Hope is the thing that is willing to take a chance on the future. Hope is the capacity to see something on the horizon that we are willing to move toward. If our hope gets us from today to tomorrow, and in that new day we are ready or able to deal with something we thought we couldn’t face, then hope has done its job. There is a worse thing than false hope. It is no hope.
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!
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.
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
BEFORE
AFTER
CRAZY BOY
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!
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 ............
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.
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.
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.
My sister will appreciate this. Here is Eric this morning in the car on the way to school. The cold weather was too much for him!
It's been mentioned by many of you – some who have seen Jack in person and others who see him only through the pictures I post – that in spite of everything, Jack appears happy. Yes, JACK IS HAPPY! How can that be? Some might believe it’s because Jack isn’t all “there” (these some bodies are generally found in the medical profession). While Jack may be labeled MR by the professionals, there is no question that Jack is “here”. I know this to be true. I know it because I see it in his eyes, I see it in his smile and I feel it in his presence. If you have any doubt, go back and watch his birthday video again. His eyes say it all. Jack may not be a genius, but Jack is wise beyond his years. To acquire wisdom, one must be an observer and Jack is the supreme observer. If Jack is so wise and truly “gets it”, then I ask again, how can he possibly be so happy?
I suppose one way to analyze this question is by asking what is it about Jack’s situation that makes me so unhappy? Unpredictability, confinement, lack of control and uncertainty . . . to name a few. Yet, from Jack’s perspective, life is very predictable, he has no place he must go, he has no need to control and he doesn’t need to know what tomorrow may bring. Jack lives for the moment and every moment of every day Jack is loved, he is pampered, he is adored, he is entertained and he is shielded from pain to the best of our abilities. Any parent would do for their child what we do for Jack – there is nothing unique about us as parents. The uniqueness lies in Jack. I can’t explain it, it’s just there.
As a parent, it’s my responsibility to carry the worry and burden of this journey, not Jack’s. Therefore, while I’ll no doubt continue to fret about the unpredictability, confinement, lack of control and uncertainty and yes, I’ll occasionally be unhappy . . . Jack will continue to live in the moment and, in his own unique and wise way, he will continue to BE HAPPY.
We are coming to the end of a very relaxing and enjoyable four day holiday weekend. It was so nice not to have to get up early and herd everyone out the door for school. The pictures are of everyone just hanging out today (even our dog, Rylie). Mary, naturally, waited until Sunday evening to start her homework. I personally think it's ridiculous to give kids homework over a holiday weekend that should be spent enjoying time with family. Eric is watching Hilary play a video game on the TV. If you are wondering where Mark is ... he was outside putting Christmas lights on the house and decorations in the yard. It's somewhat difficult to get into the Christmas spirit here in the desert when it's 80 degrees and you are wearing shorts while hunting for the perfect Christmas tree! Since we are having a full house this Christmas with my brothers and sister and their families coming into town, I thought we should at least try and make the house look "Christmassy".
On the Jack front, we are now dealing with another pressure sore right next to the one that is finally healing. I predicted this! The pictures I posted a few days ago of Jack's back don't begin to do justice to what his back really looks like. The bumps all over his back make no sense to me .... I can't even tell where the hell his spine is. I think the nice, smooth "C" curve he had prior to surgery was much better than what I am seeing now. I really need to run my questions and concerns by the St. Louis ortho, but the guy is so unlikeable that I can't bring myself to even compose an email to him. Another concerning issue is the contractures in Jack's ankles, knees and wrists that are getting worse by the day. I've no doubt that laying in bed for months is contributing to this. I try putting splints on Jack's feet, legs and hands, but he just whines when I do (can you blame him?) I feel like there just isn't much I can do to make life better for Jack anymore. I so much want to get him OUT OF BED, but at the same time, I'm terrified of what our next issues could be ... i.e. broken hardware. When I asked the ortho how would I know if the screws were to break off, his response ... "you'll hear popping sounds". Okay, and then what? I'm beginning to wonder if Jack is at a point in his life that he will always have issues and will never really be the status quo again. I have a lot of questions to run by Jack's (St. Louis) neurologist who is supposed to call me this week. When I emailed her last week she must have sensed my frustration and despair because she asked for my phone number so "we can talk". I'm looking forward to talking with her, as she has a way of telling it like it is, but always tempering it with compassion.
That's the update from sunny Phoenix. Thanks for checking in.
(I have to rub in the "sunny" part for my sister, Maureen who thought it was a wise decision to move to New Jersey a few years ago. I'm trying to convince her to move back home. I mean really, who moves TO New Jersey on purpose?)
A heartfelt thanks to all my wonderful and supportive friends who are always there ... standing by. You mean the world to me.
** To my sisters, this includes you. :-)
The Friend Who Just Stands By
When troubles come your soul to try,
You love the friend who just stands by.
Perhaps there's nothing she can do,
The thing is strictly up to you.
For there are troubles all your own,
And paths the soul must tread alone.
Times when love can't smooth the road,
Nor friendship lift the heavy load.
But just to feel you have a friend,
Who will stand by until the end.
Whose sympathy through all endures,
Whose warm handclasp is always yours.
It helps somehow to pull you through,
Although there's nothing she can do.
