Tuesday, February 13, 2007

Home ... just barely!

The wind-up

The throw

Eric, Peggy & Lucy (the dog)


Airline tickets to STL - $500
Visit with the eye doctor - 20 minutes
Flight delay due to snow - 5 hours
Money spent in STL airport waiting for flight - $too much
Eric's first time playing in the snow - PRICELESS

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We were only the second or third Southwest flight to get out of STL and that was at 5pm. Most flights heading East were cancelled all together. We were lucky to get out. I would have been okay staying another day if I had known before I got to the airport that my flight was cancelled! Eric did very well hanging out in the airport most of the day. Note to self: do not schedule doctor's appointments in STL in the month of February!

Hey "ME" .... you can come stay with me anytime!

Warm and Sunny .... Please

On the plane on the way out .... looking a little nervous
Starbucks before we left for the airport.


So far ... no snow, but it's been rainy, cold and miserable. I almost forgot how awful Winter could be. Edit: it's now snowing and our flight is delayed. I just hope we get out of here today!

Eric's eye appointment went extremely well. Eric went from seeing the first row on the eye chart (you know ... the BIG letter on top) with his "bad" eye to seeing the second to last row. He also went from having no depth perception to regaining it completely -- all this just by wearing glasses for 5 months. The doctor told me that everything they want to see happen -- happened. Gee, that's a first for one of my kids!

It's been great spending time with Peg. We've stayed up late - talking lots and polishing off a few bottles of wine in the process. We are heading to the airport soon - I'm anxious to see Jack's sweet little face. I'm so glad you all have enjoyed "Jack's faces" - it means so much that you can "see" what I see in his eyes and face.

Have a great day and those of you who live where you actually get Winter .... stay warm.

Saturday, February 10, 2007

Faces of Jack

At night, before I turn off the lights, I ask Jack to show me his sleepy eyes. The fact that he can do this is of great significance to me. Before Jack's anoxic event, he made the best faces ... we would ask him to show us his happy face, sad face, sleepy face, mad face, etc. and he was great. It took over a year after his anoxic event for him to be able to show me his sleepy eyes again. He is still unable to show us his other "faces" on request. However, the fact that I can ask him to show me his sleepy eyes and he can do it, is an affirmation that he is still "here" following his event. You can see him processing the information and the delay before he can get his body to do what his mind tells it to do. I ask him to show me a second time just to make sure (in my mind) that it was a conscious act and not just happenstance. You can also hear how excited I get over such a simple gesture. I just wonder what Jack could tell us if we could translate what's in those eyes to words.



Here is Jack this morning when I mentioned putting his DAFOs on. Obviously, he did not like the idea! There's a bit of acting going on as he tries to keep himself from smiling while giving me the pout. (btw, he will get his DAFOs on sometime today - much to his dismay.)



(DAFO = Dynamic Ankle-Foot Orthosis - braces for Jack's feet/ankles)

Got a call from the ophthalmologist's office Friday afternoon telling me that the doctor unexpectedly had to go out of town and he wouldn't be there on Monday. I told them I still plan on coming, so could they get us with someone else, which they did. Mark and I both think Eric will probably need surgery because his eye still wanders, so it's a bit disappointing that our doctor can't see Eric. Oh well ... trying not to sweat the small stuff. If nothing else, it's a much needed break away from the stresses of work and Jack.

Have a great weekend.

Tuesday, February 06, 2007

80 and Sunny --> 30 and Snow

"Winter" is officially over here in the Valley of the Sun. Today was a gorgeous 80 degrees and sunny. Eric and I leave this weekend for St. Louis for a follow-up appointment with the ophthalmologist on Monday. The forecast is for SNOW on Monday and Tuesday. Yikes! It probably seems crazy to go all the way to STL for a follow-up eye appointment but, I am 100% comfortable with the ophthalmologist in STL and I'm less than 100% comfortable with the ophthalmologist here. Plus, it's a chance to get a couple nights sleep without having to listen to the blasted baby monitor and, best of all ... a chance to visit with my dear friend, Peggy.

