Just A Short Update

A lot of this post will be a repeat for people who are on FB.  Just a short Jack update, just because some of you have asked.

Jack's dental procedure

Jack recovered from his dental procedure just fine. The dentist said that he doesn't need to go under for cleaning/dental work every six months (I can't even imagine), but he probably will every 12-18 months.  Jack's teeth aren't too bad because he doesn't eat anything by mouth.  He does have an impacted tooth that will eventually have to be dealt with by an oral surgeon.  When I was looking for a dentist to take over Jack's care, I decided to go with the dentist who is with the pediatric cranio-facial team at one of the hospitals in town.  I figured he likely has the most experience dealing with complicated jaws/mouths. The team also includes an oral surgeon - who we will need to see sometime in the future.

When the anesthesiologist came to talk with me before surgery he told me that he hadn't heard of Jack's form of muscular dystrophy (which was listed on a detailed medical history that I typed up and had put with Jack's chart) and, therefore, he did what any good doctor would do, he "Googled" it!  He said he got a lot of hits with my name :)  Then he asked ... "so, you are a lawyer?"  Seriously, I hate when I'm asked that question! I always want to plead the Fifth, but that would probably be a give away, eh? He asked me if Jack was a difficult stick and I said "yes" and told him he might want to just start with the feet because he was not going to have any luck with the arms/hands.  So, naturally, he had to try the arms/hands before he ultimately got an IV in his foot.  Jack was stuck no less than 8 times based on the number of bruises I counted.  Sucks.

I had some concerns about the anesthesia and whether the anesthesiologist was aware of the contradictions of certain anesthesia and muscular dystrophies.  I don't think he got that Jack's type of congenital muscular dystrophy - while rare and not widely published - carries the same anesthesia risks as the more prevalent and studied forms of MD.  Because the surgery was short and didn't require a deep level of anesthesia, I didn't push the issue.  But, in talking about this with Anne R (of Cure CMD), she indicated that this highlights the need to get information out regarding the anesthesia risks for our CMD kids.

Jack's face


After ten days on Cipro, Jack's face isn't looking all that much better.  His face is still so red and bumpy.   We have a follow-up appointment with the dermatologist next week and I'm hoping she can come up with a magic potion because, as far as I'm concerned, Jack is too young to be dealing with acne (or whatever it is) issues.

We went to an Easter party at Ryan House last weekend.  Eric enjoyed hooking up with a friend he met at the Sibshops put on by Ryan House. We learned that both our families live in the same area of town, so we are hoping to get the boys together more regularly.  They seem to be a perfect match for each other.  Jack enjoyed seeing "Grandma Bev" again. She is so good with Jack.  She was happy to "take" Jack from me and go hang out with him in the Sanctuary room where they read books together.

Jack and Grandma Bev

you can obviously see how red Jack's face is :(

Hanging out with some weird looking bunny :)

Finally, here is a link to a post on the Tracheostomy.com website where I posted an article that discusses quality of life for children with chronic health problems.  I can't add an attachment to the Blog, but if you go to the link, you can download the article from the post.  I think it's an interesting article and one that was well worth reading.

Enjoy the rest of your week y'all!

Wish Us Luck

Update:  For those who didn't get the update on Facebook - we are home and Jack did well.  Dealing with lots of blood in the mouth right now, but he's acting fine.  Thanks for checking in and have a great weekend everyone!

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Today, Jack is having a procedure done under anesthesia.  He is having dental work done - x-ray, cleaning, sealing and a tooth pulled.  He's reached the point of having to do this under anesthesia because of his jaw contractures. To say I'm nervous is an understatement.  I'm not worried about the work being done, I'm worried about the going under anesthesia part.  Unlike when Jack has a procedure done under anesthesia in St. Louis, there has been no anesthesia pre-op consultation - not even by phone.  No contact at all.  My kid has a neuromuscular disease (which affects the type of anesthesia that can be used) and is on a vent and you don't want to know any information about him prior to the ten minutes before surgery when you come and give me "the talk" about everything that could go wrong?  As if I don't already know everything that could go wrong, but, of course, you don't know what I already know because you haven't done a pre-op consult!

Okay, so I have a bad attitude when dealing with the medical professionals/facilities in this City. But, how can I not given what I've experienced at SLCH? This will be Jack's first experience with this hospital (and with this dentist.)  It's the hospital my girls were born at, the hospital my mom worked at for 35 years and the hospital I volunteered at during my college/pre-med days.  I think it's a good hospital, it's just no SLCH.  We don't know them and they don't know Jack.

Wish us luck today.

Thanks!

(I'm sure everything will be fine, but I'll update when we get home.)


________________________

Thanks for all your supportive comments on my last post.  Love ya' lots!

For the Record

For the record  . . .

I cry.

Not every day.  Some weeks more than others. 

Usually in the morning on my drive to work when I have peace and quiet and time to think.

Sometimes at night after I tuck Jack in for the night. 

I cry when I look into Jack’s eyes and he looks so intently and deeply into mine and it’s clear that he has so much he wants to tell me, but can’t. Imagine having a headache, an itch, a desire to adjust your weight or reposition your arm or leg, play with a toy, read a book, choose the movie you want to watch or the music you want to hear, or being thirsty or hungry or wanting to give your mom a hug and you can’t tell anyone where it hurts, what you want or how you feel and you can’t do anything by yourself. 

I cry when I think about how absolutely wrong it is that Jack was given a mind that is completely “tuned in” but a body that holds his thoughts, feelings and desires hostage.

I cry when I look at old pictures of Jack and see the progression of his disease a little more each year.

