Friends and Family

Friends

Mary's friend, Jimmy - from St. Louis, is in town visiting with us for a week. We've been keeping him busy - they've been to an Arizona Diamondback's game and today, we drove up to the Grand Canyon and got a little hiking in. Pictures are posted below.

Family

On the way home from the Grand Canyon, we got the news that my mom was taken to the ER following the results of a CT scan she had yesterday. It appears my mom has a brain tumor. We went directly to the hospital once we got back into town (looking like a bunch of vagabonds following our day of hiking). We won't know any specifics until tomorrow when we meet with the neurosurgeon.

On the Jack front, today he had someone new care for him. As I guessed would be the case, the nursing agency did not make any effort to staff us while Kristi is out on vacation (a rant for another day). I only needed coverage for this Friday and next Friday (as Peggy is coming into town to cover the other days). Fortunately, Jack's teacher offered to watch Jack for us. She is not a nurse - she is an EMT (in addition to being a special education teacher). She is very comfortable with Jack's care -- she knows trachs, she just needed training on the vent. She did wonderfully (better than some nurses we've had) and Jack just loves her. The only "down" side is that we have to pay her out of pocket because she isn't a nurse and can't sign on with our agency. It's a small downside and I'm so glad to have a back-up person to help out with Jack.

Have a great weekend everyone.

Mary and Jimmy

Shannon

They asked me to take a picture with them jumping (it's a kid thing)

Hiking in the Grand Canyon

After the hike

The Grand Canyon - an amazing sight

Profound Words

The following entry is taken from the website of a young man named Miles Levin. Miles is 18 years old and he is dying of cancer. Miles' story was recently featured on CNN. This is a child who is wise beyond his years. His words are very moving and worth sharing.

Another reminder to enjoy the moment.

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June 26, 2007

Due to copyright go directly to Miles' CarePage Miles page: levinstory

The Sister's Perspective

What is it like to live with a brother and sister who have a disability? First off, I love my entire family and I wouldn’t change anything about any of them. And I really don’t think about Hilary as being disabled. She can talk, walk, eat, go to school, and do everything that someone without disabilities can do. The fact that Hilary is deaf is not the life changing factor in our family. Jack on the other hand, cannot walk, talk, eat, or do most the things regular kids can do. Jack is the one who is stared and pointed at. He is the one who needs nurses and special attention. Jack’s nurse Kristi is absolutely wonderful though and I’m not at all sorry she is in my house everyday. When people ask about my family and I tell them about Jack, most of the time they get this look on their face, a face that has sympathy and pity on it. It’s the face I absolutely hate. I get frustrated when people say they are sorry, I'm NOT sorry!

There are days when I think to myself, “why me?” Why don’t I get to have the life of a normal family, going on normal family vacations, and having normal brothers and sisters? But when I think about it, what exactly is normal? Everyone in my family has come to hate that word. Personally, I don’t think there is a “normal”. Every family has their struggles and their weirdoes. Not that Jack is the weirdo; I leave that up to Hilary and Eric :-)

The way I see it, life could be much worse. For instance, if there was no Jack. To me that would be even worse. I worry about him and what will happen when he gets older, but I worry about everyone in my family. I am part of this family for a reason. I’ve decided to just deal with the fact that I don’t have a “normal” family. For those of you who know Jack personally, you know he is the sweetest 8 year old out there. I don’t care that he isn’t “normal”. Jack makes me happy and I love him very much.

Everyone gets frustrated and has those days. I am very lucky to have Jack in my life. I have met some very amazing people because of him, and I have come to know and love many of you and your kids too. Besides, without Jack and Hilary, we wouldn’t be "our" family, we wouldn’t be unique. So those of you out there who worry about your other children, don’t. They will be frustrated, they will think “why me?”, but I guarantee you they wouldn’t change a thing if they had the chance.

Mary
Age 14
(in her own words)

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I noticed after posting the above picture how remarkably similar it is to the picture of me and Jack. Do you think she is her mother's daughter?