And so with fervent heart we cry,
God Bless the friend who just stands by.
- Author Unknown
This might be too much information for some of you, but I am posting pictures of Jack's back for those who might be interested. As you can see, the pressure sore is small, but if we didn't get on it right away, it could have become a very big problem. The second picture shows two lines which correlate to two separate areas on his back that protrude.* One line must be his spinous process (I have no idea which one) and the other line, I'm assuming would be hardware. Given their locations and the fact that they don't seem to line up -- I don't think they are the same thing. But, what do I know? We see the local ortho on December 6th -- we'll see what he thinks. I'm expecting to get the go ahead from the Phoenix ortho to allow Jack out of his brace and into his wheelchair. I needed a letter from the St. Louis ortho for our school district re: how long before Jack can sit in his wheelchair and in the letter he is still sticking to the 6 months schedule. I plan on emailing him regarding an early release, but I'm going to wait until we see the local ortho first. If the St. Louis ortho says "no", I'm inclined to get him up in his chair anyway because -- as I told the St. Louis ortho's nurse --- it's both insane and inhumane to keep Jack flat on his back for 1/2 a year! I'm also going to talk with Jack's neurologist before we get him up because I've got to believe that there could be some issues with sitting up after being flat on your back for 4+ months. If nothing else, I'd think you could get one helluva headache.
No word yet on how Mary or Shannon did in their competitions. Update: Mary's Ceile team placed 8th out of 23 and Shannon's Ceile team placed 6th out of 31; Shannon recalled on her individual dances, which means she placed in the top 50% and got to dance a second set. This was Shannon's first time to recall. Congrats girls!
Have a great week! Thankfully, it's a short work week.
* The lines are the result of some photoshopping on the pictures. I didn't actually draw lines on Jack's back, just in case you were wondering :-)
(btw, for anyone who might not know ... you can make a picture bigger by clicking on it.)
Our sweet Mary and my equally sweet niece Shannon left for Portland, Oregon this evening (with my sister Joan) to compete in an Irish Dance competition. Shannon (who is 17 and a junior in high school) will be dancing both individually and as part of a team called a Ceile (pronounced "Kaylee"). Mary (who is 13 and in 8th grade) will be dancing as part of a Ceile team only. It's a major dance event in the world of Irish Dancing. If you place high enough, you earn the right to compete in the World competition which takes place every Spring in Ireland.
While Mary will be the first to tell you that I am not a big fan of spending my entire weekend at an Irish Dance competition (I'd rather stick needles in my eyes, actually), I really am disappointed that I'm not able to experience such a major competition with Mary. She always does better when I'm not around, so that makes me feel a little bit better. Mary's competition is on Sunday, and Shannon dances both Saturday and Sunday. Send good luck their way and I'll let you know how they do.
Good evening.
*****************************************
Thanks guys.
(Kari, your comment had me in tears.)
****************************************
I realize after reading through many of my posts, that I do a fair amount of whining. I assume that if you read Jack’s blog, you have an interest in knowing what is going on with Jack. Whether or not you are interested in how I feel about the whole thing is questionable. However, I have to admit that after I get my whining out of the way, I really do feel better. So, for those of you who give in to my whining and offer words of support (or a silent prayer) … thank you! For those of you who think I need to “get over it” ... I agree with you for the most part.
I’m the first to admit that I have a flare for the dramatic. Every little thing is taken to the worst case scenario in my mind. It’s a coping mechanism. If I expect the worst and prepare for the worst, then anything short of the worst is a “relief”. You’d have to live this life to understand. Having a child with intense medical needs is … well … intense. Yet, you learn to adjust - you find your new normal, you get into a routine and you get up each day and function with the rest of the world, notwithstanding the fact that your child’s every breath literally depends on you (and those you trust to fill your shoes in your absence). There is a very fine line between holding it all together and feeling like you are about to fall off the cliff that parents like myself perpetually teeter on. Although an issue may appear to be a little thing, when you have no reserve, it’s the little things that will push you over the edge - as I’ve obviously demonstrated time and time again over the last 4 months. You’d think after eight years of teetering, falling and getting back up, I’d be more conditioned to handle the bumps encountered along the way. However, my ability to cope seems to diminish with each “bump” I encounter, and the whining intensifies.
My rational self knows that I just need to “cowboy up”, shut up and deal with it. Yet, when I sit down at the keyboard, my very emotional self takes over and I whine. Those of you who encounter me in person see the rational me. Those of you who encounter me only through my written words see the emotional me. Those of you who see me both places … you’re no doubt as confused as I am!
I can’t promise to cease all whining, I can only suggest that if you tire of the whining … hook up with me in person, the rational me is much more tolerable.
Food for thought:
THE DASH
by Linda Ellis
I read of a man who stood to speak
At the funeral of a friend
He referred to the dates on her tombstone
From the beginning to the end.
He noted that first came her date of her birth
And spoke the following date with tears,
But he said what mattered most of all
Was the dash between those years.
For that dash represents all the time
That she spent alive on earth.
And now only those who loved her
Know what that little line is worth.
For it matters not how much we own;
The cars, the house, the cash,
What matters is how we live and love
And how we spend our dash.
