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

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

Kitchen/dining

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! 

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:

Newsletter

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

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! 

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.

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 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!!

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 Tracheostomy.com 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.

Fine.

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

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.

Normal Day

Normal day, let me be aware of the treasure you are.  Let me learn from you, love you, bless you before you depart.  Let me not pass you by in quest of some rare and perfect tomorrow.  Let me hold you while I may, for it may not always be so.  One day, I shall dig my nails into the earth, or bury my face in my pillow, or stretch myself taut, or raise my hands to the sky and want, more than all the world, your return.  

-Mary Jean Iron


_______________________


This weekend was just another normal manic weekend. So much to do and not enough time to do it.  Working full time and not getting home until late in the evening five days a week leaves all the running around for the weekend.  Add to all the normal stuff that has to get done every weekend, a home improvement project* that I started a few weeks ago and that had to get done this weekend, and it was an extraordinarily manic weekend.  All the while I'm hither, thither and yon trying to get everything done before Monday arrives (unsuccessfully, I might add), poor Jack got very little of my attention.  Alas, my normal includes a little boy who patiently and silently waits for me to feed him, suction him, reposition him, give him something to hold, change the TV channel, put in a new movie and give him a hug and a kiss in passing.  But, the fact that I can do all that and still manage to get out of the house and get things done, counts as a good weekend in my book. 

That's my normal and I'll take it ... and treasure it.

_______________________

May you all have a week filled with normal days that can be treasured.

_______________________

*I decided to re-do one of our upstairs bathrooms.  I had this great idea of ripping out the old sink and the wall mirror and re-painting, re-tiling, and putting in new sinks and new mirrors all.by.myself. Problem is, I got stuck at the "taking out the old sink" stage because of plumbing problems.  Fortunately, I have a fabulous brother-in-law who knows how to do all that stuff and he (and Mark) helped get the old sink out and the new sink in. I managed to get the painting done and we paid someone to put the new flooring in. The end product is a beautiful new bathroom finished just in time for my friend Anne, from Ohio, to come visit next weekend!  

President's Day

Today being President's Day meant a day off of work ... and I actually took it off (which is unusual for me). The Arizona weather is spectacular this time of year and we took advantage of it by going to the Renaissance Festival.  We didn't take Jack because there was a lot of gravel (not wheelchair friendly) and a lot of dust (not trach or vent friendly).  Too bad the event isn't held some place where there is pavement because I know Jack would have loved it.  

Just some pictures from our day .....

___________________________

By the way, I asked Eric what he hoped Jack had hope for and he said "that he lives a long time".


Have a great week my friends!

The Brothers

The Picture

The Story

Jack has quite the variety of music and entertainment on his iPod thanks to Mark.  One of Jack's favorites is a comedy act by Brian Regan.  I have no idea who the guy is, but his routine is very funny (and clean).  It's so fun to hear Jack laugh while listening to the "Best of Brian Regan".  Eric apparently loves Brian Regan too because when I turned on Jack's iPod and was getting ready for "lights out" for Jack, Eric asked if he could sleep with Jack.  Eric likes to hang out in Jack's room, but he's never asked to sleep with him.  Sure enough, after listening to a little Brian Regan and reading a few chapters of that fine literary work known as Diary of a Wimpy Kid, Eric fell asleep in Jack's bed.  It goes down as one of the those sweet moments I will always cherish.

Another sweet brothers' moment is Eric's Valentine's Day card for Jack.  He was filling out his Valentine's Day cards for his class tonight and I found this card lying next to Jack on his bed.

Pretty profound for a 7 year old. I wonder what Eric hopes Jack hopes for?  I'll have to follow-up on that one.

Our Special Family

"God doesn't give children with special needs to strong people; He gives children with special needs to ordinary, weak people and then gives them strength. Raising a child with special needs doesn't TAKE a special family, it MAKES a special family."

The above saying made its way around Facebook this week and it got me to thinking, especially the last sentence.  A common statement by parents (myself included) of children with special needs is how blessed we are to have our special children. I am blessed to have Jack in my life because he is my child.  I am blessed because Jack lives.  However, I am not blessed because Jack has special needs. I would have been equally as blessed had Jack been born healthy.