I cry when I look into Jack’s eyes and he looks distant and tired, as if he’s saying “enough”.

I cry when my phone rings at 5am and it’s my nurse calling out and I have to cancel a full schedule of clients because I can’t go into the office.  I cry out of frustration because I am a prisoner to the nursing I so desperately need in order to keep my job.

I cry when I ask how much longer does Jack have to continue to live this hell on earth and yet I cry when I think about how much time I have left with him. 

Crying is very cathartic.  It releases the sadness, the loss, the anger, and the hopelessness I feel.  Crying allows me to put it all out there on the table and then pick myself back up and keep on keeping on. 

For the record . . .

I smile, laugh and find happiness in this life too.   

Stuff

Update:

Antibiotics on board.  Hoping to see Jack's sweet (blemish-free) face soon! All our docs came through for Jack today.  Yea!

Thanks Angie - I always enjoy when you are working and we get to do Jack's doctor's appointments together! :)

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Lots of stuff going on with Jack.  None of it serious, but bothersome nonetheless.  A couple of months ago Jack's face started breaking out with all these little bumps.  It didn't look like acne to me and when I asked his pediatrician about it, he didn't really have much to offer in terms of what it was or what could help.  Fast forward a month or so and I decided to take Jack to my dermatologist to see what she had to say.  She thought it was acne (Jack is 12 1/2, so acne isn't out of the question).  She also swabbed his face for a culture to make sure it wasn't a staph infection.  Last week she called to tell me that the culture grew out Serratia - which is not typically found on the skin.  She changed the creme we were putting on Jack's face to a gentamiacin creme.  Jack has also been having issues with styes that started about the same time as the "acne".  After hearing that the culture came back positive for Serratia, I called his pediatrician because I was worried about Jack's eyes - wondering if the styes were related to the Serratia.  My thinking is that we need to treat this thing aggressively if it is in fact Serratia.  Jack's pediatrician basically took the position that it is very usual to find Serratia on the skin and therefore, it mustn't be correct.  He questioned who my dermatologist was and said he'd want a second opinion.  Apparently, just because he doesn't know her, she must not be any good?!  As if I'm not competent to know who is or isn't a good doctor. Pisses me off.

Long story short, Jack's face looks TERRIBLE since we switched to the gentamiacin creme.  And, I mean terrible! It's broken out all over, red and inflamed.  I have no idea what is going on.  So, tomorrow, I will be calling both the dermatologist and the pediatrician and hope to get in to see both and someone better do something!

Jack is scheduled to be put under general anesthesia for dental work in two weeks, but if his face isn't cleared up, I will probably reschedule because I don't want to risk having whatever is invading his face to invade his mouth, especially if they pull teeth and create a means for the infection to get into his mouth.

Add to all that, Jack is draining puss out of one of his ear.  I'm really wondering if it's all related and he's got an infection that is manifesting itself in multiple places.

As I said, not serious stuff . . .  yet.  However, if I can't find a doctor willing to help, it could turn into something serious.  It's times like this that I wish we still lived in St. Louis.  I am so much more comfortable with the care Jack receives there.  *sigh*

Speaking of St. Louis doctors ... I was looking through a bunch of Jack's medical records as I was looking for his MRI report to send to Dr. B at the NIH and I came across a bunch of "Referring Physician Letters" that had been sent from Jack's St. Louis pulmonologist to his St. Louis pediatrician.  This was back when I was in complete denial that Jack had a neuromuscular disease and I was determined that he would get off the vent.  I found this in one of the reports from October of 2000:

.... I became involved in his care last month, at which time he was having difficulties with end tidal CO2s that were in the 60-80 range.  At my recommendation, we had gone to a cuffed trach.  The mother has also determined that this is causing him problems, and has changed the cuffed trach to a Shiley 5.0 uncuffed trach. She has also weaned his ventilator settings and has him off the ventilator completely for two hours at a time. ...  I have suggested that he be off the ventilator for not more than one hour on his trach collar.  I would prefer that we not attempt trach collar trials at this time, but this is something that is not acceptable to his mother.  


This totally cracked me up. You'd have to know this doctor.  She is very much a take charge kind of person.  In fact, I was told by several people when I decided to switch to her to follow Jack on his vent, that she and I would not get along because we were both very strong willed.  Funny thing is, we got along very well.  She clearly respected my opinion and my wishes - although never at Jack's expense.  I read this report and realize how forthright I was!  Thankfully, she put up with me. The day she told me she was leaving St. Louis Children's Hospital was a very sad day.  She practices in Florida now -- a bit too far of a drive for Jack to still see her!

Not a very exciting or interesting update, but sometimes life is neither exciting nor interesting!  I'm so looking forward to starting off my week dealing with doctors (not!)

Wishing you all a pleasant Monday!

San Diego

Although it's not on my Bucket List, it's definitely at the top of Eric's:

We spent the weekend in San Diego and one of our stops was LegoLand.  Eric thought he'd died and gone to heaven!  Eric thoroughly enjoyed the day, but Jack wasn't quite as thrilled. There wasn't a single wheelchair accessible ride, so there was little Jack could do.  Jack toughed it out though and tolerated the eight hours in his wheelchair and in the sun very well. Thankfully, the park closed at 5pm!