Writer's Block

I feel like I should be coming up with another "profound" observation, revelation or enlightening post. Yet, there is nothing there. Usually, my best writing comes from the depths of my heart and soul with emotions that overcome me. I feel compelled to sit down at my computer and write, and the words ... they just come. Right now, the words aren't coming. What does this mean? Am I content? Am I bored? Do I thrive only on crisis? Have I told all I have to tell? I don't know, but it seems silly to keep blogging with simply pictures and trivial updates. Maybe it's just a lull before the storm .... whatever that storm may be.

I've asked Mary to fill in for me -- to write about what it's like to grow up stuck between two special needs siblings; to live with nurses in your house almost every day; to have a brother whose medical needs keep you home more than you'd like and limits what you can participate in. I read and edited her first draft and sent it back for a re-write :-) She insists it will never be "good enough" for me. I assured her that is not the case, it just needs some fine tuning. So, stay tuned for Mary's thoughts .... coming soon.

In the meantime, hopefully, I'll be "struck" with something interesting to write about. You now understand why I don't think I could ever write a book ... writer's block!

Have a wonderful week.

Mary's Room

For those of you who have been waiting (all two of you) - here are pictures of Mary's "new" room. The black paint on her closet doors is chalkboard paint -- kinda cool! The furniture and bedding are from Ikea.

The Road Less Traveled

Two roads diverged in a wood, and I -- I took the one less traveled by, And that has made all the difference.

Robert Frost, The Road Not Taken

This was the view from my car this morning on the way to work. Rather than take the Interstate, I took the back roads through the Gila River Indian Reservation. I love to take this route because it's so "empty" - void of cars, people and noise. I opened my windows and soaked in the peacefulness of the stillness all around me. As I was driving and thinking, I thought of the analogy between the road less traveled and my life. However, upon further reflection, I realized that this road less traveled is calm and peaceful, my road less traveled is chaotic and unpredictable. One road I chose, one road I did not.

Just an observation.

The Other Daughter

As many of you have probably noticed, Hilary is conspicuously absent from most of the pictures I post. There are several reasons for this --

1. She is 16 (aren't all sixteen year olds anti-social?)
2. She is an introvert and a loner.
3 She's not home most evenings -- she has a job at our local grocery store.
4. When she's not working or at school, she spends every spare moment drawing or writing.

Because she didn't hear for the first five plus years of her life, Hilary is a very visual kid and has always been an observer more than a participant. Being deaf and an introvert also makes for a child who lives in her own world most of the time. Hilary has a vivid imagination from which she has created her own series of characters and stories. All of her stories involve imaginary animals (never people) and they are a bit "out there". Although her stories aren't my genre of reading -- they are really quite good. You will always find Hilary with a pencil and a notebook in her hand no matter where she goes. Always drawing or writing ... always creating.

When I think of Hilary as an adult, I conjure up this image of a crooked old house, with a crooked roof and a hundred cats and dogs running all around with Hilary sitting at her desk, hair in disarray, diet Dr. Pepper cans scattered all about, as she pounds out a story on her computer one finger at a time. But, as long as she is happy and, more importantly, self-supportive -- then I'm happy.

So there you have it ... the mystery of the "other daughter" who rarely shows her face. I snapped some pictures of her the other night after she got home from work. See, she really does live with us!

Weekend in Pictures

Mary and Jack

Jack and his Grandpa (my dad)

Eric trying to keep up with the big kids

Jack watching the kids play

Double Trouble (Eric and Joey)

Eric using Jack's wheelchair to play the computer (it's the perfect height)

Friday was family movie night (we watched Freedom Writers -- a great movie)

That's all folks!

Blog Template

No you are not losing your mind (but perhaps I am) - I've changed the template to the blog about 5 times this weekend. My previous "new" template was too dark for me. Mary likes this one - she says it puts the focus on my words and not the surroundings, but I'm waiting for my sister to tell me it's too "bright". (Maureen?) I'm open to feedback, so please do share. After all, I do need to keep our readers happy :-) I wish I had the computer knowledge to create my own template, but I don't -- so, I have to go with what's available.

We are heading to my sister's house for a Father's Day get together. I'm not sure Jack will be too thrilled about getting out in 100+ degree temps, but he is going!

Thanks for checking in and Happy Father's Day to all the fathers who check in on us.

It's All About Jack

Since this is Jack's blog, I suppose you are wanting to know how HE is doing. The problem is, he is doing so well, there really is nothing to update. It's pretty much the same routine day in and day out around here and trust me, we like routine!