Every child brings to a family his or her own unique beauty, gifts, lessons, hardships and joys. A child with special needs simply amplifies and accelerates the impact. Perhaps the unique “blessing” a child with special needs brings to a family is perspective. Perspective to appreciate a healthy child, a beautiful sunset, small victories and a full night’s sleep. Perspective to appreciate that all parents are blessed and all children make a special family. 

Admittedly, I’m particularly sensitive to the emphasis on the specialness of children with special needs because I have children who are sensitive to the emphasis on the specialness of their siblings with special needs.  I’ve been reprimanded on more than one occasion by my non-special needs children for not acknowledging often enough the specialness they too bring to our family.

Yes, I am blessed. 

I am blessed to have four children, who, in their own unique and special way, make our very special family.  

Right there in Black and White

The organization Cure CMD recently established an International Registry which was created to identify the global CMD population for the purpose of raising awareness, standards of care, clinical trials and, hopefully in the future, a treatment or cure.  I decided I should probably register Jack because it's the right thing to do.  Typically, I wouldn't participate in this type of thing because I try to stay as far removed from anything to do with muscular dystrophy as I can.  I've declined membership into MDA and Jerry's club for years.  (As if not participating in anything muscular dystrophy related makes it not so in my life.)  However, because Jack's neurologist is actively involved with Cure CMD and because I've had the opportunity to work with the founders of Cure CMD on several projects, I feel a connection (and responsibility) to this particular group.

As part of registering Jack on the Cure CMD International Registry, they ask their registrants to provide documentation to support the diagnosis.  I requested that Jack's muscle biopsy report from 2005 be sent to the Cure CMD genetic counselor. I also requested a copy be sent to me.  

Not such a good idea.

"H&E shows severely abnormal muscle with prominent replacement by fat."  

Well, that sucks.

"Congenital muscular dystrophy is more likely than a progressive muscular dystrophy given the mild pattern of active myopathic changes"

Despite the obvious, I've never fully wrapped my head around the reality that my kid actually has muscular dystrophy.  But right there in black and white are the words I refused to believe for so many years - Muscular Dystrophy.   Absolutely, undeniably, no doubt about it.  

That double sucks.

The fact that his disease is considered non-progressive is a double-edge sword as far as I'm concerned.  (and I'll leave it at that for now).

I remember in the beginning of this journey, all I wanted was information.  Now, I just want to bury my head in the sand and ignore the information available because I don't like what I'm hearing.  

Anyone want to join me on my trip to the island of ignorance is bliss?

________________________

Be ignorance thy choice,
where knowledge leads to woe.

James Beattie

Race Day

Eric had his first running club inter-district race today. It was a lot of fun and Eric did great. It was a two mile course and grades Kindergarten through 6th graders from about five different schools participated. They gave ribbons to the top five runners for each grade (boys and girls). Eric didn't finish in the top 5 for his grade, but he did well. Out of at least 500 runners (all grades) he finished #186. I think running is the perfect sport for Eric and I'm hopeful he'll stick with it.

_____________________

Pre-race 

READY

SET

GO!

I almost missed him in the pack of runners 

at the beginning of the race

Coming around the last corner towards the finish

(they ran through the neighborhood near the school that hosted the race)

Everyone was rewarded with a popsicle

Enjoying the popsicle and contemplating his race

Yummy, that was good!

"So, how'd you do?"

Extremes

As another weekend comes to an end, I am reminded - despite my previous post - that sometimes, silence is golden. God blessed me with one child who does not speak and another child who does not stop talking! Such is my life .... a life of extremes.

Thank you all for your sweet comments.

__________________

I was uploading all my pictures to my Mobileme gallery this weekend and I came across these pictures. Here's trouble and cuteness at its best.

Circa 2003

They grow up all too fast, don't they?

_________________

My life has a superb cast 
but I can't figure out the plot.  
~Ashleigh Brilliant


I second that!