Wednesday, March 31, 2010

Eric's Dream

Eric never ceases to make me laugh.  Yesterday he brought home this really cool book that is a compilation of essays written by all the kids in Eric's class about their dreams.  Eric's dream is "to go into space and possibly discover a new planet."  What made me laugh was the end of his essay where he says that the effect his dream would have on him is "for once in my life I would be doing something important and decent." Seriously, shouldn't an eight year old just be playing with legos and having fun, not worrying about doing something "important and decent" with his life?  He makes me laugh ... and he kind of scares me too!

Book cover

Saturday, March 27, 2010

Open House Pictures

For those of you who aren't on Facebook with me, here are pictures from the Ryan House open house. What an amazing place! 

Great Room


Jack will be able to use the pool because they will have a special harness to hold him in the chair  - he will love it!

One of the themed rooms for the kids with a place for the parent to sleep if they want

wheelchair accessible playground

What I didn't get pictures of (because it felt weird walking around taking pictures) was the sensory room, media room, art room, music room, meditation room and family suites.  I will definitely feel comfortable leaving Jack at this place.  Parents can stay the entire time with their child if they want or they can come and go or they can leave their child and not stay at all - whatever they are comfortable with.  Eric asked if we could check in on Monday! 

Wednesday, March 24, 2010

Ryan House

This Saturday we will be attending an open house for Ryan House.  I first heard about Ryan House about six years ago - although I can't remember how I heard about it.  I contacted Ryan House because of the similar missions the Ryan House and The Willow Tree Foundation shared  ----  Respite.  The Willow Tree Foundation provides respite opportunities for parents by financing respite activities.  Ryan House provides respite opportunities by providing a place for children to stay so that parents can have some respite.  When I first heard about Ryan House, it didn't occur to me that it might be a place for Jack, me and our family.

I talked with Ryan's dad (the founder, along with his wife, of Ryan House) about how the idea for the Ryan House came about.  His son, Ryan, has spinal muscular atrophy and they were living in England when Ryan was born.  Apparently (and my friend Julie can let me know for sure), respite facilities are quite common in England.  When they moved to Arizona, they brought their vision and commitment to establish the same type of facility they saw in England with them.

I believe Ryan House originally hoped to open sometime in 2006.  However, 2006 came and went, as did 2007.  Ryan House's ability to become a reality was one hundred precent dependent on contributions and donations and the process was a slow one.  In an effort to get the "show on the road", Ryan House partnered with Hospice of the Valley.  The mission of Ryan House was expanded to provide not only a place for respite but also a place for end of life care.  In 2009 construction of the Ryan House finally commenced and the Ryan House will officially open its doors for respite on Monday, March 29, 2010.

2009 was also the year it occurred to me that Ryan House might be a place that I could take advantage of.  Six years after I first learned of Ryan House .... six exhausting years of caring for a medically fragile child ... I finally conceded that I might actually, maybe, possibly could leave Jack in a "facility" and in the care of strangers for several days.  But, the guilt ... oh, the guilt (for just thinking it, let alone actually doing it.)

Ironically, my brother-in-law was recently hired by Hospice as the Facilities Director and he's been spending a lot of time at Ryan House the last month as it was getting ready to open.  He tells me Ryan House is "amazing".  There is no question that it's a state of the art, class act all the way around. I'm excited and scared at the same time.  No, I'm not ready to drop Jack off and head to the Bahamas for a week.  But, I am willing to go to the open house on Saturday and then ease into the possibility of leaving Jack there for a weekend here and there.  I was told that they want the parents to stay the first time the child stays at Ryan House so that they are available if needed.  Ryan House has sleeping rooms for  those parents who want some rest, but who don't want to leave their child.  They can sleep knowing that their child is down the hall if they want to check on them.

I feel very fortunate to have a place like Ryan House here in Arizona (especially considering how behind the times we are when in comes to pediatric healthcare).  It's a unique opportunity and I'm looking forward to giving it a try.  

