Monday, March 28, 2011

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!)

Wednesday, March 23, 2011

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!

Friday, March 18, 2011

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 ....



Tuesday, March 15, 2011


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!

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!


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!

Saturday, March 12, 2011

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!

Sunday, March 06, 2011

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.

Saturday, March 05, 2011

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.  

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.  

Tuesday, March 01, 2011

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!