00.001-04:00

Hi All,
We haven't posted much in a while, but you are probably aware that we are a busy family -- going non-stop most days. And if we slow down enough, I like to "steal" the extra time and take a nap. My parents were right to call me CATherine.

So, Alexis and I are going to be on our hospital field trip tomorrow.
6:20am Departure
7:30am Pre-Op appointment (including chest x-ray, blood draw, cardiac clearance and anesthesia approvals)
They suggest that we plan for 5-6 hours at the hospital to complete everything, but they also say that some kids will be staying overnight in advance of the surgery.

So, by the time we return home tomorrow, Alexis and I will be beaten into a pulp. Only to turn around and go back to the hospital for Tuesday's surgery.

Maybe I haven't reminded my online friends which surgery this is -- but it's the cardiac catheterization to repair her heart defects (ASD and PPS murmur). In the whole scheme of things, Alexis does very well for having heart defects. Sadly, we know many of Alexis' peers who aren't able to get 'repaired hearts' and their parents are always in our prayers.
But for us, we have been able to put off this heart surgery until Alexis was much stronger and robust - which should improve the success probabilities.

We will let you know how we are doing as we can.

(For those interested, here is a link to a description of the type of surgery Alexis will be having - I thought it was really amazing and educational - http://www.youtube.com/watch?v=kPfH-D2O9mA)

Will post more later,
Catherine

First Trip to Storyland (Glen, NH)

2010-05-31T21:48:00.000-04:00

This weekend we went to Storyland in Glen, NH (~5 miles from our condo). It was great fun! We went on Saturday afternoon and then on Sunday morning. Definitely the kids and parents were exhausted after 3 hours at the park!!

Some major perks about Storyland:--

a) If you buy your ticket 3 hours before closing, it is good for the next day. (yipee!)

b) If you take your 2 year old, she's FREE.

c) If you take your hearing impaired child, she's FREE. (super lucky there).

d) If you take your hearing impaired / physically impaired child on the rides, she is treated like a VIP (she even gets a VIP pass).

(VIP means that she can go in the EXIT and skip all of the queues!!) We had a fantastic time on our first trip to Storyland.

Dad helping Alexis enjoy her horse ride!

Jessica enjoying her horse ride!

Alexis and Dad on the Flying Shoes!! Alexis loved the shoes!!!

Jessica making a raspberry when Mommy gave her a hug.

Jessica driving us around the farm! Alexis was the copilot and Mom and Dad rode in the back.

Alexis enjoying the Ball Pit! She loved it!!!!

Matt and Jessica - both being very cute!!!

Radiology Tour -- Alexis Style

2010-05-14T20:31:00.001-04:00

Alexis toured the Radiology Department today.
1. Ultrasound to review her abdomen
2. X-ray to review her abdomen
3. X-ray fluoroscopy to review her stomach, small and large intestines
These appointments were scheduled as 9:50, the 10:15 -- but you can imagine that Alexis style means that we were there from 9:45am until 2pm.
The ultrasound went fine, the x-ray went fine.... but then started the fun. Looking at live pictures of her stomach emptying and then the flow of barium into her small intestines. Alexis' intestines are really in the right order, or at least not as far as the doctors could see. So we took a break (I got lunch), Alexis got to hang out with me. They were hoping that the barium would move further through her system. It did! And I think that made them even more confused. We went back for a simple x-ray and then we took more fluoroscopy studies. And we left without knowing anything more than we did before we went -- they would need to review the video over the weekend, compare it to the studies that were done in 2007 and then try to compare it to the studies that were done in 2006 when she was in the NICU.
Some commentary on the video -
a) Alexis seems relatively pleasant during the first two video clips. She wasn't allowed to have food after 4am, so she was starting to get rather grumpy with no food.... that is the growling, it means "I'm hungry!"
b) I sound like a dork. That is my mom-talking-to-Alexis voice. I hate it, but Alexis thinks it's cute.
c) Alexis is not wearing her glasses because she chewed on them and they were dropped off earlier today to get the lenses replaced. Alexis is not wearing her hearing aids because they were moving her around a lot and it wasn't worth putting them in and then having them whistle / or having them interfere with any x-ray images.