The other reason we went to San Diego was to attend a Cure CMD Information Day.   I was mostly interested in having Jack see one of the doctors who was presenting at the event.  He is one of the top neuromuscular doctors/researchers in the country - if not the world.  He specializes in congenital muscular dystrophies and has worked at Children's Hospital of Boston and Children's Hospital of Philadelphia and is now at the NIH.  Anne Rutkowski, the founder of Cure CMD asked me if I would be interested in having Jack participate in a study being conducted by Dr. B at the NIH to try and determine the subtype of Jack's CMD.   Although I'm not that interested in knowing the exact genetic subtype of Jack's CMD, I know it's important to Cure CMD's mission and because I like and respect Anne, I want to do what I can to help.  Because it's not an option to take Jack to the NIH, when I saw that Dr. B was going to be at the conference, it gave us an excuse to go to San Diego for the weekend.  After a day of seeing patients in clinic, Dr. B and Anne came by the hotel and sat down with us to talk about Jack's history and to see Jack.  We hung out in the hotel lobby and had a drink together.  Dr. B made it clear that he doesn't usually conduct a consultation while drinking a beer! :)  At this point, I need to get Jack's brain MRI taken back in 1999 sent to the NIH and see if I can get Jack tested for a specific genetic subtype that he hasn't been tested for next time we are in St. Louis.  The conference itself was very interesting and informative. It was geared more towards medical professionals, but I could keep up for the most part.

It was a busy few days, but lots of fun.  Traveling is so hard on Jack because of the time he has to spend in his chair and on his back-up vent (without humidity). He was definitely exhausted at the end of each day, but he is such a trooper. I wish he could enjoy the things that we do, but to be honest, he is happiest at home in his own room and his own bed.  It makes me sad, but it is what it is.

Anne, Jack and me at dinner together

Back to the grind tomorrow.  Spring Break is officially over and the kids are back to school tomorrow too. (Eric is not happy!)

My Bucket List

As I near the half century mark, I've been thinking about my Bucket List.  When I first sat down to write my Bucket List, it was pretty pathetic.  I couldn't really think of anything I want to do before I depart this earth ... except sleep for an entire month - waking up only to eat chocolate and drink beer.  :-)

Realizing that I'll have plenty of time to sleep after I'm dead (unless I'm spending my days fanning away the fires of hell), I decided that I really need to think about things I want to do in my life because I don't have a whole lot of time left (best case scenario) and I need to have something to look forward to besides spending my days drafting contracts and suctioning snot.

So, after much some thought, this is what I've come up with so far:

1. Travel to Ireland (can check this off my list after this summer)
2. Rent a beach house on Coronado Island and spend an entire month there ALL.BY.MYSELF
3. Write a book composed from the hundreds of emails between myself and Jack's doctors
4. Write a book about my personal journey as the parent of a medically fragile/special needs child with an incurable disease
5. Hike to the bottom of the Grand Canyon (and back out, of course) ***
6. Take a Caribbean Cruise that includes a stop in Puerto Rico (to visit a very special doctor who cared for Jack)
7.  Travel the Pacific Coast Highway from Los Angeles to San Francisco in a convertible, staying in really nice hotels along the way
8.  Visit New England in the Fall and stay at a B&B
9.  Travel to the UK to meet my sorority sister and one of the most supportive cyber-friends I know - Julie W.
10.  A photo shoot with me and my kids by the photographer who took Mary's senior pictures

That's all I've got for now.  But, I'm working on expanding my List to include not only things that will take planning, time and money, but also some "little things" that I want to experience and/or accomplish.

So tell me .... what is on YOUR Bucket List?

__________________

*** Btw, I am looking for company on my hike of the Grand Canyon.  You have to book lodging at the bottom of the canyon at least a year in advance, so if you are interested in hiking it with me - next year, two years from now, or whenever -- let me know!

Happy Birthday Mary!

Writing about Mary is much harder than writing about my other kids because she is my only kid who actually reads my blog.  Knowing that Mary will read this puts much more pressure on me to make sure I say all the right things and, more importantly, that I don’t say the wrong things.  Because trust me, I will hear from her on this!

Where to begin? 

I guess the beginning is a good place to start . . .

Mary has been an easy kid from the get go.  I was in labor for maybe four hours (induced and epidural in place) and I think I got her out in about 2 pushes.  I quite literally could have walked out of the hospital hours after giving birth to her because she was such an easy delivery.

In line with her easy entrance into this world, Mary has always had an easy going and HAPPY personality.

The thing I remember most about Mary when she was little is that she talked ... a lot!  Keep in mind that her sister didn't talk at all, so what was typical for most kids seemed liked a big deal to us because we only had Hilary to compare her to.  Mary was constantly chattering and constantly in motion.  My Aunt used to call Mary "Tigger" because she bounced everywhere she went.  My Aunt had been watching Hilary for me and she agreed to watch Mary too. However, that didn't last long because it became apparent early on that Mary is a very social kid and she needed to be around other kids.  We put her in a church daycare/preschool when she was two and she loved it. To this day, Mary is my social kid - she enjoys (and needs) the companionship of many friends. 

Mary will tell you that one of the worst events of her life was her parents decision to move from St. Louis back to Phoenix.  We lived in a great neighborhood in St. Louis where all the kids were about the same age and they played together all the time.  I will admit that St. Louis was a much friendlier place to raise kids than Phoenix is. It was so hard for Mary to leave behind her friends when we moved, especially her best friend Rebecca.  

Mary has always been comfortable with Jack and all his equipment and she jumped right in to fill her role as the big sister.

Mary has a heart of gold and doesn't have a mean bone in her body.  She once told me that she doesn't know how to respond to her cousins when they are sarcastic because to her sarcasm sounds mean and she doesn't know how to be mean (sarcastic) back. 