We have no plans to take a summer vacation this year. It will be the first summer in three years that we haven't traveled to the wonderful vacation destination known as "St. Louis Children's Hospital". It is also the first summer in two years that Jack hasn't been subjected to surgery. He is pretty darn happy about that. Kristi will be out of town the week of July 4th and since I don't want to take that week off from work and I know the nursing agency won't staff me - I convinced Peggy to fly out and watch Jack that week. Peg is quite brave coming to Phoenix in July ... average temps are 110 degrees!

Some have asked where we are in the process of getting Jack tested on the eye gaze communication device. We are still putting together the paperwork to get the evaluation approved. We'll need congressional approval and the Pope's blessing along with pre-auth from our Department of Developmental Disabilities (at least it seems that way at times.) Our private insurance has always paid for aug com evals and all of Jack's aug com equipment, however we are still required to jump through all the necessary hoops just in case it is denied and the taxpayer has to foot the bill. So right now, we wait.

Another thing I've been meaning to share is that since Jack got his new bed/mattress last April, his pressure sores have completely disappeared and he doesn't have a speck of redness on those areas of his back that protrude. So we can now check that complication off our list.

Well, that's about all there is to report - and I'm stretching it to believe this post is even remotely interesting. I'll close with a short video clip of Jack watching a short video clip of a little boy named Angus (who lives in Scotland and who also happens to have a trach). Angus is having a good ol' time throwing things on the ground and laughing and Jack is laughing right along with him.

Enjoy!

Make video montages at www.OneTrueMedia.com

But, You Don't Look Tired

One of the other attorneys in my firm stopped by my office this afternoon to ask me about estate planning for her client who has a child with special needs (me being an estate planning attorney). We talked about Medicaid qualifications and long term planning and one thing lead to another and I got to talking a little bit about Jack (I rarely talk about Jack at work). At the end of our conversation, she exclaimed “but, you don’t even look tired! You should at least look tired!”

Would that not make your day? Despite the fact that most days I feel like someone beat me up … at least I don’t look tired! I practically skipped out of the office this evening. Then I walked into my house, took one look at the mess everywhere and immediately felt a hundred years old again. But, hey, I take some solace in the fact that at least I don’t look tired. Hehe!


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To my friend Carrie -- my secret --> I live in Arizona . . . you live in New Jersey! (need I say more?! :-)

Happy Monday

After a very uneventful weekend, I have absolutely nothing to update. We didn't even make any more progress on Mary's room. I find that I'm a lump most weekends, trying to recover from the stresses of work (which is out of control these days) and just getting the normal household stuff done. I did manage to get a book read -- "How Doctors Think". It was recommended by one of Jack's doctors. It was written by Jerome Groopman - who also wrote "The Anatomy of Hope", another good book. Usually when I read a book, I start to fall asleep after a page or two, but this book was a very good read and I highly recommend it. However, if you are into novels and escapism, it's not the book for you. With my life, you'd think I'd want to escape in my reading and not spend time reading about what I really don't like, i.e. dealing with doctors. But, as they say ... knowledge is power!

Have a great week my friends. I'll try and post something more interesting later this week.

Eight Years Ago Today

June 8, 1999.

Eight years ago today Jack was discharged from St. Louis Children’s Hospital PICU after a three month stay that began on March 7, 1999. We were about two weeks short of discharge when I was asked who I wanted to manage Jack and his ventilator after we left the PICU. It never even occurred to me that we had to have someone “manage” the vent. I think the term they use is …. denial. I could not wrap my head around the fact that I had to actually walk out of that PICU with this huge monster of a machine (the “portable” ventilator) and that Jack had to actually be attached to it to breathe.