Jack's definitely got some intestinal virus going on. Let's just say diaper changes send everyone running while exclaiming "I'm outta here" (Eric) or "Oh my God" (Mary). We now have candles burning in Jack's room to freshen up the place. He's also full of snot and his heart rate has been above 100 for a week (unusual for him). Naturally, he gets sick before I'm scheduled to leave town. I just don't want another phone call from Mark like I got last June when Jack was sick and I was in STL for the trach conference. I answer my cell phone to be asked this question: "When do you know if it's time to take Jack to the emergency room?" My answer ... "not unless he is a full code!" (and I'm completely serious ... I don't do ERs with Jack.) Hopefully, Jack will just behave himself the 2 1/2 days I'm gone.

Saturday, February 03, 2007

Doctors

At the ripe old age of eleven, I had my life planned out. I wrote these plans on a piece of paper that I still have in my possession today: “When I grow up, I want to be a doctor. I hope to also get married, have ten kids and live a happy and long life”. For as long as I can remember, I wanted to be a doctor. I couldn’t wait until I was old enough to put on the red and white striped dress of a junior volunteer. My job was primarily filling patients’ water pitchers and running specimens to the lab. Not very exciting stuff, but I was thrilled simply to get an up close and personal glimpse into the life of a doctor. I eventually traded the striped dress in for a blue jacket worn by the senior volunteers. I asked to be assigned to the emergency room - where I spent most of my weekends throughout my college years. It was an eye-opening and amazing experience. I completed my undergraduate degree in Biology, took the MCATs and applied to medical school. It is here where I encountered my first detour on the road of life that I had so perfectly planned. I was not accepted into medical school.

Over the last eight years, I’ve had the opportunity to spend a great deal of time in the presence of doctors. Unfortunately, I find myself on the wrong side of the white coat, and that is a very difficult place for me to be. After Jack was born, I was thrown into the world of intensivists, pulmonologists, neurologists, surgeons, fellows and residents. Jack spent close to five months in the PICU and during that time I encountered a legion of doctors, as the attendings and residents rotated through. I saw doctors do a lot of great things. I saw kids get new hearts and lungs and kids who were much sicker than Jack get off machines and leave that PICU. Yet, these same doctors couldn’t help me. They couldn’t “fix” my kid no matter how hard I pressed them and pleaded with them. I fought traching Jack for months because I needed answers. I needed to know “why?” The answers never came. I was worn down and eventually had to concede. From my perspective, the profession that I had so admired and aspired to belong to, had completely failed me. Jack left the PICU with a tube in his neck, a tube in his stomach and connected to a machine to support his breathing. He also left with a very terrified, confused and angry mom. I was so disappointed with doctors that I wanted nothing more to do with them … an impossibility when you have a medically fragile child.

I’ve encountered the good, the bad and the indifferent when it comes to doctors. But, by and large, I’ve had the privilege of dealing with an exceptional team of doctors who have provided the best of care to Jack. I’ve also had the opportunity to get to know several of Jack’s doctors on a more informal level. These doctors have been an incredible source of support to me by taking the time to talk me through things, by allowing me to see things from their perspective and by simply listening to me vent. One of my biggest fears the day Jack and I left the PICU was that of being abandoned by the people who – from my perspective – put me in this position in the first place. I’ve been very fortunate. I’ve not been abandoned, I’ve been embraced by several very special doctors who have done, and who continue to do, everything they can to ensure that Jack and I have the best quality of life under the circumstances.

Over the years, I’ve managed to temper my anger and disappointment towards doctors. I now have realistic expectations as to what doctors can do for Jack and what their limitations are. I’ve given up the dream of finding a doctor who can “fix” Jack. However, I still struggle with the fact that I’m on this side of the white coat and every time I sit in a room with one of Jack’s doctors, I am reminded of what I failed to accomplish. Perhaps my disappointment is not so much with the medical profession as it is with myself.

I close with the following quote from a book of companion notes for parents of children with disabilities. I believe this sums it up perfectly:

Doctors are human beings who have some information or knowledge that will help our children. Some are very skilled, and many are average. They have strengths and weaknesses. They make mistakes in their work. If we don’t put them on pedestals, we won’t have to knock them off.

Changed by a Child

Tuesday, January 30, 2007

Always listen to your "gut"

Took Mary to the ENT today -- her nose is fine. Took Jack to the ENT today because he has been draining puss from his ears since Thanksgiving and has been on three courses of antibiotics to no avail. Miraculously, his ears cleared right up a few days before our appointment. I knew I was wasting my time taking both Mary and Jack to the ENT today, but did I listen to my "gut"? Nope! So, I have no one but myself to blame for spending 2 hours sitting in the ENT's office and 2 hours spent in bumper-to-bumper traffic. Nothing irritates me more than wasting time and today was a collosal waste of time. As you can imagine, I'm quite irritated right now!