Mary's caring heart and experience with Jack has given her a unique insight and maturity for someone her age and this is reflected in her compassion for other children with special needs. Mary always accompanied me to the trach conferences where she immediately bonded with the kids and came away from every conference with new best friends.  

Mary is intelligent, patient, slow to anger, forgives easily, refuses to gossip, is kind, is compassionate, is a loyal friend,  is selfless, is generous, is carefree, lives in the moment and is just an all around good kid and a joy to have around. I am so incredibly blessed to have this child in my life.  She and I definitely clash at times because I want certainty and order and I need to have a plan in place, while Mary just goes with the flow and doesn't worry about what tomorrow may bring.  In thinking about her future and what she wants to do with her life, Mary is not driven by what will bring her the biggest paycheck or the most prestige. Mary is driven by her heart and what she believes will bring her a life of happiness.  

Mary hasn't had it easy being the middle child stuck between two siblings with special needs. She's always had to take a back seat to the needs of Hilary and the needs of Jack.  Mary's ability to get involved in extra-curricular activities has been restricted because of our inability to "get up and go" with Jack.  Mary also has two siblings who she doesn't really have a relationship with due to their inability to communicate with her.  Fortunately, Mary has Eric - who is mostly an annoyance right now, but hopefully when they are older they will have a close relationship.  Despite her less than typical childhood, Mary has her head on straight and she got there mostly on her own.  I am extremely proud of Mary and the person she is.  I know Mary is anxious to get out of the house and away from the stress that pervades a family caring for a medically fragile child.  I just hope that Mary doesn't fly too far and that that she knows we did the best we could, we love her and we will always be here for her.

Happy 18th Birthday Mary!

It seems like just yesterday you were my sweet little girl 

and now you're a beautiful young lady

You are on your way to accomplish great things ....

Godspeed.

Love,

Mom

EOBs

In my never-ending quest to get rid of the clutter and keep my life semi-organized, I sorted through several months of EOBs (Explanation of Benefits) last weekend. I typically don't pay much attention to the EOBs because 99% of them are for Jack and we have Medicaid as secondary, so I don't need to worry too much about what is or isn't covered or what is or isn't billed correctly.  However, I took some time to read through the stack and I was absolutely floored with what doctors/DMEs/nursing agencies charge and what insurance companies pay.  The numbers are astounding.

Here are a couple of examples that caught my attention:

Trach Tube
Submitted Charges:     $3,448.00
Negotiated/Allowed:   $56.38

I don't know which is more shocking, the amount billed or the amount paid.  I'm thinking a trach is worth somewhat less than thirty-four hundred dollars and somewhat more than fifty-six.

Nursing Care in the Home
Submitted Charges:    $562.50/day
Negotiated/Allowed:  $486.70

I remember when I thought daycare for my typical kids was expensive.  $2800/week - now, that's expensive!

Oximeter
Submitted Charges:     $1,282.31
Negotiated/Allowed:   $194.75

My DME company charges over a thousand dollars a month to RENT a pulse-ox machine.  I'm okay with the amount actually allowed on this one.

Dr. W
Office Visit - submitted charges                      $258.48
X-ray of Knee - submitted charges                 $46.83
Treatment of fracture - submitted charges    $1,286.40

These charges by Jack's orthopedic doctor make me mad.  When Jack suffered his broken leg in January, we took him to the doctor's office rather than the ER.  Not only did the doctor charge for an office visit, he charged for "treatment of fracture".  Let me tell you what his "treatment" consisted of --- he took a knee immobilizer and bent it to accommodate Jack's contracted knee and then he handed it to me to put on Jack!  For this, he billed insurance twelve hundred dollars.  Unbelievable!  I like this guy, but I'm extremely disappointed in him for this.

Dr. S
Office Visit - submitted charges     $536.00
Negotiated/Allowed                       $219.47

This charge infuriates me!  You may recall that I posted awhile back about how the State was requiring some kids who have Medicaid to switch to a different program (called Children's Rehabilitation Services).  As part of this switch, your child had to be seen by the CRS doctor to officially get into the system.  So, I jumped through the necessary hoops and made the appointment.  This Medicaid doctor then proceeded to charge my private insurance over five hundred dollars for a visit Medicaid required.  Total B.S.  This charge pissed me off so much that I was going to call them on it.  But, time got away and my anger subsided and I never got around to making the call.  I also found out that we do not have to become part of the CRS program and can stay with the program we have been with all along because we have private insurance and Medicaid is our secondary.  Good thing, because if I had to see that doctor again, I'd probably have a few words for her.


Finally, I offer this one because it's so ridiculous, it's almost funny:

St. Louis Children's Hospital
Ophthalmic Exam - General Anesthesia
Submitted charges                                        $583.15
Negotiated/Allowed                                     $4,198.90

So let me get this - they bill you five hundred and you pay them four thousand?  Nothing like being paid more than seven times what you billed.

Insurance companies rank right up there with the government for being run with a complete lack of efficiency, accountability and responsibility!

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Stay tuned ... Mary's 18th birthday is later this week and I promise my "All About Mary" post I promised a year ago.  I figure if I tell you I'm going to post it, I will have no choice but to write it!

Happy Birthday Eric

Today is Eric's 9th Birthday!  Shortly after Eric was born we moved back home (to Arizona) to be near my family.  It's hard to believe that we've been home almost nine years.  Sometimes it feels like we never lived in St. Louis. We moved to St. Louis with two kids and returned to Arizona with four!

Anyway .... back to Eric's birthday.

Eric's new favorite thing to do is roller skate.  So today for his birthday, we hit the roller skating rink.  And, you'll be happy to know that we brought Jack with us and he loved it!