So think about this long and hard.
Are there things you’d like to change?
For you never know how much time is left,
That can still be rearranged.
If we could just slow down enough
To consider what’s true and real
And always try to understand
The way other people feel.
And be less quick to anger,
And show appreciation more
And love the people in our lives
Like we’ve never loved before.
If we treat each other with respect,
And more often wear a smile
Remembering that this special dash
Might only last a little while.
So, when your eulogy is being read
With your life’s actions to rehash
Would you be proud of the things they say
About how you spent your dash?
I sure do! Most of you have already seen/heard these clips ... but, they are worth repeating, if only for myself.
Jack - audio only
Jack laughing
Eric is only 3 years old here:
The ceiling mounted lift has been installed. A track is over Jack's bed and over Jack's throne (the couch) in the family room. In the pic of Jack's room, you can only see the headboard to Jack's bed since the bed has been temporarily dismantled to make room for the hospital bed. It wasn't financially (or aesthetically) practical to install a track system throughout the first floor because there are too many different ceiling heights along the way. How it works (for those who are clueless) is that Jack will be in a large sling that attaches to a portable motor that hangs from the track (and which is not pictured) and the motor will lift him from the bed to his wheelchair or bathchair and from his wheelchair to the couch. The lift is not something Mark or I expect to use much, but Jack's nurse -- who is all of 4'11" can no longer lift him. We don't ever want to lose Kristi as Jack's nurse, so the lift is really for her use.
I'm not quite as thrilled with the whole thing as I thought I'd be. I have to admit, when I first walked in the house after it was installed, I got tears in my eyes. It is just another one of those "in your face" reality checks. Plus, it's not exactly my decor of choice. Oh well ... I'm really OK with it now. I don't even notice it anymore. As with everything in life ... you do what you gotta do!
Have a great rest of the week.
I realize this is Jack's blog, but many of you who are reading this know that my brother was deployed to Iraq last November. I want to let everyone know that he arrived safely back home (Ohio). He plans on taking a few weeks off before getting back to his civilian job with Lucent Technologies. I'm sure it will be a bit of an adjustment. Thank you for keeping him in your thoughts and prayers this last year.
The picture is of my brother and his twin boys before he left last year.
Pictures:
1. Jack, sibs and cousins (like a typical 4 year old - Eric is mad because it's not his birthday and he's not getting the presents.)
2. Self-explanatory
3. Jack, Mary and Eric first thing this morning watching the first season of the Muppets DVD that Jack got for his birthday.
Take 1 of "Happy Birthday" -- my camera stopped before the song finished because the memory card was full.
Jack enjoyed Halloween from the comfort of his bed ... SURPRISE!! Can you hear the sarcasm? Jack's nurse, Kristi dressed him up as a vampire and to be honest, the pictures creeped me out, so I deleted them from the camera. Sorry, no picture of Jack this Halloween. Hilary went to a friend's house to watch movies (no picture of her either). Eric and Mary went with their cousin Shannon and friends. Mary (far left) and friends are from Napoleon Dynamite (I've never seen the movie, so I'll leave it up to you to guess who is who). Eric was a combination ghost and pirate. He really got into Halloween this year. The last picture is my sister Joan enjoying the nice Arizona evening. Hope you all had a grand Halloween!
to get out of bed. He and I had a conversation tonight. I told him he has one month left before he can get out of bed and get to the mall (ok, technically, he has more than a month, but at least the end is in sight.) Here's what Jack had to say.
I am re-reading a book titled "Changed by a Child", a book of companion notes for parents of a child with a disability. I had flagged the note titled "Yielding" and, as I was reading it again, I realized why. This note epitomizes my personal struggle over the last 8 years very well. The process of yielding is continuous. I am constantly yielding, then trying to regain "control", then yielding again. With everything that has gone on the last few months with Jack -- from his surgery and all its complications to my present dealings with the school district (which is a very uncomfortable situation right now) ... it's again time to "yield".
Yielding
Looking at what might be ours if we surrender to the fact of our child’s disability and its impact on our life, looking around at the roles others in a similar position seem to occupy, we might immediately protest: “Hey wait a minute. I don’t want to be exceptional, special, an advocate, political, a pioneer, a teacher, an expert on disability, brave, anguished, stigmatized, toughened, changed, holy.”
To surrender means to yield to the power of another; it carries strong connotations of defeat and ignominy. But to surrender also means to give up resistance. When we cling to our self-will we are in the ludicrous position of putting ourselves in charge of things that are out of our control. On the other hand, when we give up our will, when we give up resisting something we can’t change anyway, we open ourselves to a new set of choices. Actually, we never abandon our ability to will and to choose. We only shed the will we are presently exerting, because it no longer fits the circumstances of our life. Like a molting lobster, we give up the too-small will and grow a new set of intentions that fit.
Having given up our will that our child will walk, or see, or go to college or continue the family name, having embraced the new choices and undertaken new actions, we may discover that what we are doing is, in fact, exceptional or pioneering. We may find that our new, bigger shell is that of an advocate or an expert.