The one thing I did know with certainty was that I’d met every pulmonologist from Children’s during our multiple stays in the PICU and there wasn’t one of them that I wanted to work with. Realizing that I wasn’t going to budge and give them a name, one of the PICU intensivists - Dr. M - came to my rescue and said he would follow Jack if I wanted.  While Dr. M agreed to follow Jack, he assigned the day-to-day task of working with me, Jack and the vent to one of the PICU Fellows -- Dr. Garcia – a very compassionate and a very patient person. It shouldn't come as a surprise that I was not an easy parent to deal with those first few years of Jack’s life. Come to think of it, I’m still not an easy parent to deal with :-) Yet, Dr. Garcia was there with us every step of the way for two years. I had his pager number and email address and he was available and willing to help any time, any day. Upon completing his fellowship, Dr. Garcia returned to Puerto Rico. However, to this day, we still hear from Ricardo on Jack’s birthday, at Christmas and other holidays - he even remembers me on Mother's Day.

Jack and I were fortunate to be in the right place at the right time and were blessed by the willingness of two very special physicians to take on the challenge of Jack (and his mom). They will both forever be a part of our “team”.

Drs. M and Garcia

One of the things I am most proud of is that since his discharge eight years ago – Jack has not been admitted to the hospital for a respiratory illness - ever. That’s quite remarkable for a ventilator dependent kid with a neuromuscular disease. About two weeks after Jack’s discharge, Dr. M told me in an email: “When we send home an infant on a ventilator and he/she is able to stay home for the first few weeks, i.e. they don’t need to be readmitted for some emergency right away, we feel this is a good sign. Yes, a vague sign, but a good sign nonetheless.” Needless to say, it was more than a vague sign – it became our standard – we don’t “do” ERs or hospitals (unless there is surgery involved or we disconnect ourselves from our vent for an extended period of time).

A lot of the credit for keeping Jack out of the hospital goes to Jack’s nurses, for not only providing excellent care, but for also trusting me. There have been many, many times when Jack’s nurses have strongly suggested that we go to the ER when Jack was sick. However, whenever I’d take the position that “we can handle this at home” – which is the position I always take - they have always deferred to my judgment and jumped in to get the job done to keep Jack home. Jack has had an amazing team of physicians and nurses who have kept him healthy and home!

During his extended stay in the PICU, Jack amassed quite a significant fan club among the doctors, nurses and respiratory therapists. As you can imagine – it was those eyes and that smile that drew people to Jack’s bedside. A few days before discharge, I left a book by Jack’s bed for those people who had cared for him to sign. Here are just a few of the comments left in Jack’s book:

Jack, I look forward to coming to work so I can see you. Seeing you always keeps my life in the proper perspective because even after all you have been through . . . you always have that perfect little smile ready to cheer me up! You are just the most wonderful baby boy . . . you are “laid back Jack” and I love you! P.S. I will always hold you dear to my heart! You’re one tough little guy!

Jack, I am so glad to hear that you will be going home soon! Not because I want you to go, but because you deserve to be home with you family and friends who love you. I will always remember coming into work and looking forward to seeing your absolutely adorable smiling face and your big bright eyes. Helping to take care of you has always been a pleasure and a true rewarding joy.

Jack, to one of the most beautiful babies I’ve ever seen. May these last months be the saddest you have, so everything is bright from now on. Stay as you are – beautiful.

Smilin’ Jack – We are so glad that you finally get to go home and be with your family. I know your sisters miss you! I am really going to miss seeing your darling, smiling face!! On bad days, I would come by and play with you for a few minutes and you would totally cheer me up. Take care sweet boy.

Little Jack Schrooten – a great title for a storybook. The little guy with the greatest smile. . . You will be missed, but I am so happy you are going home. I will be looking forward to social visits only in the future.

Jack, over the past 6 months I’ve had a chance to get to know you inside and out – all you have to show for it is a few scars! What I have to show for it is good memories of a handsome little boy with a wonderful family. My biggest wish for you is that you have a long, healthy life filled with love and happiness. Dr. M (Jack’s cardiothoracic surgeon)

Sweet, sweet Jack. This place is going to be a little less bright without your sunshine smile that you were so generous with. It has been a wonderful blessing to have known you and your mama. You are definitely a little angel sent from God to remind us why we do what we do. I guess you’ll have to find some other girls to flirt with. Just remember you can always come and visit – you don’t want us to go into Jack withdrawal, so please keep in touch. Thanks for the memories. May God’s hand always stay upon you.

Dear Jack, I’m so glad you’re finally going home. You were such a special little boy. It really won’t be the same here in the PICU without you here though. I could always count on coming over to your bedside and getting a big ‘ol smile. Even when times were down you brought joy to us.