I brought the wrong camera lens with me, so the pictures aren't very good.  But, I thought I'd share a few anyway.

Eric is not exactly a star skater .... yet :)

I think there is a little acting going on here!

At the pizza place afterwards -

Jack isn't sure what to do with all those tickets! 

The handsome (and sweaty) birthday boy!

Eric's Street-O-Life

Last week the kids at Eric's school (and all across the country) celebrated Dr. Seuss.  As a follow-up to that, Eric had an assignment this weekend to make a map of his life.  The directions were to create a map that illustrates your life and dreams and to write a paragraph about the places you will go.  Here is what Eric came up with:

(click to enlarge)

I thought he was very creative, but wonder whether it's time to hire a therapist given that there aren't too many happy places along the Street-O-Life!  Seriously, this kid is too grown up for his own good.

Ryan House Run

Today was a beautiful day in the Valley of the Sun (aka Phoenix) and we started it out participating in the Ryan House Run.  The event featured a half marathon, 10K, 5K and 1 mile family fun run.  Eric and I (and a group of our friends) participated in the 5K (some of us walked, some of us ran!)  It was so much fun and for such a great cause.  

Pre-race 

At 6am in the morning - Eric is wondering why he agreed to do this!

A friendly leprechaun in the crowd

The kids

The scenery along the way -- stunning! 

Almost to the finish!

These two ran and finished about 25 minutes ahead of the rest of us!

Our "team" of Ryan House (and

Jack) supporters

The kids showing off their "medals" 

(made of foam, much to their dismay)

Two of the four kids in our group are former trach kids, both of whom have less than perfect airways and, yet, they walked the entire 5K (3 miles) and kept up with the best of them.  Good job Sara and Ellie! (and Eric and Orla too!)

Today was a fun day .... looking forward to the Ryan House Run again next year.  

Happy Birthday Peg!

Today is our dear friend Peggy's 60th birthday.  60!! Seriously, how can she be 60? (same way I'm almost 50, I suppose!)  Peggy was in her 40s when we first met her  .... on a warm June day back in 1999.  My long time blog followers have already heard the story of Peggy and how she almost didn't come to be one of Jack's nurses and, as a result, one of my very best friends.  For those who don't know the story, I'll share it again:

Peggy came into our lives about a week after Jack was discharged from the hospital as a baby - trached and vented - back in June, 1999. Peggy walked into our home to a scene she will always remember. Jack's night nurse and I were standing over Jack's crib, which was located in our living room, bagging him through a period of respiratory distress. What I didn't know at the time was that Peggy had made it very clear to the nursing agency she was working for that she didn't take care of kids on vents. Trachs, yes ... vents, no! Not a problem they told her, Jack was only on the vent at night (not exactly true). When she left that day, Peggy told me that although Jack was a really sweet baby, she probably wouldn't be back because she didn't take care of kids on vents. Well, Peggy couldn't stay away. She fell head over heels in love with Jack, and he with her and she never looked back. Peggy has been a significant part of Jack's and our lives ever since that day back in June, 1999.


Peggy took on the challenge of caring for medically fragile children in their homes not because she had to work, but because she has a special place in her heart for kids like ours.  Peggy didn't just come into your home and provide nursing care for your child, she embraced and cared for the entire family. She would often take "her" kids into her home for the weekend so that mom and dad can have some respite time.  When we lived in St. Louis, she always included our family in holiday celebrations with her own family because we didn't have extended family in St. Louis. She attended my kids' First Communions, graduations and special events in lieu of my own family, who lived out of state. And, as difficult as it was for her to say good-bye to "her" Jack when we moved back to Arizona, Peggy made the trek across country with us when we moved back home. Peggy and her husband have always graciously opened their home to us when we come back to St. Louis for Jack's doctors' appointments and surgeries.  Peggy is like a sister to me and it is such a privilege and a blessing to have her in my life.  If there is one thing that makes the difficulty of this life with Jack worth it -- it is the fact that we gained a friend named Peggy!

Some pictures of Peggy and Jack over the years:

Happy Birthday Peg  ~ We Love you!

Busy Week

Okay, sorry for the delay in finishing my book reviews (See post below this one for reviews). Last week was insanely busy.  Jack has had a stye on his eye for a couple of weeks that wouldn't drain and was looking infected and, because I wasn't going to drive 1500 miles to St. Louis for an eye infection, I had to break down and make an appointment with a local ophthalmologist.  We hadn't seen this particular doc in years, but he was very nice and seemed genuinely interested in helping Jack.   He noted that there is some nerve damage in Jack's left eye and the need for surgery due to high pressures may be sooner rather than later and may end up happening here instead of St. Louis.  If Jack's eye isn't better in two weeks, the opthalmologist will put him under to lance the stye and then he'll do an EUA at the same time.  If the stye heals, then he scheduled an EUA for June. It's the first time any eye doctor in this City has scheduled an EUA on Jack.  They do them routinely in St. Louis. Time will tell where we are headed on this one.

The day of Jack's doctor's appointment, I went outside to discover this on our van:

This is the second time the windows in the van have been smashed by some punk teenagers walking around the neighborhood at night (I'm guessing).  The original hole was small - like a rock was thrown through the window.  This picture is after driving on the highway to the doctor's office - the glass caved in and barely avoided getting all over Jack and his nurse. We can't park the van in the garage because it has a raised roof.  I think it's time to get video cameras on the house with a big sign that says "You are under surveillance" to deter the punks!

Oh, and here is my do-it-yourself repair job to my car following the hit-and-run last month when we were in Flagstaff:

Nice, huh? I'm sure our neighbors like living next door to the Beverly Hillbillies!