We kept busy this weekend with the usual flurry of activities ... you know, laundry, house cleaning, grocery shopping and, of course ... changing videos every hour on the hour to keep Jack entertained. Actually, we did some fun stuff too. Mary had an Irish dance competitition and she did quite well - even got a couple of first places. She will dance in a competition in Portland next month, but I won't be able to go with her since I used all my vacation time at that wonderful vacation destination known as St. Louis Children's Hospital! We also painted pumpkins today - Jack is posing with the Elmo pumpkin.
Since Jack is doing so well, we are weaning down his vent settings some. He had such a terrible year last year with a lot of pneumonias that his settings were higher than usual. However, now that Jack is straighter and his abdominal contents are no longer being shoved into his lungs and he is healthy and infection-free, he is a bit over-ventilated. Although Jack will never be vent-free, we don't want him to get too much vent support because being over-ventilated can change the blood pH - although it's not as damaging as being under-ventilated (per Jack's former pulmonologist who I still rely on when it comes to Jack and his vent). I turned his settings down to what they were a year and a half ago. He seems to be tolerating it fine. Now, who am I going to get to write the order so that the nursing agency won't have a fit?
Thanks for checking in. Life is uneventful ... life is good!
We saw the surgeon today at what I thought was an appointment to schedule the broviac removal in the OR. Instead, he just "ripped" it out right there in the office. Ouch! Although the nurse said the surgeon would numb up the area before he pulled it -- he didn't. It really upsets me when people discount Jack's ability to feel pain just because he can't talk. Needless to say, Jack cried after the broviac was pulled, but he was better by the time we got out of there. Yeah ... no more broviac!
The nurse was astonished at the size of Jack's MIC-KEY. She said they put longer tubes in newborns and that Jack's balloon was probably in his tract (for you non-medical people, that would be the space between where the tube goes into the skin and the stomach). The balloon should be in the stomach. We upsized significantly to a new and improved and longer "Mini" g-tube (is that Mickey's better half?)
All in all, it was a productive appointment. Have a great evening!
“We don’t see things as they are, we see them as we are”
Anais Nin
From where you are, you have all insisted that I made the best decision under the circumstances. The amount of confidence you have in me is a little scary, but I certainly appreciate your support. From where I am, as someone who is very tired and very angry, I guess I’m focusing on all the wrong things. I don’t recall being this angry since Jack left the PICU 7 years ago attached to a bunch of equipment he didn’t have when he entered the hospital. I always believed that when you left a hospital you were supposed to be better off than when you entered. I suppose what constitutes “better off” is all a matter of perspective. In any event, I need to get to a “happy” place and try and remember why we had the surgery done in the first place. It’s time for a major attitude adjustment!
The picture is of Jack getting his nightly head massage from me. He loves his head massages. The other one is of Mary doing what we do around our house for fun … race around in wheelchairs :-)
Have a great week!
X-ray #1 is Jack
X-ray #2 is Anthony
My friend's son, Anthony, had a spinal fusion surgery done less than 2 weeks ago at UMass Medical Center. She gave me permission to share his x-ray. Anthony's surgeon used the wires that our local ortho would have used if we'd had the surgery done here. I might add that Anthony is home from the hospital, requires no body brace and is SITTING in his wheelchair already.
Okay, I will admit that comparing Jack and Anthony is like comparing apples to oranges. Jack has a neuromuscular disease, "extremely poor bone quality" (to quote the operative summary) and had a 90 degree curve (corrected to 52). Anthony has CP, better bone quality than Jack and had a 70 degree curve (corrected to 20). But, I thought it interesting to show the difference in techniques and the recovery period. It makes no sense to make myself crazy over this whole thing, but I am. I might also add that Anthony had a compassionate and personable orthopedic surgeon and Jack did not -- which is no doubt the crux of why I am having such a difficult time coming to terms with what was done to Jack and whether it was in fact the "best" procedure for him. Maybe if I'd had a surgeon with a little compassion and empathy, I'd be comfortable with my decision. Anyway, it is what it is. I'm just glad Anthony is doing so well and just a little ticked off that Jack's been through hell and he's still not where he needs to be.
There, I feel so much better now!
Just a note of thanks for continuing to check in on Jack and for leaving comments (thanks too if you only check in, but don't leave comments). It means so much to know that you all care about us! Nothing new to report, Jack continues to lay in his bed 24/7 and be happy. Come to think of it, being confined to bed for a few months doesn't sound so bad after all! Where do I sign up?
************
Pat, I'd love that Rx for Hawaii :-)
As I was driving to work this morning, I was thinking about my comment in my prior entry regarding how long the "good times" will last (I drive close to a hundred miles a day by the time I get my kids to school, get to work and back home, so there is a lot of time for thinking). I would never have believed 8 years ago that having a child with a debilitating disease, lying in bed unable to move, hooked to a ventilator, unable to eat or breathe on his own . . . but having good "numbers" and a smile on his face would equate to "good times". Life is just so warped, you know?
In any event, the "good times" continue because Jack's x-ray looked marvelous. The ortho's comment was "that's a LOT of screws". He did say that Jack should be able to get out of the body brace in two months . . . before Christmas. Yea! More "good times".
Wishing all of you "good times" ... whatever that may be in your world.
