Saturday, December 30, 2006

A Christmas to Remember

We've had a week of sharing memories, laughter, good times and ..... the FLU! Yep, the flu bug in spreading through my house like wildfire right now. So far, four of us have been "hit" -- including me, the one who "never" gets sick. Ugh! I was out of commission for 24 hours, but am fine today. Hopefully those in my family who have to travel back home on Tuesday get it asap or not at all as I can't imagine flying and being this sick. Jack is quarantined in his bedroom to keep him "safe". Oh well, I think for the most part everyone is having a good time.

Happy New Year to you all!

Wednesday, December 27, 2006

What a Group!

Jack and his cousin Jackilyn. Jack isn't too sure about sharing the ride!
This picture doesn't even include everyone who was at the house tonight.

Today was our big get together - all my brothers and sisters are now in town and we got together with our aunt and cousins (and their significant others and kids). It was absolute insanity at my house for about 4 hours. If I counted correctly, there were 46 people here - we almost needed to rent a banquet hall. Tomorrow is our "formal" family picture day ... and the fun continues.

Monday, December 25, 2006

Just some pics

My niece Shannon (Christmas Eve)
Eric got his bugs!
My nephew Joey with nieces Jackilyn and Jordan
My silly niece Kelsey with Mary relaxing before dinner
My sisters, Cecelia, Maureen and Joan and me
Jack, Mary and my niece Bridget
All of us watching old home movies -- good thing I have a big couch!

Eric after a long day.

Sunday, December 24, 2006

Twas the Night Before Christmas

Twas the night before Christmas ... the abbreviated version. Hope Santa is good to you all!

The Schrootens

p.s. Eric is not nestled all snug in his bed, he is in a sleeping bag on the floor in our bedroom!

Saturday, December 23, 2006

Hustle and Bustle

The hustle and bustle of the holidays is upon us. My sister and her family arrived from New Jersey yesterday and we've been hitting the stores ... we even braved Costco today! Last night we started watching old 8mm movies of us when we were kids. My grandfather was a camera buff and we have over 10 years worth of film (circa 1961 forward). It was fun for us, but I think our own kids enjoyed it more seeing their parents as babies and little kids. My mom had 5 kids in 6 years, yet she always seemed to have a smile on her face . . . no doubt she was just faking it for the camera! Jack was laughing quite hard -- not sure he knew what he was laughing at, but he always likes to join in with the laughing. It's just so nice that he can be out of bed and in the family room with the rest of us. My brother from North Carolina arrives tomorrow with his family and my other brother arrives from Ohio with his four kids on the 26th. I'll try and take pictures throughout the next few days to share.

Wishing you all a peaceful Christmas with family and friends.

Tuesday, December 19, 2006

Christmas Past

I had fun going through our pictures from Christmases past. Thought I'd share those from the year Jack was born through 2005. I hope to get a 2006 picture soon. I'm not sure why one year I only have a picture of Jack and not the girls.

(p.s. if you need a few minutes of some downtime - click on the link to the dash movie I recently added to my links. It's very relaxing. But if you are an impatient person ... it might move a bit too slow for you (a few people come to mind ;-)

Sunday, December 17, 2006

Weekend Fun

The kids had fun decorating cookies today with their friend Sara. Jack enjoyed watching all the activity and continues to do awesome in his chair. The last picture is of Jack this evening after a much needed haircut. He was really starting to look like a hippee! We are so thankful for our friend Michelle who comes to the house to cut Jack's hair. She is a very special person.

Have a great week!

Friday, December 15, 2006

The Lists

It's a little over a week before Christmas and I just looked over my kids' Christmas lists last night. Oh, what happened to Barbie dolls, play houses and bicycles? Now it's Wiis, iPods, cell phones and clothes. Ah, but there is that little boy of mine whose only request is a "bug collection" (which no doubt will be the most difficult gift to find!) Then there's Jack ... no list, no requests. A child who only gives each and every day ... through his smile, his sparkling eyes and his simplicity. A child who's on top of the world just to be sitting in his wheelchair. How interesting it is to experience the Season through the eyes of four unique little persons, who are at such different places in life.

We have so much to do this weekend to get ready for the 8 extra people who will be staying with us for Christmas. There's cleaning to do, cookies to bake, shopping to complete, packages to wrap ... and a whole lot more.

Enjoy your weekend ... I know I will!

Happy Hanukkah to my friends who celebrate this "Festival of Lights" holiday.

Wednesday, December 13, 2006

Look at the View

I found this on another webpage. It's a bit long, but well worth the read. As someone who spends entirely too much time at work, this definitely hit home for me and I'm determined to spend more time looking at the view this coming year.