Hope you enjoy!
Catherine

http://www.youtube.com/watch?v=T9PpLKe4pIs

Slow Radiology Day

2010-05-14T12:45:00.000-04:00

Alexis and I are at the hospital... for routine tests ordered by her GI doctor. Well, routine tests = very slow in Alexis protocol.
We did an abdominal ultrasound, then abdominal x-ray, then they did fluoroscopy study with barium inserted in her tube.... Amazingly, all of the tests were carried out on Philips equipment (yipee!) I took some video of Alexis (our super-model) showing of how the equipment works.
Naturally during the last test, they decided that her anatomy is so weird that we have to wait until all of the barium is through her system. So, we had lunch at the hospital and are now waiting for Alexis' bowels... And of course, they think we'll be done at 1pm but I know Alexis better, she has her own protocol.
So, I will post more later when I get home (which is after picking up her shoes from school, picking up her glasses from glasses place - getting new lenses and then going home).
Catherine & Super-model Alexis

Alexis Unplugged (All Acoustic Alexis)

2010-05-03T22:27:00.001-04:00

http://www.youtube.com/watch?v=-KMbEEXOsB0

Alexis playing Dad's guitar, please note that while she is leaning on Dad she is using both hands and very intent on playing the guitar herself.

Our new toy.... Flip Video -- Alexis in 1st Baseball Game

2010-04-27T20:28:00.003-04:00

So, I'm thinking you all are now amazed at all of this video content. About 1 month ago, I bought a Flip Video and I can't say enough great things about it! It's absolutely wonderful, easy and I think I can teach Jessica how to use it.

This weekend Alexis participated in her first Little League Challenger Baseball Game. We were highly encouraged by Alexis' Perkins classmates (ok, technically their parents) to sign up Alexis. It is about 20mins from our house (without traffic) and so we were a little reluctant (it is on weekends afterall). So, Alexis played in their practice game on Saturday (after a parade). It was fabulous weather and Alexis scored a run.
http://www.youtube.com/watch?v=piOaPysAjsU

Please note that as a Challenger Baseball League I think every kid gets to score a run, but Alexis was the cutest (in our eyes) to do it! :-) And she's on the RED SOX team. And has fancy #1 jersey to prove it and even the cool red pants.

Alexis and her new Touchscreen.....

2010-04-24T20:47:00.000-04:00

Alexis is working hard at school and home on ELO Touchscreens for computer skills. She is using a website called http://www.helpkidzlearn.com/. She is doing really well with it, and we are lucky that she is interested. These skills will help her to eventually use computers and even a communication device that could speak for her.

http://www.youtube.com/watch?v=z0N_YDlKeq4

Alexis' Friends in CHARGE

2010-04-13T21:49:00.000-04:00

Many frequent Alexis blog readers know about Moriah, one of Alexis' buddies in CHARGE syndrome.
Moriah has basically been in the hospital November 2008 after having major heart surgery done by Stanford Hospital doctors. Moriah and her family are troppers. They show love and goodness in each and every day.
Moriah has the "typical" fighting spirit that makes all of us families proud to know Moriah. Moriah needs a trach and a ventilator to help her and because the Northern California Bay Area doesn't have home-ventilator service -- Moriah is still in the hospital. They will remain there until Moriah is strong enough to be without a ventilator.
Their situation horribly pains me since Alexis was home at 2.5 months and had other hospitalizations but all relatively minor. For those who haven't had a baby in the hospital for an extended period of time, this is like one day taking your child to work and then accidently leaving them there with strangers. I mean, we all like work, like to go to work and manage to get ourselves to work, but it's work. It's just that. But now if your child is stuck there, you're going to get up early in the morning to get there to see them. You're going to stay all day as much as your weary body can handle it to be with them. To have to "drive" to visit your child and to leave your child each night, it's really horrible. Victoria and Justin have been doing that every day.
I sent Victoria an article (Being a Kid: Thriving with a Trach and Vent by Deb Millard) that she shared on Moriah's blog. It speaks to the struggle and the ability to manage a Trach / Vent at home with a relatively active child.
While we don't always discuss Alexis' medical details here, sometimes they bore me. We have avoided a Trach and we have avoided a Vent. But Alexis sleeps every night with a CPAP, which basically dictates our family routines and activities. In a lot of ways, we've had the easy way out - but I can feel the struggle that Victoria and Justin go through to provide the best for their daughter. It pains me to know that they don't have the joy of having Moriah playing happily in the next room (like the videos we get to show of Alexis). It also pains me that these services (home vent care) are available in different parts of the country but not everywhere, meaning that Moriah has to stay in the hospital.
Moriah is a blessing. Alexis is a blessing. We hope that one day we'll get our lives arranged so that they can meet. I'm sure they'd have an awesome dance party!!