**Even more good times - we received authorization today from Medicaid as secondary insurance (primary insurance already approved 2 months ago) for a ceiling mounted track lift system for Jack. That is HUGE "good times" in MY world :-)
"I am extraordinarily patient, provided I get my own way in the end"
(Margaret Thatcher)
Some truth to the above quote. Problem is, I have to keep redefining what "my way" is. I think I'm now on Plan "H", at least. I suppose that's life, eh?
I am exceedingly tired of "hurry up and wait". It's been 7+ long years of waiting for something. Yet again, here we sit, going nowhere fast ... waiting for the months to pass so Jack can sit up in his wheelchair and "engage" in life again. I can't wrap my head around the fact that Jack has been flat on his back since July 28th. I'm not sure why it bothers me so much, Jack doesn't seem to have a problem with it! Jack continues to be happy and content. He is doing awesome from a medical standpoint -- no signs of infection, his O2 sats have been consistently 100% and his heartrate is back to his baseline - all signs that he is comfortable and feeling good. I've been told to be patient because there is a light at the end of this tunnel ... I just fear that it might be that of an oncoming train :-) The pessimist in me (or perhaps the realist) is wondering just how long the "good times" will last.
Jack sees our local ortho this coming Wednesday for an x-ray, which will be sent to our St. Louis ortho. I'm anxious to get an x-ray, as I want to be assured that the hardware is still where it is supposed to be and nothing has shifted or broken off. We've got an appointment with the general surgeon in a few weeks to talk about getting the broviac out. When I called to get an appointment, the person on the phone asked if I could get the records from St. Louis to them. Yeah, right ... if you've got room for a few shelves of records. I just laughed and told her that they really don't need the records as I can give the doctor all the information he needs.
I'm hoping to get the "ok" from the St. Louis ortho to get Jack out of his full body jacket by Christmas. If we can cut off the portion that stabilizes his leg and just keep him in the torso part, we can get him up in his chair. All my siblings will be home for Christmas this year -- I have two brothers and a sister who live out of state (and two sisters who live here in Phoenix). Between us, we have 19 kids! This will be the first time we've all been home in about 15 years and most of us have doubled our families since that time. Of course, we want to have a family portrait done, but if Jack can't sit in his wheelchair, I'm not sure how he can be in the picture. I've got to believe he can get out of the full body brace by then.
The pictures are from this past week. I so badly want to pick Jack up and hold him. It's so hard not to be able to wrap my arms around him. I've got to be content with simply holding his hand right now. I know ..... patience ............
Not too much excitement going on at the Schrooten house, which is always a good thing. Jack is doing well and is through with the IV Vanc. The plan when we left St. Louis was to follow-up the 6 week course of Vanc with 11 months of an oral antibiotic. However, since a specific source of infection was never identified, since his bandemia and other indications of infection were on their way down before we even (reluctantly) agreed to put in the broviac and because we don't have the orthopedic docs "in our face" forcing us to put him on antibiotics, we've decided to forego the prophylatic oral antibiotics. This decision isn't made easily and, if we are wrong and there is an infection in his hardware, I suspect something should show up soon that would let us know. However, I'm very comfortable with the decision. As far as getting the broviac out, I'm going to call this week and try and get something scheduled for about a month out. My biggest stressor is making sure when he goes back to the operating room to have the broviac removed that everyone in the room understands that they can't just pick him up and move him to the table, that he must be moved in a specific way and handled very carefully. I figure the only way I'll get them to listen to me is to bring his post-spinal fusion x-rays. That should do it, don't you think? I know Jack isn't breakable, but I've got to believe there is a reason the ortho in St. Louis wants him flat on his back for 6 months. I'm already stressed out about this and I haven't even met the surgeon yet. I so want to be through with doctors and medical stuff!
My latest challenge has been with the school district which is not timely providing Jack with the services he is entitled to under his IEP. I'm sending off a complaint to the Department of Education tomorrow. I really don't have the time or energy to deal with this kind of thing, but it's not fair to Jack to ignore it and it's wrong for the school district to get away with it. I do tire of always having to advocate ... wouldn't it be nice if people would just do what they are supposed to?
I posted a few pictures of the kids doing what they do on a lazy Sunday. Jack hanging out on the couch watching the Rams-Cardinals football game, Mary reading a book, Hilary on the computer and Eric stuffing his face with Cheetos (and why is my kid eating Cheetos in a white shirt???). Time for me to start the laundry.
Have a great week.
For those of you who may not have seen this video about the remarkable father and son team of Dick and Rick Hoyt ... I just have to share. You'll need 4:13 minutes and a box of Kleenex.
CAN
If you haven't heard the story ...
Eighty-five times Dick Hoyt has pushed his disabled son, Rick, 26.2 miles in marathons. Eight times he's not only pushed him 26.2 miles in a wheelchair but also towed him 2.4 miles in a dinghy while swimming and pedaled him 112 miles in a seat on the handlbars -- all in the same day. Dick has also pulled him cross-country skiing, taken him on his back mountain climbing and once hauled him accross the U.S. on a bike. And what has Rick done for his father? Not much -- except save his life.