Anna Quindlen's Commencement Speech at Villanova

It's a great honor for me to be the third member of my family to receive an honorary doctorate from this great university. It's an honor to follow my great-uncle Jim, who was a gifted physician, and my Uncle Jack, who is a remarkable businessman. Both of them could have told you something important about their professions, about medicine or commerce.

I have no specialized field of interest or expertise, which puts me at a disadvantage, talking to you today. I'm a novelist. My work is human nature. Real life is all I know. Don't ever confuse the two, your life and your work. The second is only part of the first. Don't ever forget what a friend once wrote Senator Paul Tsongas when the senator decided not to run for re-election because he'd been diagnosed with cancer: "No man ever said on his deathbed I wish I had spent more time in the office." Don't ever forget the words my father sent me on a postcard last year: "If you win the rat race, you're still a rat." Or what John Lennon wrote before he was gunned down in the driveway of the Dakota: "Life is what happens while you are busy making other plans.”

You walk out of here this afternoon with only one thing that no one else has. There will be hundreds of people out there with your same degree; there will be thousands of people doing what you want to do for a living. But you will be the only person alive who has sole custody of your life. Your particular life. Your entire life. Not just your life at a desk, or your life on a bus, or in a car, or at the computer. Not just the life of your mind, but the life of your heart. Not just your bank account, but your soul. People don't talk about the soul very much anymore. It's so much easier to write a resume than to craft a spirit. But a resume is a cold comfort on a winter night, or when you're sad, or broke, or lonely, or when you've gotten back the test results and they're not so good.

Here is my resume: I am a good mother to three children. I have tried never to let my profession stand in the way of being a good parent. I no longer consider myself the center of the universe. I show up. I listen. I try to laugh. I am a good friend to my husband. I have tried to make marriage vows mean what they say. I am a good friend to my friends, and they to me. Without them, there would be nothing to say to you today, because I would be a cardboard cutout. But I call them on the phone, and I meet them for lunch. I show up. I listen. I try to laugh. I would be rotten, or at best mediocre at my job, if those other things were not true.

You cannot be really first rate at your work if your work is all you are. So here's what I wanted to tell you today: get a life. A real life, not manic pursuit of the next promotion, the bigger paycheck, the larger house. Do you think you'd care so very much about those things if you blew an aneurysm one afternoon, or found a lump in your breast?

Get a life in which you notice the smell of salt water pushing itself on breeze over Seaside Heights, a life in which you stop and watch how a red tailed hawk circles over the water gap or the way a baby scowls with concentration when she tries to pick up a Cheerio with her thumb and first finger.

Get a life in which you are not alone. Find people you love, and who love you. And remember that love is not leisure, it is work. Each time you look at your diploma, remember that you are still a student, learning how to best treasure your connection to others. Pick up the phone. Send an e-mail. Write a letter. Kiss your Mom. Hug your Dad.

Get a life in which you are generous. Look around at the azaleas in the suburban neighborhood where you grew up; look at a full moon hanging, silver in a black, black sky on a cold night. And realize that life is the best thing ever, and that you have no business taking it for granted. Care so deeply about its goodness that you want to spread it around. Take money you would have spent on beers and give it to charity. Work in a soup kitchen. Be a big brother or sister. All of you want to do well. But if you do not do good, too, then doing well will never be enough.

It is so easy to waste our lives: our days, our hours, our minutes. It is so easy to take for granted the color of the azaleas, the sheen of the limestone on Fifth Avenue, the color of our kids eyes, the way the melody in a symphony rises and falls and disappears and rises again. It is so easy to exist instead of live.

I learned to live many years ago. Something really, really bad happened to me, something that changed my life in ways that, if I had my druthers, it would never have been changed at all. And what I learned from it is what, today, seems to be the hardest lesson of all. I learned to love the journey, not the destination. I learned that it is not a dress rehearsal, and that today is the only guarantee you get. I learned to look at all the good in the world and to try to give some of it back because I believed in it completely and utterly. And I tried to do that, in part, by telling others what I had learned. By telling them this: Consider the lilies of the field. Look at the fuzz on a baby's ear. Read in the backyard with the sun on your face. Learn to be happy. And think of life as a terminal illness because if you do you will live it with joy and passion, as it ought to be lived.