Catherine

Alexis having a good time... Part 4 of 4

2010-04-09T07:30:00.002-04:00

Alexis on her new sit-and-spin and lots of giggles....
http://www.youtube.com/watch?v=xTZJihXtrPQ

Alexis having a good time... Part 3 of 4

2010-04-08T07:30:00.001-04:00

Alexis spinning the furniture at home....
http://www.youtube.com/watch?v=MV7WmZBvTh8

Alexis having a good time... Part 2 of 4

2010-04-07T07:30:00.002-04:00

Alexis and her friend riding the swing at School on Friday.
http://www.youtube.com/watch?v=8hYHZ8Xkgfk

Alexis having a good time... Part 1 of 4

2010-04-06T07:30:00.002-04:00

Alexis having fun at school.... in OT.
http://www.youtube.com/watch?v=WYVFH0fpHQg

Easter Egg Hunt - Alexis and Jessica

2010-04-05T20:29:00.000-04:00

Another You Tube video of Alexis and Jessica on the Methuen Easter Egg Hunt.
Alexis is already working with the local politicians -- Mayor Manzi (he had a lot of Easter Eggs for little kids that couldn't move fast enough). Jessica LOVED the Bunny!
Enjoy!!
http://www.youtube.com/watch?v=6I__z_Rh7GI

(P.S. This is my first attempt at video editing, please be nice with the comments, this is the top 10% of the footage)

Easter Family Pictures

2010-04-05T19:16:00.000-04:00

sitting pretty before church

Sitting again.

Family picture

Getting a little distracted...

Alexis sitting pretty after church!

Beautiful Weather

2010-04-03T21:55:00.000-04:00

Today was a beautiful weather day. It was supposed to be in the 70s but my car thermometer said 86. That's awesome considering we can still get SNOW in Massachusetts in April. So, we enjoyed ourselves.
We took a walk around the neighborhood - Alexis strolled and Jessica rode her tricycle (but it vibrates too much for 1.2 miles and she has to get on and off several times).
Then we went to Methuen's Easter Egg Hunt. There was one set up for the Preschoolers/Kindergarteners. It was great fun. Jessica and Alexis picked up about 4 eggs before all of the eggs were all gone. Alexis and I made a bee-line to the Methuen Mayor who put 6 more eggs into the basket! The Methuen Mayor actually lives in our neighborhood. He was impressed with Alexis' walking with her walker! Hopefully when we go Trick-or-Treating this year for Halloween, she'll be able to use her walker. (that's a 1.2 mile loop).....After the Easter Egg Hunt, we had a brief picnic/snack at the park then came home for real lunch.
After lunch, the kids ran around outside and then Jessica was exhausted and took a nap. I went out for errands and got a lot accomplished. Matt stayed at home with the always-pleasant kids. :-)

In other news, I went to Alexis' school for the whole day yesterday -- it was so exhausting. They made us do a loop around the TRACK for gym class. Ok, they didn't make us, but we did it!! Alexis is doing an awesome job pushing her walker and keeping up with it. She's not great steering, but she also gets really distracted people or thing-watching. She had PT, OT, and cooking yesterday. She did great in PT and OT and then tried to sleep in cooking. I helped her taste-test her cooking. Yum! Yum! After cooking, she had an impromptu dance party before going home with mommy. All-in-all, a great day! We skipped Friday after school PT on Friday, good thing, I got to go to bed early!