Topped off the week by spending five hours in the emergency room with this kid:

She had been having pretty severe pain in her lower back for a couple of days and we thought she might have kidney stones again.  They didn't find any kidney stones, but they did find a stone in the tip of her appendix.  Because the appendix didn't look inflamed, they sent us home with instructions to return if the pain became worse or she started vomiting or running a fever.  From what I read online after I got home, it's possible that the stone could eventually lead to an appendicitis.  So, I guess we'll be on the alert for any signs of appendicitis.

While not a week filled with earth-shattering events, it still was a busy one.  I missed a lot of work, which means I have a lot of work to make up because deadlines don't go away just because I'm not there to get the work done.  Looks like I'll be working weekends for awhile!

Hoping this next week is a quiet and productive one!

Peace my friends.

More Book Reviews

More book reviews as promised.

I just finished reading this book:

The Essence of Happiness by His Holiness the Dalai Lama and Howard C. Cutler, M.D.

 A short, simple, easy to read “reflections on overcoming suffering and obstacles to create a life of happiness”.  It's one of those books you can pick up and read over and over again when you need to re-focus and reflect on finding your “happy place” in life.

My absolute favorite reflection found in the book:

If you want others to be happy, practice compassion; and if you want yourself to be happy, practice compassion.

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Along similar lines as “The Essence of Happiness” - but with more content are two of my favorite books written by Rachel Naomi Remen, M.D.:

My Grandfather’s Blessings – Stories of Strength, Refuge and Belonging

Kitchen Table Wisdom – Stories That Heal

Dr. Remen, “whose unique perspective on healing comes from her background as a physician, a professor of medicine, a therapist and a long-term survivor of chronic illness” shares a collection of true stories in both of these books.  The stories are short, easy to read and offer many uplifting, insightful and worthwhile messages.  What drew me to this author was reading in her bio that she has trained many thousands of physicians to practice medicine from the heart and her groundbreaking curriculum “The Healer’s Art” is taught in nearly half of American’s medical schools.   Dr. Remen was a pediatrician (at Stanford University) who gave up pediatrics to counsel people suffering from terminal and chronic conditions. 

I’ve read both of Dr. Remen’s books over and over again because the stories are short and enjoyable and I learn (or am reminded) of something new each time I read them.

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How Doctors Think by Jerome Groopman, M.D.

This book was recommended to me by one of Jack’s doctors who made the book required reading for the interns and residents rotating through the PICU.  I loved this book and think it is a must read for anyone who deals with the medical profession on a regular basis.

From the inside cover of the book:

On average, a physician will interrupt a patient describing her symptoms within eighteen seconds. In that short time, many doctors decide the likely diagnosis and best treatment.  Often decisions made this way are correct, but at crucial moments they can also be wrong – with catastrophic consequences.  In this myth-shattering book, Jerome Groopman pinpoints the forces and thought processes behind the decisions doctors make.  Groopman explores why doctors err and shows when and how they can – with our help – avoid snap judgments, embrace uncertainty, communicate effectively and deploy other skills that can profoundly impact our health.  This book is the first to describe in detail the warning signs of erroneous medical thinking and reveal how new technologies may actually hinder accurate diagnoses.  How Doctors Think offers direct, intelligent questions patients can ask their doctors to help them get back on track.

It’s been several years since I’ve read this book and I could definitely stand to read it again.   I highlighted things in the book that stood out to me or that I wanted to remember.  A few of the things I highlighted:

Does acknowledging uncertainty undermine a patient’s sense of hope and confidence in his physician and the proposed therapy?  Paradoxically, taking uncertainty into account can enhance a physician’s therapeutic effectiveness, because it demonstrates his honesty, his willingness to be more engaged with his patients, his commitment to the reality of the situation rather than resorting to evasion, half-truth and even lies.  

(I couldn’t agree more!)

There is nothing in biology or medicine that is so complicated that, if explained in clear and simple language, cannot be understood by any layperson.

Laymen should understand the inherent limits and potential biases in the beholder’s eye, so that when there are important decisions to make, they can ask for another set of expert eyes.

(On why getting a second opinion is a good thing.)

This last one that I highlighted makes me laugh now.  I got the book shortly after Jack had his spinal fusion surgery in 2006.  Jack’s spine surgeon was an arrogant ass, to put it bluntly (but a good surgeon nevertheless).  I absolutely drove him up a wall with all my questions (which I know because of comments he made to other people that got back to me).  In any event, it didn’t surprise me that of the physicians interviewed for this book, the spine surgeons refused to reveal their identity:

The spine surgeons I spoke with were reluctant to be identified by name out of concern that candid answers would damage their standing in the medical community and reduce patient referrals.


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Finally, for the perfectionists like myself out there (and I can think of a few) - 

The Pursuit of Perfect – How to Stop Chasing Perfection and Start Living a Richer, Happier Life by Tal Ben-Shahar, Ph.D.

For the true perfectionists out there, this book really hits home as the author talks about the behavior of the perfectionist.   The author discusses the difference between the Perfectionist and the Optimalist. 

The Perfectionist views life’s journey as a straight line.  The Optimalist sees it as an irregular spiral.

The Perfectionist is afraid of failure.  The Optimalist uses failure as feedback. 

The Perfectionist is rigid, critical and defensive.  The Optimalist is adaptable, forgiving and open to suggestions.

The Perfectionist focuses on the “destination”, setting goals that are overly ambitious or unobtainable. The Optimalist focuses on the journey and the destination. 