Hope your day was more productive than mine.

yea, I know ... I'm supposed to be enjoying the view. I'm trying ...

Sunday, January 28, 2007

Family Photo

Here is the family photo that was so important for Jack to be out of his brace and in his wheelchair for. Each individual family picked a color, so you should be able to tell who belongs to who.

On the Jack front ... he's not been feeling so good this weekend. His sats are okay, just a high heart rate and looking pretty miserable. Mary is battling the flu (again), so it's possible that is what Jack has. I had to go into the office for a few hours this morning and when I got home the ambu-bag was sitting on Jack's bed. It's been a long time since we've had to use an ambu-bag -- not sure why it was out since his sats are fine (Kristi was gone by the time I got home, so I didn't get a full update). I just hope that whatever is going on, it doesn't settle in his chest. I'm not ready to head down that road (as if I'm ever ready!)

Thursday, January 25, 2007

Busy Week

Sometimes I forget I have a couple of other kids who also need my time and attention on occasion. This week was a nice reminder.

I got a call yesterday morning from the nurse at Mary's school telling me that Mary was hit in the face with a basketball at close range. She tells me Mary's nose is very swollen and deviated to the left. I cancel my appointments for the day, call my sister - who says she'll go pick up Mary because she is closer to school - and I race out of the office to meet them at my sister's house. Based on the school nurse's description, I walk in expecting to find Mary an absolute mess and with her nose on the side of her face. Uh, not even close. In fact, I can't even see any swelling (although Mary insists it's swollen) and I'm not seeing any deviation. So as not to be nominated for the "Heartless Mother of the Year" award, I decide I'll at least take her to Urgent Care. We get there and I'm told that they don't do x-rays of the face. What, their machines don't work on faces? I look at Mary and ponder the question .... go to the ER or go to lunch? We chose lunch! Mary and I had a nice lunch together, I dropped her off at home and then headed back to office. Mark thinks Mary's nose has "shifted". I'm still not seeing it. But, I went ahead and made her an appointment with the ENT next week. Jack already has an appointment, so she'll be coming along. The picture of Mary is taken at lunch yesterday (with my phone - no, I don't carry a camera with me everywhere I go :-) I think her nose looks fine, what about you?

Today I took Hilary to the audiologist because she hasn't had her cochlear implant checked in years. Poor Hilary, her needs completely took a back seat after Jack was born. When we lived in St. Louis it wasn't as big a problem because her school handled all her hearing issues. Since we moved home, she's been totally neglected. We've noticed that her speech has really become unintelligible, so it was time to get her in for an evaluation. The audiologist changed some of her settings (the technical term is "mapping" her implant) and tested her receptive language by covering her (the audiologist's) mouth and saying sentences that Hilary was asked to repeat. Hilary started crying because she was upset that she couldn't understand some of the sentences. Sometimes I think Hilary forgets she is deaf because she manages so well with her implant. Nothing like watching your overly emotional teenager have a meltdown in the audiologist's office. After we left the office, Hilary told me she hoped being emotional wasn't hereditary because she didn't want a kid who acted like that. All I could do was laugh and let her know that ALL teenage girls are emotional!

I emailed the St. Louis ortho with a few questions now that we are at the six month mark. I will only say that his response was true to form and he remains the most unlikeable physician I have ever dealt with since Jack was born. I am just glad to be done with him.

So that's my week in a nutshell. Not too exciting, but far from boring!

Sunday, January 21, 2007

Life is boring, life is good




Not much going on at the Schrooten house, but I wanted to bump my whiney post about being tired, so I thought I'd share a few pictures and a video clip with you. The video is of Jack watching "Jack's Song". He really enjoys watching it. Notice the big smile on Jack's face when he hears Eric's name. Also notice Eric in the background walking out of the room after he hears his name - that's all he is interested in!

I took the video with my camera turned and I can't figure out how to turn the video upright. If anyone knows how to fix it, please let me know. (sorry, it's a bit annoying to have to watch it sideways ... but, if you have a laptop, you can always turn your computer on its side :-) Btw, Jack's shirt says "Move, you are blocking my greatness"

Mary had another Irish Dance competiton today and she did well. Eric insisted I take his picture since I was taking Mary's. I'm not sure where he thinks he is hitching a ride to.