Tomorrow is Easter and we've already gotten the kids in bed so that we can all get up for 7:30 service. Then we'll get to go to breakfast, yum yum. And then nothing scheduled tomorrow... maybe some naps :-)

Enjoy the weekend and if you're in New England, enjoy the beautiful weather!
Catherine

2 Sisters demonstrate how to use the New Trampoline

2010-03-28T20:40:00.000-04:00

Alexis got a new indoor / outdoor trampoline. Here she is trying it for the first time.
http://www.youtube.com/watch?v=-Obv8rAFvaw
As you can observe, Alexis is very timid, taking it slowly and trying to judge her own weight and how to make sure she can work it. (She's also holding on very tight). Dad is helping because obviously Alexis isn't jumping enough to make it automatically count (it's got a bounce sensor in it).

Jessica didn't think that Alexis did a great job, so she had to demonstrate exactly how it could be used.
http://www.youtube.com/watch?v=prn5HNrIjSw
That is 13 seconds of how Jessica used it for 10 minutes. She was almost too tired for dinner after trampoline-time.

I think Alexis will really enjoy it when Jessica isn't around to push her off of it.

2010-03-20T19:06:00.000-04:00

Jessica being a HAM for the camera

Alexis playing outside, while Daddy was doing yard work. Mom wasn't working at all.

Jessica finished with dinner, trying to get out of her chair.....

Some delays later

2010-03-20T18:50:00.000-04:00

It's been a busy time. After being out of the house in a hotel for a night (from the power outage), Matt left on a business trip. It was a 10 day tour of Japan. He had a very productive time.
Grandma and Grandpa Schnaderbeck came to Methuen to stay and help with Alexis and Jessica schedules. It was a big help to have extra hands here with me. Matt only got to see them for about 4 hours.
This past week has been very busy -- Jessica is starting the transition process from Early Intervention to Preschool. She'll turn 2yrs 9months on April 4th, which seems hard to believe! She is still our little baby. But it's good, we are working on getting her more language practice and seeing specialists at Children's to help her learn to talk.
Alexis has been very busy, obviously school is always very busy. Then on Thursday, Alexis and Dad went to Alexis' dentist appointment in Boston. She needs to brush and floss more often, I guess we'll have to put it into her calendar system. Their trip was successful, but a little eventful. Alexis' g-tube came out at the hospital - which is ok, they should have replacements, but contacting and finding the right department to get the replacement would have been a hassle. So, Matt got the Dentist to move quickly and did a g-tube swap out at Perkins (Alexis' school has a spare one). Of course, now that I type that, I guess they don't have a spare one now - so I should remember to send one in. Maybe when my mom reads that, she can remind me to do it. :-)

I posted a video of our messy house but of Jessica putting away the silverware. Please note that she's a ham for the camera (and somewhat distracted). She likes helping around the house. She can't see into the draw and thus can't sort the silverware into the right spaces, but otherwise, she is very helpful and very proud of herself.

She was also distracted by daddy with Alexis changing clothes this morning. Very much my baby.

Take care, sorry for the delay in posting.
Catherine

Jessica Helping Empty Dishwasher

2010-03-20T18:43:00.002-04:00

We're back....

2010-02-27T19:42:00.000-05:00

We're back in our house.
Thankfully this time we were only in the hotel (home away from home) for 20 hours.
During that time, though we did an exchange.
We sent Matt to Japan and brought in his parents from Colorado!
Matt left at 4:45am to go to Washington DC, then a flight to Japan.