Well, you can learn all those things, out there, if you get a real life, a full life, a professional life, yes, but another life, too, a life of love and laughs and a connection to other human beings. Just keep your eyes and ears open. Here you could learn in the classroom. There the classroom is everywhere. The exam comes at the very end. No man ever said on his deathbed I wish I had spent more time at the office. I found one of my best teachers on the boardwalk at Coney Island maybe 15 years ago. It was December, and I was doing a story about how the homeless survive in the winter months. He and I sat on the edge of the wooden supports, dangling our feet over the side, and he told me about his schedule, panhandling the boulevard when the summer crowds were gone, sleeping in a church when the temperature went below freezing, hiding from the police amidst the Tilt a Whirl and the Cyclone and some of the other seasonal rides. But he told me that most of the time he stayed on the boardwalk, facing the water, just the way we were sitting now even when it got cold and he had to wear his newspapers after he read them. And I asked him why. Why didn't he go to one of the shelters? Why didn't he check himself into the hospital for detox? And he just stared out at the ocean and said, "Look at the view, young lady. Look at the view." And every day, in some little way, I try to do what he said. I try to look at the view. And that's the last thing I have to tell you today, words of wisdom from a man with not a dime in his pocket, no place to go, nowhere to be. Look at the view. You'll never be disappointed. - Anna Quindlen

Sunday, December 10, 2006

Loving it!


Jack is doing well and is lovin’ being up in his wheelchair. He is up to 3+ hours at a time. Both times this weekend when we moved him from his chair back into bed, he cried and I thought maybe he was hurting. However, tonight I asked him if he wanted back in his wheelchair and he immediately stopped crying and got a smile on his face! I think it's much more than just being up in his chair, it's also the fact that we wheel him all around the house and outside and he really likes the change of view. Poor kid, he hates being confined to bed more than I imagined. You can really see how much taller he is and how broad his shoulders are by comparing the before and after picture. (okay, so the STL surgeon does deserve credit for doing a good job, even if he is not the most likeable guy). You can also see why his scoliosis was called a "collapsing" scoliosis. It makes me sad because it's obvious Jack would have been a good size kid and no doubt a heck of an athlete if he hadn't been born with his disease.

The last picture is of Eric wishing for "winter”?! He got out of the bathtub this morning and came downstairs with only his mittens on (thus the reason for only the waist up picture). What a crazy kid he is!

Tomorrow should be fun ... several people from Jack's school are coming over to the house to "meet" Jack. He's been a student at their school for almost 3 years and they are just now coming over to meet him. I've decided I need to be there, so I'll no sooner get to work and I'll have to turn around and leave to get to the house by noon (and then turn around and head back to work). I've yet to hear from either Hilary or Jack's school regarding the mandatory IEP meetings that are supposed to be held before December 22nd. I can't believe they are going to ignore the mandate of the Department of Education. **update: heard from both schools today ... I told them I'm not interested in compensatory services (in fact, I didn't even request compensatory services in my request for relief). The visit was good -- Jack "performed" well for all his visitors.

Have a great week!

Friday, December 08, 2006

Moving Forward Cautiously

I'm acutely aware that there are a few of you out there who may think I'm wrong for not following the recommendations of the St. Louis ortho - the guy who actually performed the surgery. Trust me, the decision to get Jack out of bed two months ahead of schedule isn't made without apprehension. Yet, sometimes common sense has to come into play and the textbook has to be thrown out the window. The golden rule of parenting is "go with your gut" and my gut says it's time to move forward. I'm so in tune to Jack, I practically breathe every breath right along with him and I truly believe that the benefits of staying in bed another two months (if any) don't outweigh the complications we are running into with pressure sores and contractures. The only thing we will do ahead of schedule is get Jack up in his wheelchair. We won't be putting him in the sling for the lift system or moving him all about. He will still be spending the majority of the time in bed. In general, I'm a high compliance person (really, I am :-) Therefore, to do something that is contrary to what is recommended is difficult for me because if I'm wrong, well ... I'll be wrong in a big way. We are moving forward very cautiously.

I'm not sure who this entry is directed to ... perhaps only me as I try and justify my decision to myself. When it comes to Jack, decisions are never easy. Stay tuned ............

Wednesday, December 06, 2006

Oh Happy Day!!

Today ranks as one of the BEST days of the year! We saw the local ortho and he told us to "can" the body jacket. He said it's time to get back to a normal life. Jack's x-ray looked great, all the hardware is in its place. He also looked at the pressure sore and he said it didn't look that bad - yet ... but, that was another reason to get Jack up and moving around. I feel like I just got a "get out of jail" card. I really like this ortho, he has the most refreshing personality. I've decided not to even ask permission from the St. Louis ortho ... common sense says it's time to get out of bed, it's been 4 months. I have to admit, for the first time in a very long time, I have a genuine smile on my face. As you can see from the pictures, Jack was happy to be up in his chair and he is very tall and straight now. He did get really tired after about an hour and 1/2 in the chair. We have to take it slow, but by the time Christmas rolls around he should be tolerating his chair much more. We decided to retire the body jacket on his big teddy bear that he got for his birthday from one of his great supporters (like it Kari?)