The love story began in Winchester, Mass., 43 years ago, when Rick was strangled by the umbilical cord during birth, leaving him brain-damaged and unable to control his limbs. "He'll be a vegetable the rest of his life" Dick says doctors told him and his wife, Judy, when Rick was nine months old. "Put him in an institution". But, the Hoyts weren't buying it. They noticed the way Rick's eyes followed them around the room. When Rick was 11 they took him to the engineering department at Tufts University and asked if there was anything to help the boy communicate. "No way" Dick says he was told. "There's nothing going on in his brain." "Tell him a joke," Dick countered. They did. Rick laughed. Turns out a lot was going on in his brain. Rigged with a computer that allowed him to control the cursor by touching a switch with the side of his head, Rick was finally able to communicate. First words? "Go Bruins!" After a high school classmate was paralyzed in an accident and the school organized a charity run for him, Rick pecked out "Dad, I want to do that." Yeah right. How was Dick, a self described "porker" who never ran more than a mile at a time, going to push his son five miles? Still, he tried. That day changed Rick's life. "Dad" he typed, "when we were running, it felt like I wasn't disabled anymore." That sentence changed Dick's life. He became obsessed with giving Rick that feeling as often as he could. He got into such hard-belly shape that he and Rick were ready to try the 1979 Boston Marathon. "No way" Dick was told by a race official. The Hoyts weren't quite a single runner, and they weren't quite a wheelchair competitor. For a few years, Dick and Rick just joined the massive field and ran anyway, then they found a way to get into the race officially -- in 1983 they ran another marathon so fast they made the qualifying time for Boston the following year. Then someone said "Hey, Dick, why not a triathalon?". How's a guy who never learned to swim and hadn't ridden a bike since he was six going to haul his 110-pound kid through a triathlon? Still, Dick tried. Now they've done 12 triathlons, including four grueling 15-hour Ironmans in Hawaii. When asked why not try and see how he'd do it on his own, Dick said "no way". Dick does it purely for the awesome feeling he gets seeing Rick with a smile as they run, swim and ride together.
Two years ago Dick had a mild heart attack during a race. Doctors found that one of his arteries was 95% clogged. The doctor told Dick that if he hadn't been in such great shape, he probably would have died 15 years ago. So, in a way, Dick and Rick saved each other's life. Rick who has his own apartment (and receives home care) works in Boston, and Dick, retired from the military and living nearby, find ways to be together. They give speeches around the country and compete in some backbreaking race every weekend, including Father's Day. That night, Rick will by his dad dinner, but the thing he really wants to give him is a gift he can never buy. "The thing I'd most like" Rick types, "is that my dad sit in the chair and I push him once".
Only three more days of IV Vancomycin. Yeah!! Mark will be so happy. Since Mark was at the hospital when they did the training on the broviac, he got to learn how to care for it and administer the vanc -- so, I figured I'd pass on the training and let Mark handle it. I haven't had to deal with the broviac/IV meds at all. It's unusual for me to give up just a bit of "control" and for Mark to handle a "nursing" task. As Mark will be the first to tell you, eight years ago he would get lightheaded just walking into a hospital .... now look at all he can do!
Jack's broviac site looks marvelous ... thanks for crossing all appendages on his behalf (and for the prayers too). As for how long the broviac will stay in - I'll request for at least another month just to make sure he doesn't spike a fever or give us any other indication that there is still an infection somewhere in his body. I'm not sure who will take it out. I'm going to ask for a CT surgeon since a CT surgeon put it in. I'll have to see what my pediatrician has to say. I suspect it will be near impossible to find someone to take it out -- since they won't want to touch someone else's "work".
I got an email from Jack's neurologist today asking if I'd give consent for her to check a sample of Jack's DNA from his frozen muscle sample that she has been saving in her lab. She is going to look for a gene mutation in a particular protein. I think it is awesome that she still has Jack in the back of her mind and continues to try and figure him out. She said they will be sequencing the whole gene so it will take at least six months before I'll hear if there is a defect in the gene. At the end of the day, it is just "information" ... something I so desperately wanted 8 years ago. It doesn't mean so much to me today. But, it might help someone, somewhere along the way.
Jack is very happy these days. If only I could capture 1/100th of his patience and contentment with life ....
I'll post some updated pictures soon.
Eric got his new glasses today! I know, it's been almost 2 months since he saw the ophthalmologist in St. Louis, but I've been a bit preoccupied. He was too funny when he first put them on, it was if he was seeing for the first time. Now he just says everything looks "floaty".
Speaking of Eric ... I got a phone call last night from his teacher. It's not a good sign of things to come when your preschooler is already getting calls to the parents. It seems that Eric has been trying to sneak toys out of his classroom -- under his shirt -- to bring home. He's been caught twice now! Good grief, it's not as if he doesn't have enough toys of his own.