We managed to get power at the house at 10am this morning. Thank goodness. Jessica, Alexis and I moved back in once it was about 61 in the house. We had lunch and then us girls took naps! Jessica took the longest nap (~2.5 hours), then Alexis (~2 hours) and then me (~10mins). I definitely should have petitioned for more. But Alexis didn't sleep very well the night the power went out (she couldn't sleep with her CPAP). And then Alexis didn't sleep well at the hotel, I noticed this morning that it was probably because her crib had a slight decline from the foot of the bed to the head (exactly not the way Alexis 'deaf-blind' person needs to be centered in the world -- and with her breathing problems already). So, she is already in bed. SLEEPY.

Of course, most humorous was the phone call I received at 7pm from National Grid, "we'd like to inform you that based on our records your house does not have electricity and we are working around the clock to get power restored." Well, I hope they don't undo anything because right now I have electricity!!! Very funny.

Hope everyone is well,
Catherine

Electricity at House (an option??)

2010-02-26T08:27:00.000-05:00

Hi all,
Like December 12, 2008, our house has decided that electricity is optional. Evidently it has affected our neighbors as well.
Thankfully, unlike December 12, 2008 - the electrical line is STILL attached to the house, the basement did not have a fire, the house is still liveable.

But we don't have electricity which means that Alexis can't use her CPAP. It means that we'll probably be staying in a hotel tonight, which is very disruptive since Matt's parents are arriving and Matt is leaving to go to Japan in the morning.

Ah.... how crazy and insane our lives are at the moment.

P.S.
Matt wrote this to me when he arrived at work:
"I was driving to work - going around the rotary when I heard a funny noise in the car, a soft 'pa pa, pa pa'.
Luckily I did not yet get onto the highway and continued around the rotary to drop Jessica off at the YMCA."

Awesome New CHARGE Video

2010-02-10T20:43:00.000-05:00

Alexis' School "Principal" has made a new video about CHARGE Syndrome and the accomodations that kids need.
It's an awesome video and features some of Alexis' school mates (they are all older than Alexis). It's a fabulous video and very helpful to understanding some of the pure awesomeness of Perkins Deaf-Blind program (where Alexis goes to school).
Link to Video: CHARGE Syndrome Impact on Communication and Learning

First Visit to Hair Salon

2010-02-09T21:17:00.001-05:00

Jessica and Alexis waiting patiently for their appointment.

Jessica not waiting patiently for her appointment.

Jessica after getting her haircut, not so sure of the results.

Alexis getting her haircut. She was so good about it, until they cut her bangs since the hairdresser had her hands in Alexis face.

Lots of fun for our Saturday....

Alexis' Birthday Pictures

2010-02-09T20:44:00.000-05:00

Alexis on her 4th Birthday!

What Alexis looks like after 6:15am wake up, 2 hour commute to school, 6 hours of school, 1 hour commute home, play time at home and then family birthday time at home..... The outfit came from her birthday party, the ribbons came from her teachers, and the SMILE comes from God.

She was grabbing her stomach because she was laughing so hard, from being silly with Daddy during the photo shoot.

And then she gave this GLAMOUR smile. Absolutely PRICELESS!!!

4th Birthday Celebration

2010-02-07T20:43:00.001-05:00

Mom, Alexis and Jessica before the party checking out the Curious George Exhibit!

Super-Girl Alexis showing off, walking with Mommy! (please note her new big kid hairstyle)

The CROWD assembled for her birthday party! The Children's Museum was Fantastic!!!

Alexis "supervising" her cake arrival....

Alexis stuck her fingers in the icing! And tried to turn off the candles with her fingers. She loved the singing though.

She had a fabulous time with her Perkins classmates and her alumni from Perkins Infant-Toddler program.

THANK YOU ALL!

HAPPY 4th BIRTHDAY ALEXIS!!!!!

We love you!

SKIING!!!!

2010-01-24T16:16:00.000-05:00

Alexis went skiing for the first time on Saturday....

She had a great time! She went to the top of the mountain & skied a black diamond!!!