Jack, what are we going to do without your smiling face? I will miss you terribly. I’m sad for us, but happy for you.

Jack, if you only knew how much joy you’ve brought to all of us here in the PICU . . . bless you and your family. May you find the joy in your life that you bring to those who love you.

Finally, I share with you some pictures from Jack’s discharge day. Eight years ago today ...

The sign on Jack's bed when I arrived in the morning

Jack and the very special Dr. Garcia

Jack wearing the hat Dr. Garcia got him as a going home present

Jack and his primary nurse, Kym - who came in on her day off to say good-bye to Jack
(incidently, Kym cared for Jack again last summer after his spinal fusion surgery)

In the car on the way home

At home, snuggled in bed with all his crap (aka, life support equipment)
(isn't that enough to scare the hell out of any parent?)

Hair Cuts

Jack got a much needed haircut yesterday and, after Eric's last trip to SuperCuts -- Michelle kindly offered to cut Eric's hair too! We are so blessed to have Michelle come to our house to cut Jack's hair. She makes one aspect of Jack's life so much easier. Can you imagine the looks we'd get if I wheeled Jack into SuperCuts for a haircut ...

Van update: Guess what? It was a blown rear tire - but, it was the inner tire tube, so it wasn't visible from the outside. Thankfully, the repair bill was much less than we expected.

Have a great evening or a great day (depending on when you are reading this)

Lazy Days of Summer ...

Today was anything but a "lazy day" of summer. I'll try and give you a relatively short version and hopefully keep your attention!

I decided to sign Eric up for summer camp with our school district because I thought it would be good to get him in a routine before he starts Kindergarten. Camp begins at 7:45am and ends at 11:45am. I had it all figured out, I'd drop Eric off in the morning on the way to work and he would ride the school bus from the school where summer camp is to our home school (which is just around the block from our house) and Mary would meet Eric at the bus and walk home with him. Everything was set up and good to go. Then ... I get a call last week from the freshman girls' basketball coach wanting to know if Mary would be interested in attending their basketball camp. Camp runs from noon to 1:30pm. Sounds like a great way for Mary to make some friends before she starts high school and it can't hurt for her to learn a few basketball skills in the process. Only problem, I just lost the person who was supposed to meet Eric's bus at noon. Okay -- not a problem ... my niece Shannon will do Eric pick-up this week. Everything should run smoothly today.

I was home from work today because Jack had two doctors appointments. Our first appointment was with Jack's neurologist to get the botox injections to his salivary glands. We finished up early and had a few hours before we had to head across town to the pulmonologist's office. We decided to grab a quick lunch at the Mall. As I'm driving from the neurologist's office to the Mall, I notice the back tires of van are making a really loud noise and the van is kind of shaking. We get to the Mall and I completely forget to check the tires to see if they are low or flat. While at the Mall, I get a call from my niece telling me that Eric hasn't been dropped off yet and it's 15 minutes past the time he was supposed to be "delivered". I call Mark -- he leaves work and drives to the school where summer camp was held and they tell him all the kids were put on the bus, but they were running a little late since it was the first day of school. I have no idea where my 5 year old who has never been on a school bus in his life is!! I almost wished the kid had a cell phone so I could call and check on him. Finally, I get a call from Mark that Eric's bus has arrived and he is fine. My niece gets Eric home and Mark goes back to work. We leave the Mall and get on the highway to our next doctor's appointment. Once we are back on the road, the van is sounding even worse, but I keep driving ... because I'll be damned if I'm going to miss the doctor's appointment I took off work to make. Suddenly, we hear a loud clunk ... I pull off the highway, sure that I've got a flat tire. I check all the tires and they seem fine, so ... I get back in the car, turn on my hazard lights and drive down the highway going 45 miles an hour in a 65 mile an hour zone because I WILL NOT miss this doctor's appointment. The van continues to shake terribly and at this point Kristi is on the phone to her husband and he is telling me I need to stop driving. Noooooo, I will not miss this doctor's appointment I took off work to make! I do have the sense to get off the highway and take the side streets and WE MADE IT to the pulmonologist's office. Phew! We spend all of 10 minutes with the pulmonologist because Jack is doing so well and we really have nothing to discuss. By this time, I call Mark and tell him there is something wrong with the van and he needs to call the tow truck and come get us and bring us home.