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To answer Kristy's question .... I get Jack's shirts at Abercrombie (Kids) - they have great t-shirts, but I don't think they make toddler size clothes. He has another shirt from there that says "Entertain Me, I'm Bored".

Thursday, January 18, 2007

Tired

I’m tired. I’m so tired it hurts. I’m so tired the phrase “I’m too young to feel this damn old” comes to mind. I can’t remember the last time I didn’t feel tired. It’s not that I don’t get to bed early enough to get a decent night sleep; I’m just not able to sleep through the night. Rarely does a night go by that I’m not up once or twice dealing with a Jack issue. It’s also impossible to achieve any level of deep sleep when you are listening to the rhythmic swooshing of the ventilator through the baby monitor planted next to your ear. I’m so in tune to Jack’s vent that I can tell if there is water in the circuits, if the air leak around his trach tube is too big or if he needs suctioning just based on the subtle changes to the sound of the vent. Shutting off the baby monitor is not an option since we don’t have night nursing and Jack has to be monitored 24/7. To use my friend Tess’ favorite phrase … “it just sucks!” The scary thing is that I now find myself struggling to keep my eyes open when I’m driving to and from work. Not good! I just don't know how to get un-tired.

On a positive note, at least I’m not a rat. An article written by the Neuroscience Institute found that while sleep deprivation in humans leads to cognitive impairments, if sustained for 2-3 weeks in rats, it is invariably fatal!

(Interjecting a little humor here ... that was supposed to make you laugh).

Jack is 10 days away from being 6 months post-op. I plan on contacting his St. Louis ortho to ask him what Jack is allowed to do now that we are at the magic 6 month mark. Hopefully, he won’t give me a list of restrictions that we’ve already violated. :-) Jack continues to do well. He is happy, he is healthy and he is lovin’ life (and HE is getting plenty of sleep!)

Monday, January 15, 2007

Jack's Song

In early December, Jack's OT had us fill out paperwork to send to an organization that writes songs for chronically and terminally ill children. They write a song just for your child based on information you give them. We received "Jack's Song" last week and I thought it would be fun to share it with you. But you know me, any opportunity I can get to share pictures of Jack ... I'll take it. So, I put together a video of pictures to accompany Jack's Song. If you can stand to watch another video of Jack, click on this link to "Jack's Song" and enjoy!


(p.s. the singer pronounces our name incorrectly, the "oo" in Schrooten is pronounced as a long "o")

Wednesday, January 10, 2007

The Willow Tree Foundation

Since life is relatively boring right now, I thought I’d share a little bit about The Willow Tree Foundation. Many of you who read this know about the foundation and some of you who read this have generously contributed to it. For many years I’ve been an active participant on a message board for parents of children with trachs - Aaron's Tracheostomy Page. Over the years, I’ve come to know and care deeply for the parents of kids like Jack – parents of children who are classified as “medically fragile”. The stories shared and the hardships faced by these parents really tugged at my heart and I felt like I needed to do something. I wanted to let these parents know that I recognize and understand what they are going through. I understand the enormous physical, emotional and financial stresses they face in caring for their children and I understand that some days it’s all they can do to get up and put one foot in front of the other. I wanted to show them that their efforts don’t go unnoticed and that they too are deserving of some time and attention. Certainly, as parents we will do whatever we have to for our children and we don’t expect to be “rewarded” for doing our jobs. However, parents caring for children with complex medical needs are so consumed and overwhelmed with their child’s care that there is little “me” time allowed. We all need “me” time to unwind and re-energize, yet parents of medically fragile children – those who perhaps need this time the most - are the least likely to take any time for themselves.

Personal experience told me that parents of medically fragile children need respite time. The research I conducted in connection with establishing the foundation supported this. Of all the facts my research revealed, one of the most profound facts I discovered (and can attest to) is that the recurring stresses associated with caring for a medically fragile child do not become less disruptive over time. In other words, we don’t get used to this. We learn to cope, but it doesn’t get easier with time. The research further indicated that “the relentless pressure may lead to decompensation”.