I suppose it might have something to do with the chaos of the last two months and all the attention that has been paid to Jack. Although, it's par for the course for Jack to get most of the attention in our house. Who knows how all this Jack stuff will affect my other kids long term, but I guess I'd better start looking into military schools for Eric now :-)
On the Jack front ... I almost hate to post this, but we've encountered another "problem". The area where Jack's broviac enters his chest is *slightly* red and with a little bit of puss. Ugh! Jack's disposition is fine and he has no fever. So, at this point, we are treating it with a topical antibiotic ointment and hoping it might have something to do with being in the body jacket yesterday and perhaps rubbing against the stitches holding the line in place. We'll see how it looks tomorrow. I'm scared to call my pediatrician because I don't want to hear him tell us Jack needs to go to the ER. Don't worry, if I thought Jack looked *bad* because of this, I wouldn't hesitate to make the call. Please keep your fingers and toes crossed that this resolves without medical intervention.
Ciao and goodnight.
The ortho said the bumps on Jack's back are his spinous processes and not hardware. Phew! The ortho thought the body brace was a bit much and he thinks it's crazy to keep him in the body brace and in a reclining position for 6 months. I'm just not sure I want to rock the boat though ... I think I'll stick with the St. Louis ortho's protocol at this point. The orthotist bubbled out the area in Jack's body brace where the bumps were hitting and we're good to go.
Jack's pediatrician had them do yet another blood draw yesterday because he still wasn't sure about the numbers. I guess they need to hit him over the head before he will believe them. His potassium is low - which makes sense because it was low in the hospital and he was getting supplemental potassium there. "C-diff" has also been mentioned. Which would also explain the low potassium. It's just a vicious cycle when you are on meds, which is why I've always been opposed to any type of maintenance meds and why I stay away from doctors!
This too shall pass ................
Pictures from today are Jack getting put in the car - poor kid, it looks like he is being restrained and he hasn't done a thing wrong. The other one is happy Jack after we got home and he got out of the dreadful body brace. His hair is almost long enough to put in a ponytail.
**Michelle (Jack's personal hair stylist :-) -- can you think of any way to cut Jack's hair while he is laying down??
That's the update from here. Thanks for checking in.
I emailed Jack's St. Louis ortho today because the "bumps" on Jack's back are making me very nervous. They just don't feel like something that belongs there (ie. the spinous processes) - they are not smooth and are almost pointy and they seem to be sticking out more with each passing day. What if it is hardware ... what then? Anyway, I mentioned all of this to the ortho and asked if he thought Jack should be seen by our local doc sooner than next month, to which he replied he should be seen this week. Jack's local ortho fit him in first thing Wed. morning. After that appointment, it's off to the orthotist's office, who also gratiously agreed to fit us in. When I called and asked if there was any possibility our orthotist could see Jack, I was told "for Jack, Brett would do anything". How awesome is that?!
My pediatrician called and said he doesn't believe any of the numbers from Jack's most recent labs are accurate, so he ordered more labs today. He said all Jack's labs should be "stat" because if the blood sits around for any length of time, the results can be messed up. I called home when the nurse came to draw the blood and asked if they knew it was a stat order. He said that the doctor's orders didn't say stat. Hmmmm... In any event, he said he was headed directly to the lab. Let's hope Jack's numbers are all good.
On a very sad note, my friend ... Bob Cimarelli passed away today from pancreatic cancer. He has two young children who will miss their daddy greatly. Go fly with the angels my friend.
Sorry for the break in updates. Nothing really exciting going on ... which is a good thing. I did email a picture of Jack's back showing the bumps sticking out to his ortho in St. Louis. He emailed me back saying that he reviewed Jack's x-rays and the picture and he thinks it's probably Jack's spinous processes (you'll have to google that if you want to know what it is :-), but it could be the spinal implants - although less likely. He wants us to see our local ortho to have it checked out (and then what???) We have an appointment in October with our local ortho and I don't really see any urgency in having it looked at sooner. The ortho also pointed out that we need to make sure he doesn't get pressure sores on those areas because as he says "if the spine implants are becoming prominent as the swelling subsides and the skin would breakdown the implants would become infected. We both know what that would mean for Jack." Yikes! Guess we'll have to watch those areas very closely. I do not want any more complications!
I got a call first thing this morning from Apria telling me they got the labs back and Jack's blood sugar is "critically" low. The woman asked me how he was doing. I wanted to say "oh my gosh, just terrible, he is flat on his back in bed and hooked up to life support". But, I didn't think she'd find the humor in it! I just got a call from our pediatrician's office and, of course, our doc isn't in this weekend and the guy who called hasn't a clue what is going on or why they are drawing the labs. He said there could be a lot of reasons for low blood sugar. I told him Jack was fine and he was okay with that answer. He also said Jack's vanc levels are now a little low. I asked about some other numbers that were elevated last time that are indicative of an infection. They are higher than last week. Ugh! He suggested I call the ID docs in St. Louis and give them this information. Yeah, right ... I'll get the on-call doc who likewise won't have a clue what is going on and will wonder why I am calling St.Louis when I live in Phoenix. It's not worth the hassle and it's unlikely they'd do anything with the information on a weekend. Our regular ped will be in on Monday, we'll see what he has to say, but I suspect there will be changes to his vanc dosage and who knows what else next week.
Not much else going on here. Mary is at Irish dance practice, Mark is out running errands, Hilary is on the computer, Eric is harrassing the dog and Jack is watching videos. My house is a disaster, but I just have no energy to clean. I am definitely in need of a swift kick in the pants to get me motivated to get up and move.
Hope you all are having a nice weekend!