Mary made her Confirmation tonight. It was a perfect way to end a perfect day ... in church, giving thanks. The picture in church is with her Godmother and sponsor, Anne Marie (who I went to college with).

Thank you for checking in. I hope I have nothing but good news to report from here on out.

Sunday, December 03, 2006

Busy Weekend!

We got both Christmas trees up and decorated. Whew! They are real trees and I love the smell of them. It was too dark by the time I finished decorating to get a good picture of our big tree, but the above picture is the tree we set up in Jack's room. The smile that came across Jack's face when I told him it was time for bed, turned off the lights and all he could see were the lights from his Christmas tree ... was priceless! Eric told me tonight that he wishes he could be like Jack so that I would pay attention to him. Ouch! He wants to know why he can't have a Christmas tree in his room. How do you explain to a 4 year old that it's because he can walk into the living room and look at the Christmas tree. *Sigh*.

Jack's pressure sore is terrible. It's open and oozing again. Not good at all. The alternating pressure mattress Apria sent out is a joke. It's not a mattress, it's a pad and it has pockets that fill up with air and that's it. Seems to me that while the pad may have alternating air pockets, since Jack is not "alternating" it does no good. We need a mattress that has air that moves, or something that is continuously changing the position of the mattress against Jack's skin. I'm not going to bother with Apria, I'm going to call another DME company we have in town and see if they can help me.

As far as the pressure sore itself, we see the orthopedic doctor on Wednesday and I'm going to ask him to look at it and then call our pediatrician because something needs to be done. My mom (who is a nurse) says that a wound care nurse should come out to the house to care for Jack's sores. We'll see what happens after Wednesday. Of course, taking it to the worst case scenario, I've already got him in the hospital and on IV antibiotics right about Christmas when I'll have a house full of guests. I'll shoot myself if that happens.

We have a busy week coming up with Jack's ortho appointment and we also have Mary's Confirmation on Wednesday. I'll let you know what I find out from the ortho on Wednesday. Hope you all have a good week.

Friday, December 01, 2006


In September I filed a complaint against our school district because over two months into the school year, they still had not sent any therapists or a teacher to our house for Jack. As a general rule, I don't get too excited about what the school district does or doesn't do because we have enough people in and out of the house providing services to Jack. However, after finding out that the failure to provide services was coming directly from the top -- the Director of Special Education -- I decided I needed to make a point. I discovered this fact from an email that was forwarded to me from the company previously contracted to provide services and which, no doubt, was not intended to get into my hands. Since I was filing a complaint, I figured I'd also add that the district was in violation of Hilary's IEP as well because they didn't commence her speech therapy until school had been in session for over a month. Today I received the findings from the Department of Education after completing its investigation:

Issue: Whether the District provided the special education and related services, in John's (that would be Jack) IEP, at the start of the 2006-2007 school year.

Finding: Based on the fact that the District delayed implementing services, it is found to be in noncompliance.

Issue: Whether the District provided speech therapy according to Hilary's IEP.

Finding: Based on the District failing to provide the services, it is found to be in noncompliance with regard to this issue.

Score! Okay, so a little humility would be a good thing here. But, you just have to know that the Director for Special Ed made the mistake of playing games with me and, what's worse -- she is a dishonest person. Anyway, I've had my say, I made my point and I'm definitely going to move on. The Department of Education is requiring that we reconvene within the next three weeks to rewrite both Jack's and Hilary's IEP to determine the level of compensatory services the school shall provide, if any. I don't want any compensatory services and the last thing I have time for is to sit through 2 IEP meetings this time of the year.

How nice to get some good news on a Friday. It sure beats the handful of EOBs from United Heathcareless that are replete with incorrectly processed claims. I just threw those in a stack and won't open them until Monday. No need to ruin my good mood. We have a lot planned this weekend ... putting our Christmas trees up and getting the house ready for family that will be coming out for Christmas (i.e. painting). Hilary needs to get pictures of "wildlife" for her photography class. I can't understand why pictures of Eric won't meet this requirement :-) Looks like we'll be dropping her off at the zoo for a few hours tomorrow so she can complete this project.

Hope you all have a wonderful weekend.