Knowing that the need was there and having found the research to support my mission, The Willow Tree Foundation came to be. Forming the corporation was relatively easy - getting tax-exempt status from the IRS was a bit more difficult. In August 2005, almost a year after the corporation was formed, I finally received tax-exempt status. The letter giving me tax-exempt status was my ticket to start soliciting money. We were able to raise enough money last year to award our first “wishes” to several parents here in the Phoenix area. I have received a very positive response from the trach-airway nurse at Phoenix Children’s Hospital – she has been our primary referral source to date. It is our hope to continue to raise money so that we can continue to fund respite opportunities. A significant amount of our seed money was raised through a matching program by my sister and her employer – American Express and for that, I am very grateful.

I have received interest from parents around the country who have offered their assistance in the event we expand the boundaries of the foundation and grant “wishes” to parents in other states. At this time, I am thinking about ways to accomplish this so that people who want to donate to the foundation but want the money to benefit the parents in their city or state can do so. Anyone who has an interest in being a representative for your state, please contact me and we’ll talk about how we can make it work. Email me at: willowtreefoundation@cox.net

I’m excited about what we have been able to accomplish this last year. My hope is that someday “The Willow Tree Foundation” will be a name familiar to medical professionals and parents caring for medically fragile children throughout the country and that our mission “to provide parents of medically fragile children with respite opportunities through activities that allow parents to take ‘time-out’ from the unrelenting demands associated with their child's care so that they can maintain their stamina and sense of perspective and continue to meet the intense medical needs of their child” will be carried out on a national basis.

It can’t hurt to dream, right?

If you haven’t already done so, you can read about the foundation at The Willow Tree Foundation (also found under the "Links" section)

Sunday, January 07, 2007

New Year, New Look

Depending on your computer, with the new template - you might not be able to see the "Links/Previous Posts/Archives" -- if you scroll down you can see them. I noticed that I could see them on the screen on my home computer, but at work, I couldn't see them (they are at the bottom of the page). Just an fyi :-)

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I thought I'd change the template for Jack's Blog. I like the new look, hope you do too. I'm not sure if I should even keep "blogging" - as long as Jack continues to behave himself, it could get quite boring here and I'm certainly not looking for any excitement to report!

The kids start back to school tomorrow. I'm looking forward to getting them out of the house, but I'm not looking forward to the hour that is added to my morning commute when they are in school. We've been without a nurse for the last four days ... call us wimps, but Jack's care is non-stop and exhausting and we are so looking forward to Kristi's (Jack's nurse) return tomorrow.

Have a great week.

Thursday, January 04, 2007

Reflections and Resolutions

Alas, the Schrooten B & B is officially closed. Well … technically, my house is a “B & Make Your Own B”. I provide the bed, you provide your own breakfast (lunch and dinner). Much thanks goes out to my sister and brother-in-law from NJ - they kept everyone well fed - which was no small feat considering that I not only lack cooking skills, I also lack cooking “equipment”. Oh well … they know cooking equipment, I know medical equipment. We all have our area of expertise.

As we leave 2006 behind us and start a new year, I realize after much reflection (and after d-r-a-g-g-i-n-g my butt up that mountain earlier this week) that it’s time to get back into shape – physically, emotionally and spiritually. Without a doubt, last year took a toll on me - it was one of the toughest years for me since Jack was born. It was a particularly difficult year for Jack – as he spent the first half of the year fighting one respiratory infection after the other, and you all know how he spent the second half of the year. As for me, all I managed to do last year was simply get through it, without any clear direction, purpose or plan. “Lost” best describes how I felt for the majority of 2006. In case you haven’t figured it out yet, I’m a planner. In fact, I practically had my whole life planned out the day I was born . . . just ask my mom. The downside of being a planner is that you tend to be inflexible and resistant to change and when the inevitable change occurs, it hits hard. In addition to the trauma of Jack’s surgery, there were a few other things in particular that made 2006 a “lost” year …