Mark heads home to get the other car (the one we can hopefully all fit in) and calls the tow truck. Kristi, Jack and I hang out at the pulmonologist office waiting for Mark. Did I tell you today was the hottest day of the year so far ... 108! Mark finally shows up and I decide I need something to drink. The pulmonologist office is adjacent to a hospital, so Kristi, Jack and I walk over to the hospital ... in 108 degree weather ... to get something to drink. We make our way through the maze of the hospital and find the cafeteria. We're standing in line to pay for our soda and we hear the vent alarm ... POWER LOST is flashing. Shi$, the vent battery is going dead. I brought the back-up battery, but it's in the van. So, imagine ... Kristi and I running through the hospital pushing Jack's wheelchair as fast as we can, hoping we can make it to the van before the battery dies. By the way, did I tell you it's 108 friggin degrees outside!

We made it back to the van just as the tow truck driver showed up. We had to put Jack in Eric's carseat and shove the wheelchair in the back of my car. But, we did it! Eric survived his first school bus ride, Mary survived her first day at basketball camp, we made it to both doctors' appointments, Jack made it home in one piece and the van is in the shop. Me .... I need a beer. What a day.

Here is the day in pictures:

Jack after getting his botox injections ... not a happy boy.

At the pulmonologist's office -- much happier!

A little wind blown after running through the hospital with the vent alarming "power lost"

The van

Jack in a "regular" car seat and not really too sure about it.

Another Blogger?

Given the opportunity, I'm sure Jack would be quite the blogger - he definitely has his mother's fondness for the computer. However, don't count him out just yet. I've been in search of a way for Jack to communicate that is not dependent on this physical strength. Right now, Jack's only means for letting us know (in a way that can be documented) what's going on in that head of his is with switches that are mounted on his wheelchair. On a good day, Jack has the strength to tap the correct switch the correct number of times to activate the computer mouse or the pre-programmed response on the switch. I've always felt that Jack's inability to communicate is due to his physical weakness, not his intelligence. I believe this because Jack's communication skills were much greater prior to his anoxic event -- he could sign, he could say a few words and he could accurately move along his communication board and easily activate it. I don't know whether his anoxic event stole some of his intelligence or just his strength. Jack's neurologist won't give me a straight answer when I ask - she takes the position that she can't say whether Jack present condition is due to his event or his disease. I think she is just trying to save us from additional guilt and pain because, regardless of why ... it is what it is.

Anyway, I digress.......

I think I've finally found a device that will give Jack his one shot at letting us know what's in that head of his. It's a computer that is activated by a person's eyes. This is not the same as the computer system where the user has the dot on his forehead -- that doesn't work for Jack because he can't move his head. The reason this other system might work is because it requires that the individual not move his head and only use his eyes. The system is used widely by adults who have ALS and have lost the ability to move a single muscle in their body, but their mind is still intact. I was given the name of a professor at Arizona State University who might be able to help Jack test the system. Interestingly, after I got the contact information for this professor, Jack was assigned a new speech therapist who I found out trained under this person. The new speech therapist has worked with Jack only once, but she agrees the "light is on" and she thinks it would be worth a shot to try it. She is going to contact the ASU professor and see if we can set something up. I'll give you more specifics about how the system works once we know Jack gets to test it.

I may be setting myself up for disappointment, but if I don't give Jack the chance, how will I ever know? I'd rather be wrong than miss the opportunity if in fact Jack has the intelligence to convey his thoughts via words on a computer. I'll keep you posted.

As you can see, I thought it was time for a new look on the blog. Blogger has all these cool customization features now and I'm sure I'll be playing around with the template all weekend. I did make the text bigger because I don't know about the rest of you, but I have a heck of a time reading my posts because the words are so small. I've got to believe there are a few others of you out there who might appreciate the larger text :-)

For those who wanted to see pictures of Mary's "new" room -- it's still a work in progress. We need to do some more painting this weekend and, now that the room is all new colors -- she needs new furniture to go with it (of course!) After it's all finished, I promise to share pictures. Stay tuned.

Have a great weekend.