Ryan House did a story on Jack in their most recent newsletter.  Most of you all know Jack's "story", but if you want to check it out, here is a link to the Newsletter:


All qualifying families receive 28 days per year, free of charge, to spend at the Ryan House.

Thursday, March 18, 2010

Happy Birthday Mary

Happy 17th Birthday to my sweet Mary!

 In California Adventure/Disneyland

Mary commented to me a couple of months ago that I never blog about her -- only Jack, Eric and Hilary (she's my only kid who regularly reads my blog). There is so much I can share about Mary and what a remarkable person she is.  One of these days, I will write an "All About Mary" post.  Stay tuned ...

I wish I could say my week of R&R has been just that, however, that's not been the case because Jack is still sick and has been giving Mark a run for his money.  I'm furious with my nursing agency right now (so much so that it's 2am and I can't sleep because I'm still fuming).  Apparently, they think because I'm out of town, they have permission to call Jack's doctor regarding him.  (As far as I know, no one actually made the call, they just discussed it).  I made it very clear that I make the call as to when Jack's doctors are called and then I make the call.  I've got a lot to say on this subject too, but it's probably not a good idea to write it all out when I'm angry.  So .... stay tuned for that too! :)

Oh happy day! 

Sunday, March 14, 2010

Celebrating March Birthdays

All the cousins celebrating March (and one February) birthdays

In Lego heaven

 A little basketball at the park

watching from the sidelines

Mary and I are headed to California tomorrow.  I'm so looking forward to (and desperately need) a few nights of uninterrupted SLEEP! Yet, I truly hate leaving Jack.  I worry so much about him when I'm gone (I worry about him when I'm home too, but not as much).  He's feeling better and I'm sure everything will be fine ... but, I'm still going to worry.

May you all have a restful week . . . thanks for checking in.

Friday, March 12, 2010

Happy Birthday Eric!

Happy 8th Birthday Eric.  

Time flies so very fast.  It seems like only yesterday ...

you were two.

and now you are in second grade!

You are my most challenging child, but also the one who always has us laughing.  You are the perfect exclamation point at the end of our family!


Eric's "Second Grade Reflections" from his student led conference yesterday


Jack is on the mend. He's off the oxygen and is much happier this week.  Yeah!

Friday, March 05, 2010

Friday Fotos

Friday night at the Ranch

Checking Facebook and making plans for the night

Engrossed in his DS 

Just taking it all in

Just wanting to feel better

Still requiring Os

20-day course of antibiotics, $5000 boxes 
of TOBI aerosols and Probiotics to counter 
the 20 days of antibiotics
(the bottle on the right is my Rx)


Hilary spent her Spring Break visiting her cousin Bridget in New Jersey.  She took the train from Rochester, NY to Penn Station in NYC.  As usual, I was nervous that Hilary would have trouble navigating her way and, as usual, she did just fine and had a great time with her cousin. She heads back to Rochester tomorrow.  My niece sent me these pictures today of their time in NYC.

They saw Mary Poppins on Broadway. 
I heard it was awesome!

Since my niece wasn't in any of the pictures -- 
here's a picture of Bridget and her boyfriend Joe
taken when they were in Phoenix a few weeks ago.
(Thank you Bridget for taking Hilary in this last week!)

Have a great weekend!!

Tuesday, March 02, 2010

It's a Matter of Principle

Every so often on this journey as the parent of a child with too many other people involved in his (and our) life, I reach my breaking point with all of it and I say .... enough.  If you recall, a couple years ago I'd reached my "enough" point with the school district, the nursing agency and the our DME company.  Today it was the nursing agency and Jack's speech therapy company.  (This is partly a repeat for those of you who read the message board).

Nursing Agency

Every month a Plan of Treatment gets sent to me from Jack's nursing agency. I typically just stick the paper in his chart without looking at it. However, this weekend I took the time to read through it. In addition to finding a bunch of inaccuracies (including Jack's age), I read that the agency designated Jack's "Disaster Classification" as a "2" which means: "patients requiring moderate level of skilled care that should be provided the day scheduled if possible, but the patient would not be at risk or be in discomfort."