According to the author, by rejecting the all-or-nothing thinking of the Perfectionist and embracing the more nuanced, complex mind-set of the Optimalist, we can learn to accept our failures along with our successes and lead much happier lives.

The book has a lot of good exercises.  One that I found to be particularly useful – and one that I try to use when I get irritated with myself because I did or said something stupid or less than "perfect" - is the PRP Process. The PRP Process involves giving yourself permission to be human,  reconstructing the situation and gaining a wider perspective. When applying the PRP Process to a particular event:

1.                  Give yourself permission to be human: acknowledge what happened as well as the emotion that you are feeling as a result.

2.                  Reconstruct the situation.  Ask yourself what positive outcomes the situation can have.  This does not mean you are happy about it, but simply that there are benefits that can be derived from it. Can you lean something new? Can you gain a new insight in yourself or others? Can you become more empathetic or more appreciative of what you have in life?

3.                  Finally, take a step back and gain a wider perspective on the situation.  Can you see the situation in the larger scheme of things?  How will you see the situation a year form now? Are you sweating the small stuff?

The PRP Process really does help by putting things into perspective.

This book is a very good read for the perfectionist personality.

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That concludes my reviews for the books I've read recently, as well as my favorite books to date.  As you can see, I'm not really into reading novels or fiction.  Although, I do like a good Nora Roberts book on occasion. I mostly read to learn and to try and improve myself, not so much to escape.  Maybe that's my problem.  I should read to escape more, eh?

Visitors

Sorry, I didn't have time to write my next book review, as we had visitors tonight.   

Holly - one of Jack's former St. Louis nurses - and her family are in town for the week and they stopped by for a visit.  Holly was Jack's primary nurse for the first year and a half of his life.  She was an awesome nurse and taught me so much in those early days.  These days, Holly keeps busy with her very busy household of boys!  We love Holly and her family and appreciate that they always take the time to stop by when they come to Phoenix.  

Thanks for staying with me on my previous book reviews.  You guys are the best!

Book Reviews

Book Reviews (simply my opinion).

Four Walls of My Freedom by Donna Thomson

This book is written by a mother who recounts life raising her son who has cerebral palsy and requires 24/7 care.  Her son is now 22 years old and he spends the majority of his time in bed because it is where he is most pain-free.  When I bought the book, I thought it would be more about how the author’s son finds happiness and value in his life despite being bedridden. While the author does touch on her son’s present life, she talks mainly about her son’s life growing up – his schooling, social interactions, his many hospitalizations and surgeries and the challenges faced to get him the services and care he deserves.  The author and her family currently live in the UK, but have also lived in Canada – so her perspective of the services her son received and services she believes he should receive as an adult are looked at from a national healthcare system perspective – which I don't have experience with.

Several points in the book that I flagged as noteworthy:

Something called the “Capability Approach” which focuses on the kind of life that people manage to lead and whether that life has value to the individual, from their perspective, not ours.  For example, some people (including myself) may ask how can Jack be happy when all he does is lay in bed all day. But, from his perspective, he is loved, pain-free, well cared for and entertained every day and that is all he needs to be happy and have a life of value. (Of course, I’m just surmising this, as Jack has never actually told me how he feels – I can only base it on what I observe.)

When talking about mothers of children with severe disabilities, the author states:

“It is a paradox that in order to be free, the mother of a child with severe disabilities has to relinquish the choosing self.  I can remember thinking more than once, Okay, I give up.  I give up on imagining that I have a life.” … “It is ironic and paradoxical that the key to surviving the experience of caring for someone as dependent as my son means giving up on freedom of choice. The capabilities of my family cannot be measured on the same scale as others – it‘s part of our job as people who love someone who is very dependent to redefine happiness and achievement.”

“Mothering a child with medical needs is a very public but lonely endeavor.  Public, because a myriad of professionals weigh in with opinions on how Nicholas should eat, breathe, talk, sit and even be held, but also lonely because all these prescribed therapies are carried out with your child alone at home. There are no neighborhood mother-toddler groups for young children with severe disabilities.”

What I found most interesting was the author’s belief that she has a moral right to the freedom to grow old without being her son’s caregiver 24/7.  “A retirement of sorts, a hope of not changing my son’s diapers when he is forty-five and I am past eighty is a moral ‘right' in my view.”  In this regard, she believes that the community, the government and the families have to come together to find a way to care for people with disabilities (as well as the elderly).

I’m not sure I agree that we are "entitled" to be released from the burdens of caring for our children. Perhaps when our “children” are forty-five and we are eighty, it may be necessary, but I'm not sure it's our right.  I can't even imagine having to put Jack’s care totally in the hands of someone else. I suppose when he’s twenty, I will think differently, but right now, I can’t even “go there”.

Okay, so this book review is way longer than I intended. You still with me?

In summary, I will say that the book was an interesting read, but it had more of a political slant to it rather than being a human interest story.  I prefer the latter.  The book definitely gave you pause and food for thought, so it was worth the read.

When Bad Things Happen to Good People by Harold S. Kushner

This book was written by a Rabbi whose son was diagnosed with a degenerative disease when he was three years old.  His son died when he was in his teens.  The book primarily focuses on God and prayer and the relationship between the two.  Interestingly, the author believes as I do, that God doesn’t answer specific prayer requests.  (See, “The Tough Question” under Blog Thoughts on my sidebar).  The author discusses how prayer does serve a purpose, but not in the way that many people believe it does.  I’m in agreement with the Rabbi for the most part in this book, except for his belief that God doesn’t answer our prayers because some things are too big for even God to handle.  I think God can handle whatever he chooses to handle, but he’s decided some things are best left for us to handle without his intervention -but with his support and guidance.