*Cindy ... I crave "normal" :-)
I spoke with Jack's local orthopedic surgeon today because he will be doing the follow-up x-rays and sending them off to the ortho in St. Louis. I told him about the surgery, the complications, the recovery plan and what is going on with Jack as of now. His words were "sounds like they threw the whole kitchen sink at him". He went on to tell me that he doesn't use screws with his neuromuscular kids -- he uses wires (sounds so much more tolerable) nor would he have braced Jack - which means that Jack would be able to sit up by now if we'd had the surgery done here. When I mentioned about the traction they put Jack in to do the surgery -- he acknowedged that "some places still do that". Guess he doesn't "rack-um" either. It never really occurred to me that there would be completely different operations/approaches to solving Jack's scoliosis problem. I guess it's shame on me for not asking enough questions. Not sure I needed to know the information I got today. At the end of the day, if Jack "survives" this whole recovery period and can sit up in his chair at the end of six months, it won't matter. If he can't, well ... I won't even go there yet. I do have to say I so much prefer the personality of the surgeon here in Phoenix and when I told him that we're not going back to St. Louis, he said, jokingly ... "so, I get him by default". I guess he does! Fortunately, he is a very easy going guy with no arrogance about him.
Jack is back to getting his OT this week and he is very glad to be doing his "work" again according to his therapist. We're counting the days until we can be done with the IV vanc and get the broviac out. We will probably get Jack out of bed sometime this week to give him a change of scenery.
Have a good evening and thanks for checking in.
Jack is doing "OK" ... mom is feeling "blah". We've been home for a week now - plenty of time to get settled back into the normal routine of life. Problem is, I'm having a heck of a time getting there. I find myself constantly lost in my thoughts, unable to focus and just not being very productive. My philosophy of life has generally been "$h#t happens - so just deal with it". Yet these days, I'm finding it much more difficult to "deal with it". Every morning I pass the same sign on my way to work that lets me know that the turn off to Interstate 8 and San Diego is only a few miles up the road from my exit. You have no idea how much I want to keep on driving until I hit the sandy beach! If only it was possible to truly escape from it all.
Before this last year, my "claim to fame" had been my ability to keep Jack out of the hospital and away from doctors. No small feat for a child with all of Jack's issues. It's not that I don't like doctors ... for the most part, I think doctors are terrific people. However, spending too much time around medical people forces the realization that Jack isn't a typical kid and I don't live a typical life. You may wonder how I could think otherwise given Jack's obvious medical interventions, but you would be surprised how easy it is to be blinded to what you don't want to see, especially when - on the surface - my days are much like everyone else's. I get up every morning, get myself ready for work, drag three kids out of bed, shove breakfast in them, make lunches for school, argue with them to brush their teeth and struggle to get them into the car so that we can pull out of the driveway before the clock strikes 7:11 am. The difference is, I am greeted every morning by a nurse (Mary Poppins, actually!) and I leave my house without one of my children, as he sleeps innocently unaware of the morning chaos, with little understanding of what the world is like outside of his protected universe. Okay, so maybe there are a few more differences (too many to list). However, from the outside looking in, we've managed to pull off the appearance of a fairly "normal" life. That is, until this last year...
This last year has been a monumental slap of reality that has knocked me out of my comfort zone in a big way. Starting with Jack's unplanned surgery last summer, followed by a year with a lot of respiratory illnesses requiring more doctors' visits than the last 4 years combined and culminating with a major surgery that caused Jack a great deal of pain, requiring too much time in the hospital and a recovery period from hell. Add to that, the fact that we were finally given a name for Jack's disease and he is now officially one of "Jerry's Kids". Yep, there's no denying it any longer ... I am the parent of a medically fragile child who has a neuromuscular disease that is stealing away his health more and more each year. Through this blog, I am also sharing - for the first time with many of you - a glimpse into our not-so-normal life. It's tough to live it, but even tougher to admit.
Anyway, enough about how I'm feeling ... after all, this blog is supposed to be about Jack! Jack is pretty much laying in bed bored out of his mind wondering what the heck hit him. I so desperately want to pick him up and hold him, but it's not a possibility right now. So we stand over his bed and talk to him, read him books and mostly change out the videos he watches all day long. We've not gotten him out of bed because that would require putting him in his body jacket, which is more like a torture device for all involved. The area on his back where "something" is sticking out (a lot) is freaking me out. I'm told it's his ribs, however, the typical anatomy doesn't have ribs sticking out alongside the spine. I considered emailing the orthopedic surgeon to get his thoughts, but I'm sure without actually seeing it, he won't venture a guess. I did email him and ask what the degree of correction was for Jack's curve. He had his nurse call me (query why he didn't just email me back with the answer) and she told me he was 90 degrees before surgery, 53 after -- a 37 degree correction. I have no idea if that is considered a good result or not. Doesn't really matter ... it is what it is.
It is definitely time for me to end this post ... if anyone is even still with me! I'll try and post new pictures soon, but I'm afraid they are all going to look the same ... Jack laying in bed. I could paint his room and rearrange the furniture every week to give you something new to look at!
I'm signing off ... time to try and get some sleep.
Thank you for riding along with us on our journey.