She even got to ride the Chair Lift!!! (and didn't cause it to crash)

Elmo rode along too!!!! Alexis loved it and would get ANGRY if they stopped moving. And she got to pass the lines because she was with ski school!

Jessica Talking Toddler with Matthew

2010-01-13T21:22:00.001-05:00

Photo and video editing at www.OneTrueMedia.com

The Fun Side of Thursday's Cardiology Visit

2010-01-09T21:49:00.002-05:00

On Thursday, we were accompanied to Alexis' appointment by Steve Cahill from Philips. He produced this video: http://www.theonlinelearningcenter.com/schtml/alexis

We are starting to work on the content for a follow-up video, not quite sure what the message will be, but it'll be related Alexis' continuing surgeries and our experiences within the medical / hospital activities.

Alexis and her STROLLER-cam!

I mean, how cool is that? The videos with it were really cool. Steve is amazing. Alexis loved looking around and being the movie star.

Here is Alexis "waiting". Steve was able to film a lot of that.

We waited and then waited, then waited. Other Moms who frequent Children's (or other hospitals) know that nothing tries your patience like "Hospital Time". Alexis is a great sport about waiting, but I was really getting bored.

It was weigh-in/height, then change to gown.
Then wait.
EKG done.
Then wait.
ECHO done.
Then wait, wait some more, wait some more.
DOCTOR visit, originally scheduled for 10, we were seen at 11:15am.
11:45 done with appointment.

This is Alexis getting her ECHO done.

One of the things that humors me is that they ask Alexis what video she wants to watch -- she got to choose from a choice of 3. Dora, Sesame Street or Baby Einstein. Well, Alexis doesn't watch the TV during the ECHO, she just chills out. She just doesn't want it to be so dark. So, I pick something that won't annoy me the whole time and something that is bright enough so Alexis won't be scared in the dark.

So hope you have enjoyed the next installment of "As the World Turns" for Alexis. :-)

Catherine

It's been a while -- a medical post

2010-01-09T21:29:00.001-05:00

So for folks that have been "enjoying" our light-hearted posts for a while, this one will be serious but thankfully "routine"

Alexis has been followed by cardiology since she was born. She had a PDA (that closed while she was in the NICU). She has a PPS murmur (valve that isn't completely formed correctly) and an ASD (Atrial Septal Defect). If you google ASD, you can find information on it.
We had been going to the appointments every 6 months and every 6 months they would say the same thing. Not yet, we'll evaluate at the next visit.
Well, NOT THIS TIME. This time they said that they would do the surgery within the next 6-9 months. It would be the ideal time for surgery (not her birthday, not hospital time during the winter, etc). So, hopefully we'll get it all arranged for sometime in August.
Naturally, we're professionals at other surgeries for Alexis.
I tallied this up the other day:
- 1. Bronchoscopy 3/17/06
- 2. Fundoplication & G-tube insertion 4/10/06
- 3. Cleft Palate Repair 11/30/06
- 4. Tonsils out and ABR 2/11/08
- 5. Eye Surgery 7/24/08
- 6. Eye Surgery Part II 4/23/09
And so the catheterization procedure to close ASD and open valve (PPS) will be surgery #7. Alexis will be 4 in February so it's averaging to be 2 surgeries each year. Wowza.
And because we have managed to use her CPAP for so long, we have avoided TRACH surgery all together.

I found this on YOU TUBE and I thought it did a great job of visualizing the surgery that Alexis will be having:
http://www.youtube.com/watch?v=kPfH-D2O9mA

So, that's the latest news that we know about Alexis-Heart-update.

Take care,
Catherine

Interesting Story / Example

2010-01-05T18:00:00.002-05:00

People have asked me why Alexis doesn't crawl, what she does hear, what she doesn't see and why she is so delayed.