An excerpt that is good food for thought:

“Everyone is our brother or sister in suffering. No one comes to us from a home which has never known sorrow.  They come to help us because they too know what it feels like to be hurt by life. 

I don’t think we should confront one another with our troubles.  (You think you’ve got problems? Let me tell you my problems, and you’ll realize how well off you are.”) That sort of competitiveness accomplishes nothing. It is as bad as the competitiveness that spawns sibling rivalry and jealousy in the first place. The afflicted person is not looking for an invitation to join the Suffering Olympics. But it would help if we remembered this: Anguish and heartbreak may not be distributed evenly throughout the world, but they are distributed widely. Everyone gets his share.  If we knew the facts, we would very rarely find someone whose life was to be envied.”

I’m not sure the book ever really answered the question “WHY" bad things happen to good people.  I wasn’t overly impressed with the book, but it was an easy read and if I took away one positive point from the book (which I think I did), it was worth the read.

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It’s late, so I’ll have to give you my review of “The Essence of Happiness” tomorrow. I’ll also share a list of books that I’ve read over the years that I really like.  No more long book reviews though, I promise!

Seriously, are you still with me?!

Final Resting Place

A few weeks ago, my sister called to tell me my mom's headstone came in and was placed at her gravesite. I've only been out to the cemetery once since my mom died and it wasn't too difficult because her grave wasn't marked, so who knew if I was even looking at right spot in the ground.  Today was a little harder because it was all right there in black in white ...

It sort of takes your breath away.  My dad jokes and says that we are good to go now, all we have to do is throw him in there with my mom.  Let's just hope it's not anytime in the near future! Did I mention that my sisters and I are going to Ireland this summer with my dad? We are taking a couple of our kids with us and we'll be there for about ten days.  After my sisters and I head home, the grandkids and their grandfather will spend an extra week traveling Ireland together.  Should be a memorable summer for all of us.

I am working on a book review post for the three books I've read over the last two weeks. I had hoped to have it finished for tonight's post, but I went to my sister's tonight for dinner and after a few sangrias, my brain isn't in any condition to compose a meaningful post. But tomorrow .... I promise!

The three books I've read are:

-The Four Walls of my Freedom by Donna Thomson
-When Bad Things Happen to Good People by Harold S. Kushner
- The Essence of Happiness by the Dalai Lama and Howard C. Cutler, M.D.

Stay tuned and thanks for checking in!

I Feel Like I Need to Post Something

I returned today from spending a few days in Ohio with my friend Anne.  It was so nice to sleep in a comfortable bed with peace and quiet all around.  No baby monitor, no swooshing of the vent, no suction machine, no demands.  Something all of us moms need every once in awhile.  I didn't take my computer and I didn't take my camera. So, I've got nothing to share.

Everyone survived in my absence (not that I was worried).

It's back to reality tomorrow tonight the second I walk in the door.

Unfortunately, I've got nothing new, nothing exciting and not even any pictures to share.

But, I really do appreciate all of you who check in on us.

We are all well.

Except for Mary.  She has an eye infection (in addition to the flu that won't seem to go away), so Mark took her to the pediatrician today.  The last time our pediatrician saw her was in 1995*.

Okay, so, I don't do well-checks.  Is that so wrong?

(*she's been to the doctor since 1995, just hasn't seen our primary pediatrician since before we moved to St. Louis).

I've been doing a lot of reading lately.  I'll have to share some of the books I've read and give you my take on them.  Some good stuff! (Thanks Caty!)

More later ... thanks for checking in.

Checking In

It's been a while.  Not much going on ....

Except ...

The flu is back. Underneath that blanket is a sick Eric.  It's been a cyclic flu season.  Seems Eric gets better for a week or so and then he gets sick again.  Eric is not happy that his sick times have coincided with Christmas break and weekends.  So far, he's not missed much school.  

Woody has a broken leg and ....

 . . . so does Jack! 

(casted Woody courtesy of Jack's nurse, Kristi)

As I've mentioned in the past, Jack's bones are very fragile and it doesn't take much to cause a break.  We took Jack directly to his orthopedic doc instead of going through the ER and, initially, I wasn't happy when he didn't cast him.  He was just going to send us home without anything until I mentioned that Jack needed some support when he is transferred from his bed to chair.  He gave us an ill-fitting splint, but it seems to be doing the job.  I emailed Jack's neurologist and asked her if it was common to not cast breaks for non-weight bearing kids.  She reassured me that fractures are common in kids like Jack and that it's typical to only splint - not cast.  Jack is on the mend and isn't in any pain (provided we are very careful with his leg).  Unfortunately, breaks are a big concern with Jack and, no doubt, there will be more in the future.  

We closed out this weekend watching a great Super Bowl game. I'm not necessarily a fan of the Packers, but I'm definitely not a fan of the Steelers, so I was happy with the outcome. :)  

a birds-eye view of everyone watching the game

 

(my dad had his hand on Jack the entire time he was sitting next to him -- very sweet)

I'm heading to Columbus, Ohio next weekend to visit my friend Anne.  I'm not so sure about the timing, Columbus in February = snow.  Hopefully there won't be any weather delays.  

That's the update from here. Thanks for checking in!

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This is the true joy in life, the being used for a purpose recognized by yourself as a mighty one; the being thoroughly worn out before you are thrown on the scrap heap; the being a force of nature instead of a feverish selfish little clod of ailments and grievances complaining that the world will not devote itself to making you happy.

(George Bernard Shaw)