Since when does a child on life support with an artificial airway require a "moderate level of skilled care"?  (whatever that is).  Apparently, if a disaster strikes our area, Jack will be fine for a day or two without having his vent on or his airway suctioned - without risk or discomfort.

Today I called the nursing agency for an explanation.  The explanation I got from the nurse manager was that "no pediatric patients are Level 1 because they have a responsible person who can care for them". I wasn't buying it. She put me through to someone higher up on the food chain and I pretty much got the same explanation. I told her I still have two problems with this: (1) the wording of Disaster Classification 2 does not state that - it states that my child only requires a moderate level of care and would not be at risk or discomfort - which is completely incorrect; and (2) what if I die in this disaster? I'm not there to provide the care - then what?

I was told that the classification was for internal purposes only and that they know that my child is on a vent and that, in a disaster situation, they would immediately make contact with us and make sure we are available to care for Jack - if not, they would send out a nurse.


Except for the part that states my child requires a moderate level of skilled care and would not be at risk or be in discomfort. I asked her to remove the language from his Plan of Treatment.  At the end of the day, it's not that important if it's for internal purposes only, but it still bothers me because, as written, the classification is wrong as it pertains to Jack.  I want it out as a matter principle.

Speech Therapist

The only therapy Jack has been receiving for the last few years is speech therapy through our Department of Developmental Disabilities.  Once Jack got his eye-gaze system, we needed - and found - someone who could work with him on it.  We've had this person for the last year and a half. I get so many EOBs every month and after all these years, I usually just throw them in a pile and eventually read through them ... or not.  Usually in the beginning of the year, I do read them to make sure the deductibles are correctly applied  A couple of the EOBs were from the agency that provides Jack's speech therapy.  I guess I never paid attention in the past, because I was shocked to see that they are billing insurance $400 per hour. Unbelievable.  I called their office and asked their billing person why they think they are entitled to bill $400 per hour for speech therapy services.  Rather than answer my question, the woman tells me "we never get paid that much anyway".  Oh, so that makes it okay to bill an unconscionable amount of money?  

I also noticed that they billed for two separate days each week, when they only come once a week. When I asked her about this, she told me that because they come 2 hours a day (which, incidentally, they do not) and they can only bill one hour a day, they just bill the other hour on a separate day ... a day they did not provide services.  What's amazing to me is that the person I spoke with sees no problem with the exorbitant hourly rate or the fraudulent billing practice.  

I'm done with them. I cancelled Jack's speech therapy today. I've always maintained that "righting" the system is not my mission, however, I will not willingly participate in or promote what I believe to be wrong.  It's a matter of principle.

As far as Jack is concerned, his therapist was getting bored with him and his lack of progress and wasn't doing anything of substance when she was with him anyway, so he's not really missing out on any meaningful therapy.


Thanks for your well wishes for Jack.  We got him started on antibiotics and hopefully once they kick in he can get off the Os and his heart rate will start coming down.  It was a rough week last week because Kristi was out and it's never good for Kristi to be out when Jack is sick because she knows him so well.  


In case you can't tell, I'm tired and irritated at the world right now. It's time for a vacation.  Mary and I decided not to go to St. Louis during Spring break and instead, we're heading to California for a week of R&R.  It can't come soon enough. 


In matters of principle, stand like a rock; 
in matters of taste, swim with the current.  
~Thomas Jefferson

Monday, March 01, 2010

I've Tried

I've sat down and tried to write a meaningful post all weekend.  But, alas, the words aren't flowing.  Jack is sick and I've spent most the weekend suctioning and stressing out over Jack's high heart rate (no fever though).  It's been a while since he's been this sick and required this much constant attention (suctioning, diapering, cough assist, breathing treatments, vest, oxygen, yada, yada, yada).

I'm tired.  

More later ... thanks for checking on us.