Another CHARGE parent posted this.... and I thought I would share it because it does a GREAT job explaining the complexities of Alexis and her body.
We think of all the sensory systems in the body as being interconnected, they each must do their individual job, but they also must work together. Think of these sensory systems as a Chinese Acrobat troop. One person holding up a lot of other people. In this analogy the foundation for the troop to stand on is made up of information from smell, taste, and touch. The strong man is the vestibular system - this system needs to provide the support for each system up above to do their own job as well as work together. If there is weakness in one system, another system may compensate. If one person (system) in the acrobat troop sneezes, all the other systems must respond, much like movement to one piece of a mobile creates movement in other parts.
If the vestibular system is weak a system up above might compensate - vision is often the compensatory system, even in those who have vision impairment. Or there might be compensation from below - vision, taste, or touch - like shoring up the foundation of a sandcastle. This can be seen in behaviors such as chewing on shirts, biting..... And finally as the demands on each of these systems increase - greater demands at school for example - the ability to compensate might be exceeded and you begin to see "symptoms".

This was very interesting to me. I hope you all enjoyed it.

Jessica and Matt play in Snow

2010-01-01T16:34:00.000-05:00

Jessica, Matt and Matt's lifesize Snowman

Jessica smiling in the snow! :-)

Alexis Scoooting...

2010-01-01T12:40:00.002-05:00

When you don't have mobility in your neck....
When you don't have enough upper body strength.....
When you don't have the coordination....
When you don't have the vision....
When you don't have the hearing to be inspired to find your toys.....
You don't learn to crawl.

But you learn to do this, and you are getting very good at it!!!!

Warning, do not try this at home, it's actually a lot of work to coordinate leaning backwards but not too far, and using your feet to drag you across the room.... but as you can see Alexis has figured out a method that she enjoys quite a bit!

P.S. Today is Pajama Day for Catherine and Alexis. Besides, if you could wear footie pajamas with brown and white cows on it, wouldn't you do it all day as well?

Handbook 2010

2010-01-01T09:18:00.002-05:00

HANDBOOK 2010
Health:
1. Drink plenty of water.
2. Eat breakfast like a king, lunch like a prince and dinner like a beggar.
3. Eat more foods that grow on trees and plants and eat less food that is manufactured in plants.
4. Live with the 3 E's -- Energy, Enthusiasm and Empathy
5. Make time to pray.
6. Play more games
7. Read more books than you did in 2009 .
8. Sit in silence for at least 10 minutes each day
9. Sleep for 7 hours.
10. Take a 10-30 minutes walk daily. And while you walk, smile.
Personality:
11. Don't compare your life to others. You have no idea what their journey is all about.
12. Don't have negative thoughts or things you cannot control. Instead invest your energy in the positive present moment.
13. Don't over do. Keep your limits.
14. Don't take yourself so seriously. No one else does.
15. Don't waste your precious energy on gossip.
16. Dream more while you are awake
17. Envy is a waste of time. You already have all you need..
18. Forget issues of the past. Don't remind your partner with his/her mistakes of the past. That will ruin your present happiness.
19. Life is too short to waste time hating anyone. Don't hate others.
20. Make peace with your past so it won't spoil the present.
21. No one is in charge of your happiness except you.
22. Realize that life is a school and you are here to learn. Problems are simply part of the curriculum that appear and fade away like algebra class but the lessons you learn will last a lifetime.
23. Smile and laugh more.
24. You don't have to win every argument. Agree to disagree.
Society:
25. Call your family often.
26. Each day give something good to others.
27. Forgive everyone for everything.
28. Spend time with people over the age of 70 & under the age of 6.
29. Try to make at least three people smile each day.
30. What other people think of you is none of your business.
31. Your job won't take care of you when you are sick. Your friends will. Stay in touch.
Life:
32. Do the right thing!
33. Get rid of anything that isn't useful, beautiful or joyful.
34. GOD heals everything.
35. However good or bad a situation is, it will change..
36. No matter how you feel, get up, dress up and show up.
37. The best is yet to come.
38. When you awake alive in the morning, thank GOD for it.
39. Your Inner most is always happy. So, be happy.
Last but not the least:
40. Please Forward this to everyone you care about, I just did.
[A great friend sent this to me, I had to forward it along]