One of the most difficult changes was the dismantling of the team of doctors who have cared for Jack over the last 7+ years. The reason for making the 3000 mile trek between Phoenix and St. Louis is not because we enjoy the scenic drive so much, it’s because of the incredible team approach we’ve always experienced at St. Louis Children’s Hospital. The doctors at SLCH aren’t only about their “part” of Jack, they truly work together as a team – they coordinate care, they share information and they actually talk to each other about Jack. For the most part, Jack had a remarkable team of doctors caring for him in St. Louis. Sadly, our team is no more. The first to leave us was the “captain” of our team - Jack’s pulmonologist. Jack had the “best of the best” in Dr. Pam – an expert on kids and vents, a true advocate for her patients, a force to be reckoned with and someone who could make things happen. I’m still trying to figure out how we will manage without Dr. Pam (she’s in Florida … quite a ways to drive - not that I haven’t considered it!) We also saw the departure of Jack’s ENT, as well as our favorite Intensivist. I have become very attached to (and dependent on) a few of Jack’s doctors, including two of those who left last year. It’s been extremely difficult on a personal level knowing that they are no longer available to care for Jack. We’ve not only lost our team of docs, I’ve lost my security blanket. I always knew in the back of my mind that if I didn’t get the care I expect for Jack here, I could always load him in the car and drive East. I now find myself in the uncomfortable position of having to look to the doctors here to manage Jack’s care - something that hasn’t worked the last 4 years and isn’t likely to change in the future. I’ve already had a talk with Jack and told him that he is done with doctors and he just has to stay healthy. We’ll see if he listened!

The other difficult challenge of 2006 was trying to figure out what I’m supposed to be doing for Jack. The first few years of Jack’s life we had countless goals to work towards and the hope that he would achieve them. We kept busy trying to get past “this” so that we could move on with life as we wanted it to be. Getting off the vent, walking, talking, eating … all of the things that consumed our earlier years are but a distant dream. Then there was that whole anoxic event thing and working towards the recovery from that. Today … what is there to work towards? Jack doesn’t attend school and the services he receives at home are primarily entertainment. It’s not as if he will ever hand in homework, take a test, or graduate. The planner in me struggled to find some direction, goals, and purpose.

So, I begin the New Year still somewhat lost, but with the resolve to let go of the need to always have a plan … to allow myself to simply enjoy the journey and not worry about the destination. I resolve to live life, not merely exist. I resolve to look at the view. I needn’t look too far to find my role model. He is that wise soul who “gets it”, who lives in the moment and who is happy ... I need only look to Jack.

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I close this post by sharing a portion of a video that we put together for the Tracheostomy.com Pediatric Conference held last summer in St. Louis. We can all learn a thing or two from these very special children - each one of whom started out life facing greater challenges than most of us will face in a lifetime.*



*If your child is in this video and you object to me sharing it on this forum, please notify me and I will remove the video. Thanks.

Monday, January 01, 2007

HAPPY NEW YEAR!

from the "Main Man"

A Day of Hiking

Waiting for the last straggler (who happens to be my brother and the guy with the camera)
The four of us "old folks" at the top
My niece Kelsey
My niece Amanda
My nephew Michael

Yesterday a group of us went hiking on a very popular valley trail - Squaw Peak (located right in the middle of Phoenix). It's a tough 1 mile hike to the top of the "mountain" - something I could do with relative ease a few years ago. It about killed me this time around! Today is our last day together, as everyone heads home tomorrow. It's been fun ... well, except for the flu part -- the flu count is now up to 10! (so far, Jack has avoided it).

Have a wonderful day.

Saturday, December 30, 2006

A Christmas to Remember

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

Happy New Year to you all!

Wednesday, December 27, 2006

What a Group!

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

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

Monday, December 25, 2006

Just some pics

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

Eric after a long day.

Sunday, December 24, 2006

Twas the Night Before Christmas


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

Love,
The Schrootens

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

Saturday, December 23, 2006

Hustle and Bustle

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

Wishing you all a peaceful Christmas with family and friends.

Tuesday, December 19, 2006

Christmas Past









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

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

Sunday, December 17, 2006

Weekend Fun

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

Have a great week!



Friday, December 15, 2006

The Lists

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

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

Enjoy your weekend ... I know I will!

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

Wednesday, December 13, 2006

Look at the View

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

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Anna Quindlen's Commencement Speech at Villanova

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

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

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

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

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

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

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

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

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

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

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

Sunday, December 10, 2006

Loving it!

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!

Friday, December 08, 2006

Moving Forward Cautiously

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

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

Wednesday, December 06, 2006

Oh Happy Day!!








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

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

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

Sunday, December 03, 2006

Busy Weekend!



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

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

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

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

Friday, December 01, 2006

Score!

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.